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.
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.
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.
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.
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.”
Bill Harris is blunt: For more than a year, he has been trying to help his wife die.
The 75-year-old retired tech worker says it’s his duty to Nora Harris, his spouse of nearly four decades, who was diagnosed with early-onset Alzheimer’s disease in 2009.
“Let me be honest: Yes. It’s what she wanted,” he said. “I want her to pass. I want her to end her suffering.”
Nora Harris, 64, a former librarian, signed an advance directive after her diagnosis to prevent her life from being prolonged when her disease got worse. Now, her husband said, she’s being kept alive with assisted eating and drinking against her stated wishes.
The onetime Virginia Woolf scholar and world traveler can no longer communicate, recognize family members or feed herself. She’s being spoon-fed at Fern Gardens, an assisted living center in southern Oregon, after a local judge ruled against Bill Harris last summer, concluding that state law mandates that she continue to receive help.
“She did not want to be in a position where somebody had to totally take care of her,” Bill Harris said. “When nature, through the disease, basically said, ‘I can’t feed myself,’ Nora’s position was, that’s it. Let nature take its course.”
In recent weeks, Nora Harris has been gaining weight, climbing from less than 100 pounds to 102 or 103 — just enough to keep her stable. Bill Harris learned that, in addition to three state-required daily meals, staffers have been feeding Nora optional snacks, too.
Now he’s considering going back to court to try to stop the snacks in an effort to let Nora Harris lose enough weight to end her life. Twice before, in 2015 and 2016, she fell to 90 pounds and was enrolled in hospice, with six months or less to live, only to rebound, he said, when staffers coaxed her to eat.
“You’re denying Nora the right to die on her terms,” Bill Harris said. “It’s not a right-to-life issue, it’s a right-to-die issue.”
The southern Oregon case underscores the complexity surrounding the use of advance directives for people with Alzheimer’s disease and other dementias.
Advance directives are legal documents that spell out a person’s end-of-life wishes if they are unable to make their own decisions.
These directives generally allow named agents the power to withdraw artificial hydration and nutrition in the form of feeding tubes, for instance. But when that same nourishment is offered by hand, several states, including Oregon, draw a line, said Thaddeus Mason Pope, director of the Health Law Institute at Hamline University in St. Paul, Minn., and an expert on end-of-life law.
Across the U.S., the more than 5 million people living with dementia are typically encouraged to put their end-of-life wishes into writing early and to pick a trusted person to carry them out, said Beth Kallmyer, vice president of constituent services for the Alzheimer’s Association.
That’s no guarantee, however, that those requests can — or will — be honored. In Nora Harris’ court case, her advance directive and testimony from her husband, her daughter and two close friends all indicated that she wouldn’t want anything to prolong her life.
“That court decision basically condemned Nora to the full extent of the Alzheimer’s disease,” Bill Harris said. “They gave her no exit out of this situation.”
But Eric Foster, the court-appointed lawyer who represented Nora Harris, argued that her directive doesn’t specifically mention food and drink presented by hand. Because she now opens her mouth and swallows when food is offered, she has, in essence, changed her mind, he said in a court document.
Bill Harris said that opening her mouth is a reflex, an automatic response to six decades of habit.
Nora Harris signed an advance directive stipulating no care to prolong her life, but her husband says state law is forcing her to be spoon-fed against her stated wishes. (Jim Craven for KHN)
Kallmyer, with the Alzheimer’s Association, said it’s hard to tell whether someone with dementia is acting out of reflex or desire. The association recommends against tube-feeding for patients with dementia, while also advising what they call “careful hand-feeding.”
“If they’re eating and they’re opening their mouth, it’s difficult to say they didn’t want it,” she said.
Foster’s stance was backed by a judge who sympathized with Bill Harris’ plight, but sided with Fred Steele, Oregon’s ombudsman on long-term care. Steele said Nora Harris’ advance directive wasn’t specific enough to advise Fern Gardens staff to withhold food and water.
“Our concern was just focused on the administrative rule,” he said. “If the rule exists to prevent a facility from committing elder abuse, our focus was on what the rule required. The rule requires the resident be cued with food and they have the choice of eating or not eating.”
Lynn Rawlins, the center’s administrator, said her hands are tied.
“We have to feed them until they stop opening their mouths,” she said before a tour of the center last month. “Unless feeding them causes more harm from aspirational pneumonia or a choking factor. We still have to feed them, even if they choke.”
Nora Harris is a small woman with graying brown hair and dark, confused eyes. On a recent 88-degree summer afternoon, she wore a maroon fleece sweater, gray sweatpants and mismatched socks.
She spoke in urgent whispers, syllables spilling out, unlinked from words.
Bill Harris put an arm around her shoulders reassuringly.
“Absolutely,” he said. “Of course.”
But he added later: “It’s difficult visiting her, especially when you know what Nora was like before.”
That’s the thorny issue at the heart of advance directives for people who lose the capacity to make their own decisions, said Pope.
If Nora Harris were aware enough to refuse food, instead of passively accepting it, there would be no question.
“Do we listen to the previous Nora or to the current Nora?” Pope said. “That is, unfortunately, not legally or ethically answered well.”
Bill and Nora Harris met at the San Francisco War Memorial Opera House in the early 1970s and launched a four-decade marriage that included world travel. Nora Harris was a librarian and a Virginia Woolf scholar who told family and friends she never wanted to be utterly dependent on others for care. (Jim Craven for KHN)
A bill introduced in the Oregon Legislature last year would have allowed an appointed committee to amend the state’s advance directive form. Critics, including Oregon Right to Life, an advocacy group, opposed the effort, arguing that it paved the way for mistreatment of vulnerable people, including dementia patients like Nora Harris.
“OR legislators move to allow starving, dehydrating the mentally ill,” one headline read. The bill passed the state Senate, but failed to advance.
Nora Harris’ situation also raises issues surrounding a controversial method of hastening death for seriously ill people known as “voluntarily stopping eating and drinking,” or VSED. It causes death through dehydration, usually in seven to 14 days.
VSED is being used by a small but growing number of determined patients with the help of their families, Pope said.
In Washington state, board members at End of Life Washington, a nonprofit that supports medical aid-in-dying, created an advance directive focused on people with dementia. Soon the group plans to release a new form for people who want to leave instructions for stopping eating and drinking at the end of life.
Medical experts say VSED can be a relatively painless, peaceful death. In the absence of nutrition and hydration, the body produces opiate-like substances that blunt hunger and thirst. With additional painkillers, comfort can be ensured, they add.
An analysis of VSED research concluded that “terminally ill patients dying of dehydration or starvation do not suffer if adequate palliative care is provided.” A 2003 survey of nurses in Oregon who helped more than 100 patients with VSED deaths said they were “good” deaths, with a median score of 8 on a 9-point scale.
Unlike aid-in-dying laws or rulings now in place in six states, VSED doesn’t require a government mandate or doctor’s authorization.
But the question of whether people with dementia can authorize a VSED death in advance, to be enacted later, when they’ve lost the capacity to choose, remains legally uncertain, Pope said.
“We don’t have statutes, we don’t have regulations, we don’t have a court case,” Pope said. “We have this thing where you’re allowed to refuse medical care. But this is basic care. Are you allowed to refuse basic care?”
For now, the answer in the case of Nora Harris is no.
That’s frustrating for Bill Harris, who says the emotional — and financial — toll of her illness has been enormous.
“The person you know, the person you married, who you love, is basically going away, fading away before your eyes,” he said.
He had planned to retire from his job at Wells Fargo bank at age 67 but worked an extra eight years to pay for the costs of Nora’s care, which total more than $80,000 out-of-pocket each year. Because she fell ill at age 56, she didn’t qualify for Medicare or other government help.
Worse, though, is seeing his once “extremely bright” wife wandering the halls of the assisted living center, “like a zombie,” he said.
“Nora was quite enamored of Virginia Woolf,” Bill Harris said, referencing the British author who drowned herself after years of mental illness.
“If she had known this would happen, she would have put rocks in her pockets and jumped in the river. This is absolutely where she never wanted to be.”
If you’re a caregiver for someone with dementia, chances are you know the value of a good night’s sleep. Sleep plays a crucial role in our physical, mental, and emotional health, and quality sleep plays a huge role in quality care. Unfortunately, poor sleeping patterns are common amongst those with dementia, as well as family caregivers. Changes triggered by old age and dementia can make sleeping more difficult for those with memory disorders, while the stress and burdens of care can make a full night’s sleep rare for family caregivers.
While there’s no one-size-fits-all solution to sleeping issues — especially when dementia is involved, — small changes can make a big impact on the quality of sleep enjoyed by those with dementia and their care providers. If you’re finding quality sleep is a problem for your loved one or yourself, here are some of the adjustments you might want to consider making:
Improving Sleep for Those with Dementia
Alzheimer’s and other forms of dementia can throw up a number of roadblocks to quality sleep. Dementia can be disruptive to a person’s circadian rhythms, the natural cycle that the body uses to understand when it should be asleep and when it should be awake. Many people with dementia also suffer from Sundowner’s Syndrome, meaning they become more agitated and anxious in the evening. Additionally, seniors with dementia are also likely to suffer from poor sleep quality, which is common in old age.
As a caregiver, you can take steps to regulate your loved one’s sleeping schedule, reduce Sundowner’s-related agitation, and improve you loved one’s overall quality of sleep. These steps include:
Encourage a regular sleeping routine, including going to sleep at the same time each evening and waking up at the same time every morning. This will ensure minimal disruption to your loved one’s circadian rhythms.
Have your loved one spend time outdoors during the day or in an area with lots of indirect natural light. Sunlight is one of the best ways to regulate circadian rhythms, sending signals to the brain about when is best to be awake and when to go to sleep.
Take your loved one for walks during the day and find other ways to encourage light physical activity. Physical activity tires people out and lets the body know that it needs sleep in order to recharge.
Have your loved one avoid screens and other forms of stimulation before going to bed. Screens can disrupt circadian rhythms, while exciting TV shows or activities can induce Sundowner’s related agitation and anxiety.
Ensure that your loved one has a dark and quiet space for sleeping at night. Try to avoid any possible noises or disruptions that could wake your loved one, such as activity from other family members who are up late at night. Also try to avoid strange shapes or harsh shadows that could distress your loved one if they wake up at night.
Getting Enough Sleep as a Caregiver
People with dementia aren’t the only ones whose sleep is impacted by a memory disorder. As a family caregiver, you will typically wake up before your loved one and go to bed at a later time, meaning you often get less sleep than your parent or grandparent. It can also be tempting to stay up late and try to accomplish the things you couldn’t do during the day while providing care. In other cases, you might find yourself so stressed each night that you struggle to close your eyes.
By not getting enough sleep, you can easily put yourself at risk for caregiver burnout. It should come as no surprise that lack of sleep is one of the biggest signs of caregiver stress. And when you suffer from burnout, you put yourself and your loved one in an unwinnable position.
The good news is you can use the same steps — following a routine, getting sunlight and exercise, avoiding screens, and creating a comfortable sleeping space — to help yourself develop healthy sleep patterns. You might also want to take steps like practicing meditation (to reduce stress) and reducing your caffeine intake.
If you find that your sleeping problems are because you’re over-stretching yourself, you might consider professional dementia care. A few hours of professional dementia care for your loved one each week can give you the time you need to tend to other areas of your life. This means you’ll have a chance to accomplish other work, see friends, spend time with family, or take time for yourself. Even four to six hours of care once a week can be enough to make falling asleep easier at night.
If you think dementia care services may be right for your loved one, contact your local Visiting Angels office today to learn more about services available in your area.
Alzheimer’s disease now affects an estimated 5.5 million Americans, and after decades of feverish work, researchers have so far failed to find a treatment that halts or reverses the inexorable loss of memory, function and thinking ability that characterize this feared illness. But researchers have been quite successful at devising ways to diagnose Alzheimer’s earlier and… (more…)
One of the most difficult aspects of being a caregiver is having to cope with aggressive or other challenging behaviors that the person you care for exhibits. Other examples of challenging actions includes hallucinations, verbal abuse, anger, running away, taking clothes off, swearing, agitation, lack of appreciation. One of the secrets is that as a caregiver your response is a key on managing them and can influence the future reoccurrence.
The first thing to do is understand why these behaviors are occurring. The answer lies in 3 areas for people with dementia. People react in this way because of fear, confusion, and pain. They feel helpless or afraid and react to protect themselves. The first thing to do as a caregiver when these difficult behaviors erupt is take a step back and try to understand what is happening that is triggering them.
Dementia directly impacts the brain. It causes people to act in uninhibited, unfiltered ways. It directly impacts our ability to think, find words, or control feelings or what we do. It causes confusion. Take a moment and imagine what that would be like for you. It also tends to exacerbate the personality traits the person had prior to the onset of the dementia. If you were a mean person before your diagnosis, those men traits may come out in a more intensified way as your condition worsens.
As caregivers we have to remember that people suffering from dementia still need to be respected. They want their wishes to be considered. They also want to feel they have some control over their environment. What may be surprising is sometimes they even regret these negative behaviors. They might not be able to express those feelings but it is important for caregivers to be aware they are there.
Caregivers can do some things to help manage these incidents when they occur:
Try to identify the cause of this behavior. Why are they reacting this way? What are they afraid of? What are they feeling? Try to make sense out of the reaction of a loved one.
Respond in a calm and comforting manner. Don’t argue. That will trigger more aggression. Don’t force the issue to prove you are right and they are wrong. Nobody will win that battle. Remember your body language. Smile and appear relaxed. Use direct eye contact. Be aware of the tone of your voice and the messages you are sending both conscious and unconscious.
Take a moment and imagine not knowing where you are. People often become combative and want to leave a place because they don’t recognize where they are. Try to gently redirect the confused person. Play a favorite song, go for a walk, take out a photo album. Use pictures or other concrete, tangible cues to help them focus and understandwhere they are at and why they are there. Keep your responses simple and direct. Say something to acknowledge their feelings like “I know it is confusing”, or “we can’t go now because it is very late or it is pouring rain” or whatever makes sense for you. Think about a response that will help them feel safe, cared for, and gets to the root of their fear.
Pay attention to patterns of behavior. Do these episodes occur at a particular time regularly? Some people experience sundowner syndrome where they get more confused as it gets dark. Did something happen to trigger these episodes? What happened before they got agitated?
Look at the environment. Is there too much noise or stimulation? Is it too hot or too cold? Are there certain people that seem to upset the person receiving the care? Is being in a new place problematical and perhaps confusing?
Validate their feelings. Be understanding about what they are trying to communicate even if it is difficult to perceive. Try to collaborate rather than confront the person you are taking care of. If you overtly challenge what is being said or express doubt about it that can trigger an angry episode.
Become a master of distraction. Try to use distraction as a technique to manage negative episodes and outbursts. Think about their favorite foods, hobby, music, photographs, clothing, or television show. Sometimes talking about people they like can ease the tension. Pay attention to what works and have it on stand by when a new outburst occurs.
This is very hard but also very important: Try to separate the person from the disease.
Dementia damages the brain and so people experiencing it are unable to control their thoughts, actions, feelings, and behavior as a result. Try not to personalize the negative interactions. Set boundaries for yourself and the person receiving care regarding physical safety. You cannot permit violent behavior that might potentially harm you or the person you are caring for. If this happens consult a physician about how to manage this issue. Take a time out for yourself if you need it. You must take care of yourself as a caregiver. That may be the most important tip of all.
I recently visited my husband at the long term care facility where he now resides and I was impressed by his latest creative work of art. This time he had all of the things out of his bathroom cupboard, his mouthwash, hair brush, plastic glass, soap and toothbrush arranged in an interesting manner on the counter by the sink in the small “kitchenette” area of his room.
It looked like a small city scape, I thought, with the brush acting like some kind of bridge between the glass and the soap. The mouthwash had the toothbrush carefully balanced horizontally on it in the background.
“Well this is nice” I said. “Why is all of this out here?”
I received the usual response, which was really no response, as he cannot effectively articulate what he was trying to do with the items. This was not the first time I have arrived to find modern day sculptures around his room. Often the Styrofoam cups and plates that snacks arrive on are stacked in an interesting and sometimes gravity defying pile on the headboard of his bed. The toilet paper rolls and the paper towel rolls (full ones and empty ones) always seem to need to be balanced upon one another in a precarious manner.
My husband has vascular dementia and that has robbed him of the ability to remember his friends and family. He knows that I am his wife, I think, but he does not remember my name. After caring for him for several years at our home it became a matter of safety for him and sanity for me that he be moved into a long term care facility.
He had wanted to be an architect when he was young but circumstances led his to being an accountant for over 40 years. I can only guess that the creative part of his mind now wants to express itself when other forms of communication have become difficult.
He also amuses himself by re-arranging the various stuffed animals that occupy his room. There are two stuffed dogs – a black and white one that has long ears and a small white poodle replica. These dogs are often in unique positions and are sometimes on the bed in the middle and sometimes they are tucked into the top. The smaller poodle dog can be found whispering into the larger dog’s ear or on occasion it is the other way around. The dogs may be sitting back to back on some days or they might be in a face to face position. They are usually on the small table that is in the corner of the room and my husband encourages me to say hello to them when I enter the room. He often asks me what their names are and I tell him that their names are Spot and Fifi.
Recently the dogs have been joined by a hand knit bear that is sporting a pair or red pants and a multi coloured sweater. The bear does not seem to interact with the dogs but rather enjoys sitting on his own chair or sometimes he is on the headboard of the bed. I have no idea where the bear came from but he seems to be a permanent resident now. I now have to state his name each time I arrive – I have decided to call him “Beary”.
I find it quite amazing that he is able to entertain himself this way when there are so many other things he can no longer do. I would never have thought that he would have anything to do with stuffed animals as I am sure his sense of masculinity would have precluded that when he did not have this disease.
My husband does not want to interact with the other residents doing crafts or exercises but he does seem to like his activity of using items in his control to build structures. He shows no interest in the Legos or the Lincoln logs out in the common area.
If you have someone in care I would recommend that you try to find something in the creative vein that they might like to do. It could be as simple as putting photos in and out of the photo album with the pockets that you slide pictures into easily. If you have photos of family members or things that the resident likes such as golf pictures, landscapes or cityscapes, dogs or cats or perhaps certain types of cars. It might help to write on the back of each picture in large printing who or what the pictures are. A fun activity could be to sort out all of the people pictures from the pet pictures.
Perhaps when you visit you can empty out a drawer and the two of you can fold the clothes and organize them and put them back in the drawer. I know that my husband is a very tidy folder and we can spend some time getting that task done. It seems to give him a sense of accomplishment.
I also have brought a target and some bean bags that you can throw through the holes in the target. We do not keep track of the points but it is always fun to see how far away we can put the target and hit the holes with the bean bags. Even more interesting is finding the bean bags for this activity since they sometimes end up in very different places from where they were last placed. A good game of “Hunting for the Bean Bags” usually starts this activity.
If you have a person who used to like to knit then a large ball of wool and large needles could be brought in and the first couple of rows done on a simple knitting pattern, I saw a show where a person got all kinds of seniors in care facilities making squares of knitting and she then felted those squares and made them into purses and other things.
On my next trip I plan to bring in some poker chips that are various colours and have them all mixed together in the box and ask that my husband sort them out into the proper colours on the rack they go in.
If you have a person that you care about in a long term care facility with dementia then I would encourage you to try to find their creative side. It may surprise you to find out how they can still be imaginative. Dementia may have robbed their mind of many things but it seems it cannot quite put out the spark of creativity.
Before my sister was struck by frontotemporal dementia, her wishes were very clear. No feeding tube or breathing machine if she became profoundly incapacitated, without the prospect of recovery. No aggressive life-sustaining measures. And she wanted to stay in her home, all the way through. But that was then, when the prospect of becoming infirm was… (more…)
Ten months ago, Peter Mittler stood before a global audience of Alzheimer’s disease researchers and advocates and decried the indignities that people with dementia undergo. He knows the subject intimately: Mittler, an 86-year-old British psychologist, was diagnosed with mild Alzheimer’s in 2006. “Everybody thinks that we are just a medical problem,” Mittler told his audience. “People… (more…)
A new study finds that the prevalence of dementia has fallen sharply in recent years, most likely as a result of Americans’ rising educational levels and better heart health, which are both closely related to brain health.
Dementia rates in people over age 65 fell from 11.6 percent in 2000 to 8.8 percent in 2012, a decline of 24 percent, according to a study of more than 21,000 people across the country published Monday in JAMA Internal Medicine.
“It’s definitely good news,” said Dr. Kenneth Langa, a professor of internal medicine at the University of Michigan and a coauthor of the new study. “Even without a cure for Alzheimer’s disease or a new medication, there are things that we can do socially and medically and behaviorally that can significantly reduce the risk.”
The decline in dementia rates translates to about one million fewer Americans suffering from the condition, said John Haaga, director of behavioral and social research at the National Institute on Aging, part of the National Institutes of Health, which funded the new study.
Dementia is a general term for a loss of memory or other mental abilities that’s severe enough to interfere with daily life. Alzheimer’s disease, which is believed to be caused by a buildup of plaques and tangles in the brain, is the most common type of dementia. Vascular dementia is the second most common type of dementia and occurs after a stroke.
The new research confirms the results of several other studies that also have found steady declines in dementia rates in the United States and Europe. The new research provides some of the strongest evidence yet for a decline in dementia rates because of its broad scope and diverse ranges of incomes and ethnic groups, Haaga said. The average age of participants in the study, called the Health and Retirement Study, was 75.
The study, which began in 1992, focuses on people over age 50, collecting data every two years. Researchers conduct detailed interviews with participants about their health, income, cognitive ability and life circumstances. The interviews also include physical tests, body measurements and blood and saliva samples.
While advocates for people with dementia welcomed the news, they noted that Alzheimer’s disease and other forms of memory loss remain a serious burden for the nation and the world. Up to five million Americans today suffer from dementia, a number that is expected to triple by 2050, as people live longer and the elderly population increases.
The number of Americans over age 65 is expected to nearly double by 2050, reaching 84 million, according to the U.S. Census. So even if the percentage of elderly people who develop dementia is smaller than previously estimated, the total number of Americans suffering from the condition will continue to increase, said Keith Fargo, director of scientific programs and outreach, medical and scientific relations at the Alzheimer’s Association.
“Alzheimer’s is going to remain the public health crisis of our time, even with modestly reduced rates,” Fargo said.
Although researchers can’t definitively explain why dementia rates are decreasing, Langa said doctors may be doing a better job controlling high blood pressure and diabetes, which can both boost the risk of age-related memory problems. High blood pressure and diabetes both increase the risk of strokes, which kill brain cells, increasing the risk of vascular dementia.
“We’ve been saying now for several years that what’s good for your heart is good for your head,” Fargo said. “There are several things you can do to reduce your risk for dementia.”
Authors of the study found that senior citizens today are better educated than even half a generation ago. The population studied in 2012 stayed in school 13 years, while the seniors studied in 2000 had about 12 years of education, according to the study.
That’s significant, because many studies have found a strong link between higher educational levels and lower risk of disease, including dementia, Lang said. The reasons are likely to be complex. People with more education tend to earn more money and have better access to health care. They’re less likely to smoke, more likely to exercise and less likely to be overweight. People with more education also may live in safer neighborhoods and have less stress.
People who are better educated may have more intellectually stimulating jobs and hobbies that help exercise their brains, Lang said.
It’s also possible that people with more education can better compensate for memory problems as they age, finding ways to work around their impairments, according to an accompanying editorial by Ozioma Okonkwo and Dr. Sanjay Asthana of the University of Wisconsin School of Medicine and Public Health.
Although educational levels increased sharply after the World War II, those gains have leveled off, Haaga said. People in their 20s today are no more likely to have graduated from college compared to people in their 60s.
“We have widening inequality in health outcomes in the U.S.,” Haaga said. “For people without much education, we’ve had very little improvement in health. The benefits really have gone to those with better educations.”
Dementia took over Pauline Finster’s 91-year-old mind long ago and she may die without having another real conversation with her daughter.
After Finster broke her hip in July 2015, Jackie Mantua noticed her mother’s speech ebbing until she only said “hi,” or that she felt fine. Mantua last heard Finster speak six months ago.
Finster’s hip surgery led to a series of medical interventions that left her with poor circulation in her legs. Then gangrene set in. Mantua won’t look at the dead tissue on her mother’s right foot that is now creeping from the toes to heel.
She has instructed the staff at the AlfredHouse assisted living home in Rockville, Md., where her mother has been in hospice care since earlier this summer, to keep Finster on Tylenol to hold back the gangrene’s discomfort.
Is that enough? It’s really all she can do for her mother at this point, Mantua said.
Hospice’s purpose, at least one of them, is to ease a dying patient’s pain at the end of life and improve the quality of that life. But what’s to be done when a dementia patient in her waning days can’t communicate her pain or help identify the cause? Or resists taking medications?
All those concerns can be troubling for family caregivers for loved ones with dementia and in hospice care, according to a recent study in the American Journal of Alzheimer’s Disease & Other Dementias.
Families often describe a cancer patient’s last months as stressful but meaningful. That isn’t the case with dementia patients because the disease changes the patient’s personality and causes behavior issues, according to George Demiris, one of the study’s authors and a professor of biobehavioral nursing and health systems at the University of Washington’s School of Nursing.
Caregivers who took part in the study said they worried that their loved ones were in pain, but unable to properly express it — and that possibility disturbed them, according to interviews with families taking care of dementia patients in their last stage of life.
Multiple participants described feeling frustrated and defeated by patients’ cognitive difficulties and changing emotions, the study reported. Some described the patients as “prisoners” inside their bodies.
Helping a dementia patient in pain can be challenging for hospice care providers, too.
Previous research, cited in the recent study, found patients with dementia were prescribed lower doses of opioids than patients with cancer with similar pain scores.
Other research cited found that hospice nurses caring for such patients frequently asked relatives to interpret patients’ “pain signals” to help them assess pain. For example, one caregiver knew her mother was in pain when she moved a certain way in her chair. Another recognized his wife was in pain when a home health care aide gave her a bath by observing how she squeezed the aide’s hand.
Sometimes, patients gasp for air or repeatedly touch the same part of their bodies.
Mantua said she watches her mother’s face and stays vigilant for winces or grimaces. Her face is still expressive, Mantua said. Still, there are no words, only moans to indicate something is wrong.
Recently, Mantua said her mother has been acting “strange.” Instead of her usual vacant but happy smile, Finster looked at her daughter with a “horrified” expression. Mantua told the hospice chaplain that it looked like her mother had seen the devil.
“You have no idea because she can’t say anything,” Mantua said. “I was saying ‘What’s wrong? What’s wrong?’ and she’s just looking at me like crazy.”
Finster has had dementia for 10 years. She has spent most of that time in facilities with increasing levels of care, moving from an independent living facility, to assisted living to memory care. Mantua has felt some of the frustration that caregivers of other patients with dementia have experienced. Three or four years ago, when Finster still had a phone in her room, she sometimes called her son Les — Mantua’s older brother — 10 times to leave him the same message that people were coming into her room and stealing her food. She simply forgot that she had called before.
Finster’s years of cognitive decline have taken a toll on Mantua and her family.
“You get to the point you want them to die because it’s hard,” Mantua said. “It’s hard to deal with. It’s a very helpless feeling.”
Now 53, Mantua is a mother of three children between the ages of 27 and 31 and grandmother to twin five-year-old boys. She said she doesn’t have the patience or natural caretaking abilities to tend to her mother full time.
It comforts her to know that her mother is looked after by a trained staff 24 hours a day, but for families who find themselves as the primary caregivers for dying dementia patients, the job can lead to anxiety, depression and grief, according to the recent study.
“Caregivers stated that patients were combative because they could not understand that interventions were meant to help them, or that they forgot about past pain and so rejected attempts at assessment and treatment,” the study said.
For families, a loved one with dementia can become like a stranger who grows angrier and more aggressive than the person they remembered, said Demiris, which “complicates the caregiving experience.”
Pauline Finster isn’t aggressive anymore. Mantua remembers when Finster’s dementia made her paranoid and angry. She was once so combative, the staff at her former assisted living facility wouldn’t try to feed her unless Mantua or her brother were present.
The decision to begin hospice care wasn’t easy for Mantua or her family. She said it feels like her mother is already gone.
There isn’t much for Mantua to do when she visits her mother at AlfredHouse. She chatters as Finster dozes, cradling a baby doll that is always with her. Someone at the assisted living home regularly changes the doll’s clothes, which amuses Mantua.
For now, she keeps driving an hour once every other week from her home on Maryland’s Eastern Shore to Finster’s room in Rockville where they wait for the end together.
The caregiving community is incredibly diverse, but it seems we can agree that dementia caregivers — both family and professional caregivers — should be trained. Dementia caregiving is a world where the ‘normal’ rules don’t apply and we all need guidance learning to support, motivate, and keep people with dementia safe.
Family caregivers and professional caregivers both report that they wish they’d gotten training in dementia sooner and that it makes their lives easier — while helping them take better care of dementia patients.
Even at the assisted living facility where I’m a nurse, where I’d say the majority of my residents have dementia in some form, our aides have no idea how to handle it.
One resident consistently tries to “go home,” often packing up all her things, trying to get out the doors etc. The best way to calm her, I’ve found, is to tell her something to the effect of “the moving truck broke down and they won’t be able to fix it until tomorrow.” She accepts that and goes about her day.
So many times I’ve had to coach my aides because they try to prove to her that she lives at the facility, showing her name on her door and things. This only leads to her becoming agitated, then I have to medicate her because nothing will calm her down.
I like to explain it like this to my aides: imagine you’re finishing up your shift and someone tells you that you can’t leave, you live there and it’s time for you to get into bed. You know 100% that you don’t live there. When no one lets you leave you get mad, and scared, and you just want to get out of there–these people are keeping you in captivity. You’ve got to get home to your kids, go grocery shopping, and no one will let you go home. You haven’t worked here that long and now they’re telling you that you can never leave.
Because dementia patients can’t be “taught” out of their delusions. It just doesn’t work that way. So yeah, dementia training should be 100% mandatory. – Devon C.
Here’s what our community members have to say
The focus for many places, caregiving organizations, and doctors seems to be on what the dementia patients have lost ability to do. There is still so much they can do, respond to, which if we help facilitate will make the patients daily life meaningful. – Colleen H.
One of my mother’s caregivers from the agency was up all night arguing with my mother about whether there was a baby in the house. My mother asked “Where is the baby?” The ones that had training in dementia knew to answer with, “the baby is at your daughter’s house tonight so that you can rest.” – Barbara K.
I don’t think it’s a bad idea at all. My husband has Alzheimer’s/dementia and sometimes it is so hard for me to handle the cognitive /not cognitive moments with him. I try to just “go along” with those moments, but, it is very difficult. If there is a better way to handle it with proper training, sign me up! – Kathleen S.
I agree training would be great. Everyone doesn’t have the patience to deal with dementia/Alzheimers patients no matter how trained they are. They first need a heart to care and understand that this isn’t an easy job. – Quince J.
I’m caring for a grandparent and I was totally unprepared for the multiple bad episodes. Even her gerontologist isn’t much help. – Fern L.
There are times that you will wish you had training when they have a really bad episode. That training can make a big difference to their care and your approach. – Nicole K.
I’ve done all my own training on my own time with my own money because I adore these people and they deserve to be understood and their families deserve to know their being well taken care of. – Michelle W.
I used an agency to get a caregiver for my mom with Dementia, it was amazing how little they knew and were just trained on the cleaning part. I was training them and paying them hundreds of dollars…very sad. How do you help your client if you don’t understand their needs? I feel very bad for elderly that don’t have family around all the time to oversee the care they are receiving. – Terry F.
Caregivers who are inexperienced in this field leads to abuse because of the lack of understanding. And by abuse I mean unknowingly acting out towards the person with out intentionally meaning so. When a caregiver doesn’t understand and that caregiver starts to get caregiver breakdown, unintentional harm happens with out even realizing themselves they are doing it. I’ve personally have seen this happen way to many times. It’s a bad situation to both parties involved. – Kim S.
I hired caregivers to help with my Dad, and I was amazed at what they didn’t know about Dementia patients. I had to train them how to react, care for and converse with my Dad. – Patti K.
I take care of my Mum who has Alzheimer’s. I’m very glad I got trained in this area. It has been a stress saver. When I look at my Mum, I see the great honour I have been given to take care of her. – Melody F.
After what my nans going through on a so called dementia unit in a hospital, I think people need training. We have to go to the dementia unit and feed her everyday because they don’t have the patience. They have no idea at all. – Charlotte S.
Some comments have been edited for clarity and/or grammar.
The thought of going to the hospital can be very frightening and disorient for people suffering from dementia. The stay at the hospital could be for a short period, for instance, an operation or for a longer period due to a serious illness or accident.
Statistics show that people occupy two-thirds of beds are over the age of 65, and around 30% of them will have some dementia.
Since dementia patients have trouble understanding where they are; the confusion compounds if they are ever taken to a place which is unfamiliar to them.
This is why going to the hospital can be a very upsetting situation for them, and may even confuse them more than usual.
They may not understand where they are, as hospitals can seem very noisy for people with dementia. If you’re worried about taking your loved one to the hospital, you might want to check out these factors in the vicinity, to make the stay or visit as less cringe worthy as possible.
Staff who are skilled and have time to care
The staff should be well educated about dementia, and trained to handle the patient with care. Moreover, there should be an availability of specialised doctors and nurses for dementia, who can understand the disease and its conditions thoroughly.
The staff to patients ratio at the hospital should also be sufficient enough to support the complex needs of dementia patients.
Environment that is dementia friendly
Due to the compound nature of this disease, the kind of environment that a patient is kept in plays a significant role, and can have a lasting impact, both negative and positive on the individual with the dementing illness.
The hospital environment should be calm and should increase orientation, provide comfort and become familiar quickly. The lighting and floor should be fixated in such a way that it supports orientation and not disturb the patient visually.
For some patients identifying the bed, the area can be a lifeline, for this very reason the bed area should always be personalized with familiar items for dementia patients. Moreover, since mental stimulation is critical for a person suffering from dementia, the resources in the room should support activity and stimulation.
Care plans that are person centred
We are all well aware that the symptoms of dementia vary from one person to another; therefore, their care cannot be generalised. The hospital should ensure that the care for a dementia patient is based on the specific needs of that individual.
Their preferences and understanding of their abilities are crucial when developing a care plan. Moreover, to make the patient more comfortable in the hospital environment, family and friends should also be involved in the care plan.
Due to individual differences in the disease itself, the encouragement of social engagement and activities should be to an optimal amount; of course, the optimal amount also varies from one person to another.
Specialists should be present at all cost when devising the care plan; support from professionals can ensure that the individual with dementia is getting the right support.
Partnership with the caretaker
Adequate care of the patient acknowledges the needs of families and caregivers who have been helping the person with dementia since the very beginning.
Of course, the caretaker is often happily willing to assist the care of their loved one, but the hospital staff needs to take into consideration how they wish to be involved. Moreover, when it comes to decision making, the caretaker’s assessment in the decision-making process should always be considered.
This is especially important when hospitals are aiming to provide the right care to the person suffering from dementia.
Families sometimes hold valuable information that can help the staff get a proper assessment of the disease and provide care which meets the exact needs of the individual.
The care of dementia patients is ever changing and unique. Each family with a dementia patient may have special needs that are entirely different from another family with a member with the same illness. Hospitals, which take into consideration these four factors and understand the caretaker should consider the uniqueness of the patient for their loved one suffering from dementia.
ALMA CA– USEY
Alma Causey is a blogger by choice. She loves to discover lives and world around her. She likes to share her discoveries, experiences and express herself through her blogs.
Assisted living residents who abuse other residents or staff are likely to have dementia or severe mental illness, afflictions that pose unappreciated risks in facilities occupied by vulnerable elderly adults, a new study reported.
That abuse can include physical, verbal and sexual incidents, according to a study published online last month in the Journal of Applied Gerontology. Other studies have examined resident aggression in nursing homes, but the authors said few have explored the problem in assisted living.
“Resident aggression and abuse in assisted living facilities is prevalent and warrants greater attention from policy makers, researchers and long-term care providers,” the researchers said.
The study examined data collected in a 2010 federal survey in which facility administrators were asked about instances of aggressive or threatening behavior by residents in the previous month, among other questions.
Gilbert Gimm, the study’s lead author, said he was surprised to discover how prevalent resident aggression and abuse was in assisted living. Older residents’ frustration with their declining ability to care for themselves might be a factor that leads them to abuse others, he said.
In a national sample of 6,848 residents at least 65 years old, Gimm and two collaborators found 7.6 percent of residents had engaged in physical aggression or abuse toward other residents or staff in the month before the survey. Verbal abuse or aggression had been shown by 9.5 percent of residents and 2 percent had taken part in sexual abuse toward residents or staff, according to the study.
Of the residents linked to aggression, those with dementia were five times more likely to engage in physical abuse and those with severe mental illness were three times more likely to take part in physical abuse, researchers reported.
Male residents also more often engaged in physical abuse than female residents, they said. Residents with severe mental illness were three times as likely to engage in physical abuse, verbal abuse and sexual abuse.
Researchers said their estimates might be low because resident aggression that happened out of staff members’ sight was not captured in the federal survey.
Elderly people often enter assisted living when disabilities and illnesses compromise their ability to live alone safely. Once they enter a facility, cognitive impairment, behavioral issues or physical limitations can leave them vulnerable to mistreatment.
Resident aggression against fellow residents leads to injuries, physical pain, depression, anxiety and increased risk of death, according to earlier research.
When assisted living residents are seriously injured, they may be hospitalized or moved to a different location in their facility, but both can be highly disruptive for seniors who don’t cope well with transitions, Gimm said.
People with dementia show memory loss, and have difficulty communicating and controlling their behavior. The condition has been found to make them aggressive and unable to recognize when they harm others, factors which the study said may contribute to the prevalence of abusive behavior. Earlier research cited by the authors found that 42 percent of assisted living residents in the U.S. have dementia in some form.
People with dementia can be unnerved by new situations, like a staffing change. Anything can seem unfamiliar to those suffering from short-term memory problems. Their fear of the unknown may cause them to lash out, trying to fight back or flee, said Gimm, an associate professor in the Department of Health Administration and Policy at George Mason University in Fairfax County, Va.
The Applied Gerontology study said increased training is needed for staff and caregivers to detect and manage residents with dementia and mental illness.
Family members should look for assisted living facilities that have separate units for dementia patients with specially trained staff who can spot and manage the early warning signs of aggressive behavior, Gimm said.
Confession: I am a caregiver, and I have no idea what I’m doing.
In the blink of an eye, I have shifted from a career as national vice president of sales to suddenly becoming the sole caregiver for my mother, who lives nearly 3,000 miles away. While I’m fortunate she doesn’t need daily care just yet, the travel and time spent away from my home, friends and family takes a toll.
My mother has been silently suffering from dementia for the past few years, I learned, as I began to spend more time with her. And she’s aware that she’s slowly slipping, but simply refuses to acknowledge or understand why, because of her religious belief in faith healing. Any type of disease — let alone the dementia that has her in its suffocating grip — is the topic we never talk about, the proverbial elephant in the room. For her, to acknowledge dementia would be to admit that it’s real and ultimately, to believe that God’s plan has been altered.
This was the religion of my childhood. I grew up in the house on the island where my mother still lives, attended Sunday School at the church where my mother still goes. Life in this small island community isn’t much different from how it was forty some-odd years ago before I left the church and my mother for another coast three thousand miles away.
My own journey was not without darkness and depression. Successful career aside, I struggled with my own demons, finally surrendering to sobriety after many years. My life changed dramatically: relationships were rebuilt, promotions achieved, a supportive and caring new husband came into the picture. The short trips I took back east to visit my parents continued. Not too long ago, I was faced with the startling reality that my mother was going to need more help. And, as the only child, I bore that responsibility. So I stepped down from my twenty-five-plus year executive career and stepped up to challenge of caregiving.
For months, the task seemed daunting. Difficult. Depressing. Discouraging. Draining. It was easy to be resentful; much harder to be compassionate. Yet a funny thing happened: the more time I spent with my mother, the more I realized how much we could both learn together. Rather than remain detached and angry, I reached out to other caregivers. Through online support groups, I discovered others who felt as I did. Instead of isolation, I reconnected with the community of my youth and through volunteering, became involved with local senior programs. As I peeled off the layers of dismay, I discovered patience, love and true empathy for my mother and others suffering from dementia.
“Try to understand what she’s going through,” said a long-time friend who lost her mother to Alzheimer’s. The simplicity of this wise advice was astounding. I put myself in mom’s shoes and walked a thousand miles. I saw that the corporate knowledge I’d collected over the decades of my working life could actually be applied to many of the situations I encountered in my caregiving life: practicing teamwork, multitasking, celebrating accomplishments, achieving goals. I ran this new life like a business, but with a newfound patience. And with a heart.
As the seasons changed, so did my outlook. Winter turned to spring: bleakness gave way to renewal. We placed mom’s husband in an Alzheimer’s home; I helped her live on her own again. The entire summer I spent with her became more about celebrating the glory of the outdoors than my initial plan to observe the progression of her dementia. Together, we took walks along the beach, picked bouquets of violets and daisies, made blueberry pies. The glory of autumn in New England brought foliage viewing drives and homemade applesauce from our backyard orchard. I returned for the month of December, and we decorated the house, baked Christmas cookies for the neighbors and spent our first Christmas together in more than thirty years.
My life as a caregiver is not perfect. My overachieving “Type A” personality struggles with being unable to commit to anything but being there for my parents. I am never sure which side of the country I’ll find myself in. So I opt for volunteering over a paid job. Embrace the time I am on the left coast with my ever-so-supportive husband, pets and friends. Run short races instead of marathons.
Along the way in this new journey, I am learning to accept things — and people — the way they are. I am trying to understand, not to be understood. I’ve replaced problems with solutions. I give back, offering my own caregiving tips and lessons learned to other caregivers. I remind myself of my husband’s wise words, when I told him I was half-stressed, half-okay: “Stay in the okay.” And I remember to cherish, not dread, time with my mother, who, it turns out, is really not so different than I am.
For more tips on caregiving for people with dementia and Alzheimer’s check out these informative caregiving sites and blogs:
AgingCare.com: online caregiver support
Caregivingmadeeasy.com: Helpful tips and hints for caregivers of elderly
Caregiverwarrior.com: caregiving stories and tips for caregivers of dementia patients
Dementia Challengers.com: written by caregivers sharing their experience
Firstat.com: information on home health care services for elderly
Gettopical.com/caregiving: advice and encouragement for caregivers of dementia patients
My dad, Reuben Soldinger, was ill for nearly two years. His mind was confused about many things. Sometimes he thought he was at a hotel, not in a nursing home. Often he didn’t recognize my mother. Some days, he thought his son was his brother. But he was so much more than his forgetfulness. He was clever. He maintained a sense of humor. He still had a sense of amazement. He remained engaged in life.
His confusion defined his existence. He knew he was confused at least half of the time and wondered what he could do about it. He looked for the train, or he tried to do his job, or he gave a speech. But confusion was where he lived. He didn’t know his age, the year, or his surroundings, but he did know that he could still have an impact on things. He knew it until his last days.
On this path he went forward with his heart. His mind no longer shielded him from feelings that he didn’t want to face. Every emotion was authentic. There was truth in his interactions. Each moment was new, but it was also full of love, anger, or fear, and he had to travel through it.
Through this journey with my father I have been transformed. I walked the narrower path of being awake to the present moment. Before his illness, I had a very good relationship with my dad. Yes, it was laced with dramatic strife in my teenage years, miscommunications as adults, some disagreements and sometimes a lack of real understanding; but mostly he was my primary source of support and my loving guide for how to be in the world. Our relationship, as is true in most relationships, relied on past history for understanding each other. As this information became less available during his illness, I had the opportunity to see and hear him differently. The pain and the tragedy of it all was there, but so was the heart’s ability to love, and the ability to see and hear his spirit, and this became the avenue for many unexpected gifts.
Dad changed. And he grew. Growing happens all throughout life, even at the end. I recognized his spiritual and emotional shifts and asked many questions along the way. How does one walk with someone who doesn’t function within the social norms? How do I see to the needs of my beloved parent? And most important, how can I accompany him?
Accompanying Dad on this journey has been an honor. This writing is a tribute to who he was as a human being and a tribute to the growth that happens in every moment of life.
Carrie Clarke is a former traditional signwriter who has worked for many years in the arts and health field. She is currently an Occupational Therapist working with an NHS inpatient unit for people with dementia in Exeter, UK; she is also a practising artist.
In 2010 she led a team in developing an innovative ‘Enhancing the Healing Environment’ project to transform an inpatient hospital environment for people with dementia. The project had at its heart a participatory approach, consulting with people living with dementia, their carers and staff, and incorporating their views and ideas into the design. These individuals were also actively involved in creating some of the outstanding and moving artwork for the new unit.
As an Occupational Therapist, the fundamental inter-relationship between people, meaningful occupation and the environment is central to Carrie’s work. To this she brings an aesthetic eye and a strong desire to raise awareness of the impact of environments on the physical, mental and emotional well-being of people living with dementia.
Carrie is passionate about finding new ways to create a more sustainable, respectful, meaningful and engaging way of being with people with dementia, that will support a better quality of life based on a sense of connection to place, to self and to others. For this to happen, new relationships and partnerships need to be forged that cross conventional boundaries, encouraging creative and innovative approaches to one of society’s greatest challenges — that of ageing and dementia.
The ‘EHE’ project was recently ‘highly commended’ in the Arts and Health South West Awards 2012, and Carrie’s work won an NHS award for ‘Change and Innovation’ in September 2012.
A professional flutist, Toshiro Mitsutomi, developed 3 tips to evoke dementia patients’ memory and their life successfully during his 40years career: 1)play close 2)play at the same eye level 3)looking in the eye while playing. He actually demonstrated it by performing his original composition in the TED audience.
Music saves health care – Musicians play the role of nurse through the practice of music.
Toshiro established the female orchestra “flumus” for the purpose of supporting female artists. He founded the Music Hope project which implements a variety of workshops that strengthen the ties of “music”, “body”, and “heart” through playing music, dancing, exercises, and breathing in order to provide health support and create a societal contribution for musicians and mainly for municipal facilities such as medical institutions, nursing homes, schools and educational institutions. They also perform concerts for all of the caregivers and nurses, and continue to support people with the infinite power of music.
June emphasized that families need to work alongside nurses to care for their relatives with Dementia.
Professor June Andrews FRCN is Director of the Dementia Services Development Centre at the University of Stirling. She is a Fellow of the Royal College of Nursing and has received a Lifetime Achievement Award from the Chief Nursing Officers of the UK.
She has also been recognised with the prestigious Robert Tiffany International Award and the Founders Award of the British American Project. She headed the Royal College of Nursing in Scotland, and directed the Centre for Change and Innovation within the Scottish Government in addition to her career in the NHS. She advises health departments and service providers around the world and is the author of Dementia; the One-Stop Guide.
NIH-funded study examines medical, care costs in last five years of life.
In the last five years of life, total health care spending for people with dementia was more than a quarter-million dollars per person, some 57 percent greater than costs associated with death from other diseases, including cancer and heart disease. The new analysis, appearing in the Oct. 27, 2015, online issue of the Annals of Internal Medicine, estimates that total health care spending was $287,000 for those with probable dementia and $183,000 for other Medicare beneficiaries in the study.
The analysis was funded primarily by the National Institute on Aging (NIA), part of the National Institutes of Health. Additional support was provided by the American Federation for Aging Research.
Amy S. Kelley, M.D., of the Icahn School of Medicine at Mount Sinai, and colleagues analyzed data from the Health and Retirement Study, a nationally representative longitudinal study supported by the NIA and the Social Security Administration, as well as linked Medicare and Medicaid records and other data. They calculated the “social” costs of all types of care for 1,702 Medicare fee-for-service beneficiaries age 70 and older who died between 2005–2007. Patients were divided into four groups: those with a high probability of dementia; those with either cancer or heart disease; or those with another cause of death.
The researchers calculated costs from Medicare, Medicaid, private insurance, out-of-pocket, and informal care over the last five years of life. Specific categories of spending included insurance, hospital, physician, medication, nursing home, hired helpers, in-home medical care and other expenses. The investigators also measured out-of-pocket spending as a proportion of household wealth.
“This complex analysis lays out the significant health care costs to society and individuals in the last five years of life,” said NIA Director Richard J. Hodes, M.D. “It provides an important picture of the risks that families face, particularly those with dementia and those who may be least able to bear major financial risk. Such insights are critically important as we examine how best to support the aging of the U.S. population.”
While average Medicare expenditures across all four disease categories were similar, almost all other costs were consistently higher for people with dementia. Medicaid — the federal/state program that supports medical and long-term care for people with limited funds &mdash expenditures for people who died with dementia averaged $35,346 vs. $4,552 for those without dementia. The dementia group had significantly higher enrollment in Medicaid at the start of the five-year study period (21 percent) than those who died from cancer (8 percent), heart disease (8 percent), or other causes (13 percent). Enrollment in Medicaid during the last five years of life also increased for those with dementia (27 percent) compared to those with cancer, heart disease and other causes (12 percent, 15 percent and 15 percent, respectively).
For families, out-of-pocket spending for those with dementia was $61,522 compared to $34,068 for those without dementia. Informal care costs were estimated to be $83,022 for people with dementia vs. $38,272 for those without dementia. In addition, out-of-pocket spending as a proportion of total household wealth five years before death was significantly higher — median of 32 percent for dementia and 11 percent for other diseases. For African-American households the median out-of-pocket expenditure was 84 percent of household wealth for those with probable dementia.
The gap in the financial burden between those with and without dementia was larger among those who were unmarried, African American, and had less than a high school education. Single women with dementia also incurred more out-of-pocket costs than married women with dementia.
About the National Institute on Aging: The NIA leads the federal government effort conducting and supporting research on aging and the health and well-being of older people. The NIA provides information on age-related cognitive change and neurodegenerative disease specifically at its Alzheimer’s Disease Education and Referral (ADEAR) Center at www.nia.nih.gov/Alzheimers For more on health and on aging generally, go to www.nia.nih.gov. To sign up for e-mail alerts about new findings or publications, please visit either website.
About the National Institutes of Health (NIH): NIH, the nation’s medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.
Kate Irving, who has spent the last 20 years of her career working with people with Dementia, is clinical lead in the Memory Works clinic in the Healthy Living Centre, an initiative to decrease stigma and increase access to information about cognitive health promotion for all.
Kate talks to us about Four Myths of Dementia. She dispels the common myths of dementia by explaining the truth of dementia.
Kate is currently working in Dublin City University, where she is a senior lecturer in Mental Health Nursing and teaches a range modules. Previously she worked at University College Dublin as a lecturer. She completed her PhD in 2001 at Curtin University of Technology, Western Australia. Her thesis was entitled: Case studies in restraint use. Kate is a partner on an Erasmus programme ‘Positive about Dementia’ to establish a European, multidisciplinary Masters in dementia. Kate is the Lead in Partnership with Mary Manning in the HSE partnership project Dementia Skills elevator which develops capacity to care for people with dementia in communities and workplaces.
Kate is leading a national dementia training initiative: Dementia Skills Elevator, which aims to develop capacity in services and communities to better support people with dementia and their families.
Unpaid caregivers and family members spend more than 100 hours a month, on average, assisting elderly people with dementia who live in the community and not in residential care or nursing homes, according to a new study. The time commitment was significantly higher than for similar caregivers who helped elderly people without dementia, who themselves put in an average 73 hours each month.
Overall, people with dementia make up 10 percent of noninstitutionalized adults age 65 or older, but they account for more than 40 percent of unpaid caregivers’ time.
“That overall picture of the footprint of caregiving to older adults that is attributable to dementia is the study’s most important message,” says Judith Kasper, the lead author of the study and a professor of health policy and management in the Johns Hopkins Bloomberg School of Public Health.
The study, published in the October issue of the journal Health Affairs, analyzed 2011 survey data from the National Health and Aging Trends Study and the National Study of Caregiving. It included 2,423 adults age 65 or older who were not in nursing homes who received help with routine activities, and 1,924 family members or others who provided unpaid help to them.
Of 37 million people over 65 in 2011, 3.6 million had dementia, the study found. Seventy-seven percent of those with dementia received routine help with household tasks or personal care such as bathing and dressing. Only 20 percent of the 33 million people without dementia received similar help.
As people live longer, the number with dementia will increase, further straining caregiving resources. About 1 in 9 people over 65 has Alzheimer’s disease, the most common form of dementia, according to the Alzheimer’s Association. By the time they reach age 85, about one-third of people have Alzheimer’s.
Medicare generally covers home health services only if they are related to medical care. It doesn’t cover the routine personal care and other services that people with or without dementia may need on an ongoing basis.
More than 90 percent of the caregiving hours that people put in were for people in a community setting.
However, caregivers who helped someone with dementia in an assisted or independent living facility also put in significant time, 45 hours a month, on average.
Even though they provided fewer hours of care, “it’s interesting that you still found a high percentage of caregivers who were in contact with people when they were in residential facilities,” Kasper says.
Magnetic resonance images are revolutionizing dementia diagnosis because of the use of computers for their analysis. The brain degeneration that causes failure of memory can be detected before symptoms arise, which raises new perspectives for treatment.
Richard Frackowiak is head of the Department of Clinical Neurosciences at UNIL–CHUV. His interest is in human brain structure and function relationships in health and disease. He has won the Ipsen, Wilhelm Feldberg and Klaus Joachim Zulch prizes. Formerly Foundation Professor of Cognitive Neurology at University College London, Director of the Department of Cognitive Studies at the Ecole Normale Supérieure Paris and Vice-Provost of UCL., he founded the Wellcome Department of Imaging Neuroscience (FIL) in 1994. MA and MD Cambridge, DSc London University, he has an honorary doctorate from Liege University and is a Fellow of the Academies of Medical Sciences of the UK, France, Belgium and Europe and a foreign associate of the Institute of Medicine USA. He is also scientific advisor to the Director-General of Inserm.
Whether you’re new to caregiving or a veteran, there are still things to learn about the US healthcare system. This series of videos from Alz Live provides a roadmap. This is part eight of an eight part series.
If you are starting to think that optimal caregiving at home is more than you can manage on your own, you could be right.
The going is, well, going to get rough. Here is who to reach out to.
With a Little Help
For the millions of family caregivers of people who are living with Alzheimer’s, there comes a time when love, dedication, and basic skills can no longer match their loved one’s needs.
Perhaps his or her schedule doesn’t have the flexibility to incorporate the many hours of care required every day of every week. Perhaps greater expertise is needed. At this juncture, many caregivers turn to home care providers to fill the gaps.
“Family caregivers typically contact an agency because of caregiver burnout or scheduling difficulties,” says Lily Sarafan, president and COO of Home Care Assistance (HCA), which provides non-medical in-home care to seniors across the United States and Canada. “It’s a very physically and emotionally demanding job, and they shouldn’t feel guilty about seeking outside help.”
When you think about optimal caregiving, it’s important to bear in mind that it’s about more that the burden or the cost. Start thinking about it as a paradigm shift, advises Sarafan. The goal is to help your loved one thrive in the place they want to be the most — at home.
The greatest advantage of home health care for anyone with dementia is familiarity of surroundings. In a world already threatened by confusion, the disruption of a move can be unsettling.
Non-medical home care services — whether obtained through an agency or independently — help with activities of daily living such as dressing, bathing, or toileting. Or, they might provide a loved one who is still somewhat independent assistance with activities such as meal preparation, housework, shopping or medication management.
The Opposite of Giving Up
Most people aren’t trained as nurses, or social workers, or dementia experts, and as the disease progresses, they find themselves under increasing stress.
Many caregivers “think there’s something wrong because they can’t manage it all themselves,” Sarafan says. “But they need to know they can be a better daughter, or son, or spouse, or family member, or friend when they’re not exhausted and overwhelmed. That way they can spend more quality time with their loved one.”
Family caregivers need the most help with personal care tasks, which is not typically covered by private health insurance programs or Medicare, according to the Caregiver Action Network. So unless your loved one purchased long-term care insurance prior to diagnosis, help will be limited by what you can afford.
Some “dual eligibles” (those who receive both Medicare and Medicaid) may qualify for limited state or federal assistance. However, most costs for non-skilled care will come out of pocket.
Medicare only pays for home health care services if the person requires intermittent skilled nursing care, physical, occupational or speech therapy, is considered homebound, and is under a physician’s care. Services must be ordered by a physician and are paid for by “episode” of care — up to 60 days maximum, depending on care required.
If your choices appear to be either becoming a full-time caregiver yourself or placing your loved one in a residential care facility, you might want to consider the third option of in-home care.
“It honors the patient’s wishes to stay at home through end of life and allows the caregiver to live his or her own life,” Sarafan explains.
Give Me a Break
Another option is respite care. This can give you a short-term break, while your loved one receives appropriate care in a safe and supervised environment. “Using respite services can support and strengthen your ability to be a caregiver,” according to the Alzheimer’s Association of America.
Family, friends, volunteers or paid caregivers can provide respite care at home, or you might opt for an adult day care or residential facility with professional staff. Day care encompasses planned activities like games, music or art and often includes meals. Some centers provide transportation services.
Residential facilities provide longer term respite care – a few days to a few weeks. It can allow you time for a much-needed vacation, to attend an out of town event or meeting, or to just enjoy some downtime to recharge your batteries. Cost varies, and is usually paid out of pocket.
When evaluating respite facilities, look for one with a memory care unit and whose staff are trained to care for those with Alzheimer’s and dementia, advises Carol Levine, Director of the United Hospital Fund’s Families and Health Care Project. “Make sure the people are really skilled in providing appropriate care.”
Certification and training are key when evaluating home care agencies, says Barbara Glickstein, a New York public health nurse who helps care for her 90-year-old mother. Ask whether caregivers receive continuing education, including behavioral health, and are familiar with handling a range of emotions and situations.
“Those with Alzheimer’s require a different level of care than those without the disease. It’s important that caregivers — whoever they are — understand these differences and how to relate to them,” she says.
6 Questions to Ask an Agency
First, make sure you’re dealing with a reputable organization, then ask:
Who are their community and professional partners?
Are caregivers licensed and is the agency Medicare certified? That means they meet minimum federal standards for patient care and management.
Are their caregivers employees or contractors? Caregivers can almost never be contractors for an agency, says Sarafin, so if that’s their setup, it’s likely they’re cutting corners elsewhere, perhaps on training, support, or quality.
Ask about caregiver training — is dementia-specific training provided? Caregivers should have this skill set as well as the emotional wherewithal to care for somne with Alzheimer’s.
What are the agency’s professional processes – such as quality assurance, continuing education and customer satisfaction?
Will your calls be answered 24/7? You need to know that if issues arise after hours or on the weekend, someone can respond.
Don’t base your decision on cost alone. An agency that’s a dollar an hour less than another may wind up costing more in the long run if you have to miss work because the caregiver doesn’t arrive or have backups in place in case of emergency.
Also make sure you understand exactly what services agency will and won’t provide according to state law. While families can provide any care for a family member, professionals must abide by state law.
And of course, get a list of references and find out how they conduct their screening and background checks.
“Be diligent and vigilant just like you would be with any other health care decision,” says Sarafan. Don’t get locked into a long-term contract, she advises. If you’re not happy with the provider you could be on the hook for thousands of dollars.
There are numerous community-based services and programs that can provide assistance with finding an agency or service, respite care, or just give you a needed break from caregiving duties.
Medicare.gov – provides information about Medicare-certified agencies in your geographic area, including Home Health Compare, which allows you to compare the home health care agencies in your area. Call 800-MEDICARE for more information.
Eldercare Locator can help you find the services you need in your area by calling 1-800-677-1116.
As we continue to celebrate Grandparent’s Day, we’re tackling an issue that impacts many grandparents and their caregivers: Alzheimer’s Disease.
Taking care of yourself while you’re caring for someone else isn’t optional. In fact, 40% of ALZ caregivers die before the person they’re taking care of. The best way to care for your loved one is by caring for yourself, too. Here are our top tips for how to continue caregiving without paying the ultimate price.
“As Dad remained quite mobile, one of my favourite activities to do with him was to go for walks together. Another common pastime was reading out loud to him, something he did for my sisters and me as a former University English Professor.” – Rick L.
“Traveling the world on Google Earth.” – Alicia W.
“Making short videos on my computer and singing or just saying ‘hi’ to people.” – Katie S.
“Soft sing alongs worked beautifully for my mother. She engaged and tried to sing. I even brought the Episcopal church hymnal with me once and flipped through the pages to remind me of her favorite hymns.” – Molly D.
“Something he did as a young boy – marbles, checkers, or cards.” – Kim R.
“Sorting – nuts, bolts, coins.” – Sandra O.
“Assembling something.” – Rhonda M.
“Mom likes current events or crossword puzzles.” – Julie H.
“With the help of a home aide, my father-in-law and I worked for months to create a rug for his great grandaughter Ava. When we brought out the materials, he became fully aware of his surroundings and why he was making it.” – Bobbi C.
“When my father-in-law’s memory was faltering, we’d take him for a drive in the country to see a wind farm. This unusual ‘field trip’ garnered Dad’s attention. ‘There are so many windmills!’ he’d exclaim. “And they’re all so big!” – Harriet H.
Did you know that spoken words only account for 7% of communication? The remaining 93% of communication is conveyed through body language, vocal tone and pitch. If you are surprised by this information you are in good company – most people don’t realize this. Human brains process communication in milliseconds so we aren’t aware this process is even occurring.
Communication style becomes especially important when there is someone in your life that is living with dementia. Communication often becomes one of the most challenging aspects because we try to use the same communication technique with someone living with dementia as for those who don’t have this brain impairment. Understanding a few basic elements of communication can make a positive difference.
Remember that 93% of communication is non-verbal. Use this dynamic effectively to help the person with dementia be better able to process what you are saying. Here are some tips:
Stand at eye level in front of them so they benefit from seeing your body language and facial expressions. People likely don’t realize how often they speak behind or besides someone. If that person has dementia the lack of visual cues hampers their ability to process information.
Slow your speech down because their brains process information more slowly.
Phone calls are especially challenging for someone who has dementia because the only communication cues they receive are words (7%) and vocal tone and pitch (38%). Limit phone conversations to a minute or so and say something positive like, “I was thinking of you and just wanted to call and say hello.” The expectation of being able to have a meaningful two-way phone conversation is not realistic.
Consider using Skype or another one of the visual software methods on a computer, tablet or iPad to communicate. This provides the opportunity to see the person speaking, which greatly enhances their ability to process what is being communicated.
Take time to listen to the person’s response giving them enough time to respond. Don’t interrupt them while they are speaking. If they are especially stuck on a word, kindly supply the word and see how the individual reacts. If they don’t appear to want the help, let them manage on their own.
Ask one question at a time and ask questions that require simple or yes or no answers. For instance, “Do you want scrambled or fried eggs this morning?” instead of “How would you like your eggs this morning?”
Where possible, give visual cues about what you are communicating about.
Use touch as a way to communicate. Touch is a powerful communicator. When used positively touch can convey caring and warm feelings. It only takes a moment for a light touch or pat on the shoulder, a kiss on top of the head of someone sitting, or a gentle hand squeeze.
Smile often, not only because it conveys warmth and caring, but also because smiling can make you feel better too.
Spend time together in companionable silence. It can be exhausting for someone living with dementia to continually process communication. Sit across from the person or at 90 degrees so they can easily see you.
Lastly, the most important action you can take is to be aware of how you are communicating and whether it is having desirable results such as smiles, nodding, and looking contented, happy, or relaxed. If not, review how you were communicating to see if you should adjust an aspect of your technique.
34 % of adults in the United Kingdom fear getting dementia, a neurological disorder that included loss of memory and speech, later in life, according to a study done by The Live-in Homecare Information Hub. However, 52% of adults are more comfortable talking to others around them about their fear and how to manage it. Dementia has become commonplace disorder for the elderly, with one well-known form being Alzheimer’s.
According to findings done by the organization No Place Like Home, loneliness can be a significant contributing factor for people developing Alzheimer’s with those who reported being lonely developing a high incidences of the disease up to twice those who do not consider themselves lonely. In the UK, the total number of people with dementia has been predicted to rise to 940,110 by 2021 and 1,735,087 by 2051 – an increase of 38% over the next 15 years. This also indicates that by the year 2037, the number of caretakers – paid and unpaid – will have to rise to up to nine million (or more) to keep pace with the rising number those in need of elder care.
Due to this, more needs to be done to ensure that people dealing with this debilitating disease, as well as others dealing with similar ailments, are properly cared for. 97 % of adults report that they do not want to end up in a nursing facility given the negative reports regarding them. In addition, 78 % are worried that they would be resentful to a family member who needed additional care. 65% worried that the situation could cause ‘divide our family or cause relationship problems.’
Some proposed solutions include live-in homecare where a nurse or live-in caregiver could provide round-the-clock care for a dementia or elderly patient. Many would be specifically trained to cope with particular conditions like dementia, Parkinson’s, stroke, MS or palliative care. This could reduce the risk of loneliness for the patient as well as alleviate the bed shortage that the current hospital system faces.