Even though he’s a match, past mistakes prevent a dad from donating a kidney to his son

Even though he’s a match, past mistakes prevent a dad from donating a kidney to his son

Kidney donation A Georgia man’s criminal history is currently being used to prevent him from donating a kidney to his son, a life-saving treatment for the toddler. Anthony Dickerson’s 2-year-old son, AJ Burgess, was born prematurely without a functioning kidney. He currently weighs 25 pounds, is in and out of the hospital, and even suffered a… (more…)

Spousal Impoverishment and Why It Makes a World of Difference for Married Seniors

Spousal Impoverishment and Why It Makes a World of Difference for Married Seniors

Medicaid is one of the most misunderstood health care programs available to Americans. This is a real shame because many needy people are missing out on accessing their benefits. For caregivers of the elderly and the disabled, Medicaid’s programs can make the difference between surviving economically or being completely overwhelmed by costs of long term care for a loved one.

Spousal impoverishment rules are a godsend for older couples when one of them needs personal care services indefinitely. They offer a method to protect joint wealth and income while qualifying the unhealthy husband or wife for care services. Recent changes made by the Affordable Care Act (a.k.a. Obamacare) also significantly broaden these protections for married couples.

Unfortunately, government websites often do a poor job of explaining how these rules work and researching the regulations can leave the non-professional even more confused. Even many lawyers and social workers are uninformed about these important exemptions to Medicaid’s asset and income limitations.

When do the spousal impoverishment rules apply?

These are federal rules that apply when married couples are seeking Medicaid benefits for only one spouse. They only work when someone is needing long term care. These rules do not apply to regular Medicaid programs that provide health insurance benefits for individuals under 65 and non-disabled individuals. They also do not apply when both spouses simultaneously need long term care benefits.

What is long term care?

Long term care means that the individual needs personal assistance with usually two or more of the activities of daily living, such as bathing, dressing, toileting, eating, and transferring (getting out of a chair or a bed by themselves). Long term care can be provided in a variety of environments: at home, in an assisted living community, in a daycare center, or a nursing home with skilled medical staff on site 24 hours a day.

What are the eligibility criteria for long term care benefits from Medicaid?

Remember that Medicaid is administered by the states so each state has slightly different rules when it comes to qualifying for long term care Medicaid benefits. However, there are some general basics that are similar in all states. Individuals who have been assessed to need long term care through demonstrating their need for assistance with several of their activities of daily living will have to meet the financial criteria. These are income and asset restrictions.

What are the rules without spousal impoverishment protections?

Applicants for long term care benefits in most states must not have more than $2,205 per month in gross monthly income. Most states restrict assets at $2,000. This means that the applicant cannot have more than $2,000 between all their financial accounts, i.e. checking, savings, CDs, money markets, brokerage accounts, retirement accounts, and the cash value of life insurance. Effectively, you must have spent all your lifesavings before you can become eligible for Medicaid’s valuable financial aid.

What happened before there were spousal impoverishment protections?

Before Congress modified these financial requirements for Medicaid, married couples would have to spend all their joint wealth on one spouse’s care, leaving nothing for the other spouse to live on. This was an impossible situation for spouses and many had to have a “Medicaid divorce” to avoid the economic devastation. Spousal Impoverishments rules created a series of exceptions to the financial requirements so that the spouses could save some of their nest egg and protect some of their income.

What are the income protections for spouses?

Income protections guarantee that income in the non-applicant’s name is not counted when only their wife or husband applies for Medicaid. Income protections also help to boost up the income of a lower earning spouse when their higher earning spouse enters Medicaid. The exact amount of monthly income set aside for the non-applicant spouse will vary from state to state, but the figure will not be below $2,002 in the lower 48 and could be as much as $3,005 per month in 2017.

What are the asset protections for spouses?

Spousal impoverishment asset protections can reserve up to $120,900 for the at-home spouse. However, the details are more complex. Most states have rules that say that only one-half of the total countable wealth can be allocated to the non-applicant spouse, up to the maximum of $120,900. At a minimum, spouses will not have to spend funds that are less than $24,180.

States will often perform a Community Spouse Resource Assessment in which they count all the funds available to the couple and then determine how much can be set aside for the spouse. Sometimes these assessments are just done as part of the Medicaid application.

When to get help?

Because couples often have more money and more ways to save, they have the most to gain from working with a Medicaid planner. For example, the set of decisions around how to protect the home can be complex and are fraught with pitfalls if things are not done in the right order. Spouses of Medicaid enrollees also have a set of unique challenges when doing estate planning.

Elder Care Resource Planning is family business offering benefits planning services in all 50 states. They offer free initial consultations for families to plan for long term care Medicaid to make the most of the spousal impoverishments rules.

Absent Federal Action, States Take The Lead On Curbing Drug Costs

Absent Federal Action, States Take The Lead On Curbing Drug Costs

Lawmakers in Maryland are daring to legislate where their federal counterparts have not: As of Oct. 1, the state will be able to say “no” to some pharmaceutical price spikes.

A new law, which focuses on generic and off-patent drugs, empowers the state’s attorney general to step in if a drug’s price climbs 50 percent or more in a single year. The company must justify the hike. If the attorney general still finds the increase unwarranted, he or she can file suit in state court. Manufacturers face a fine of up to $10,000 for price gouging.

As Congress stalls on what voters say is a top health concern — high pharmaceutical costs — states increasingly are tackling the issue. Despite often-fierce industry opposition, a variety of bills are working their way through state governments. California, Nevada and New York are among those joining Maryland in passing legislation meant to undercut skyrocketing drug prices.

Maryland, though, is the first to penalize drugmakers for price hikes. Its law passed May 26 without the governor’s signature.

The state-level momentum raises the possibility that — as happened with hot-button issues such as gay marriage and smoke-free buildings — a patchwork of bills across the country could pave the way for more comprehensive national action. States feel the squeeze of these steep price tags in Medicaid and state employee benefit programs, and that applies pressure to find solutions.

“There is a noticeable uptick among state legislatures and state governments in terms of what kind of role states can play in addressing the cost of prescription drugs and access,” said Richard Cauchi, health program director at the National Conference of State Legislatures.

Many experts frame Maryland’s law as a test case that could help define what powers states have and what limits they face in doing battle with the pharmaceutical industry.

The generic-drug industry filed a lawsuit to block the law from taking effect, arguing it’s unconstitutionally vague and an overreach of state powers. A federal court judge on Friday denied their request for an injunction.

The state-level actions focus on a variety of tactics:

“Transparency bills” would require pharmaceutical companies to detail a drug’s production and advertising costs when they raise prices over certain thresholds.
Cost-limit measures would cap drug prices charged by drugmakers to Medicaid or other state-run programs, or limit what the state will pay for drugs.
Supply-chain restrictions include regulating the roles of pharmacy benefit managers or limiting a consumer’s out-of-pocket costs.

A New York law on the books since spring allows officials to cap what its Medicaid program will pay for medications. If companies don’t sufficiently discount a drug, a state review will assess whether the price is out of step with medical value.

Maryland’s measure goes further — treating price gouging as a civil offense and taking alleged violators to court.

“It’s a really innovative approach. States are looking at how to replicate it, and how to expand on it,” said Ellen Albritton, a senior policy analyst at the left-leaning Families USA, which has consulted with states including Maryland on such policies.

Lawmakers have introduced similar legislation in states such as Massachusetts, Rhode Island, Tennessee and Montana. And in Ohio voters are weighing a ballot initiative in November that would limit what the state pays for prescription drugs in its Medicaid program and other state health plans.

Meanwhile, the California legislature passed a bill earlier in September that would require drugmakers to disclose when they are about to raise a price more than 16 percent over two years and justify the hike. It awaits Democratic Gov. Jerry Brown’s signature.

In June, Nevada lawmakers approved a law similar to California’s but limited to insulin prices. Vermont passed a transparency law in 2016 that would scrutinize up to 15 drugs for which the state spends “significant health care dollars” and prices had climbed by set amounts in recent years.

(Story continues below.)

But states face a steep uphill climb in passing pricing legislation given the deep-pocketed pharmaceutical industry, which can finance strong opposition, whether through lobbying, legal action or advertising campaigns.

Last fall, voters rejected a California initiative that would have capped what the state pays for drugs — much like the Ohio measure under consideration. Industry groups spent more than $100 million to defeat it, putting it among California’s all-time most expensive ballot fights. Ohio’s measure is attracting similar heat, with drug companies outspending opponents about 5-to-1.

States also face policy challenges and limits to their statutory authority, which is why several have focused their efforts on specific parts of the drug-pricing pipeline.

Critics see these tailored initiatives as falling short or opening other loopholes. Requiring companies to report prices past a certain threshold, for example, might encourage them to consistently set prices just below that level.

Maryland’s law is noteworthy because it includes a fine for drugmakers if price increases are deemed excessive — though in the industry that $10,000 fine is likely nominal, suggested Rachel Sachs, an associate law professor at Washington University in St. Louis who researches drug regulations.

This law also doesn’t address the trickier policy question: a drug’s initial price tag, noted Rena Conti, an assistant professor in the University of Chicago who studies pharmaceutical economics.

And its focus on generics means that branded drugs, such as Mylan’s Epi-Pen or Kaleo’s overdose-reversing Evzio, wouldn’t be affected.

Yet there’s a good reason for this, noted Jeremy Greene, a professor of medicine and the history of medicine at Johns Hopkins University who is in favor of Maryland’s law.

Current interpretation of federal patent law suggests that the issues related to the development and affordability of on-patent drugs are under federal jurisdiction, outside the purview of states, he explained.

In Maryland, “the law was drafted narrowly to address specifically a problem we’ve only become aware of in recent years,” he said. That’s the high cost of older, off-patent drugs that face little market competition. “Here’s where the state of Maryland is trying to do something,” he said.

KHN’s coverage of prescription drug development, costs and pricing is supported in part by the Laura and John Arnold Foundation.

Reduce Your Out-of-Pocket Healthcare Costs

Reduce Your Out-of-Pocket Healthcare Costs

Patients are shelling out a larger amount of their income to healthcare providers now more than ever. In fact, according to Forbes, patient payments account for over one-third (35%) of revenue for providers.

This makes it the third highest revenue stream, with Medicare and Medicaid taking top spots. Even when patients have company-provided healthcare coverage, most still have to fork over payment for deductibles, copayments, premiums, and other out-of-pocket expenses.

With the trend in healthcare on the incline, it is safe to say that costs aren’t coming down anytime soon. Patients though can still take healthcare into their own hands and lower out-of-pocket healthcare costs by using these two tips. Read on to find out what they are!

1. Choose Generic Over Brand Prescriptions

Companies of brand prescriptions and over-the-counter medications would like you to believe that their products are the best in the healthcare industry.

And, with the number of advertisements pushing brand name medicine to consumers on a daily basis, it can seem like those companies are right.

However, the frequency of those advertisements is the only main distinction between brand and generic medicine.

 

According to the Food and Drug Administration (FDA), general medications are just as effective as name brand medicines in terms of safety, quality, strength, how they are administered, dosage, strength, and their performance characteristics.

The FDA also has its Generic Drugs Program perform rigorous reviews on generic medications to ensure they comply with all necessary requirements.

On top of this, the FDA inspects approximately 3,500 drug manufacturing plants per year to make sure they meet the FDA’s standards.

So, the next time you are at your local grocery store shopping for cough medicine, choose the generic brand over a name brand; it will help with your cough and your wallet.

2. When Not an Emergency, Go to Urgent Care

Both the emergency room and urgent care are places to go to when you need your illness or injury treated at that moment, however, there are clear distinctions between the two. Knowing them could save you a trip to the emergency room, which can cost as much as 40% more than your monthly rent.

Emergency Rooms

Emergency rooms are for emergencies. They are facilities equipped with the latest machinery and staffed to handle the direst, most life-threatening situations, including severed limbs, heart attacks, facial wounds, and other critical injuries and illnesses.

Urgent Care Clinics

Urgent care clinics, while sounding similar to emergency rooms, aren’t intended for emergencies.

They are facilities for those who need to visit their primary care provider but can’t get in because it’s after normal business hours or appointments are booked up for the day or week.

According to Scripps, individuals can go to urgent care facilities if:

  •      their symptoms happen gradually and/or they already know what their diagnosis is
  •      fever minus a rash
  •      it’s painful to urinate
  •      ear pain
  •      persistent diarrhea
  •      throwing up
  •      sore throat
  •      Sprain or shallow cut (minor trauma)

Again, if it’s an emergency, go to the emergency room. Knowing the difference between the emergency room and urgent care could save you thousands of dollars, with you (or a loved one) going to urgent care for that sore throat instead of taking a costly trip to the ER—even when you work for a company that provides healthcare for employees.  

Final Thoughts

With healthcare insurance on the up and up, it’s important to know how you can cut healthcare costs, even when you have company-provided healthcare insurance.  

No matter what healthcare reduction tips you use, one of the best prevention tips is eating a balanced diet and exercising at least 150 minutes per week.

In doing so, you will save you that trip to your doctor’s office in the future. What other healthcare saving tips do you recommend? Leave a comment!


Wendy Dessler is a super-connector with Outreachmama who helps businesses find their audience online through outreach, partnerships, and networking. She frequently writes about the latest advancements in digital marketing and focuses her efforts on developing customized blogger outreach plans depending on the industry and competition.

 

When Family Caregivers Become Family Historians

When Family Caregivers Become Family Historians

When your mom or dad is coping with dementia, it can be difficult watching them lose their grip on old memories. After all, losing our memories means losing a part of ourselves. In the same way, memory plays a key role in our ability to hold onto those we love. When we keep memories of someone, that person is with us so long as those memories are kept alive.

To preserve their loved one’s memories, many children of those with dementia take on the role not just of family caregiver, but also of family historian. These caregivers take it upon themselves to act as memory caretakers for their parents, making a dedicated effort to record, research, and preserve their loved ones’ personal histories.

As a family caregiver, becoming the historian of your loved one’s life is often a therapeutic experience. In documenting your mom or dad’s memories and personal history, you’ll be creating a record of your loved one for yourself, for your family, and for future generations. Even more important, you’ll be creating a dementia care tool that could prove invaluable as your loved one’s condition progresses.

Why Record Your Loved One’s Memories?

There are many reasons to begin recording and researching your loved one’s memories and personal history. As your loved one’s child, the record you create will help you preserve your own memory of your mom or dad. You may find yourself developing deeper understanding of how your loved one became the person you know and love. This record will also give your children, your grandchildren, and future generations a window into their family history.

But of everyone in your family, no one stands to benefit as much as your mom or dad themselves. Dementia care professionals have found that “reminiscence therapy” can help those with dementia access old memories more easily. This type of dementia care therapy uses prompts from a person’s past to trigger memories from their younger years.

By recording and researching your loved one’s past, you aren’t just recording your loved one’s story. You’re also building a memory bank to use in dementia care. As your loved one’s dementia progresses, these prompts could prove vital to accessing your loved one’s old memories.

Getting Started as a Caregiver-Historian

Dementia care professionals who practice reminiscence therapy recommend speaking with your loved one about their early life in an effort to prompt old memories. Avoid asking broad questions like “Tell me about your childhood.” Instead, try asking specific questions, like “What kind of food did you eat every Christmas dinner?” These questions often spark vivid recollections, leading your loved one to uncover cherished memories.

As your loved one shares these memories, you will want to record or document them. Dementia care specialists recommend making audio or video recordings, but only if your loved one is comfortable doing so. In cases where you are unable to record your loved one’s answers, it is best to write detailed notes following your conversation.

While most memories you record will be stories, it’s important to remember that sensations are often our most powerful memories. When we touch, smell, see, taste, or hear something familiar, it brings memories associated with that sensation flooding back. Dementia care experts say these are some of the most effective prompts for triggering memories.

Once you’ve collected a substantial number of memory prompts, you can incorporate these prompts into dementia care. Some of the ways you can trigger old memories include:

  • Playing recordings of your parent recalling their memories in their own words.
  • Enjoying favorite movies and music from their childhood.
  • Making old family recipes they enjoyed in their younger years.
  • Reading old letters from family and friends.
  • Going over old photos or spending time with family heirlooms.
  • Visiting locations from where they grew up.

Further Research

Many family caregivers turn the recording of their loved one’s personal history into a kind of passion project. You may also wish to speak with your loved one’s friends and family members, particularly those who were there for your loved one’s childhood.

You might also want to expand your research to the internet, newspaper archives, and historical records. This way, you can collect images, audio files, videos, and artifacts from the period when your mom or dad was growing up. Often, you can incorporate these items into reminiscence therapy. Some dementia care facilities have even taken to decorating rooms with antique furniture, period advertisements, and other historical items.

As dementia progresses, you might find it becomes harder and harder to spend time on collecting and recording memories. For caregivers who find this work emotionally therapeutic, this can be especially troubling. When this happens, dementia care services can provide you with the respite and support you need to continue recording and preserving your loved one’s personal history.

If You’re Blindsided By Health Plan Changes, Learn The Root Causes — And Your Rights

If You’re Blindsided By Health Plan Changes, Learn The Root Causes — And Your Rights

How much notice is required if benefits change? Do insurers have to give you a heads up if your plan doesn’t meet the minimum coverage standard under the Affordable Care Act?  Readers’ questions this month are centered around insurance notification requirements.

Q: My father’s health insurance coverage through his company was reduced without him being aware of the change. The insurance company continued to cover my parents’ bills until 10 months after the change. Now it’s trying to charge my parents for all of my mother’s doctor visits to manage her multiple sclerosis during that time. This will result in thousands of dollars in repayments. Can the insurer do that?

You may need to do some digging to figure out what’s going on here. Health plans can reduce the benefits that they offer or increase cost sharing during the plan year, but under the Affordable Care Act they generally have to notify enrollees 60 days before any changes become effective.

That doesn’t always happen, said Dania Palanker, an assistant research professor at Georgetown University’s Center on Health Insurance Reforms.

“It is very possible that something was done incorrectly, particularly if you have a self-funded employer that’s doing all the claims processing in-house,” said Palanker, who is a former health plan administrator.

Since the health plan continued to pay the claims for your mother’s multiple sclerosis for 10 months after the change, this may not be a notification problem, however.

“It suggests that the insurance company did a claims audit and determined that they should never have been paying these claims,” Palanker said. Such audits are common. “They do it routinely to try to identify fraud and abuse.”

Some states don’t allow insurers to retroactively adjust claims except in cases of fraud.

Your first step should be to contact the health plan to find out why the claims were denied retroactively. Then, regardless of the reason for the back charges, your parents “should absolutely complain, no matter what,” said Karen Pollitz, a senior fellow at the Kaiser Family Foundation. (Kaiser Health News is an editorially independent program of the foundation.)

Depending on what you learn, your dad’s human resources department may be helpful in resolving the problem, said Pollitz. Or you may need to file an appeal with the health plan, complain to your state insurance regulator or to the federal Department of Labor.

Q: As a longtime self-employed businesswoman, I’ve bought coverage on the individual market for years. I was unaware that the short-term health insurance policy I’d been sold didn’t meet ACA requirements. The pricing was similar. Don’t people have to agree in writing that they understand the limitations of those policies? Is there anything I can do?

As of last January, short-term health plan enrollment applications and related materials were required to display prominently a warning that the plan doesn’t satisfy the health insurance coverage requirements under the ACA. There’s no requirement that people acknowledge in writing that they understand what they’re buying, however. Since these short-term plans aren’t considered adequate coverage,  you may have to pay a penalty just like people who don’t buy any insurance.

In your case, you may have purchased the plan before that requirement went into effect, said Timothy Jost, an emeritus professor at Washington and Lee law school who is an expert on health law.

As for remedies, fortunately the open enrollment period for 2018 starts Nov. 1. You can sign up for a more comprehensive plan at that time on your state marketplace for coverage that begins Jan. 1.

Q: I was hospitalized with a traumatic brain injury, had surgery and spent two months in the intensive care unit. Now my insurer is no longer covering some of my medical care. Does my insurer have to notify me of this change, or is it sufficient that the hospital insurance case manager verbally informed me? 

Health plans have to notify you in writing when they deny a claim. But in your case, there may not have been an actual denial, Palanker said.

Hospital staff are typically in constant communication with a patient’s insurer about what services are covered, whether a particular treatment requires prior authorization from the health plan, or similar issues.

It’s not uncommon for a doctor to want a patient to remain in the hospital, for example, while the insurer maintains that it’s not medically necessary, Palanker said. The insurer may want the patient moved to an inpatient rehabilitation center or discharged home instead.

In these cases, there’s not an actual adverse determination and thus no requirement that the insurer notify you. The hospital case manager would likely be the one to inform you of the change.

You still have a right to that information. “The patient should ask the case manager what was asked of the insurer and then ask the insurer what is the basis that something is not covered under the plan,” Palanker said. The hospital’s patient advocate or caseworker can work with the patient to put together the necessary paperwork to request a determination and file an appeal with the insurer, if necessary.

Please visit khn.org/columnists to send comments or ideas for future topics for the Insuring Your Health column.

A surprisingly good place to die

A surprisingly good place to die

A campaigning doctor has helped make Mongolia a better place to die than many much wealthier nations. Andrew North met her to find out how.

What comes to mind when you think of Mongolia? My answer, probably like many people’s, was vast empty space, those signature round white tents (which Mongolians call gers, not ‘yurts’ – a word brought in during the country’s period under Russian and Soviet influence) and Genghis Khan.

One thing you might not think of is ‘a good place to die’. Yet Mongolia is punching above its weight in palliative care, the branch of medicine that supports people with terminal or complex illnesses. Palliative care takes a magpie approach, borrowing from other medical disciplines and addressing a whole range of issues at once, ranging from pain and other symptoms to spiritual, social and psychological support.

In a 2015 survey of global palliative care, the UK comes top, Australia second and the USA ninth. And while the richest Western nations lead the pack, Mongolia appears notably high up, especially considering that it’s well down the economic rankings. (It comes 28th in the palliative care survey but ranks 141st for gross national income (GNI) per capita.)

In fact, when it comes to palliative care, Mongolia is performing far better than any comparable economy, and is ahead of several European states with much more developed healthcare systems and greater spending power, including Greece, Hungary and Lithuania. It also eclipses several big economies, including its two giant neighbours, Russia and China.                                                          

In little more than a decade, Mongolia’s approach to palliative care has become a shining example of doing more with less. But how?

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A ribbon of snow marks the dark hilltops from an overcast sky. The wind bites at the canvas folds of the Tumurbat family ger, their dome-tented dwelling. A few lambs – almost fully grown, too late to be sold – huddle together in a wooden pen nearby, the remnants of a once 100-strong flock. As his aunt and two doctors come into the yard, 18-year-old Dorj Tumurbat stands by the gate, foot up on a kennel. The dog jumps for the visitors, held back by its chain. But Dorj stays put, not even turning his head as they cross the yard and then duck inside the ger. Inside, his father is dying.

Tumurbat Dashkhuu has late-stage liver cancer. Although his illness is incurable, there is something the physicians can do: grant him a death that’s as peaceful as possible.

The materials for making a ger have evolved – canvas is increasingly being used for the outer walls rather than animal hides – but they are still constructed to the same basic design. A typical family ger is built around two central wooden pillars (larger ones have more), symbolising the man and woman of the household in harmony. It is bad manners for any visitor to stand in this central, sacred space.

But when Dr Odontuya Davaasuren and her colleague enter the ger, everything is off balance. Enkhjargal, Tumurbat’s wife, is holding back tears, clutching a sheaf of prescriptions and other medical papers. The stove is going out. A pool of water is collecting on the linoleum floor, spilling from a washing machine on one side of the tent.

© Parkin Parkin

Next to the washing machine is a large fridge-freezer, and wires strung across the tent’s wooden frame lead to a television, DVD player and other electricals. The ger is situated in a capacious fenced compound, with a platform built for a second tent.

The family had been doing well from its livestock business, shifting between the pastures in spring and summer and hunkering down during Mongolia’s harsh winter here on the outskirts of the capital, Ulaanbaatar. But with Tumurbat unable to work, they have had to sell almost all their sheep. Enkhjargal has had to take a part-time job in a local abattoir to make ends meet. Diagnosed late, barely a year ago, Tumurbat’s cancer has upended their lives. And he is in agony.

The light from the doorway picks out his face, which is stiff with pain. He sits back across a bed, leaning on a stack of tightly folded blankets. He rests his hands delicately on the source of his torment, a bloated, fluid-filled abdomen, a typical symptom of late-stage liver cancer.

The comforting evidence of family surrounds him. At one end of his bed there is a large wooden board propped up on a table and tied to one of the ger’s rafters. It’s covered with colour photos of big groups of adults and children. To the side there’s a small altar with a little figure of Buddha on top and several brass water bowls below, part of a Buddhist ritual to ward off negativity.

I fail to find any immediate positives in this example of palliative care in action. Tumurbat struggles even to answer questions from Odontuya and her colleague Dr Solongo Surinaa. “All I want is to be without pain,” he whispers.

Solongo is in charge of palliative care at the nearest district hospital, looking after both in- and outpatients. Odontuya asked her to make this home visit during my trip so I could see how palliative care works for those without medical services on their doorstep.

Mongolia is the least densely populated country in the world, and distance is one of the biggest challenges to delivering any service there, including healthcare. It is just under an hour-and-a-half’s drive from the hospital to Tumurbat’s home, which is in a semi-rural hillside area – though it is still part of the Ulaanbaatar capital city region. (The Ulaanbaatar region – treated as a province in Mongolia – has a population of barely 1.4 million, but covers an area nearly three times that of Greater London and five times that of New York’s five boroughs.)

Tumurbat is being hit by surges of what is called ‘breakthrough pain’, which burst through the 60 mg/day of morphine he has been prescribed. Two weeks earlier, I am told, he had come home from hospital in a stable condition, his pain under control. The oncologists said the best place for him was here with his family. The local clinic would provide outpatient support, including his weekly prescription of morphine tablets – all covered by Mongolia’s national health insurance scheme.

But Tumurbat’s condition has worsened in recent days and, as Odontuya and Solongo learn more, it is clear he and his family have not been sure how to react. Enkhjargal has not bought an additional drug, dexamethasone, that had been prescribed to reduce the inflammation around her husband’s liver and thereby temper the pain.

And crucially, Tumurbat was not aware that he could take additional, so-called PRN doses (from the Latin pro re nata, meaning ‘as the circumstance arises’) of morphine beyond his daily prescription to deal with the surges of breakthrough pain. If he were to go beyond four PRN doses in 24 hours, then his prescription would be recalculated and updated.

© Parkin Parkin

On this visit, Odontuya – the more senior doctor – acts as a trouble shooter, explaining how to respond to the pain surges, gently soothing both Enkhjargal and her husband, and providing an impromptu class in spiritual care, advising her how to prepare for his impending death. Enkhjargal is distraught as the two doctors make to leave. Outside she breaks into sobs and buries herself in Odontuya’s shoulder. It is a moment some doctors would struggle with, but Odontuya lets her cry before gently pulling back, and then, holding her arms, urges Enkhjargal to prepare for the end.

The doctor’s most direct advice concerns Enkhjargal’s son Dorj, who was due to start his military service the following week. The family has to talk to the relevant authorities to delay his enlistment, Odontuya tells them. “It is so important that he is there when his father dies,” she tells me as we drive back, “to avoid complicating his grief.”

Odontuya is more than just a conscientious doctor – she’s also largely responsible for Mongolia’s rapid progress in palliative care. Spurred by her own father’s traumatic death from cancer, she’s made it her life’s work to campaign for better treatment for people with incurable illnesses. And it’s working.

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The treatment Tumurbat and his family are receiving is a long way from what Odontuya was taught when she trained to be a doctor in the late 1970s. Growing up in Mongolia’s socialist years, when the country was a satellite state of the Soviet Union, she studied in what was then Leningrad. She speaks fluent Russian. It was excellent tuition, she says, “but we were told simply to treat patients, not to treat them as people. There was no compassion.”

The way her father died changed her outlook forever. He was diagnosed with lung cancer the same year she began her studies in Russia, and in Mongolia’s health system at the time he was effectively condemned to a painful death. Not only did palliative care not exist, but it was impossible to get hold of morphine or other opioid-based painkillers.

Less than a decade later, her mother-in-law was struck down by liver cancer, and Odontuya says she too died in extreme distress. What she calls the “psychological pain” of witnessing a loved one in such a state affected everyone in her family, she says.

It was a trauma that many more families have gone through since, because of a steady increase in cancers nationwide over the past two decades, especially liver cancer. The underlying cause was Mongolia’s already high incidence of hepatitis ­– dubbed a “silent” hepatitis epidemic by the World Health Organization – which was exacerbated by frequent needle sharing in the poorly resourced socialist healthcare system.

Government policies made things worse, according to Odontuya and other doctors I speak to, by handing out free vodka. In the economic turmoil that followed Mongolia’s independence (after the collapse of the Soviet Union in 1991), the authorities were forced to introduce food rationing. But one thing they had plenty of was vodka, and they added it to every ration. “Each family got two bottles a week,” says Odontuya, shaking her head. “It was a very stupid policy.”

Mongolia was already a country of heavy drinkers, and alcoholism became even more common in those early years of independence. Precisely how much impact this had is hard to determine, but with already high rates of hepatitis infection, Mongolian doctors believe the increase in drinking contributed to the rise in liver cancer.

But it was this same cancer crisis that helped make the case for developing palliative care in Mongolia. Odontuya started lobbying for the introduction of palliative care in earnest from 2000 onwards. But first she had to come up with the right words. “[In Mongolia] we didn’t have any terminology for palliative care,” she tells me as she gives me a tour of the country’s first palliative care ward, established in the early 2000s at Mongolia’s National Cancer Center. Pointing out the sign on the door, she laughs: “If you pronounce it wrong, it can sound like our word for ‘castration’.”

But even with the words fixed, the initial reaction from officials was scorn, she says, as they dismissed palliative care as an “activity for charities”. “They asked how they could justify spending money on ‘dying’ patients, when we don’t have enough money for ‘living’ patients.” She answered with her own question: “Would you say this to your own mother, if she gets cancer or some other incurable condition? And I told them, these are still ‘living’ patients.” Even at the end of life, she says, people have human rights.

None of the former health officials I contacted responded. That Odontuya encountered resistance is hardly unique. Palliative care advocates elsewhere have also faced scepticism regarding its value – as much from medical professionals as from bureaucrats. For instance, one US study reported oncologists being reluctant to refer patients for palliative care because it “will mean the end of cancer treatment and a loss of patients’ hope”.

And for many doctors, palliative care chafes against their default philosophy. As Simon Chapman, Director of Policy and External Affairs for the National Council for Palliative Care, a UK-based umbrella charity for people involved in palliative and end-of-life care, puts it: “There is still a view among many clinicians that [a patient] dying is a professional failure.”

Today, Mongolia still has the highest incidence of liver cancer in the world. Many people are diagnosed late, when the disease is advanced and doctors can do little to stop it spreading.

§

The Songino Khairkhan district hospital on the west side of Ulaanbaatar has a solidly Soviet feel. Built in Mongolia’s socialist period, its walls are so thick they look like they would stop a tank. And the signs around the building add to the atmosphere, written in the Cyrillic script the Russians bequeathed the Mongolians.

Behind the locked door of the hospital’s main dispensary for morphine and other opioid painkillers, I am firmly back in the present. There is an air of efficient calm as two staff members work at computers, updating the database on recent prescriptions, while their boss Dr Khandsuren Gongchigav gives me a short tour of their workspace. The security is necessary to meet local and international laws aimed at combating drug abuse, and here they distribute only opioids. There is another pharmacy in the hospital for everything else.

Against one wall is a bulky metal security cabinet, its shelves filled with neat stacks of boxes of tablets. Some contain morphine, the strongest of the opioid family of drugs. It’s used for severe pain, including breakthrough cancer pain, because of its fast and powerful effects. There are other stacks – of tramadol, a less potent opioid for what specialists call moderate to severe pain.

There is a lot more to palliative care than pain relief, but experts agree you can’t have a successful palliative care programme without it. That means having an effective system for distributing opioids, which both meets patients’ needs and satisfies concerns about addiction and abuse. Reforming Mongolia’s approach to morphine was an early priority of Odontuya’s campaign.

Before the government agreed to reforms in the early 2000s, the rules were highly restrictive and counterproductive. Only oncologists were allowed to prescribe opioids and at a maximum of 10 tablets per patient – enough for just two or three days in most cases. As a result, people with cancer often died of “pain shock” when their dose ran out, says Odontuya, leading to a widespread myth that the drugs were killing people. Making morphine more readily available has helped educate patients and doctors about its benefits and reduced what she calls “morphine-phobia”.

Opioid medications still require a special form, as in most countries worldwide. But a much wider range of professionals can now prescribe them, including oncologists and family and palliative care doctors. This has led to a 14-fold increase in their use in the country from 2000 to 2014, according to Mongolian health ministry figures. Khandsuren is an oncologist by training, and now oversees opioid prescriptions for all the hospital’s outpatients. The majority are still people with cancer, but non-cancer patients have become more common. 

Every district hospital in the country now has a pharmacy like this one, allowing patients to visit weekly and get all the medication their doctor has prescribed. Nonetheless, in a country so large and so sparsely populated, that still means long journeys for patients in areas beyond Ulaanbaatar or other towns and cities.

Beyond the store cupboard, Khandsuren shows me into a room where they keep garbage sacks filled with empty blister packs. Patients have to hand over the used strips before they can get their next dose. “We do everything here according to guidelines from the United Nations,” says Khandsuren, referring to rules drawn up by its specialist drugs control agency, the International Narcotics Control Board (INCB).

Mongolia’s achievements have turned it into an example for many middle-income countries struggling with similar health problems but which, for a variety of reasons, maintain much stricter rules on opioid use. Doctors from former socialist states in particular have been coming to Mongolia to learn from its experience, their mutual past ties to Russia giving them a common language and training background.

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The National Cancer Center recently hosted some doctors from Kyrgyzstan, one of the former Soviet states of Central Asia. They remarked on how “peaceful” the palliative care department was, says Dr Munguntsetseg Lamjav, one of the centre’s senior staff. In Kyrgyzstan, she was told, it’s much harder to prescribe morphine and patients are always crying in pain.

One of the most striking contrasts with Mongolia is its giant neighbour Russia. So tight are the rules there on prescribing morphine and other opioids, I learn, that consumption has actually declined in recent years, according to INCB figures.

There is also a tendency among Russian doctors, many still influenced by their Soviet-era training, to see pain as a problem to be endured rather than treated. It is hardly surprising then that palliative care there remains very limited. But one result is frequent horror stories of people with cancer or chronic pain dying by suicide because it is so hard to get effective medication.

In fact, many governments around the world remain nervous about making morphine more available – and with good reason. Take a look at the USA, which has an endemic problem with abuse and addiction to legally prescribed opioid painkillers. But there are far more Americans suffering chronic pain (at least 30 per cent of the population according to one study) than there are drug addicts. It is all about balancing priorities, Odontuya argues. And so far at least, Mongolia’s controls seem to have worked well – its health ministry says there are few reports of people abusing opioid drugs. You hear far more concern about alcohol abuse.

§

You don’t have to spend long with Odontuya Davaasuren to realise that she’s not someone who gives up easily. I have rarely met someone as committed to a cause – except perhaps in a warzone. And there is an element of underground insurgency to her campaign, which she has pursued while also holding down a full-time medical teaching job, working as a doctor and juggling family responsibilities.

Her flip-top mobile phone rings constantly, until she switches it off. Sometimes she sees patients in her own home after work. “My husband has got used to me using our front room for consultations,” she says, smiling.

The advocacy and training organisation she established, the Mongolian Palliative Care Society, turns out to be little more than a few filing cabinets and certificates at the back of a basement room in the clinic where she works as a family doctor. The society is an umbrella group of charities and palliative care specialists, including all the country’s hospices. Odontuya is the glue holding it all together. “Sometimes I get very tired,” she tells me one day. “But I don’t think anyone else has the same heart for this.”

It has been a quest of relentless government lobbying, made more complicated by frequent political upheavals. There have been nine different health ministers in the last decade, and for each she says that they have had to go and “convince them about palliative care”.

It is in the cramped basement room that I first meet Odontuya, on a day when she is using the space as a classroom. She is a professor at the country’s premier medical institute, the Mongolian National University of Medical Sciences, and her fourth-year students are here for a session on geriatrics. And she is teaching in English, her third language after Mongolian and Russian.

I feel some pity for the students because the class lasts over three hours, and it is well past the halfway point before Odontuya remembers to give them a short break. Slackers at the back, I note, have no escape. “Why don’t you have any questions?” she demands of a young man who thought he had managed to avoid her gaze. But she is an excellent teacher, and by the end of the class I have learned a lot about diagnosing elderly patients.

Her university work complements her campaigning, because she has also set up a palliative medicine course there. Hundreds of doctors and nurses have now been through the training programme, according to Odontuya – helping to build a nationwide network and reservoir of skills.

She has also built the foundations of a similar international community through her own efforts to educate herself in palliative care. It began in 2001, when she studied palliative medicine in Poland, which was ahead of Mongolia in developing its own hospice network. Today, she is increasingly in demand to provide her own palliative care training, particularly in Russian-speaking former Soviet states. She has recently returned from running a course for doctors in Kyrgyzstan.

For a country that had no palliative care to speak of barely a decade ago, the change has been dramatic. All Mongolia’s 21 provincial hospitals as well as the nine district hospitals in Ulaanbaatar have at least five palliative care beds, as well as individual morphine dispensaries. There is also a network of private and charity-run hospices that provide palliative care around the capital city region. Even Ulaanbaatar’s prison hospital has four beds reserved for terminally ill patients. The national health service now has to provide palliative care by law.

“It is the government that has made the policy,” Odontuya says. “All I have done is advocate.” But I am not surprised to hear from colleagues of hers that I speak to during my visit that she has been dubbed the ‘Mother of Palliative Care in Mongolia’. At the country’s Ministry of Health they agree. “We have learned a lot from her,” says the Director of Medical Services, Dr Amarjargal Yadam.

“In the past, many hospitals turned people away because they were incurable,” Yadam says, speaking for the minister, who was away during my visit. “We still need to make a lot of reforms,” she adds, “but we are listening to the people.” Health is now such a priority, she says, that it is ring-fenced from likely future budget cuts forced by a recent economic downturn.

As Odontuya’s students grab their books and rush gratefully out of the tiny classroom, she switches back into her role as evangelist, showing me the many training manuals from Western medical institutes and international health bodies that she has had translated into Mongolian.

And at a time when she was already a grandmother, that meant learning English from scratch – not just to understand the texts, but also to apply for grants to get them printed. She remembers getting the first email from one of her funders, the Open Society Foundations, and then spending the next day going through it with her English-to-Mongolian dictionary. “There was no Google Translate then,” she says. “This is how I learned English.”

§

“I have less pain now” says Batzandan, a 57-year-old film and stage actor with advanced cancer. “But I know I am not getting better.” We are talking at his bedside in the palliative care ward of Mongolia’s National Cancer Center. In the past, he may not have been given the whole picture, but Munguntsetseg, the senior doctor on duty, says Batzandan has been told to prepare for the end. “Our policy now is to give patients the full diagnosis,” she says.

But ‘breaking bad news’, as it is often called, is one of the hardest tasks for any doctor – even more so in a country like Mongolia, where any mention of death has long been a taboo subject. There are also particular beliefs about dying on certain days of the week, I learn. “Tuesdays and Saturdays are bad luck,” Odontuya says, “so if someone is close to death on those days, families put a lot of pressure on doctors to make sure they die the next day.”

As much as possible, they try to work within local traditions and beliefs, not against them, using them to their advantage to put a local face on palliative care. Odontuya often uses a Mongolian proverb in her conversations with patients who are close to the end. It is hard to translate directly, but in essence it speaks of the inevitability of death, and she says it helps “patients to accept the real situation, accept a poor prognosis easily, because it is true that everyone will die someday”.

Traditions from Buddhism – the country’s dominant faith – have also been a help. When someone dies, a lama, or priest, reads from special scriptures, which is known as “the opening of the Golden Box”. The priest can also tell if this person had lived longer or shorter than God intended, explains Odontuya, and “sometimes the lama says [living longer] is because of good medical treatment”.

Back on the palliative care ward, Munguntsetseg says she has seen attitudes to death change since the ward was established. “More patients write a will now,” she says. “They would never have done that in the past because it would be seen as a bad omen.”

The hospital also offers patients what is known as “dignity therapy” – which my interpreter translated as “reputation treatment” – encouraging them to tell their life story before they pass away. It began as a way of dealing with patients suffering severe depression, she says, but then they found that other people wanted to tell their stories, to set the record straight. “We had a patient recently who asked his ex-wife to visit, so he could apologise for his past behaviour, and he gave her money too.”

Some palliative care patients have responded by drawing up ‘bucket lists’. During my visit, I met a woman with terminal cancer who had recently returned from a visit to Lake Baikal (the world’s deepest lake) in Siberia, just the other side of Mongolia’s border with Russia. With her week’s prescription of morphine tablets, she had been able to make a journey that had been “a lifetime ambition”.

Before she studied palliative care, Odontuya says she was a “very closed, quiet person”, adding that if anyone had mentioned spirituality in the past, “I would have thought it was religion”. But a visit to a Polish hospice sparked a “revolution in [her] brain”. Then she understood that palliative care is total care, she says, something that covers “all physical, psychological, spiritual and social pain”.

The idea of palliative care being holistic can be traced back to Cicely Saunders, the British nurse and doctor who established the first hospice in the UK in the 1960s. She came up with the concept of ‘total pain’, arguing that it was as important to address the mental, emotional, spiritual and social aspects of patients’ suffering as it was to treat their physical symptoms.

Odontuya worries that spiritual matters could still be sidelined by the modernising pull of more clinical approaches. “The Ministry of Health and our university do not understand what spirituality, spiritual pain and spiritual care mean,” she says. Still, Saunders’s focus on the spiritual side has been an inspiration for Odontuya.

“She lived in modern society, but she thought like a postmodern person,” Odontuya says. Saunders was also a charismatic campaigner, and Odontuya seems to be taking on her mantle – you can already see the impact she has had in Mongolia. But she modestly ducks the comparison, saying: “I am just her little finger.”

§

It is a bright, freezing day in the Mongolian capital. Shards of winter sun reflect off of the nearby crop of glass towers, which sprung up in the city centre during the country’s recent minerals boom.

A small crowd is heading towards a giant statue of Genghis Khan on the far side of a square that is named after him. Some people carry placards in Mongolian exhorting the virtues of palliative care, hunching into their coats as the wind stiffens. These doctors, nurses and hospice staff, as well as their friends and family, have come from across the country to hold a rally to raise awareness, part of World Hospice and Palliative Care Day.

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In the midst of the crowd is Odontuya, alternating between greeting friends and making phone calls to check the journalists she has invited are on their way. “Always I am doing advocacy, advocacy,” she says.

I wouldn’t associate Genghis Khan with palliative care, I think to myself, as I follow them towards the statue of Mongolia’s famously pitiless founding father. But time is a great cleanser of reputations, and now the man Mongolians call Chinggis Khaan is everywhere – even the main airport is named after him. And his is the square in Mongolia you choose if you want your gathering to have maximum impact.

The municipality had turned down her request for a rally, Odontuya says, apparently claiming it was closed for an event. She decided to show up anyway. Apart from a wedding party posing for a photographer, there is no sign of anything else going on. As they approach the statue, a guard sees the placards and TV crew waiting nearby, and holds up a uniformed arm to halt the impromptu collective. “This is not allowed,” he barks.

Odontuya and two colleagues persuade him to compromise. Workers from each hospice take it in turns to line up beneath the statues, laughing and chatting as they hold up their placards for the cameras. Genghis glowers from above.

Photos done, it’s time to head off for a picnic in the hills. We drive up through one of the new suburbs creeping up the hills around Ulaanbaatar, past unfinished developments with names like English Garden and Forbes Mongolia.

The mood is very happy. The care workers laugh at the pretentious names. They laugh at everything. The jokes continue as they unload picnic baskets from the cars and carry on up the hill, past a park filled with concrete gers for tourists.

After lunch, there is music, dancing and games – and then an awards ceremony, with Odontuya handing out prizes for the best hospice and palliative care workers of the year. And then there is a prize and a cake for her too. “We love her,” says one young hospice worker, nodding her head towards Odontuya behind us.

Another hospice worker brings out his guitar and starts up a group song. Odontuya peels away to do a couple of television interviews. That evening all of Mongolia’s main TV channels run a story about palliative care.

Odontuya says that they get together like this every year because the hospices are spread so widely across Ulaanbaatar she may not see some staff for months. “I remember going to visit hospices in China and Singapore,” she says. “They have far more resources than us, but they don’t have this atmosphere. We are poor by comparison, but we love each other. We are a family.”

It is, I realise, a theme that permeates all that Odontuya does. From the personal experiences that put her on the path to becoming Mongolia’s ‘Mother of Palliative Care’, to the way she practises it, ‘family’, in every sense of the word, is a guiding spirit.

After I return from Mongolia, I ask my translator to call Tumurbat Dashkhuu’s family and find out what had happened. He died at home a few weeks after my visit, in his ger, with his family around him. And, after following Odontuya’s advice to postpone his military service, his son Dorj was there too.

 

What comes to mind when you think of Mongolia? My answer, probably like many people’s, was vast empty space, those signature round white tents (which Mongolians call gers, not ‘yurts’ – a word brought in during the country’s period under Russian and Soviet influence) and Genghis Khan.

One thing you might not think of is ‘a good place to die’. Yet Mongolia is punching above its weight in palliative care, the branch of medicine that supports people with terminal or complex illnesses. Palliative care takes a magpie approach, borrowing from other medical disciplines and addressing a whole range of issues at once, ranging from pain and other symptoms to spiritual, social and psychological support.

In a 2015 survey of global palliative care, the UK comes top, Australia second and the USA ninth. And while the richest Western nations lead the pack, Mongolia appears notably high up, especially considering that it’s well down the economic rankings. (It comes 28th in the palliative care survey but ranks 141st for gross national income (GNI) per capita.)

In fact, when it comes to palliative care, Mongolia is performing far better than any comparable economy, and is ahead of several European states with much more developed healthcare systems and greater spending power, including Greece, Hungary and Lithuania. It also eclipses several big economies, including its two giant neighbours, Russia and China.                                                          

In little more than a decade, Mongolia’s approach to palliative care has become a shining example of doing more with less. But how?

§

A ribbon of snow marks the dark hilltops from an overcast sky. The wind bites at the canvas folds of the Tumurbat family ger, their dome-tented dwelling. A few lambs – almost fully grown, too late to be sold – huddle together in a wooden pen nearby, the remnants of a once 100-strong flock. As his aunt and two doctors come into the yard, 18-year-old Dorj Tumurbat stands by the gate, foot up on a kennel. The dog jumps for the visitors, held back by its chain. But Dorj stays put, not even turning his head as they cross the yard and then duck inside the ger. Inside, his father is dying.

Tumurbat Dashkhuu has late-stage liver cancer. Although his illness is incurable, there is something the physicians can do: grant him a death that’s as peaceful as possible.

The materials for making a ger have evolved – canvas is increasingly being used for the outer walls rather than animal hides – but they are still constructed to the same basic design. A typical family ger is built around two central wooden pillars (larger ones have more), symbolising the man and woman of the household in harmony. It is bad manners for any visitor to stand in this central, sacred space.

But when Dr Odontuya Davaasuren and her colleague enter the ger, everything is off balance. Enkhjargal, Tumurbat’s wife, is holding back tears, clutching a sheaf of prescriptions and other medical papers. The stove is going out. A pool of water is collecting on the linoleum floor, spilling from a washing machine on one side of the tent.

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Next to the washing machine is a large fridge-freezer, and wires strung across the tent’s wooden frame lead to a television, DVD player and other electricals. The ger is situated in a capacious fenced compound, with a platform built for a second tent.

The family had been doing well from its livestock business, shifting between the pastures in spring and summer and hunkering down during Mongolia’s harsh winter here on the outskirts of the capital, Ulaanbaatar. But with Tumurbat unable to work, they have had to sell almost all their sheep. Enkhjargal has had to take a part-time job in a local abattoir to make ends meet. Diagnosed late, barely a year ago, Tumurbat’s cancer has upended their lives. And he is in agony.

The light from the doorway picks out his face, which is stiff with pain. He sits back across a bed, leaning on a stack of tightly folded blankets. He rests his hands delicately on the source of his torment, a bloated, fluid-filled abdomen, a typical symptom of late-stage liver cancer.

The comforting evidence of family surrounds him. At one end of his bed there is a large wooden board propped up on a table and tied to one of the ger’s rafters. It’s covered with colour photos of big groups of adults and children. To the side there’s a small altar with a little figure of Buddha on top and several brass water bowls below, part of a Buddhist ritual to ward off negativity.

I fail to find any immediate positives in this example of palliative care in action. Tumurbat struggles even to answer questions from Odontuya and her colleague Dr Solongo Surinaa. “All I want is to be without pain,” he whispers.

Solongo is in charge of palliative care at the nearest district hospital, looking after both in- and outpatients. Odontuya asked her to make this home visit during my trip so I could see how palliative care works for those without medical services on their doorstep.

Mongolia is the least densely populated country in the world, and distance is one of the biggest challenges to delivering any service there, including healthcare. It is just under an hour-and-a-half’s drive from the hospital to Tumurbat’s home, which is in a semi-rural hillside area – though it is still part of the Ulaanbaatar capital city region. (The Ulaanbaatar region – treated as a province in Mongolia – has a population of barely 1.4 million, but covers an area nearly three times that of Greater London and five times that of New York’s five boroughs.)

Tumurbat is being hit by surges of what is called ‘breakthrough pain’, which burst through the 60 mg/day of morphine he has been prescribed. Two weeks earlier, I am told, he had come home from hospital in a stable condition, his pain under control. The oncologists said the best place for him was here with his family. The local clinic would provide outpatient support, including his weekly prescription of morphine tablets – all covered by Mongolia’s national health insurance scheme.

But Tumurbat’s condition has worsened in recent days and, as Odontuya and Solongo learn more, it is clear he and his family have not been sure how to react. Enkhjargal has not bought an additional drug, dexamethasone, that had been prescribed to reduce the inflammation around her husband’s liver and thereby temper the pain.

And crucially, Tumurbat was not aware that he could take additional, so-called PRN doses (from the Latin pro re nata, meaning ‘as the circumstance arises’) of morphine beyond his daily prescription to deal with the surges of breakthrough pain. If he were to go beyond four PRN doses in 24 hours, then his prescription would be recalculated and updated.

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On this visit, Odontuya – the more senior doctor – acts as a trouble shooter, explaining how to respond to the pain surges, gently soothing both Enkhjargal and her husband, and providing an impromptu class in spiritual care, advising her how to prepare for his impending death. Enkhjargal is distraught as the two doctors make to leave. Outside she breaks into sobs and buries herself in Odontuya’s shoulder. It is a moment some doctors would struggle with, but Odontuya lets her cry before gently pulling back, and then, holding her arms, urges Enkhjargal to prepare for the end.

The doctor’s most direct advice concerns Enkhjargal’s son Dorj, who was due to start his military service the following week. The family has to talk to the relevant authorities to delay his enlistment, Odontuya tells them. “It is so important that he is there when his father dies,” she tells me as we drive back, “to avoid complicating his grief.”

Odontuya is more than just a conscientious doctor – she’s also largely responsible for Mongolia’s rapid progress in palliative care. Spurred by her own father’s traumatic death from cancer, she’s made it her life’s work to campaign for better treatment for people with incurable illnesses. And it’s working.

§

The treatment Tumurbat and his family are receiving is a long way from what Odontuya was taught when she trained to be a doctor in the late 1970s. Growing up in Mongolia’s socialist years, when the country was a satellite state of the Soviet Union, she studied in what was then Leningrad. She speaks fluent Russian. It was excellent tuition, she says, “but we were told simply to treat patients, not to treat them as people. There was no compassion.”

The way her father died changed her outlook forever. He was diagnosed with lung cancer the same year she began her studies in Russia, and in Mongolia’s health system at the time he was effectively condemned to a painful death. Not only did palliative care not exist, but it was impossible to get hold of morphine or other opioid-based painkillers.

Less than a decade later, her mother-in-law was struck down by liver cancer, and Odontuya says she too died in extreme distress. What she calls the “psychological pain” of witnessing a loved one in such a state affected everyone in her family, she says.

It was a trauma that many more families have gone through since, because of a steady increase in cancers nationwide over the past two decades, especially liver cancer. The underlying cause was Mongolia’s already high incidence of hepatitis ­– dubbed a “silent” hepatitis epidemic by the World Health Organization – which was exacerbated by frequent needle sharing in the poorly resourced socialist healthcare system.

Government policies made things worse, according to Odontuya and other doctors I speak to, by handing out free vodka. In the economic turmoil that followed Mongolia’s independence (after the collapse of the Soviet Union in 1991), the authorities were forced to introduce food rationing. But one thing they had plenty of was vodka, and they added it to every ration. “Each family got two bottles a week,” says Odontuya, shaking her head. “It was a very stupid policy.”

Mongolia was already a country of heavy drinkers, and alcoholism became even more common in those early years of independence. Precisely how much impact this had is hard to determine, but with already high rates of hepatitis infection, Mongolian doctors believe the increase in drinking contributed to the rise in liver cancer.

But it was this same cancer crisis that helped make the case for developing palliative care in Mongolia. Odontuya started lobbying for the introduction of palliative care in earnest from 2000 onwards. But first she had to come up with the right words. “[In Mongolia] we didn’t have any terminology for palliative care,” she tells me as she gives me a tour of the country’s first palliative care ward, established in the early 2000s at Mongolia’s National Cancer Center. Pointing out the sign on the door, she laughs: “If you pronounce it wrong, it can sound like our word for ‘castration’.”

But even with the words fixed, the initial reaction from officials was scorn, she says, as they dismissed palliative care as an “activity for charities”. “They asked how they could justify spending money on ‘dying’ patients, when we don’t have enough money for ‘living’ patients.” She answered with her own question: “Would you say this to your own mother, if she gets cancer or some other incurable condition? And I told them, these are still ‘living’ patients.” Even at the end of life, she says, people have human rights.

None of the former health officials I contacted responded. That Odontuya encountered resistance is hardly unique. Palliative care advocates elsewhere have also faced scepticism regarding its value – as much from medical professionals as from bureaucrats. For instance, one US study reported oncologists being reluctant to refer patients for palliative care because it “will mean the end of cancer treatment and a loss of patients’ hope”.

And for many doctors, palliative care chafes against their default philosophy. As Simon Chapman, Director of Policy and External Affairs for the National Council for Palliative Care, a UK-based umbrella charity for people involved in palliative and end-of-life care, puts it: “There is still a view among many clinicians that [a patient] dying is a professional failure.”

Today, Mongolia still has the highest incidence of liver cancer in the world. Many people are diagnosed late, when the disease is advanced and doctors can do little to stop it spreading.

§

The Songino Khairkhan district hospital on the west side of Ulaanbaatar has a solidly Soviet feel. Built in Mongolia’s socialist period, its walls are so thick they look like they would stop a tank. And the signs around the building add to the atmosphere, written in the Cyrillic script the Russians bequeathed the Mongolians.

Behind the locked door of the hospital’s main dispensary for morphine and other opioid painkillers, I am firmly back in the present. There is an air of efficient calm as two staff members work at computers, updating the database on recent prescriptions, while their boss Dr Khandsuren Gongchigav gives me a short tour of their workspace. The security is necessary to meet local and international laws aimed at combating drug abuse, and here they distribute only opioids. There is another pharmacy in the hospital for everything else.

Against one wall is a bulky metal security cabinet, its shelves filled with neat stacks of boxes of tablets. Some contain morphine, the strongest of the opioid family of drugs. It’s used for severe pain, including breakthrough cancer pain, because of its fast and powerful effects. There are other stacks – of tramadol, a less potent opioid for what specialists call moderate to severe pain.

There is a lot more to palliative care than pain relief, but experts agree you can’t have a successful palliative care programme without it. That means having an effective system for distributing opioids, which both meets patients’ needs and satisfies concerns about addiction and abuse. Reforming Mongolia’s approach to morphine was an early priority of Odontuya’s campaign.

Before the government agreed to reforms in the early 2000s, the rules were highly restrictive and counterproductive. Only oncologists were allowed to prescribe opioids and at a maximum of 10 tablets per patient – enough for just two or three days in most cases. As a result, people with cancer often died of “pain shock” when their dose ran out, says Odontuya, leading to a widespread myth that the drugs were killing people. Making morphine more readily available has helped educate patients and doctors about its benefits and reduced what she calls “morphine-phobia”.

Opioid medications still require a special form, as in most countries worldwide. But a much wider range of professionals can now prescribe them, including oncologists and family and palliative care doctors. This has led to a 14-fold increase in their use in the country from 2000 to 2014, according to Mongolian health ministry figures. Khandsuren is an oncologist by training, and now oversees opioid prescriptions for all the hospital’s outpatients. The majority are still people with cancer, but non-cancer patients have become more common. 

Every district hospital in the country now has a pharmacy like this one, allowing patients to visit weekly and get all the medication their doctor has prescribed. Nonetheless, in a country so large and so sparsely populated, that still means long journeys for patients in areas beyond Ulaanbaatar or other towns and cities.

Beyond the store cupboard, Khandsuren shows me into a room where they keep garbage sacks filled with empty blister packs. Patients have to hand over the used strips before they can get their next dose. “We do everything here according to guidelines from the United Nations,” says Khandsuren, referring to rules drawn up by its specialist drugs control agency, the International Narcotics Control Board (INCB).

Mongolia’s achievements have turned it into an example for many middle-income countries struggling with similar health problems but which, for a variety of reasons, maintain much stricter rules on opioid use. Doctors from former socialist states in particular have been coming to Mongolia to learn from its experience, their mutual past ties to Russia giving them a common language and training background.

© Parkin Parkin

The National Cancer Center recently hosted some doctors from Kyrgyzstan, one of the former Soviet states of Central Asia. They remarked on how “peaceful” the palliative care department was, says Dr Munguntsetseg Lamjav, one of the centre’s senior staff. In Kyrgyzstan, she was told, it’s much harder to prescribe morphine and patients are always crying in pain.

One of the most striking contrasts with Mongolia is its giant neighbour Russia. So tight are the rules there on prescribing morphine and other opioids, I learn, that consumption has actually declined in recent years, according to INCB figures.

There is also a tendency among Russian doctors, many still influenced by their Soviet-era training, to see pain as a problem to be endured rather than treated. It is hardly surprising then that palliative care there remains very limited. But one result is frequent horror stories of people with cancer or chronic pain dying by suicide because it is so hard to get effective medication.

In fact, many governments around the world remain nervous about making morphine more available – and with good reason. Take a look at the USA, which has an endemic problem with abuse and addiction to legally prescribed opioid painkillers. But there are far more Americans suffering chronic pain (at least 30 per cent of the population according to one study) than there are drug addicts. It is all about balancing priorities, Odontuya argues. And so far at least, Mongolia’s controls seem to have worked well – its health ministry says there are few reports of people abusing opioid drugs. You hear far more concern about alcohol abuse.

§

You don’t have to spend long with Odontuya Davaasuren to realise that she’s not someone who gives up easily. I have rarely met someone as committed to a cause – except perhaps in a warzone. And there is an element of underground insurgency to her campaign, which she has pursued while also holding down a full-time medical teaching job, working as a doctor and juggling family responsibilities.

Her flip-top mobile phone rings constantly, until she switches it off. Sometimes she sees patients in her own home after work. “My husband has got used to me using our front room for consultations,” she says, smiling.

The advocacy and training organisation she established, the Mongolian Palliative Care Society, turns out to be little more than a few filing cabinets and certificates at the back of a basement room in the clinic where she works as a family doctor. The society is an umbrella group of charities and palliative care specialists, including all the country’s hospices. Odontuya is the glue holding it all together. “Sometimes I get very tired,” she tells me one day. “But I don’t think anyone else has the same heart for this.”

It has been a quest of relentless government lobbying, made more complicated by frequent political upheavals. There have been nine different health ministers in the last decade, and for each she says that they have had to go and “convince them about palliative care”.

It is in the cramped basement room that I first meet Odontuya, on a day when she is using the space as a classroom. She is a professor at the country’s premier medical institute, the Mongolian National University of Medical Sciences, and her fourth-year students are here for a session on geriatrics. And she is teaching in English, her third language after Mongolian and Russian.

I feel some pity for the students because the class lasts over three hours, and it is well past the halfway point before Odontuya remembers to give them a short break. Slackers at the back, I note, have no escape. “Why don’t you have any questions?” she demands of a young man who thought he had managed to avoid her gaze. But she is an excellent teacher, and by the end of the class I have learned a lot about diagnosing elderly patients.

Her university work complements her campaigning, because she has also set up a palliative medicine course there. Hundreds of doctors and nurses have now been through the training programme, according to Odontuya – helping to build a nationwide network and reservoir of skills.

She has also built the foundations of a similar international community through her own efforts to educate herself in palliative care. It began in 2001, when she studied palliative medicine in Poland, which was ahead of Mongolia in developing its own hospice network. Today, she is increasingly in demand to provide her own palliative care training, particularly in Russian-speaking former Soviet states. She has recently returned from running a course for doctors in Kyrgyzstan.

For a country that had no palliative care to speak of barely a decade ago, the change has been dramatic. All Mongolia’s 21 provincial hospitals as well as the nine district hospitals in Ulaanbaatar have at least five palliative care beds, as well as individual morphine dispensaries. There is also a network of private and charity-run hospices that provide palliative care around the capital city region. Even Ulaanbaatar’s prison hospital has four beds reserved for terminally ill patients. The national health service now has to provide palliative care by law.

“It is the government that has made the policy,” Odontuya says. “All I have done is advocate.” But I am not surprised to hear from colleagues of hers that I speak to during my visit that she has been dubbed the ‘Mother of Palliative Care in Mongolia’. At the country’s Ministry of Health they agree. “We have learned a lot from her,” says the Director of Medical Services, Dr Amarjargal Yadam.

“In the past, many hospitals turned people away because they were incurable,” Yadam says, speaking for the minister, who was away during my visit. “We still need to make a lot of reforms,” she adds, “but we are listening to the people.” Health is now such a priority, she says, that it is ring-fenced from likely future budget cuts forced by a recent economic downturn.

As Odontuya’s students grab their books and rush gratefully out of the tiny classroom, she switches back into her role as evangelist, showing me the many training manuals from Western medical institutes and international health bodies that she has had translated into Mongolian.

And at a time when she was already a grandmother, that meant learning English from scratch – not just to understand the texts, but also to apply for grants to get them printed. She remembers getting the first email from one of her funders, the Open Society Foundations, and then spending the next day going through it with her English-to-Mongolian dictionary. “There was no Google Translate then,” she says. “This is how I learned English.”

§

“I have less pain now” says Batzandan, a 57-year-old film and stage actor with advanced cancer. “But I know I am not getting better.” We are talking at his bedside in the palliative care ward of Mongolia’s National Cancer Center. In the past, he may not have been given the whole picture, but Munguntsetseg, the senior doctor on duty, says Batzandan has been told to prepare for the end. “Our policy now is to give patients the full diagnosis,” she says.

But ‘breaking bad news’, as it is often called, is one of the hardest tasks for any doctor – even more so in a country like Mongolia, where any mention of death has long been a taboo subject. There are also particular beliefs about dying on certain days of the week, I learn. “Tuesdays and Saturdays are bad luck,” Odontuya says, “so if someone is close to death on those days, families put a lot of pressure on doctors to make sure they die the next day.”

As much as possible, they try to work within local traditions and beliefs, not against them, using them to their advantage to put a local face on palliative care. Odontuya often uses a Mongolian proverb in her conversations with patients who are close to the end. It is hard to translate directly, but in essence it speaks of the inevitability of death, and she says it helps “patients to accept the real situation, accept a poor prognosis easily, because it is true that everyone will die someday”.

Traditions from Buddhism – the country’s dominant faith – have also been a help. When someone dies, a lama, or priest, reads from special scriptures, which is known as “the opening of the Golden Box”. The priest can also tell if this person had lived longer or shorter than God intended, explains Odontuya, and “sometimes the lama says [living longer] is because of good medical treatment”.

Back on the palliative care ward, Munguntsetseg says she has seen attitudes to death change since the ward was established. “More patients write a will now,” she says. “They would never have done that in the past because it would be seen as a bad omen.”

The hospital also offers patients what is known as “dignity therapy” – which my interpreter translated as “reputation treatment” – encouraging them to tell their life story before they pass away. It began as a way of dealing with patients suffering severe depression, she says, but then they found that other people wanted to tell their stories, to set the record straight. “We had a patient recently who asked his ex-wife to visit, so he could apologise for his past behaviour, and he gave her money too.”

Some palliative care patients have responded by drawing up ‘bucket lists’. During my visit, I met a woman with terminal cancer who had recently returned from a visit to Lake Baikal (the world’s deepest lake) in Siberia, just the other side of Mongolia’s border with Russia. With her week’s prescription of morphine tablets, she had been able to make a journey that had been “a lifetime ambition”.

Before she studied palliative care, Odontuya says she was a “very closed, quiet person”, adding that if anyone had mentioned spirituality in the past, “I would have thought it was religion”. But a visit to a Polish hospice sparked a “revolution in [her] brain”. Then she understood that palliative care is total care, she says, something that covers “all physical, psychological, spiritual and social pain”.

The idea of palliative care being holistic can be traced back to Cicely Saunders, the British nurse and doctor who established the first hospice in the UK in the 1960s. She came up with the concept of ‘total pain’, arguing that it was as important to address the mental, emotional, spiritual and social aspects of patients’ suffering as it was to treat their physical symptoms.

Odontuya worries that spiritual matters could still be sidelined by the modernising pull of more clinical approaches. “The Ministry of Health and our university do not understand what spirituality, spiritual pain and spiritual care mean,” she says. Still, Saunders’s focus on the spiritual side has been an inspiration for Odontuya.

“She lived in modern society, but she thought like a postmodern person,” Odontuya says. Saunders was also a charismatic campaigner, and Odontuya seems to be taking on her mantle – you can already see the impact she has had in Mongolia. But she modestly ducks the comparison, saying: “I am just her little finger.”

§

It is a bright, freezing day in the Mongolian capital. Shards of winter sun reflect off of the nearby crop of glass towers, which sprung up in the city centre during the country’s recent minerals boom.

A small crowd is heading towards a giant statue of Genghis Khan on the far side of a square that is named after him. Some people carry placards in Mongolian exhorting the virtues of palliative care, hunching into their coats as the wind stiffens. These doctors, nurses and hospice staff, as well as their friends and family, have come from across the country to hold a rally to raise awareness, part of World Hospice and Palliative Care Day.

© Parkin Parkin

In the midst of the crowd is Odontuya, alternating between greeting friends and making phone calls to check the journalists she has invited are on their way. “Always I am doing advocacy, advocacy,” she says.

I wouldn’t associate Genghis Khan with palliative care, I think to myself, as I follow them towards the statue of Mongolia’s famously pitiless founding father. But time is a great cleanser of reputations, and now the man Mongolians call Chinggis Khaan is everywhere – even the main airport is named after him. And his is the square in Mongolia you choose if you want your gathering to have maximum impact.

The municipality had turned down her request for a rally, Odontuya says, apparently claiming it was closed for an event. She decided to show up anyway. Apart from a wedding party posing for a photographer, there is no sign of anything else going on. As they approach the statue, a guard sees the placards and TV crew waiting nearby, and holds up a uniformed arm to halt the impromptu collective. “This is not allowed,” he barks.

Odontuya and two colleagues persuade him to compromise. Workers from each hospice take it in turns to line up beneath the statues, laughing and chatting as they hold up their placards for the cameras. Genghis glowers from above.

Photos done, it’s time to head off for a picnic in the hills. We drive up through one of the new suburbs creeping up the hills around Ulaanbaatar, past unfinished developments with names like English Garden and Forbes Mongolia.

The mood is very happy. The care workers laugh at the pretentious names. They laugh at everything. The jokes continue as they unload picnic baskets from the cars and carry on up the hill, past a park filled with concrete gers for tourists.

After lunch, there is music, dancing and games – and then an awards ceremony, with Odontuya handing out prizes for the best hospice and palliative care workers of the year. And then there is a prize and a cake for her too. “We love her,” says one young hospice worker, nodding her head towards Odontuya behind us.

Another hospice worker brings out his guitar and starts up a group song. Odontuya peels away to do a couple of television interviews. That evening all of Mongolia’s main TV channels run a story about palliative care.

Odontuya says that they get together like this every year because the hospices are spread so widely across Ulaanbaatar she may not see some staff for months. “I remember going to visit hospices in China and Singapore,” she says. “They have far more resources than us, but they don’t have this atmosphere. We are poor by comparison, but we love each other. We are a family.”

It is, I realise, a theme that permeates all that Odontuya does. From the personal experiences that put her on the path to becoming Mongolia’s ‘Mother of Palliative Care’, to the way she practises it, ‘family’, in every sense of the word, is a guiding spirit.

After I return from Mongolia, I ask my translator to call Tumurbat Dashkhuu’s family and find out what had happened. He died at home a few weeks after my visit, in his ger, with his family around him. And, after following Odontuya’s advice to postpone his military service, his son Dorj was there too.

 

This article first appeared on Mosaic and is republished here under a Creative Commons licence.

How Social Interaction Plays a Principal Role in Dementia

How Social Interaction Plays a Principal Role in Dementia

Dementia is an umbrella term for a progressive age-related disorder which is primarily seen in senior patients. It is associated with deterioration of the patients’ memory, cognition, behavior and a decline in their ability to perform activities of daily living. Alzheimer’s disease is the most common type of dementia that makes up nearly 70 percent of the cases.

One in ten Americans aged 65 years and older suffers from dementia. 2017 statistics reveal that an estimated 5.3 million senior Americans are living with dementia related to Alzheimer’s disease.

According to the U.S. Census Bureau, nearly 28 percent of seniors aged 65 years and older are living alone. Seniors with dementia are at a higher risk of social isolation, leading to serious consequences for the patient.

If you have a senior loved one who is suffering from dementia, it is crucial that you engage him/her in suitable social activities to make him/her feel loved and cared for.

Here are five ways in which social interaction can affect your senior’s health positively and boost his/her longevity and mental wellbeing.

1. Social Interaction Preserves Cognitive Function

Research has found a strong connection between loneliness and impaired cognitive function. Patients with dementia are often pessimistic about their future and tend to feel lonely owing to social isolation. This happens mainly due to retirement, the death of a spouse and/or close friends, and the lack of mobility.

Numerous studies confirm that seniors with dementia who have a strong social network experience delayed cognitive impairment. Larger social circles have a protective influence on the comprehension and reasoning ability of seniors battling dementia. Seniors who have a considerable amount of support from their families are at a lower risk of developing memory-loss symptoms.

When seniors interact with other family members, relatives, and friends, they have to think of ways to converse and respond. Scientists believe that this basic exchange is a form of exercise that stimulates the brain cells and the formation of brain synapses, thus fueling the creation of new nerve cells.

Encourage and help your senior to build a social network by participating in voluntary and social service activities and cognitive rehabilitation programs. These activities can be a valuable source of social connection for your elder, making him/her feel valued.

2. Meeting People Comes with Psychological Benefits

Dementia is often associated with psychological conditions such as stress, depression, anxiety, and mood disorders. Researchers estimate that nearly 95 percent of seniors living with dementia suffer from behavioral and psychological symptoms such as agitation, aggression, depression, delusions, hallucinations, and sleep disturbances. These symptoms are commonly referred to as the neuropsychiatric symptoms of dementia.

Seniors with strong family and social bonds tend to have a positive outlook as they have someone reliable to talk to. Remaining socially active can significantly reduce the risk of psychological disorders and improve sleep quality.

Getting quality sleep is crucial for dementia patients to calm their psychosomatic symptoms of depression and anxiety. The National Sleep Foundation states that undisturbed sleep relaxes the brain and helps it focus and retain information better.

Plan meaningful activities for your senior, keeping in mind his/her physical abilities, leisure interests, past work life, and social preferences. Take your senior for a movie or a play, invite family and friends for a game of cards, or go through a photo album and talk about old times. These activities will improve your senior’s mood and reduce challenging behaviors.

3. Get-Together Offer Physical Health Benefits

Engaging in social interaction offers numerous physical benefits to patients with dementia. Participating in group physical activities improves the patients’ ability to perform activities of daily living and reduces the risk of falls.

Group activities like exercising, walking, and playing games offer social interaction opportunities and can be adapted to suit a wide range of physical limitations of seniors.

Take your senior for regular walks in the park. Encourage him/her to join yoga, meditation or exercise class. Engaging in group exercises builds a strong social circle, improves mood, boosts physical strength, and reduces the risk of age-related ailments.

4. Socializing Improves the Overall Quality of Life

Dementia can significantly impact your senior’s quality of life, causing him/her to feel isolated, agitated, frustrated, depressed, and embarrassed. Your senior’s inability to perform daily tasks and remember simple things can affect his/her emotional wellbeing as well.

Patients with dementia often land up in hospitals mainly due to fractures, urinary tract or chest infections, or strokes. These patients have twice as many hospital stays every year compared to other seniors, contributing to a total annual healthcare cost of $259 billion.

According to a research paper presented at the Annual Alzheimer’s Association International Conference, social interaction can significantly improve the quality of life of patients with dementia, ease their agitation, and reduce overall healthcare costs. Support from family, friends, and relatives can go a long way in building the confidence of elderly patients.

5. Social Stimulation Promotes Independence

Seniors with dementia need assistance with personal and domestic tasks. Moreover, they often feel frustrated about and guilty of not being able to help with household activities. This increased dependence on others and feeling of being incapacitated often makes them irritable and damages their confidence levels.

Having compassionate loved ones who celebrate happy times with them and listen to their frustrations and offer solutions can be extremely comforting for seniors with dementia. This social stimulation fosters their independence as they feel connected and secure about their support system that assists them when required.

Involving your loved one in simple domestic activities like sorting out the post, organizing the laundry, arranging fresh flowers, and laying the table for a meal can make him/her feel involved and boost his/her confidence.

Seeing a loved one live with dementia can be painful. Fortunately, personal relationships and social environment can play a principal role in improving the patient’s cognitive skills and overall quality of life. Caregivers, family members, and friends can help their ailing loved one feel more valued by being around him/her during this tough period.

Conclusion:

There is mounting evidence highlighting the role social interaction plays in improving the lives of seniors with dementia. The above points will help you encourage your senior to engage in activities that will build and strengthen his/her social circle, enabling him/her to live a fulfilling life.

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Evan Thompson, CEO and founder of Senior.One has a long standing interest in finding solutions for seniors. He helps connect senior citizens and their family members with elder care service providers and find the resources they need in one place. He offers information on nursing homes, hospice, financial planning, adult care, lifestyle and assisted living facilities in Albuquerque. He provides information on housing, medical professionals, financial planning services, and lifestyle options.

Why thank you can’t wait

Why thank you can’t wait

Our son, Ben, is responsible for bringing the most remarkable people into our family’s life. They’ve come in the form of teachers, therapists, bus drivers and service providers – all caregivers who have shared their life with ours. I’ve learned that there’s no good reason to wait to say thank you.

Ben was born with severe cognitive, physical and speech development issues that require 24-hour care. If not for his caregivers, I don’t think Ben or our family would be in the good place that we are today.

The relationships we’ve developed with Ben’s caregivers have helped us establish a strong network of support. We are grateful for them and their willingness to care and love him as much as we do.

They’re caregiving has extended further than their job duties. When I’ve needed advice about how to approach a situation or vented about bureaucratic issues that prevented Ben from receiving services, they’ve provided insight or a listening ear to help get me through the tough times.

They hear the words, “thank you,” from me on a regular basis, but I also attempt to do something special for them as well.

Here are 5 ways to say thank you throughout the year:

Create a care package

Put special items in a box or reusable bag to show your appreciation for their work. Bus drivers and bus monitors are often underappreciated for what they do. A care package with a box of tissues, baby wipes, paper towels and glass cleaner will make them feel appreciated and help them be prepared for eventual situations. It also saves them having to buy these items with personal funds.

Consider making a “survive the first week” box for a teacher. Send in a tote bag with lip balm, mints, aspirin, a chocolate bar and other personal items that the teacher can have at their disposal during that hectic first weeks of school.

Give a gift for the road

Therapists often drive throughout the day traveling to different schools and homes to work with clients. Purchase a small lunch bag and fill it with a drink, snack and a magazine for a treat in between clients.

Many caregivers would appreciate a gift card to a local coffee shop or cafe so they can have a moment alone.

Volunteer your time

In some cases, giving a bit of your time can help ease the pressure off a caregiver or give them the opportunity to attend a special event.

I’m active with a leadership team at my son’s school because his teacher asked me to a be a part of the group. His teacher represents the interests of the special education program, and I can show my support of her and advocate about issues that affect her class.

Make or bake something

My favorite gift is a handmade bookmark that has the poem, “You’ll never know” printed on it. Add a bookmark to a book by a caregiver’s favorite author, a paperback for the beach or a volume of inspirational poems.

Not crafty and don’t have the time to bake? Pick-up store-bought muffins or cookies. It shows someone that you care about them.

Write a note

Most of us worry about stumbling over the right words to say how we feel about someone. In fact, that apprehension sometimes prevents us from ever writing the note. But words can mean so much to the receiver. Say thank you, pick one thing you are grateful for and sign it with your name. That’s it.

At the end of each year, I write the bus driver and monitor a note telling them how much it’s meant for me to know that Ben was in safe and capable hands while on the bus.

 

Are you waiting to say thank you to someone special in your life? Try one of the ideas above or use one as an inspiration to develop your own unique thank you.

Doing this already? Tell us who you show appreciation to. How do you say thank you? Add your ideas in the comment section.


vanessaVanessa Infanzon is mom to three beautiful boys. Her oldest son, Ben, is a smart, funny and determined 14-year-old. He doesn’t let anything stop him from doing what he loves – swimming, being outdoors and eating out. Vanessa is also a contributing writer for Ross Feller Casey.

 

Tips for the Sandwich Generation

Tips for the Sandwich Generation

The National Alliance for Caregiving and AARP issued a joint report that said “a 49 year old woman caring for a 69 year old female relative” is the average caregiver. They are also women with children and a job. The majority of the estimated 40 million caregivers are members of the sandwich generation. These are people  sandwiched between caring for their own children and taking care of their parents. Throw in partners and grandchildren and you are sandwiched in multiple full time roles. The addition of the caregiver role along with these other demands associated with this profile makes being a caregiver all the more challenging.

The challenge of balancing multiple responsibilities is real and great. Here are some management tips to keep in mind:

  • Don’t be afraid to say no when you are asked to do something you know you cannot do. You are entitled to do this without heaping guilt on yourself.
  • Create a list of priorities. Set daily and weekly priorities. Keep in mind while doing this that inherent in these caregiver profile is the possibility that things can change or a crisis can arise. Give yourself permission to reprioritize as circumstances change. Allow yourself some flexibility as needed.
  • Remember to take care of yourself. The biggest mistake caregivers make is forgetting to take care of yourselves. If you burn out then you will not be capable of helping anyone else. If you don’t want to do it for you do it for the other people close to you that are a part of your daily life.
  • Give yourself permission to ask for help. No matter how efficient and superhuman you are there are going to be moments that arise when you will need help. It does not mean you are a failure. It is important to identify other people that you can call on when needed. It may be a relative, a neighbor, a friend, or someone from church. Try using Peapod or hiring someone to help with cleaning. If you need help with caregiving consider consulting a geriatric care manager to help you assess and find the help that is needed. There is a national site to consult that will help link you to people in your area @ https://www.aginglifecare.org/ALCA/About_Aging_Life_Care/Find_an_Aging_Life_Care_Expert/ALCA/About_Aging_Life_Care/Search/Find_an_Expert.aspx?hkey=78a6cb03-e912-4993-9b68-df1573e9d8af

 

A key aspect for caregivers to be successful is to create a mindfulness plan. This means to incorporate techniques in your daily life that will help nurture and recharge yourself. Here are some suggestions on what you can use in your caregiver self care regime:

 

  • Take care of your body. (Eat well, get enough sleep, and exercise as best you can)
  • Focus on the present. Celebrate the little victories and positive things that happen each day. It may be something small like helping a loved one get dressed or go outside. They are still victories and are worth celebrating.
  • Find a kindred spirit to talk to. Identify someone in your life that you can go to  and talk candidly about the good and bad things that are going on in your life. Pick someone you trust and can laugh and cry with if needed. If you don’t have someone like that in your life consider finding a counselor or therapist that can be there to offer you this all important emotional support. Chat rooms online are also a great place to get support and hear from others with shared experiences. They can empathize and may have helpful tips culled from their personal experience.
  • Include joyful activities in your role as a caregiver or a parent. Choose activities you enjoy doing. Play music and dance with your kids and the person you are taking care of. If your care recipient can’t dance then pick songs you both like and sing. Find things that bring all parties pleasure and make your time together more meaningful.
  • Collaborate rather than confront. This basically means pick and choose your battles. Often times caregivers will find that there are many ongoing battles particularly with people with dementia or medical problems that cause loss of mental or physical function. This creates loss of independence. Feelings of depression and anger can emerge that frequently are focused on caregivers. If the care recipient insists it is Tuesday and you know it is Thursday don’t challenge it. If they are wearing clothes that don’t match let it go. As long as what they do or say is not compromising health or safety try not to confront them.
The uncertain future of genetic testing

The uncertain future of genetic testing

Bringing genetics into medicine leads to more accuracy, better diagnosis and personalised treatment – but not for all. Carrie Arnold meets families for whom gene testing has led only to unanswered questions.

AnneMarie Ciccarella, a fast-talking 57-year-old brunette with a more than a hint of a New York accent, thought she knew a lot about breast cancer. Her mother was diagnosed with the disease in 1987, and several other female relatives also developed it. When doctors found a suspicious lump in one of her breasts that turned out to be cancer, she immediately sought out testing to look for mutations in the two BRCA genes, which between them account for around 20 per cent of families with a strong history of breast cancer.

Ciccarella assumed her results would be positive. They weren’t. Instead, they identified only what’s known as a variant of unknown or uncertain significance (VUS) in both BRCA1 and BRCA2. Unlike pathogenic mutations that are known to cause disease or benign ones that don’t, these genetic variations just aren’t understood enough to know if they are involved or not.

“I thought you could have a mutated gene or not, and with all the cancer in my family, I believed I would carry a mutation. I didn’t know there was this huge third category,” she says. “I got no information – it felt like a huge waste of blood to get a giant question mark.”

Thousands of people have had their BRCA genes tested for increased genetic susceptibility to breast, ovarian, prostate and other cancers. About 5 per cent have learned that they carry a VUS. That number is even higher for other genes: in one study, almost 20 per cent of genetic tests returned a VUS result.

“That’s a lot of uncertainty,” says Robert Klitzman, a bioethicist at Columbia University in New York. People want genetic tests to be like pregnancy tests, he explains: “You’re either pregnant or you’re not. Instead, they’re more like a weather report.” And most people aren’t prepared to cope with the probabilities and uncertainties that entails.

When scientists surveyed a group of women one year after they received BRCA gene test results, the women whose results were uncertain or uninformative were feeling much more stress and anxiety than those whose results were clearly either pathogenic or benign. A follow-up study showed that the higher the risk an individual thought her result indicated, and the less tolerant she was of uncertainty, the more likely she was to experience serious long-term distress.

Even before her sequencing results came in, Ciccarella had decided on a bilateral mastectomy based on her family history. For her, the question of whether she would one day develop breast cancer had been answered, and in the worst possible way. But she still wanted information for her son and daughter so they could know whether they had inherited a genetic risk of cancer. Like a number of families, they are learning that genetic sequencing won’t deliver answers for everyone.

We all have tons of variations in our genes, most of which are extremely rare and, by the very nature of rarity, uninterpretable.

We are all mutants. The three billion pieces of DNA that make us who we are were long thought to be constant, chiselled in granite like a classical monument, with only tiny changes made here and there. Scientists used to believe that DNA mutations were largely harmful.

By the late 1990s and early 2000s, as the first sequences of the human genome came rolling in, researchers realised that their view of mutations was completely backwards. Instead of being rarities that almost inevitably harm health, mutations litter the human genome. The average human carries around 400 unique mutations, and most of us are none the worse because of them.

This challenged some basic tenets of genetics, as well as the ways that scientists and physicians interpreted genetic tests.

When Robert Resta, a genetic counsellor at the Swedish Medical Center in Seattle, first began examining genetic test results in the late 1980s, he could identify only chromosomal abnormalities or alterations of massive amounts of DNA. When other types of genetic tests were introduced, such as those for detecting the mutations in the CFTR gene that cause cystic fibrosis, interpretation was still reasonably straightforward. Because most of the people who had their CFTR gene sequenced showed clinical signs of cystic fibrosis, Resta could be reasonably confident that an observed mutation in that gene was the one that had led to the disease. In the past few years, however, the price of genetic sequencing has fallen dramatically, and doctors are increasingly requesting DNA testing earlier in the diagnostic process. As more data is gathered, the sheer number of mutations we all carry becomes more significant.

“It turns out mutations are the norm. You expect to find mutations in a gene. It’s a very different way of thinking about the human genome. If you don’t find a mutation, your machine is probably having technical difficulty,” Resta says.

When scientists test for mutations in large numbers of genes with a single test, known as a gene panel, they are virtually guaranteed to find at least one VUS, says Colleen Caleshu, a genetic counsellor at Stanford University’s Center for Inherited Cardiovascular Disease. “The more genes you look at, the more variation you’ll find,” she adds. “We all have tons of variations in our genes, most of which are extremely rare and, by the very nature of rarity, uninterpretable.” In short, there isn’t enough data to know what you are seeing.

© Catherine Losing

This grey area has only expanded as next-generation DNA sequencing has led to the growing use of gene panels, to look for mutations in a range of genes that may be related to a patient’s symptoms. Of the three possible results – pathogenic, benign, or unknown – pathogenic is the least common, says Resta. You’re much more likely to get uncertainty.

If interpreting genetic testing results is difficult for clinicians, it’s also tremendously hard for patients. Yvonne Bombard has spent the last several years of her career as a genomics health services researcher at St Michael’s Hospital in Toronto, working to understand how families make sense of genetic testing results.

“There’s very little research on the impact of uncertain results on families yet – the technology is just too new,” Bombard says.

A small study in Psycho-Oncology surveyed 24 women with breast or ovarian cancer who had received VUS results for their genetic testing. Many of them had a distorted perception of what those results meant. Although two-thirds correctly remembered three years later that the variants detected by the test were unclassified, 79 per cent interpreted the results as a higher genetic risk for developing cancer. One-third had also made significant medical changes in their lives based only on their test results, which Resta and Caleshu do not recommend.

Families of children with suspected genetic diseases have similar difficulties. Parents tend to interpret any variant that’s not classified ‘benign’ as being the cause of their child’s disease, explains Caleshu. But she appreciates how it’s hard not to do that, especially when families have been looking for answers for so long.

Families can feel let down by the medical establishment, who often seem to throw up their hands when a patient defies diagnosis, and in the absence of definitive answers it’s all too easy to believe that the genetic variants identified on the test must be what’s wrong. One of Caleshu’s main jobs is providing pre-test counselling so that patients understand the risks and the limitations of testing. She says her team have changed the way they present results, so that patients and doctors don’t read too much into a VUS. Even with the right genetic counselling, however, uncertainty can be agonising.

One place says one thing, one place says another, and I’m stuck in the middle with a daughter who just found a suspicious lump.

Ciccarella had watched her mother endure chemotherapy, and had undergone a similar gruelling regimen herself. If she could get genetic information that might help her children and any future generations to avoid that agony by using improved screening, reproductive planning and prophylactic mastectomies, then she was determined to make that happen.

She decided to get another lab to review the results of her genetic tests, and requested the data from the sequencing company, Myriad Genetics. They refused. Since they owned patents on these genes, no one else could have their proprietary genetic data.

So she followed with interest a lawsuit by the American Civil Liberties Union (ACLU) against Myriad’s genetic patent, hoping that if they won, she could get a second opinion on her unclassified variants after all. In 2013, the US Supreme Court found in favour of the ACLU, invalidating Myriad’s patents. Myriad still refused to release raw sequencing data, however, saying that doing so would violate the health privacy law known as HIPAA.

Ciccarella teamed up with the ACLU and three other people who wanted access to their full sequencing data and prepared to file a suit against Myriad in 2016, arguing that HIPAA actually guarantees patients the right to their own data. On 18 May, one day before the suit was due to be filed, Myriad reversed their stance and released the sequencing data to Ciccarella and the others. She found that Myriad had reclassified one of her VUSs to benign, but when she checked this against public databases of genetic variants, she found that no one else had changed this classification.

“So who’s right? There are two different opinions – that’s exactly the problem. One place says one thing, one place says another, and I’m stuck in the middle with a daughter who just found a suspicious lump,” Ciccarella says.

Ciccarella’s case may have been settled out of court, but another case is showing that the battles over genetic testing uncertainty are just beginning. In February 2016, Amy Williams filed a lawsuit against Athena Diagnostics, ADI Holding Company and Quest Diagnostics (Athena’s parent company) relating to the death of her son, Christian.

© Catherine Losing

Christian was born a seemingly healthy blond-haired, blue-eyed cherub on 23 August 2005. Just before Christmas that year, he had his first massive seizure. Many more followed. Despite countless medications and tests, no one could figure out what was causing his unrelenting seizures. He had a massive battery of tests in early 2007, including the sequencing of a gene called SCN1A. Athena, which performed the genetic tests, reported that he had a VUS there. With no clear genetic answers, his doctors treated him for an undiagnosed mitochondrial disorder, although his treatments had minimal effects on his continuing seizures.

On 5 January 2008, Christian went to bed after celebrating a belated Christmas holiday with his family. Videos taken that day gave no hint that he’d be dead by morning. The official cause of death was listed as a seizure.

Six years later, thinking of starting a family again, Williams wanted to get her own DNA sequenced to learn whether the disease that had affected her son could affect any future children. Again, she turned to Athena, but as well as her own results, she also requested Christian’s 2007 lab report. She saw from the revised report they provided that Athena had reclassified Christian’s VUS to a disease-associated mutation, which suggested he had a form of childhood epilepsy called Dravet syndrome (also known as severe myoclonic epilepsy of infancy). Several of the medications used to treat seizures in young children, including Christian, are toxic to children with Dravet and can increase the risk of death.

Williams believes this means the treatment Christian received was only making things worse.

What she now wanted to know from Athena was when and why they reclassified the variant. As Williams, a former special education teacher, taught herself the nuances of scientific literature, she found out that the same SCN1A mutation Christian carried had been identified in an Australian family in 2006, before Christian’s DNA was tested. Even more concerning was a patent document on the SCN1A gene that listed this mutation (a change in a single amino acid in the gene) as pathogenic. When Athena refused to answer, Williams sued.

Her allegations include that Athena had had enough information to reclassify Christian’s mutation before he was tested, and that if they had done so, it would have changed his diagnosis and treatment such that his death from a seizure related to Dravet syndrome could have been avoided.

Athena and the other two companies reject these allegations and argue that the case should be dismissed. They say that the 2007 lab report emphasised the inconclusiveness of the test results, that Dravet could have been the cause of Christian’s seizures without his medication being implicated, that further testing was strongly recommended (in particular testing of his parents, which was offered at no additional charge but not taken up), and that a conclusive diagnosis could be reached only by additional testing. Quest, Athena’s parent company, declined to comment on this ongoing legal action, but the case has caused many in the genetic sequencing community to consider what changes may be required in the future.

© Catherine Losing

This case reflects the uncertainties of modern genetic testing and the tension that can cause for patients and their families, and illustrates the increasing scrutiny of clinical genetic sequencing labs, how they share data on variants, and how this data is interpreted. Regulators, researchers, patients and the sequencing labs themselves will have to work together to find ways to improve these processes.

No matter how much they tell you, you believe you’re going to get an answer. It’s hard to hear that this is where it ends.

Tess Bigelow is a bubbly seven-year-old with light brown hair that curls forward into her face, framing a pair of bright pink glasses. A few months after Tess was born, in November 2009, her parents, Bo and Kate, noticed that something was wrong. She wasn’t rolling over or meeting other developmental milestones. By June 2010, her parents realised that something was very wrong.

“She was not interacting with other people. It was just like she was checked out. We knew she was in there, we just couldn’t get to her,” her father says.

As she got older, Tess didn’t start to speak or communicate, and she continued to have problems walking and standing. A full diagnostic workup revealed nothing, so genetics experts in Boston and the Bigelows’ hometown of Portland, Maine, recommended sequencing all of her genes. The team were hopeful that this would turn up results, but they cautioned the Bigelows not to get their hopes up. Tess’s sequencing revealed a mutation in a gene called USP7, but no one could say whether this was the cause of her illness.

“No matter how much they tell you, you believe you’re going to get an answer. It’s hard to hear that this is where it ends,” Bo Bigelow says.

He began learning everything he could about USP7. There wasn’t much. Researchers were just starting to learn what the gene did, and he couldn’t find any other families with a USP7 mutation. So he decided to see if he could make those other families come to him. In a public Facebook post he drafted late at night in August 2015, Bigelow described his daughter’s symptoms, along with her sequencing results. He crossed his fingers and clicked “share”.

The post went viral. One person shared it to Reddit, from where a graduate student brought it to the attention of Christian Schaaf, a geneticist at Baylor College of Medicine in Houston, Texas. He was working on USP7 and other genes that had been linked to genetic conditions like Prader–Willi syndrome.

USP7 is part of our cells’ protein recycling machinery, making sure that cells dump their garbage quickly enough to prevent the buildup of proteins that are damaged or no longer needed, but not so quickly that it removes healthy proteins. Suspecting that faults in USP7 could lead to disease, Schaaf had searched through Baylor’s own genetic sequencing databases and other genome data depositories, and found seven clinical cases of children who had mutations in USP7.

By the end of the day that his post was shared on Facebook, Bigelow had received an email from Mike Fountain, one of Schaaf’s co-authors on the research paper about the USP7 mutations and their links to disease. On the phone the next morning, Fountain outlined the array of symptoms experienced by the seven other children, and they all sounded remarkably like Tess. It looked like they had found the smoking gun, but only the results of more laboratory studies will show for sure whether this was the cause of Tess’s condition.

Like many parents of children with rare diseases and special needs, Bigelow has come to live with the uncertainty. But he and other parents and patients have begun sharing their genetic data through portals like MyGene2 to help others. Created by Michael Bamshad and Jessica Chong, MyGene2 lets people share their own sequencing results in the hopes of facilitating research and finding other families with similar medical problems. Other initiatives are springing up, too, and researchers hope they will reduce the uncertainty that continues to plague genetic sequencing.

Heidi Rehm is a clinical medical geneticist at the Broad Institute in Cambridge, Massachusetts. She led teams at the US National Institutes for Health that created two databases helping to improve sharing and curation of genetic data. ClinVar, launched in 2012, links genetic variants with symptoms. ClinGen, introduced the following year, is described as “building an authoritative central resource that defines the clinical relevance of genes and variants for use in precision medicine and research”. With these two resources, commercial and academic sequencing labs can combine their expertise to offer people the most accurate description of what their genetic variants mean.

The depositing of results from large sequencing studies, such as the Exome Aggregation Consortium at the Broad Institute, also promises to help reduce genetic uncertainty. Some of the earliest results of this initiative provided some of the largest reclassifications of VUS results yet, according to Rehm. Nearly all of those reclassifications were shifting a VUS to benign, an indication of the sheer volume of normal variation and mutation inherent in all of our genetic blueprints.

To really get a good handle on all the variation in humans, scientists are going to need to sequence tens of millions of people. And the only way to ever get these kinds of large numbers is to share data.

But regardless of how good the databases get and how many people have their genomes sequenced, uncertainty will never completely go away.

Every time our cells divide and copy their DNA, mutations can arise. This uncertainty may be maddening for patients looking for answers, but it’s as much stamped into our genetic blueprint as the double helix itself.

AnneMarie Ciccarella, a fast-talking 57-year-old brunette with a more than a hint of a New York accent, thought she knew a lot about breast cancer. Her mother was diagnosed with the disease in 1987, and several other female relatives also developed it. When doctors found a suspicious lump in one of her breasts that turned out to be cancer, she immediately sought out testing to look for mutations in the two BRCA genes, which between them account for around 20 per cent of families with a strong history of breast cancer.

Ciccarella assumed her results would be positive. They weren’t. Instead, they identified only what’s known as a variant of unknown or uncertain significance (VUS) in both BRCA1 and BRCA2. Unlike pathogenic mutations that are known to cause disease or benign ones that don’t, these genetic variations just aren’t understood enough to know if they are involved or not.

“I thought you could have a mutated gene or not, and with all the cancer in my family, I believed I would carry a mutation. I didn’t know there was this huge third category,” she says. “I got no information – it felt like a huge waste of blood to get a giant question mark.”

Thousands of people have had their BRCA genes tested for increased genetic susceptibility to breast, ovarian, prostate and other cancers. About 5 per cent have learned that they carry a VUS. That number is even higher for other genes: in one study, almost 20 per cent of genetic tests returned a VUS result.

 

Extra

We need to change the way we think about genetic variation

Genetic variants that cause disease are rare, but this does not mean that all rare variants cause disease. So should we change the way we manage uncertainty in genetic testing?

“That’s a lot of uncertainty,” says Robert Klitzman, a bioethicist at Columbia University in New York. People want genetic tests to be like pregnancy tests, he explains: “You’re either pregnant or you’re not. Instead, they’re more like a weather report.” And most people aren’t prepared to cope with the probabilities and uncertainties that entails.

When scientists surveyed a group of women one year after they received BRCA gene test results, the women whose results were uncertain or uninformative were feeling much more stress and anxiety than those whose results were clearly either pathogenic or benign. A follow-up study showed that the higher the risk an individual thought her result indicated, and the less tolerant she was of uncertainty, the more likely she was to experience serious long-term distress.

Even before her sequencing results came in, Ciccarella had decided on a bilateral mastectomy based on her family history. For her, the question of whether she would one day develop breast cancer had been answered, and in the worst possible way. But she still wanted information for her son and daughter so they could know whether they had inherited a genetic risk of cancer. Like a number of families, they are learning that genetic sequencing won’t deliver answers for everyone.

We all have tons of variations in our genes, most of which are extremely rare and, by the very nature of rarity, uninterpretable.

We are all mutants. The three billion pieces of DNA that make us who we are were long thought to be constant, chiselled in granite like a classical monument, with only tiny changes made here and there. Scientists used to believe that DNA mutations were largely harmful.

By the late 1990s and early 2000s, as the first sequences of the human genome came rolling in, researchers realised that their view of mutations was completely backwards. Instead of being rarities that almost inevitably harm health, mutations litter the human genome. The average human carries around 400 unique mutations, and most of us are none the worse because of them.

This challenged some basic tenets of genetics, as well as the ways that scientists and physicians interpreted genetic tests.

When Robert Resta, a genetic counsellor at the Swedish Medical Center in Seattle, first began examining genetic test results in the late 1980s, he could identify only chromosomal abnormalities or alterations of massive amounts of DNA. When other types of genetic tests were introduced, such as those for detecting the mutations in the CFTR gene that cause cystic fibrosis, interpretation was still reasonably straightforward. Because most of the people who had their CFTR gene sequenced showed clinical signs of cystic fibrosis, Resta could be reasonably confident that an observed mutation in that gene was the one that had led to the disease. In the past few years, however, the price of genetic sequencing has fallen dramatically, and doctors are increasingly requesting DNA testing earlier in the diagnostic process. As more data is gathered, the sheer number of mutations we all carry becomes more significant.

“It turns out mutations are the norm. You expect to find mutations in a gene. It’s a very different way of thinking about the human genome. If you don’t find a mutation, your machine is probably having technical difficulty,” Resta says.

When scientists test for mutations in large numbers of genes with a single test, known as a gene panel, they are virtually guaranteed to find at least one VUS, says Colleen Caleshu, a genetic counsellor at Stanford University’s Center for Inherited Cardiovascular Disease. “The more genes you look at, the more variation you’ll find,” she adds. “We all have tons of variations in our genes, most of which are extremely rare and, by the very nature of rarity, uninterpretable.” In short, there isn’t enough data to know what you are seeing.

© Catherine Losing

This grey area has only expanded as next-generation DNA sequencing has led to the growing use of gene panels, to look for mutations in a range of genes that may be related to a patient’s symptoms. Of the three possible results – pathogenic, benign, or unknown – pathogenic is the least common, says Resta. You’re much more likely to get uncertainty.

If interpreting genetic testing results is difficult for clinicians, it’s also tremendously hard for patients. Yvonne Bombard has spent the last several years of her career as a genomics health services researcher at St Michael’s Hospital in Toronto, working to understand how families make sense of genetic testing results.

“There’s very little research on the impact of uncertain results on families yet – the technology is just too new,” Bombard says.

A small study in Psycho-Oncology surveyed 24 women with breast or ovarian cancer who had received VUS results for their genetic testing. Many of them had a distorted perception of what those results meant. Although two-thirds correctly remembered three years later that the variants detected by the test were unclassified, 79 per cent interpreted the results as a higher genetic risk for developing cancer. One-third had also made significant medical changes in their lives based only on their test results, which Resta and Caleshu do not recommend.

Families of children with suspected genetic diseases have similar difficulties. Parents tend to interpret any variant that’s not classified ‘benign’ as being the cause of their child’s disease, explains Caleshu. But she appreciates how it’s hard not to do that, especially when families have been looking for answers for so long.

Families can feel let down by the medical establishment, who often seem to throw up their hands when a patient defies diagnosis, and in the absence of definitive answers it’s all too easy to believe that the genetic variants identified on the test must be what’s wrong. One of Caleshu’s main jobs is providing pre-test counselling so that patients understand the risks and the limitations of testing. She says her team have changed the way they present results, so that patients and doctors don’t read too much into a VUS. Even with the right genetic counselling, however, uncertainty can be agonising.

One place says one thing, one place says another, and I’m stuck in the middle with a daughter who just found a suspicious lump.

Ciccarella had watched her mother endure chemotherapy, and had undergone a similar gruelling regimen herself. If she could get genetic information that might help her children and any future generations to avoid that agony by using improved screening, reproductive planning and prophylactic mastectomies, then she was determined to make that happen.

She decided to get another lab to review the results of her genetic tests, and requested the data from the sequencing company, Myriad Genetics. They refused. Since they owned patents on these genes, no one else could have their proprietary genetic data.

So she followed with interest a lawsuit by the American Civil Liberties Union (ACLU) against Myriad’s genetic patent, hoping that if they won, she could get a second opinion on her unclassified variants after all. In 2013, the US Supreme Court found in favour of the ACLU, invalidating Myriad’s patents. Myriad still refused to release raw sequencing data, however, saying that doing so would violate the health privacy law known as HIPAA.

Ciccarella teamed up with the ACLU and three other people who wanted access to their full sequencing data and prepared to file a suit against Myriad in 2016, arguing that HIPAA actually guarantees patients the right to their own data. On 18 May, one day before the suit was due to be filed, Myriad reversed their stance and released the sequencing data to Ciccarella and the others. She found that Myriad had reclassified one of her VUSs to benign, but when she checked this against public databases of genetic variants, she found that no one else had changed this classification.

“So who’s right? There are two different opinions – that’s exactly the problem. One place says one thing, one place says another, and I’m stuck in the middle with a daughter who just found a suspicious lump,” Ciccarella says.

Ciccarella’s case may have been settled out of court, but another case is showing that the battles over genetic testing uncertainty are just beginning. In February 2016, Amy Williams filed a lawsuit against Athena Diagnostics, ADI Holding Company and Quest Diagnostics (Athena’s parent company) relating to the death of her son, Christian.

© Catherine Losing

Christian was born a seemingly healthy blond-haired, blue-eyed cherub on 23 August 2005. Just before Christmas that year, he had his first massive seizure. Many more followed. Despite countless medications and tests, no one could figure out what was causing his unrelenting seizures. He had a massive battery of tests in early 2007, including the sequencing of a gene called SCN1A. Athena, which performed the genetic tests, reported that he had a VUS there. With no clear genetic answers, his doctors treated him for an undiagnosed mitochondrial disorder, although his treatments had minimal effects on his continuing seizures.

On 5 January 2008, Christian went to bed after celebrating a belated Christmas holiday with his family. Videos taken that day gave no hint that he’d be dead by morning. The official cause of death was listed as a seizure.

Six years later, thinking of starting a family again, Williams wanted to get her own DNA sequenced to learn whether the disease that had affected her son could affect any future children. Again, she turned to Athena, but as well as her own results, she also requested Christian’s 2007 lab report. She saw from the revised report they provided that Athena had reclassified Christian’s VUS to a disease-associated mutation, which suggested he had a form of childhood epilepsy called Dravet syndrome (also known as severe myoclonic epilepsy of infancy). Several of the medications used to treat seizures in young children, including Christian, are toxic to children with Dravet and can increase the risk of death.

Williams believes this means the treatment Christian received was only making things worse.

What she now wanted to know from Athena was when and why they reclassified the variant. As Williams, a former special education teacher, taught herself the nuances of scientific literature, she found out that the same SCN1A mutation Christian carried had been identified in an Australian family in 2006, before Christian’s DNA was tested. Even more concerning was a patent document on the SCN1A gene that listed this mutation (a change in a single amino acid in the gene) as pathogenic. When Athena refused to answer, Williams sued.

Her allegations include that Athena had had enough information to reclassify Christian’s mutation before he was tested, and that if they had done so, it would have changed his diagnosis and treatment such that his death from a seizure related to Dravet syndrome could have been avoided.

Athena and the other two companies reject these allegations and argue that the case should be dismissed. They say that the 2007 lab report emphasised the inconclusiveness of the test results, that Dravet could have been the cause of Christian’s seizures without his medication being implicated, that further testing was strongly recommended (in particular testing of his parents, which was offered at no additional charge but not taken up), and that a conclusive diagnosis could be reached only by additional testing. Quest, Athena’s parent company, declined to comment on this ongoing legal action, but the case has caused many in the genetic sequencing community to consider what changes may be required in the future.

© Catherine Losing

This case reflects the uncertainties of modern genetic testing and the tension that can cause for patients and their families, and illustrates the increasing scrutiny of clinical genetic sequencing labs, how they share data on variants, and how this data is interpreted. Regulators, researchers, patients and the sequencing labs themselves will have to work together to find ways to improve these processes.

No matter how much they tell you, you believe you’re going to get an answer. It’s hard to hear that this is where it ends.

Tess Bigelow is a bubbly seven-year-old with light brown hair that curls forward into her face, framing a pair of bright pink glasses. A few months after Tess was born, in November 2009, her parents, Bo and Kate, noticed that something was wrong. She wasn’t rolling over or meeting other developmental milestones. By June 2010, her parents realised that something was very wrong.

“She was not interacting with other people. It was just like she was checked out. We knew she was in there, we just couldn’t get to her,” her father says.

As she got older, Tess didn’t start to speak or communicate, and she continued to have problems walking and standing. A full diagnostic workup revealed nothing, so genetics experts in Boston and the Bigelows’ hometown of Portland, Maine, recommended sequencing all of her genes. The team were hopeful that this would turn up results, but they cautioned the Bigelows not to get their hopes up. Tess’s sequencing revealed a mutation in a gene called USP7, but no one could say whether this was the cause of her illness.

“No matter how much they tell you, you believe you’re going to get an answer. It’s hard to hear that this is where it ends,” Bo Bigelow says.

He began learning everything he could about USP7. There wasn’t much. Researchers were just starting to learn what the gene did, and he couldn’t find any other families with a USP7 mutation. So he decided to see if he could make those other families come to him. In a public Facebook post he drafted late at night in August 2015, Bigelow described his daughter’s symptoms, along with her sequencing results. He crossed his fingers and clicked “share”.

The post went viral. One person shared it to Reddit, from where a graduate student brought it to the attention of Christian Schaaf, a geneticist at Baylor College of Medicine in Houston, Texas. He was working on USP7 and other genes that had been linked to genetic conditions like Prader–Willi syndrome.

USP7 is part of our cells’ protein recycling machinery, making sure that cells dump their garbage quickly enough to prevent the buildup of proteins that are damaged or no longer needed, but not so quickly that it removes healthy proteins. Suspecting that faults in USP7 could lead to disease, Schaaf had searched through Baylor’s own genetic sequencing databases and other genome data depositories, and found seven clinical cases of children who had mutations in USP7.

By the end of the day that his post was shared on Facebook, Bigelow had received an email from Mike Fountain, one of Schaaf’s co-authors on the research paper about the USP7 mutations and their links to disease. On the phone the next morning, Fountain outlined the array of symptoms experienced by the seven other children, and they all sounded remarkably like Tess. It looked like they had found the smoking gun, but only the results of more laboratory studies will show for sure whether this was the cause of Tess’s condition.

Like many parents of children with rare diseases and special needs, Bigelow has come to live with the uncertainty. But he and other parents and patients have begun sharing their genetic data through portals like MyGene2 to help others. Created by Michael Bamshad and Jessica Chong, MyGene2 lets people share their own sequencing results in the hopes of facilitating research and finding other families with similar medical problems. Other initiatives are springing up, too, and researchers hope they will reduce the uncertainty that continues to plague genetic sequencing.

Heidi Rehm is a clinical medical geneticist at the Broad Institute in Cambridge, Massachusetts. She led teams at the US National Institutes for Health that created two databases helping to improve sharing and curation of genetic data. ClinVar, launched in 2012, links genetic variants with symptoms. ClinGen, introduced the following year, is described as “building an authoritative central resource that defines the clinical relevance of genes and variants for use in precision medicine and research”. With these two resources, commercial and academic sequencing labs can combine their expertise to offer people the most accurate description of what their genetic variants mean.

The depositing of results from large sequencing studies, such as the Exome Aggregation Consortium at the Broad Institute, also promises to help reduce genetic uncertainty. Some of the earliest results of this initiative provided some of the largest reclassifications of VUS results yet, according to Rehm. Nearly all of those reclassifications were shifting a VUS to benign, an indication of the sheer volume of normal variation and mutation inherent in all of our genetic blueprints.

To really get a good handle on all the variation in humans, scientists are going to need to sequence tens of millions of people. And the only way to ever get these kinds of large numbers is to share data.

But regardless of how good the databases get and how many people have their genomes sequenced, uncertainty will never completely go away.

Every time our cells divide and copy their DNA, mutations can arise. This uncertainty may be maddening for patients looking for answers, but it’s as much stamped into our genetic blueprint as the double helix itself.

This article first appeared on Mosaic and is republished here under a Creative Commons licence.

Advocating for a family member in the hospital

Advocating for a family member in the hospital

It’s incredibly stressful to have someone you love in the hospital. Not only are you worried about their health, it almost seems like hospitals were designed to be as stressful as possible! Constant interruptions, florescent lights, beeping and blinking machinery, and incredible levels of crowding guarantee we’re all on edge.

Sometimes, especially with teams of medical staff coming and going at random, I wonder if my son is getting the best care. Are these staff members familiar with his medical history? Do they have all the information they need? Are they ordering tests he doesn’t need and skipping over ones that might be more appropriate? Medical staff are rushed and exhausted…and only human.

After more than a decade of being in-and-out of hospitals with my son, I feel confident in my ability to advocate for him to get the best care possible.

I always keep a notebook with me. I take notes when I’m talking to the doctors, including their names and titles, so I can keep track of things. I ask questions of the doctors at the time, but I also have the details I’ll need to look things up on my own later and ask follow-up questions.

I ask staff members if it’s okay to contact them with questions and how they prefer to be contacted. If someone is okay with me emailing them questions I make sure not to abuse the privilege and be respectful of their time.

I stay calm. Yes, it’s an emergency for me and my son is my top priority. But I recognize that’s true of just about everyone in the hospital. Hospital staff need to balance the needs of all of their patients, so I’m firm in asking for the care he needs, but also remember that things can’t always happen on the timeline I’d like.

I’m persistent. It’s tough to find the right balance of making sure things aren’t forgotten without becoming that mom.

I’m open to suggestions. My son and I know his health best, but we’re in the hospital for a reason — these people are experts, too. It can be difficult, but I try to make sure we’re working with his medical team and not just trying to convince them to take the course of treatment we think is best.

I appreciate the staff. Hospital staff are people. They have good days and bad days, too. I try to remember this, thank them for their help, and cut them slack when they drop the ball. Treat others like you’d like to be treated.

Susie Miller

Family Caregiver Alliance launches an online service for family caregivers of adults with serious health conditions

Family Caregiver Alliance launches an online service for family caregivers of adults with serious health conditions

For the first time, family caregivers can get support and information tailored for their situation–free, secure, and accessible 24/7 SAN FRANCISCO, Sept. 12, 2017 /PRNewswire-USNewswire/ — Family Caregiver Alliance (FCA) announces the launch of FCA CareJourney™, a dynamic online service, mobile-ready that delivers specialized information directly to family caregivers. Based on FCA’s 40 years of service… (more…)

Older cancer patients rate own physical abilities as better than their caregivers do

Older cancer patients rate own physical abilities as better than their caregivers do

Older cancer patients and their caregivers often differ in their assessment of the patient’s physical abilities, with caregivers generally rating the patient’s physical function as poorer, according to a new study published in The Oncologist. The study also found that differences in assessment of physical abilities between patients and caregivers were associated with greater caregiver burden.

For as long as possible, older cancer patients are generally cared for in their own homes by family or friends, with spouses being the most common caregivers. This care can include everything from ensuring patients take their medication to transporting them to hospital appointments to bathing and dressing them, and can impose emotional, financial and physical burdens on caregivers.

“Caregivers are such an important part of our healthcare system, particularly for older adults with cancer,” says corresponding author Arti Hurria at City of Hope National Medical Center, CA. “We wanted to further understand the factors that are associated with caregiver burden.”

Based on their experiences treating older cancer patients, one factor Hurria and her colleagues at City of Hope thought might be important is differences in assessments of patient health and physical abilities between patients and their caregivers. “In daily practice we sometimes see a disconnect between what the patient perceives their general health and abilities to be in comparison to what the caregiver thinks. We wanted to see whether this disconnect impacted caregiver burden.”

To do this, Hurria and her colleagues questioned 100 older cancer patients being treated at City of Hope, together with their caregivers, about the patient’s general health and physical function, meaning their ability to perform everyday activities. They then compared the answers given by the patients and their respective caregivers. They also assessed the level of caregiver burden experienced by the caregivers, defined as a subjective feeling of stress caused by being overwhelmed by the demands of caring, by conducting a standard questionnaire on topics such as sleep disturbance, physical effort and patient behavior.

The 100 cancer patients, aged from 65 to 91, were suffering from a variety of different types of cancer, with the most common being lymphoma, breast cancer and gastrointestinal cancers. The ages of the caregivers ranged from 28 to 85 and the majority were female (73%), mainly either the spouse of the patient (68%) or an adult child (18%).

Hurria and her colleagues found that caregivers consistently rated patients as having poorer physical function and mental health and requiring more social support than the patients themselves did. However, only the disparity in the assessment of physical function was associated with greater caregiver burden. What is still unclear is the cause of this disparity.

“I think there are two possible explanations,” says first author Tina Hsu. “One is that older adults with cancer either don’t appreciate how much help they require or, more likely, they are able preserve their sense of independence and dignity through a perception that they feel they can do more than they really can. Alternatively, it is possible that caregivers who are more stressed out perceive their loved one to require more help than they actually do need. Most likely, the truth of how much help the patient actually needs lies somewhere between what patients and caregivers report.”

Based on their findings, Hsu, Hurria and their colleagues advise that clinicians should consider assessing caregiver burden in those caregivers who report the patient as being more dependent than the patient does themselves.

“Caregivers play an essential role in supporting older adults with cancer,” says Hsu. “We plan to further explore factors associated with caregiver burden in this population, particularly in those who are frailer and thus require even more hands-on support. We also hope to explore what resources caregivers of older adults with cancer feel they need to better help them with their role.”

Bruce A. Chabner, MD, Editor-in-Chief of The Oncologist, commented, “This report emphasizes the importance of direct communication between the health care team and the patient.  Among older patients, the reports of local caregivers may not accurately reflect the patient’s sense of well-being and symptoms.  The message is:  talk to the patient first!”


Article citation: “Are Disagreements in Caregiver and Patient Assessment of Patient Health Associated with Increased Caregiver Burden in Caregivers of Older Adults with Cancer?” Tina Hsu, Matthew Loscalzo, Rupal Ramani, Stephen Forman, Leslie Popplewell, Karen Clark, Vani Katheria, Rex Strowbridge, Redmond Rinehart, Dan Smith, Keith Matthews, Jeff Dillehunt, Tao Feng, David Smith, Canlan Sun, Arti Hurria. The Oncologist. Published Online: August 14, 2017; DOI: 10.1634/theoncologist.2017-0085. http://dx.doi.org/10.1634/theoncologist.2017-0085

About The Oncologist
Now celebrating its 22nd edition, this internationally peer-reviewed journal focuses on clear and concise interpretation addressing the multimodality diagnosis, treatment and quality of life of the cancer patient. Each issue is meant to impact the practice of oncology and to facilitate significant communication in the introduction of new medical treatments and technologies. The Oncologist is the official journal of the Society for Translational Oncology (STO).

About AlphaMed Press
Established in 1983, AlphaMed Press, which has offices in Durham, NC, San Francisco, CA, and Belfast, Northern Ireland, is the publisher of three internationally renowned peer-reviewed journals. The Oncologist® (www.TheOncologist.com), which is entering its 20th year, is devoted to community and hospital-based oncologists and physicians entrusted with cancer patient care. STEM CELLS® (www.StemCells.com), celebrating its 35th year, is the world’s first journal devoted to this fast paced field of research. STEM CELLS Translational Medicine® (www.StemCellsTM.com), currently in its sixth year, is dedicated to significantly advancing the clinical utilization of stem cell molecular and cellular biology.

About Wiley
Wiley, a global company, helps people and organizations develop the skills and knowledge they need to succeed. Our online scientific, technical, medical and scholarly journals, combined with our digital learning, assessment and certification solutions, help universities, learned societies, businesses, governments and individuals increase the academic and professional impact of their work. For more than 200 years, we have delivered consistent performance to our stakeholders. The company’s website can be accessed at www.wiley.com.

Nursing Home Disaster Plans Often Faulted As ‘Paper Tigers’

Nursing Home Disaster Plans Often Faulted As ‘Paper Tigers’

It does not take a hurricane to put nursing home residents at risk when disaster strikes.

Around the country, facilities have been caught unprepared for far more mundane emergencies than the hurricanes that recently struck Florida and Houston, according to an examination of federal inspection records. Those homes rarely face severe reprimands, records show, even when inspectors identify repeated lapses.

In some cases, nursing homes failed to prepare for basic contingencies.

In one visit last May, inspectors found that an El Paso, Texas, nursing home had no plan for how to bring wheelchair-dependent people down the stairs in case of an evacuation. Inspectors in Colorado found a nursing home’s courtyard gate was locked and employees did not know the combination, inspection records show. During a fire at a Chicago facility, residents were evacuated in the wrong order, starting with the people farthest from the blaze.

Nursing home inspectors issued 2,300 violations of emergency-planning rules during the past four years. But they labeled only 20 so serious as to place residents in danger, the records show.

In addition, a third of U.S. nursing homes have been cited for another type of violation: failing to inspect their generators each week or to test them monthly. None of those violations was categorized as a major deficiency, even at 1,373 nursing facilities that were cited more than once for neglecting generator upkeep, the records show.

“That’s the essential problem with the regulatory system: It misses many issues, and even when it identifies them, it doesn’t treat them seriously enough,” said Toby Edelman, a senior policy attorney at the Center for Medicare Advocacy. “It’s always the same story: We have some pretty good standards and we don’t enforce them.”

In the wake of eight deaths at Rehabilitation Center at Hollywood Hills, Fla., following Hurricane Irma, heightened attention has focused on new federal disaster-planning rules, with which nursing homes must comply by mid-November. Those were prompted by nursing home and hospital deaths during Hurricane Katrina in Louisiana in 2005.

Dr. David Gifford, senior vice president for quality and regulatory affairs at the American Health Care Association, a nursing home industry group, said facilities have gotten better at handling disasters after each one. Most evacuations go smoothly, he said.

“After each one of these emergencies we’ve learned and gotten better,” Gifford said.

But advocates for the elderly say enforcement of rules is as great a concern, if not greater.

Dr. David Marcozzi, a former director of the federal emergency preparedness program for health care, said that inspectors — also known as surveyors —  should observe nursing home staff demonstrating their emergency plans, rather than just checking that they have been written down.

“If you have not implemented and exercised plans, they are paper tigers,” said Marcozzi, now an associate professor at the University of Maryland School of Medicine. “The emphasis from the surveyor has to be ‘Show me how you do this.’ ”

Gifford said pre-planning and drills, which are important, only go so far in chaotic events such as hurricanes.

“No matter what planning you might have, what we have learned from these emergencies is these plans don’t always work,” he said. Nursing homes take surveys seriously and face closure if they do not fix flaws inspectors identify, he added.

Inspection results vary widely by state, influenced sometimes by lax nursing homes or more assertive surveyors, or a combination, according to an analysis of two types of emergency-planning deficiencies. In California, 53 percent of nursing facilities have been cited for at least one of two types of emergency-planning deficiencies, and a quarter have been cited in Texas. No nursing home in Indiana, Mississippi or Oregon was issued violations for those two emergency-planning violations during the past four years.

Asked to explain the rarity of severe citations in emergency preparation, the federal Centers for Medicare & Medicaid Services, which oversees inspections, referred a reporter to its emergency-preparedness mission statement on its website.

The danger of high temperatures for elderly residents, which the Hollywood Hills case shows can be disastrous, has been well known. In a heat wave in 2000, two nursing home residents in a Burlingame, Calif., facility died and six others suffered severe dehydration, heat stroke or exhaustion.

During the past four years, inspectors have cited 536 nursing homes for failing to maintain comfortable and safe temperature levels for residents. Inspectors deemed 15 as serious, including two where patients were harmed, records show.

“There is undoubtedly little, if any, enforcement of the laws since we see the same tragedies repeated time and again,” said Patricia McGinnis, executive director of California Advocates for Nursing Home Reform.

Clarification: This story was updated on Sept. 19 clarify to make clear that 53 percent of nursing facilities in California and a quarter of them in Texas were cited for at least one of two types of emergency-planning deficiencies — not both types of deficiencies.

KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation. Coverage of aging and long-term care issues is supported by The SCAN Foundation.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

A new age of care

A new age of care

Before there were nursing homes and social security legislation, the elderly lived in almshouses which also housed insane, homeless and inebriated people. Living conditions in these facilities were horrendous and dangerous. Thankfully, after some legislation passed nursing home numbers began to rise and gave seniors a better environment to live. Although there are still problems that occur, nursing homes are adopting new innovations and technologies to increase the quality of care for the elderly population.

The number of people older than 60 is set to hit one billion by the end of the decade, according to the United Nations Population Fund and HelpAge International. These increasing numbers show us the importance of the future of nursing home. With new advances, nursing homes are working towards a more active, social and healthy lifestyle that seniors can enjoy as they age.

For seniors that don’t require nurse care full time, independent living is becoming a popular choice. This allows the elderly to live in a senior facility and still have the ability to make independent choices on mobility, activities and food preparation. The elderly are also starting to co-house with one another allowing them to share the responsibilities and bills. With user-friendly technology such as alarm sensors that detect floods, carbon dioxide leaks and if someone falls makes these options viable for seniors who are still active.

Senior can be lonely and miss their family while living in nursing homes but video technology is helping them to connect. Services such as Skype or Facetime allows seniors to see and talk to their families, friends and even doctors. Technology advancements in wearables and mobile health are also helping seniors. Wearables can help healthcare providers to monitor heartbeat, hydration and physical activity. Mobile health can help remind seniors about medical appointments, insurance, records and taking medication.

Technology will continue to impact the way the elderly population are cared for. Caregivers need to stay updated with all the options in order to choose the best for their family members.

Nursing Home Healthcare

Adventist University’s Online Master of Healthcare Administration degree program

Elder Abuse: ERs Learn How To Protect A Vulnerable Population

Elder Abuse: ERs Learn How To Protect A Vulnerable Population

Abuse often leads to depression and medical problems in older patients — even death within a year of an abusive incident.

Yet, those subjected to emotional, physical or financial abuse too often remain silent. Identifying victims and intervening poses challenges for doctors and nurses.

Because visits to the emergency room may be the only time an older adult leaves the house, staff in the ER can be a first line of defense, said Tony Rosen, founder and lead investigator of the Vulnerable Elder Protection Team (VEPT), a program launched in April at the New York-Presbyterian Hospital/Weill Cornell Medical Center ER.

The most common kinds of elder abuse are emotional and financial, Rosen said, and usually when one form of abuse exists, so do others. According to a New York study, as few as 1 in 24 cases of abuse against residents age 60 and older were reported to authorities.

The VEPT program — initially funded by a small grant from The John A. Hartford Foundation (a Kaiser Health News funder) and now fully funded by the Fan Fox and Leslie R. Samuels Foundation — includes Presbyterian Hospital emergency physicians Tony Rosen, Mary Mulcare and Michael Stern. These three doctors and two social workers take turns being on call to respond to signs of elder abuse. Also available when needed are psychiatrists, legal and ethical advisers, radiologists, geriatricians and security and patient-services personnel.

“We work at making awareness of elder abuse part of the culture in our emergency room by training the entire staff in how to recognize it,” said Rosen. It’s easy for the ER staff to alert the VEPT team and begin an investigation, he said.

A doctor interviews the patient and conducts a head-to-toe physical exam looking for bruises, lacerations, abrasions, areas of pain and tenderness. Additional testing is ordered if the doctor suspects abuse.

“Unlike with child abuse victims, where there is a standard protocol in place for screening, there is no equivalent for the elderly, but we have designed and are evaluating one,” said Rosen.

The team looks for specific injuries. For example, radiographic images show old and new fractures, which suggest a pattern of multiple traumatic events. Specific types of fractures may indicate abuse, such as midshaft fractures in the ulna, a forearm bone that can break when an older adult holds his arm in front of his face to protect himself.

When signs of abuse are found but the elder is not interested in cooperating with finding a safe place or getting help, a psychiatrist is asked to determine if that elder has decision-making capacity. The team offers resources but can do little more if the patient isn’t interested. They would have to allow the patient to return to the potentially unsafe situation.

Patients who are in immediate danger and want help or are found not to have capacity may be admitted to the hospital and placed in the care of a geriatrician until a solution can be found. Unlike with children and Child Protective Services, Adult Protective Services won’t become involved until a patient has been discharged, so hospitalization can play an important role in keeping older adults safe.

During the first three months of the program, more than 35 elders showed signs of abuse, and a large percentage of them were later confirmed to be victims. Changes in housing or living situations were made for several of them.

“It’s difficult to identify and measure appropriate outcomes for elder abuse victims, because each patient may have different care goals,” said Rosen, “but we are working on making a case that detection of elder abuse and intervention in the ER will improve the patients’ lives. We also hope to show that it will save money, because when an elder is in a safe place, expensive, frequent trips to the ER may no longer be needed.”

The team’s ultimate goal is to optimize acute care for these vulnerable victims and ensure their safety. They plan to work at continually tweaking VEPT to improve the program and to connect to emergency medical, law enforcement and criminal justice services. Eventually, they hope to help other emergency departments set up similar programs.

KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.

7 Techniques For Keeping Your ‘Thought Life’ Healthy And Your Stress Level Low

7 Techniques For Keeping Your ‘Thought Life’ Healthy And Your Stress Level Low

Life gives people plenty of reasons to be stressed.

Relationship problems, child-rearing issues, job woes and a lack of money are just some of life’s complications that can weigh people down – and cause health problems.

“It’s difficult to stay healthy and energized when stress is a daily reality,” says Dr. Greg Wells, author of The Ripple Effect: Eat, Sleep, Move and Think Better.

“Chronic stress can damage your body, threaten your mental health, put a strain on relationships, and take the joy out of life.”

But there’s no reason to surrender to stress, Wells says. He suggests seven techniques that can help you have a healthier “thought life” and recover from chronic stress:

• Move your body. Rhythmic, repeated motion is particularly soothing to the mind and body. A long walk, cycling, swimming, or running will all work, but any kind of movement relieves tension, improves circulation, and clears your mind.
• Get into nature. Head to the garden, the park, or the woods to lower your blood pressure, strengthen your immune system, reduce tension and depression, and boost your mood. “It’s stunning how good it is for your health to be in nature,” Wells says. “And I recommend you leave the cell phone and earbuds at home.”
• Practice yoga or Tai Chi. Therapy, yoga and Tai Chi are good ways to decrease stress and anxiety, increase energy, and boost the immune system. They also give you more stamina—needed in stressful times—and improve the quality of your sleep.
• Have perspective. Don’t be so quick to conclude that you “can’t handle” a stressful situation. “This is truly a mind-over-matter opportunity,” Wells says. “Believing that you are strong and resourceful actually makes you stronger and more resourceful.” Don’t give in to negative self-talk about not having what it takes to manage life, he says.
• Change the nature of your response. Research indicates that taking an active, problem-solving approach to life’s challenges relieves stress and can transform it into something positive. If you withdraw, deny the problem, or spend all your time venting, you’ll feel helpless. Instead, Well says, be determined to make a change, put effort into it, and plan for better results.
• Practice slow, deep breathing. Start applying the power of deep breathing each day. It will make a huge difference. Wells recommends you start small by taking three deep breaths each time you sit down at your desk—in the morning, after breaks, after lunch, and so on. It will help you become more patient, calm, and relaxed.
• Block time for single-tasking. Each day, schedule time in your calendar for focusing exclusively on one task. This task should be something that is important to you. “People love to talk about multi-tasking, but while doing several things at once might make it seem as if you are working hard, it’s an illusion,” Wells says. Your body and mind are not designed to work that way and it causes extra stress.

“Ultimately, it’s important to remember that your thoughts have a strong influence over stress levels,” Wells says. “What you choose to think about, or not think about, dictates how your body and mind react to everyday life.”


Dr. Greg Wells is an authority on high performance and human physiology. Wells’ latest book, The Ripple Effect: Eat, Sleep, Move and Think Better, hit shelves earlier this year. Dr. Wells is an Assistant Professor of Kinesiology at the University of Toronto where he studies elite sport performance. He also serves as an Associate Scientist of Translational Medicine at The Hospital for Sick Children, where he leads the Exercise Medicine Research Program.

Interrupted sleep can be harmful to caregivers health

Interrupted sleep can be harmful to caregivers health

In 2013 my husband’s aorta dissected. He had three emergency operations and, during the third one, suffered a spinal cord injury that paralyzed his legs. The night I drove him to the hospital I became his primary caregiver and advocate. After being hospitalized for eight months my husband was released to my care.

Catheterization was part of this care. Every morning at 3 a.m. the alarm clock went off, and I stumbled out of bed to help my husband catheterize. Afterwards he usually went back to sleep. I didn’t. Instead, I tossed and turned and worried about the coming day. Although a paid caregiver came at 6:30 a.m. and stayed two hours to get my husband up, I was still involved in his care.  

By one in the afternoon I was yearning for sleep. Interrupted sleep took a toll on me, and may be taking a toll on you. Perhaps you get up in the middle of the night to give a loved one medicine. You may have to get up to rescue a loved one who has fallen down. Personal health problems—arthritis, bursitis, restless legs, and bathroom breaks—may interrupted your sleep.

Rick Nauert, PhD examines this sleep disorder in “Interrupted sleep Can Be as Harmful as  No Sleep,” posted on the PsycCentral website. He uses new parents as examples of interrupted sleep. Although they’re awake a short time, interrupted sleep disrupts the parents’ normal sleep rhythms. “Parents often report feeling more exhausted in the morning than when they went to bed the night before,” he explains.

Nauert cites a study published in the journal of Sleep Medicine that states interrupted sleep is equivalent to no more than four hours of consecutive sleep. Wow! One thing is sure: You need at least seven hours of sleep. Over time, interrupted sleep can become sleep deprivation, and it’s dangerous.

According to a WebMD article, “10 Things to Hate About Sleep Loss,” the dangers of lack of sleep include:

  • Slower reaction time
  • Impaired thinking
  • Increased risk of heart disease
  • High blood pressure
  • Increased risk of stroke, diabetes
  • Lower sex drive
  • Depression
  • Impaired memory
  • Increased weight gain

“Sleep loss impairs judgment, especially about sleep,” the article concludes.

Thankfully, I found some solutions for interrupted sleep. To give me an extra hour of sleep, I changed the paid caregivers’ arrival time from 6:30 a.m. to 7:30 a.m. I followed the advice of my husband’s occupational therapist. Her idea: make a catheterization kit and let my husband, a retired physician, catheterize himself. I made the kit and set it on his bedside table.

Stacy M. Peterson and Brooke L. Werneburg, in their Mayo Clinic website article  “Sleep: The Foundation of Healthy Habits,” ask patients to establish a bedtime routine. We had a good routine; I just started it 45 minutes earlier. I continued to take naps when I needed them. However, I was careful not to nap for more than an hour.

Interrupted sleep is a serious health problem. Don’t let interruptive sleep interrupt your life and caregiving. Take action now!

Rediscovering your identity as a caregiver

Rediscovering your identity as a caregiver

Caregivers Rediscovering Their Identity

A friend’s wife suffered through a rough couple of years with cancer, and he served as her sole caregiver. Meeting up with him one day, I asked, “How are you doing?” He quickly replied, “Well, we’re doing okay. She just got home from the hospital, and seems to be having some better days. We have a long way to go, but our situation is better than it was.” He then shared test results his wife had, and gave a comprehensive update on her condition. After he paused for a moment, I pointedly said to him, “I asked how you are doing.” The ease of speech used to relay his wife’s circumstances instantly vanished.  As tears welled in his eyes, he managed to stammer, “Peter, I’m scared and worn out.”

Both responses my friend gave me reflect the condition of virtually every caregiver I know—including myself. We tend to lose our identity in the story of someone else. When a caregiver answers direct questions in third person singular (he, she, etc.) or first person plural (we, our, us), it’s a good indicator the loved one overshadows the caregiver’s identity. When asked about our own hearts, however, we find ourselves caught off guard, and usually struggle to share our feelings.

One of the caregiver landmines is the loss of identity.

It’s simply too easy to become lost as the person pushing the wheelchair.  We’re become the one standing in the hospital room corner, the one doing laundry or meals, etc. How can we talk about our own broken hearts or weariness when our loved ones have such drastic illnesses or challenges? Too many caregivers feel guilty for saying anything construed as complaining or wanting a break.  After all, the suffering loved one doesn’t get a break from pain/disease/ disability. But our injuries and wounds, whether physical or emotional, require attention—regardless of how they compare to others.

The loss of identity is the first step on a downward spiral for a caregiver.

If we don’t start paying attention to and taking care of ourselves, a strong resentment can quickly take hold. In a relatively short time, we can find ourselves tied in all kinds of emotional knots of guilt, and other negative feelings. Most don’t understand that caregivers can easily lose their identity in caring for that loved one.  In seemingly no time at all, it becomes difficult for caregivers to speak from their own hearts, pain, anger, frustration, and sadness. This loss of identity is the first step on a downward spiral for a caregiver.

Oddly, understanding this truth didn’t come from counseling or support groups (both of which I recommend), but rather I learned this one at the piano. Playing the piano since age five, I eventually earned a degree in music. In college I met Gracie who, although hurt from her terrible accident, is a wonderful singer. I mean, a no- kidding singer!  For years, we performed together, and I accompanied her on countless stages and in the studio. When Gracie’s health declined and she could no longer maintain a regular public schedule, my public performing appeared shelved, as well. Surprising me day at church, my pastor asked a special request, “Peter, would you play before services each Sunday morning as people gather and facilitate a more reverent atmosphere in the sanctuary?”

Finding The Melody

Agreeing to his invitation, I sat down to play hymns I’ve played since childhood, only to experience an unexpected issue.  Within just a few measures, I discovered my mind played a trick on me and I kept hearing Gracie’s voice. This led me to leave out the melody and I played only the accompaniment. The chords were nice, but they didn’t communicate the song. Quickly adjusting, I forced myself to play the melody.

We caregivers often find ourselves in this place: we lose the melody. Growing accustomed to someone else’s voice, we find ourselves playing a supporting role. The loss of our own voice, our melody—our identity, is a landmine with disastrous effect. That’s why I spend so much time on this issue for my fellow caregivers. We avoid this by reclaiming our identity and acknowledging our feelings out loud.  Using our own voices we can express, “I’m tired,” “I’m lonely,” “I’m scared,” “I’m angry,” or “I’m weary,” and seeking the help we need.

Caregivers can also reclaim healthy identities by cultivating trusted and appropriate relationships.  In those relationships, caregivers can safely express feelings and challenges with someone who understands their needs. Not limited to just friendships, a relationship with a trained mental health counselor can help sort through issues.

In addition, counselors can help connect to various respite and other type community services. Although each of these remain critical steps, they all start with a caregiver uttering: “I need help.” The next time a trusted friend asks, “How are you?” it may feel strange at first, but try and answer in first person singular. Appropriately sharing your own heartache and feelings is not self-centered; it is healthy—and healthy caregivers make better caregivers!

Tai Chi May Help Prevent Falls in Older and At-Risk Adults

Tai Chi May Help Prevent Falls in Older and At-Risk Adults

An analysis of published studies indicates that tai chi may help reduce the number of falls in both the older adult population and at-risk adults. The findings, which are published in the Journal of the American Geriatrics Society, offer a simple and holistic way to prevent injuries.

Tai chi is an ancient Chinese practice focused on flexibility and whole body coordination that promotes harmonized motion in space. Previous research has shown that tai chi is an effective exercise to improve balance control and flexibility in older individuals. This suggests that the practice might help protect against falls, which are a primary cause of traumatic death for older adults.

To investigate, Rafael Lomas-Vega, PhD of the University of Jaén in Spain and his colleagues searched the medical literature for relevant studies. The team identified 10 randomized controlled trials analysing the effect of tai chi versus other treatments (such as physical therapy and low intensity exercise) on risk of falls in at-risk and older adults.

There was high-quality evidence that tai chi significantly reduced the rate of falls by 43% compared with other interventions at short-term follow-up (less than 12 months) and by 13% at long-term follow-up (more than 12 months). Regarding injurious falls, there was some evidence that tai chi reduced risk by 50% over the short term and by 28% over the long term. Tai chi did not seem to influence when an older or at-risk adult was likely to experience their first injurious fall.

“Tai chi practice may be recommended to prevent falls in at-risk adults and older adults. The length of the interventions ranged from 12 to 26 weeks. The frequency of the 1-hour sessions ranged from one to three times per week,” said Dr. Lomas-Vega. “Due to the small number of published studies, further research is needed to investigate the effect of tai chi on injurious falls and time to first fall.”


Full Citation: “Tai chi for risk of falls. A meta-analysis.” Rafael Lomas-Vega, Esteban Obrero-Gaitán, Francisco Javier Molina-Ortega, and Rafael del-Pino-Casado. Journal of the American Geriatrics Society; Published Online: July 24, 2017 (DOI: 10.1111/jgs.15008): http://doi.wiley.com/10.1111/jgs.15008

The Journal of the American Geriatrics Society is a comprehensive and reliable source of monthly research and information about common diseases and disorders of older adults. For more information, please visit http://wileyonlinelibrary.com/journal/jgs.

About Wiley
Wiley, a global company, helps people and organizations develop the skills and knowledge they need to succeed. Our online scientific, technical, medical, and scholarly journals, combined with our digital learning, assessment and certification solutions help universities, learned societies, businesses, governments and individuals increase the academic and professional impact of their work. For more than 200 years, we have delivered consistent performance to our stakeholders. The company’s website can be accessed at www.wiley.com.


Featured image: cowardlion / Shutterstock.com

Writing through pain: A cancer survivor guides patients with pen and paper

Writing through pain: A cancer survivor guides patients with pen and paper

Would you be interested in participating in a writing group on The Caregiver Space? We’ve had The Page Listens since the beginning, but we’d like to organize a group that discusses the process together.


In 2013, Lynn Scozzari was staring at a photo of a naked woman seated on a rock, her arms thrust open to a valley below. Scozzari herself was seated at a table with fellow cancer patients and survivors in a conference room at Scripps Green Hospital in La Jolla, Calif. They were part of a writing… (more…)

8 Things Senior Citizens in Assisted Living Don’t Want to Hear

8 Things Senior Citizens in Assisted Living Don’t Want to Hear

Dealing with elder adults and senior citizens can be incredibly difficult. All of us, at some point, have experienced their seemingly strange behavior, the incessant talk about things that seem irrelevant to us, not taking the prescribed medications, and the frequent emotional outbursts. These small problems, however, can turn into a major issue for those in regular contact with senior citizens, particularly the caregivers working in an assisted living facility.

The first step towards resolving this dilemma is to improve your communication. Whenever you are interacting with senior citizens, you must choose your words carefully. If you don’t approach your conversations with utmost care, you will get worst reactions irrespective of your good intentions.

Better communication with seniors begins with understanding how much damage your words can cause to the seniors who already feel alone and neglected. If you care about the residents in your assisted living facility, you should avoid saying the following eight things when speaking to them.

1. “Sweetie” Or “Honey”

Infantilizing elder adults under your care is downright patronizing. Most adults don’t like to be called “honey,” “dear,” or “sweetie,” or any other pet name at all. Do not call them anything that you would also call a person under age ten, including “dear,” “sweetie,” “honey,” or worst of all, “young lady” or “young man.” You can call them “Sir” or “Ma’am,” which is a general title of respect applicable to all adult men and women. However, calling them by their names is the best way to open a conversation.

2. What’s It Like to Be Your Age?

Senior citizens are not different; they are merely their own category. However, asking them, “What is it like to be your age?” implies you are treating them as different people. Plus, old age brings plenty of health issues that most senior citizens don’t want to discuss with anyone. So, never open a dialogue with this question.

If you want to strike a personal conversation, try a more subtle approach such as “Tell me, Frank, how has the “culture of senior high” changed since you graduated?” Besides, if a senior resident wants to share something with you, they are more likely to do it on their own.

3. How Can You Forget That?

Short-term memory loss is a common complaint among older adults. In fact, they often lose short-term memory before long-term. As a result, they tend to forget all kinds of small things such as where they put their glasses or cane. Such memory lapses can be frustrating. However, this doesn’t mean you should be snapping and asking, “How can you forget that?” repeatedly.

You can try placing a few Post-it notes on the desk, fridge and the bathroom mirror as reminders. Remind them in a gentle tone. Saying something such as, “You are likely to trip and fall if you forget to keep your glasses handy, resulting in a serious injury.” can keep the tone light. Most, importantly, don’t lose your patience as impatience is what triggers the hurtful demeanor of conversation.

4. You Could Do That If You Really Tried

As a caregiver, you must have heard that you must encourage senior residents to participate in different activities and routine tasks to avoid loneliness. However, there is a thin line between encouragement and compulsion. The remark, “You could do that if you actually tried” implies compulsion, not encouragement.

Just because a senior citizen is in a physically fit condition, doesn’t mean he/she should go out there and play football. They need start with manageable activities such as a stroll in the garden. Plus, you need to stop when the senior citizen says so. Forcing them into doing things they don’t like isn’t going to help anyone including you and your colleagues.

5. I Just Showed You How to Do That Yesterday

Whether it is handling the new TV remote or making a video call with their children, learning new technology can be a challenge for most elder adults. However, with patience, you can teach them to use the latest gadgets. Most cable operators and even cell phone operators provide senior-friendly gadgets that make the learning process a lot easier.

Alternatively, you can print the step-by-step instructions in a large font and leave them near the TV remote. You can also contact volunteers from the nearest senior citizen center, high school, community center or college to teach basic internet and computer skills to the senior residents at your assisted living.

6. You Already Told Me That

We all have the tendency to repeat ourselves at some point. However, we often get upset with senior citizens as they repeat themselves too often. You must have heard those Vietnam War stories from a war veteran so often, you could repeat them word-to-word, in your sleep. But, as a responsible caregiver, it is your job to listen to these repetitions with patience over and over again.

7. Why Is Your Room or Bed So Messy?

Keeping the room and bed tidy becomes increasingly difficult in old age, particularly if you are suffering from ailments such as arthritis. Aging also brings a variety of hygiene and cleanliness issues to the forefront. As a caregiver, you have to deal with these issues regularly. So, instead of being harsh, help them with the housework.

8. Let Me Give You a Hand

Though the senior residents in your community will need help with some housework, don’t go overboard with helping, particularly if they can get around on their own. Promoting their independence not only promotes their sense of achievement, but also gives them assurance that they can control certain aspects of their lives. So, let them be as self-sufficient as possible. For example, if they can take a stroll or use a computer on their own, let them do it.

 

Though dealing with senior citizens can be difficult at times, as a caregiver, it is your responsibility to allow them to live as respectable individuals. You will have to connect and reconnect with them to build a better relationship. None of this sounds easy, but avoiding the above eight comments when speaking to elder adults can help resolve this dilemma.

What have you done to improve your relationship with the senior citizens in your assisted living facility? Let us know in the comments section below.

Featured image: Maxpixel


Evan Thompson, CEO and founder of Senior.One has a long standing interest in finding solutions for seniors. He helps connect senior citizens and their family members with elder care service providers and find the resources they need in one place. He offers information on nursing homes, hospice, financial planning, adult care, lifestyle and assisted living facilities in Albuquerque. He provides information on housing, medical professionals, financial planning services, and lifestyle options.

How to streamline your Rx mess

How to streamline your Rx mess

There are many compelling reasons that surround my move back home to live with my elderly mother—none the least of which is the near accidental overdose from the many Rx prescriptions whose labels she can no longer read.

Ask yourself these 4 questions to determine if you might need a little help in sorting out your own Rx mess.

1) Does your eyesight still allow you to easily read the Rx labels so you know the proper dosage to take?

2) Can you hear well enough over the telephone to place renewals for your Rx? Keep in mind automated phone robots—not the pharmacist—usually take and confirm your orders.

3) Do you have an organized system for dispensing meds so there is no confusion over did I already take my pill, or did I forget to put it on the tray?

4) Do you have a way to keep track of when renewals are due? Or are you surprised when you find an empty bottle and no pills left for today’s dosage?

I am sick at the prospect of taking on this role by myself. But after the brother living nearby trains me, it becomes part of my new weekly routine soon enough.

Studying his approach to counting, sorting, chopping and calling for the renewal of these pills, I feel confident that I can reorganize the grocery sack housing my mother’s entire health regiment.

3 Steps to Streamlining Your Rx Mess:

 

Step 1- Familiarize yourself with the pills.

 

  1. Know your pills by name and the reasons why each is taken.

 

  1. Know when and how the pill should be dispensed…with water, food, or on an empty stomach?

 

  1. This should be obvious, but be sure your doctor knows all of the medication you are taking in case one pill has a reaction with another. Especially important to communicate if you have more than one doctor—or are meeting for the first time a physician who is new to you.

 

  1. Laminate your pill chart (at end of post) and keep it in your wallet.

This will be essential information to provide at every doctor visit.

 

  1. Recognize the grooves and sizes that distinguish all white pills from each other. After the first time you drop your med tray (it happens!), spilling pills everywhere, you will know just how to put it all back together again.

 

Step 2- Streamline Rx Storage

 

  1. A shoebox holding a dozen prescription bottles upright works for me.

 

  1. Sorting the bottles in alphabetical order will make your inventorying much easier when it comes time for renewals later.

 

  1. On top of the bottle cap, write the renewal date due in Sharpie pen.

 

  1. Keep the blade for chopping pills inside this box as well.

 

  1. The shoebox is for storing the Rx bottles.

The med tray is for holding the day’s dosages.

Different sized med tray dispensers range from one time a day for 7-days to multiple times of the day for 7 days. The latter is what I use—and here is why I love it. There are four vertical rows, with 7 cells across in each row. The first two rows are yellow. The two rows beneath are blue. Guess what? Since I do not need to dispense meds four times a day, I re-label the slats to give me two weeks worth of pre-planned pills. Now I can load the tray with A.M. and P.M. meds knowing that the yellow is for week 1 and the blue is for week 2. Time saver for sure!

 

Step 3- Remember Renewals

 

  1. Do not put a nearly empty pill bottle away without red-flagging it.

 

Forgetting that tonight’s dinner pill was never renewed can be further complicated when it requires a doctor’s approval which—this being Friday—you will not get until Monday.

 

  1. Post renewal dates on top of standing bottles for a better alert.
  2. Laminate a version of the following Rx chart for your purse or wallet.

 

Pills, Powders, and Potions Chart

 

Laminate prescription chart to keep in handbags, and wallet for appointments.

Date Last Modified:
Patient Information Primary Care Information
Name of Patient Name of Doctor
Patient Phone Contact Phone
Caregiver Name Front office name(s)
Caregiver Phone Street Address
DOB Suite #, City, Zip
Insurance 1st Pharmacy choice: Phone:
Plan # 2nd Pharmacy choice: Phone:

 

Medicine Name

(add strength mg)

Reason Taken Pharmacy#1

_________

Location

__________

__________

Pharmacy#2

_________

Location

__________

__________

Rx# Qty. Date Last Filled Next Fill

Date

List in alpha order Blood pressure?

Diabetes?

Pharmacy to fill Rx

(check this box)

Pharmacy to fill Rx

(check this box)

Needed for refill Make a note for pills cut in half Write on tops of bottles for ease Write on tops of bottles for ease

 

Now that you have taken stock of your Rx collection and sorted that mess from your grocery sack storage, you should be well on your way to managing your prescriptions with greater ease and care. With your new system in place, it will be a breeze if and when someone else needs to take over for you.

 

“What to Ask When Hiring a Caregiver?” will be the next blog posting here.

How Can You Help People Who Have Dementia and Don’t Realize it?

How Can You Help People Who Have Dementia and Don’t Realize it?

Being a caregiver for someone who has a memory deficit can be extremely challenging. It becomes even more difficult when that person is unaware of their dementia or any other limitations associated with it. Dementia can directly impact a person’s ability to follow directions, can compromise their safety,  impedes problem solving and abstract reasoning. It can cause them to be impulsive or unrealistic about their abilities. There are things you can do and approaches you should avoid as a caregiver facing these parameters.  

From an emotional standpoint it can be extremely frustrating for a person with dementia to be told they should not be doing tasks they believe they are very competent to manage. Any caregiver trying to create a safer environment may be on the receiving end of angry outbursts and defensiveness from the person with dementia whom they are trying to keep safe and protect. Here are some suggestions about how caregivers can approach working with a person with dementia who is unaware of it:

Communicate in a calm manner.

Be as empathetic and supportive as you possibly can. Be aware of the tone of your voice and the message you are sending and how it is or is not being received. Also be aware of your body language and facial expressions and what they convey.

If you find yourself starting to get angry or stressed remove yourself or take a time out for your own sake rather than arguing.

Take a break from the conversation or task at hand. If it safe to remove yourself from the person you are watching give yourself a few minutes to take a deep breath, regroup your thoughts, and calm down.

Try to separate the person from the disease.

This is tricky but important. Remind yourself the person with dementia is not intentionally trying to be contrary. The disease is causing their memory loss or inability to do the things they used to. Sometimes recognizing why someone is behaving in a negative way helps you get to be in their shoes and makes you feel less attacked and more understanding.

Don’t engage in arguments about who is right or wrong.

That won’t help anyone. All that does is reinforce the deficits the people with dementia has causing them to dig in and not do what you need them to do. Does it really matter if they think it is Thursday and you know it is Friday? The best thing to do is to distract or disengage from that conversation and focus on something that is neutral or something you know they will enjoy. People with memory problems may confabulate, or make up answers to explain things that happen. Just let them say their version of events and then move on to something else.

Try to pick tasks you can do together and work as a team.

Everyone wants and needs to feel wanted and useful. Maybe they can help put laundry in the washing machine or put dirty dishes in the dishwasher. Even if they make a mistake you can always pull the dirty dish out later if the dishes were clean.

Try to create as positive a relationship as you can.

Be friendly and warm with the person you are caring for.  They will be more apt to work with you than against you if they sense you are on their side or feel friendly towards them. You can do this by trying to give them as much control as possible about things that need to be done, and when and how they should be done. This makes them feel better when they believe they are making these decisions.

Give them two choices that are both acceptable options.

For example, lay out a blue and red shirt ask them to pick the one they want to wear that day. Do you want chicken or tuna for lunch today?

Break down the task that need to be done in as few and simple steps as you possibly can.

Make it as easy as possible for them to do chores or tasks. Have the watering can out and put water in it and the flower on the counter.

Don’t infantilize the person.

Don’t talk around them or about them when they are in front of you as if they were not there. Talk directly at them using their name. It is important to continue to reinforce people and their names to enhance memory.

Don’t remind them what they can’t do and reinforce what they can do.

Nobody wants to hear all of the things they can’t do. It is human nature to crave approval from others. Maybe grandma can’t play guitar anymore but she still has a beautiful voice. Pick a song you know she can sing and ask her to sing it for you.

Validate their fears or concerns.

Try to express your understanding about any fears, frustrations or anxiety they discuss. Be as empathetic as possible and validate their feelings as best you can. If they express fear for example, tell them “I know you were scared by that loud noise, I would be too. I am going to see what I can do to make it stop or make the noise less loud.”