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.
Yet Americans shouldn’t expect dementia rates to continue falling indefinitely, Haaga said.
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.”
KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation, and coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.
By Liz Szabo
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.
KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.
By Rachel Bluth
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.
Find her on Twitter:@Almacausey
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.
KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.
By Rachel Bluth
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
Excerpt from Unexpected Gifts: My Journey with My Father’s Dementia, the following is the preface of the book.
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.
Thank you, Dad.
Eve Soldinger is an Acupuncturist and Medical Qigong Therapist based in Washington, DC. Her bestselling memoir, Unexpected Gifts: My Journey with My Father’s Dementia is accompanying other caregivers during this challenging, and sometimes beautiful, journey.
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.
Follow Kate on Twitter: @dementiaelevate
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.
- National Association for Home Care and Hospice: 202-547-7424
- Visiting Nurse Associations of America: 617-737-3200
- National Adult Day Services Association, Inc.: 866-890-7357
- National Respite Coalition (NRC): 703-256-9578
- National Respite Locator Service: 800-473-1727, ext. 222
- Lotsa Helping Hands brings together caregivers and volunteers through online communities and help caregivers in neighborhoods worldwide.
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.
Need specific advice or have something to share? Connect on our forums.
Tips & Information
Harriet tackles anticipatory grief
Phyllis shares the Uber-Caregivers top 5 tips for avoiding chaos
Barbara shares this tip for responding to Alzheimer’s behavior
Michael investigates the cause of Alzheimer’s disease
Michelle talks about sundowning and how to manage it
Rick discusses the best places to find caregiving resources
Shoshanna provides tips on how to get ready to care for someone with memory impairment
Carol shares home safety tips
ALZ Live has guides for navigating the healthcare system in the US and Canada. They have much more information available on their site.
David found voice reminders helpful for managing his father’s medications
Aging Care has a free guide to being an ALZ caregiver
StoryCorps has a guide for creating your own oral histories. You can listen to some of our favorites from their collection on memory loss.
What it’s like
Phil shares the story of caring for his mother, who has Alzheimer’s disease
Em tells Allie about FTD
Art shares the story of caring for his father, who had dementia
Julie talks about Alzheimer’s caregiving and isolation
Vince shows us what a day in the life of an ALZ family is like in this fantastic video
Brittany shares how caring for her grandparents changed how she views marriage
Blake ruminates on Ed Sheeran’s song about ALZ
Theresa shares a poem about ALZ
Rick lists 7 things not to say to an ALZ caregiver
Yuko likes to relieve caregiving stress by drawing
Vicki talks about overcoming caregiver guilt
Phyllis explores the true cost of dementia
Heather discusses her fear that her mother will get ALZ
What are some activities for dementia and Alzheimer’s patients that have worked for you?
“Teepa Snow.” – Julie R.
“Sorting – nuts, bolts, coins.” – Sandra O.
Photo credit of Teepa Snow via Alzlive
Scotland’s Dementia Carer Voices conducted a survey in 2013 and 2014 to capture the experiences of people caring for someone with dementia. Here’s what I found the most interesting:
79% of carers said other people didn’t understand what they’re going through. That’s why online communities of caregivers are so important.
The support from other carers has been my lifeline
Not only are online communities critical for bringing caregivers together to be able to talk freely, nearly 40% of carers said they found critical information from caregiver support groups.
As of yet, the only real support I get is from strangers who I find online who are going through the same thing that I am
Carers spoke of being exhausted, both mentally and physically, feeling isolated, feeling guilty, and having trouble dealing with feelings of guilt and loss.
Are you becoming a dementia carer? The advice experienced caregivers give is:
Join a support group, be good to yourself, and get outside help immediately so that your loved one will get used to it from the start
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.
There’s big news for family caregivers in the US – a congressional caucus has been formed to focus on informal caregiver issues. Singapore is ahead of the game, as they’re contemplating providing direct support to family caregivers. Taiwan is loosening their rules for professional caregivers. There’s a lot of potential for improvement in care.
If you’re struggling to balance family caregiving needs and a career, maybe it’s time to share this article with your boss.
Professional caregiving in the news
Here’s a heartwarming story – a caree saved the life of her caregiver. Professional caregivers around the US are fighting to raise the minimum wage to $15/hr. While many family caregivers argue that they can’t afford to pay that, professional caregivers ask how they’re expected to support their own families on less.
Recovering from trauma and finding joy
There’s more evidence that journaling about a traumatic or stressful experience helps you move past it. Other things that can make you happier – video games and these 7 apps. You can also challenge yourself to stop complaining and train yourself to focus on the positive.
Dealing with dementia
Have you ever wondered what it’s like to have Alzheimer’s? Researchers are increasingly encouraging dementia caregivers to keep troublesome dementia behaviors under control without medication. Do you think medication can really be eliminated? We certainly know dementia can cause very problematic behavior. Do you agree with Marie’s list of the 3 most difficult situations Alzheimer’s caregivers face?
Who gets to decide?
The courts have ruled that Canadians have the right to assisted suicide. The Canadian courts also think that a woman with Alzheimer’s is making a conscious decision by continuing to eat.
Healthcare odds and ends
Can’t keep track of the Obamacare court case? The New York Times catches you up.
Those of us who appreciate having antibiotics will be glad to hear that McDonalds will no longer be buying or serving chickens fed antibiotics with no medical purpose. Especially since the things we do to avoid germs aren’t very effective.
Heroin deaths have just about tripled since 2010 – and nearly 80% of heroin users started with prescription opiates.
Debating starting an exercise program? A study conducted with twins – one of whom exercised, one who didn’t – supports the idea that there are myriad health benefits.
Wondering why your foot keeps falling asleep? Here’s the scoop.
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.
Today I realized one of the worst parts about watching my Mom decline with this dreadful disease, Alzheimer’s or dementia. Its not that we must care for her, its not that she doesn’t know where she is, but worse than all of that, its that it has robbed me of my memories too in a different sort of way.
My mother used to be a vital, energetic, witty and fun person. Its been over 5 years now of watching her decline, changing diapers, feeding her, lifting her up, putting her to bed and sitting by her side while she mumbles incoherently and asks to go home or calls for people who have been dead over 50 years. As hard as I try, I simply cannot remember how she used to be anymore. I see pictures and old movies of her and know that is her, or was her, but in my mind, I can no longer hear her voice and recall how she used to be. Its like Alzheimer’s has hit me too.
My father died recently and it was very quick and sudden. I still hear his voice and feel his energy when I think of him. I guess its because that is who he was right up to the end. But Mom, she hasn’t been Mom for a long time now and when I think of her I can only recall who she is now.
Don’t get me wrong, I still see the images of the old her, but my memory can no longer recall or feel her energy and heart in my mind; the way she used to sound and how she used to be. It makes me sad because then I realize, I lost her a long time ago.
Why isn’t it easier for people to die in this country? My mom said a million times how she never wanted to live this way and yet here we are her living the live she most dreaded and feared. Its cruel and torturing. It robs them and it robs us and it is all for nothing. The only benefactors of this disease are the medical communities and the pharmaceutical companies. People need to be able to have a choice, before it is too late to make one.
I hate Alzheimer’s for what it has taken from Mom and from me and from all my family.
Focusing on healing one condition is tough enough, but two? This can feel about as hard and confusing to the caregiver as it is to the patient.
For example, dealing with cancer combined with dementia can present a host of conflicts, complications and questions. Unfortunately for the patient, recent research by the Moffitt Cancer Center in Tampa, FL indicates a dramatic difference in the life expectancy between patients with cancer alone and those with cancer combined with dementia. People with both cancer and dementia die much sooner than those with cancer alone. The accounts for this are unclear and speculative. One explanation is that there’s often an uncertainty with diagnosing and treating dementia in the first place and symptoms of dementia often mask other ailments. It could also be that people with dementia simply aren’t given cancer screenings as often they could and therefore the cancer goes undetected or untreated altogether. Somehow, the dementia can enable medical professionals to miss the cancer.
For the caregiver, this presents added challenges. Under these circumstances, care includes becoming an advocate for the patient by staying on top of doctors and making sure check-ups are handled regularly and thoroughly and that proper treatments are administered. Since the patient may not be able to speak for themselves or make their symptoms clearly known, caregivers are on heightened alert to spot signs of trouble and to speak on behalf of their loved ones. Of course, this leads to added stress for the caregiver. What to do?
Author and caregiver advocate, Linda Burhans laments that there’s not much out there by way of information on how to deal with cancer coupled with dementia. So she suggests that caregivers seek out and get involved in a support group, either online or in person. The idea of having a sounding board or just knowing that you’re not alone can be invaluable enough. But researchers from the University of Michigan School of Nursing found there’s more to it. Their 2012 study revealed that caregivers are more likely to have reduced stress, improved sleep, better immune function and overall physical health by being involved in an established caregiver support organization. To a larger extent, so-called “caregiver interventions” can also arm the caregiver with valuable coping skills, knowledge and a better quality of life, overall. This kind of empowerment likely results in better care of the patient and ultimately in their improved physical and mental health.
These findings are supported by the NYU Langone Medical Center, which found that support groups reduce a caregiver’s depression level, while at the same time increase their ability to react effectively to problems. Social groups, where one could gain information, learn how to recognize warning signs and manage expectations, talk to doctors, practice nursing skills, learn new ways of handling tasks, and receive feedback are most meaningful. It improves a caregiver’s self-esteem and can also help during time of bereavement. The support a caregiver receives, in effect, makes them more resilient.
Researchers agree that more standards of care protocol need to be implemented when it comes to dealing with dementia paired with cancer. As medicine advances to where we keep getting older and older, it stands to reason that more of the elderly will unfortunately suffer through both cancer and dementia together. If there’s a lack of understanding of how to deal with this now, we can hope that caregivers will have a blueprint in the future. For now, find help and strength in the form of support groups, spiritual wellness groups, friends and online resources that deal with one condition or the other (such as The American Cancer Society and Alzheimer’s Foundation of America) and stay informed on the latest treatments available. It is within every person’s right and dignity to seek and receive the best care possible. Every patient deserves it. And so do you.
For Alzheimer’s, Detection Advances Outpace Treatment Options, New York Times
Resources for Seniors Suffering from Dementia and Cancer, eCareDiary.com
Behavioral and Psychosocial Interventions for Family Caregivers, American Journal of Nursing
Psychosocial Care for Family Caregivers of Patients With Cancer, Journal of Clinical Oncology
Palliative care in dementia: issues and evidence, Advances in Psychiatric Treatment
More families are relying on caregivers to care for a sick relative or friend. This could be a professional certified caregiver or simply another family member taking on the responsibility. However, the caregiver system needs an overhaul to support the growing number of seniors and those with dementia in the coming years.
With a system teetering on the brink of extinction within an industry expecting explosive growth, what can businesses and the public do to recruit and retain certified caregivers?
The Dangers Facing the Caregiver System
Qualified nursing homes, assisted living facilities and other caregiving businesses are competing with one another to find and keep new caregivers. Due to low pay and inconsistent hours, caregiving is facing a high turnover. With a profession that relies on long-term care, many certified caregivers move from one facility to the next for better quality conditions or pay.
It’s estimated that one in five people in the United States will be age 65 or over by the year 2030. This brings the issue of the caregiving crisis into focus as family members take on the unpaid responsibility of caring for sick relatives as well as caring for their own children. Aging parents unable to care for themselves may rely on their adult children for care, especially daughters.
JAMA Neurology points out that more women tend to assume the caregiver role compared to men. This can leave the female head of household having to cut back from a full time position to part time while caregiving.
If the family member suffers from dementia, which as many as 8.5 million of Americans will by 2030, the stress of giving round-the-clock care may be too much without an additional caregiver.
Many state Medicaid programs continue to offer the same flat rate to caregivers that has not changed for years, leaving caregivers looking for better-paying jobs. In some states, the unions that support caregivers are demanding dues from the Medicaid reimbursement, leaving even less in the caregiver’s pocket.
How Caregiver Employers Can Help
Although most caregiving facilities have their hands tied when it comes to raises, employers should consider offering their certified caregiving employees bonuses and/or more paid days off. Some nursing home owners provide their caregiving staff with special lunches or promise not to cut their hours due to the census.
Nursing home owners and caregiving business managers should stress the importance of long-term care with prospective caregivers. Dementia patients require the same caregiver every day as seeing a familiar face will make them feel safe and secure in their environment.
How the Community Can Help
High schools can also get involved in saving the caregiver system by promoting certified caregiving as a profession. Caregiving as a trade now involves training courses consisting of more than 100 hours of training as well as a standardized test in some states. In Arizona, students seeking certification need to train for 104 hours before testing.
The State of Washington requires 75 hours of training before a caregiver can work for a licensed agency, and those seeking the Certified Nursing Assistant (CNA) will need 85 hours. New Jersey requires 76 hours of training, and Nebraska wants 16 out of the mandatory 75 training hours supervised.
Employers of individuals faced with caring for a sick family member or friend should consider offering paid leave to the caregiver. Although it is only a temporary solution, given enough time away, the caregiver may be able to make long-term care plans. One company, Deloitte LLP, has taken this approach, offering employees 16 weeks of paid leave to care for a loved one.
In states with stagnant Medicaid reimbursement rates for caregivers, the public can speak with their Representatives about the possibility of increases.
In Illinois, a bill raising the pay wage from $12 an hour to $15 an hour for caregivers made its rounds through the Senate and the House. If more individuals bring this concern to their state’s legislation, caregivers may receive the much-needed increased pay rate and caregiving agencies may retain their best employees.
Image by Pixabay
As Alzheimer’s progresses, verbal communication becomes more and more difficult. Alzheimer’s has a devastating effect on the brain’s ability to recognize and process verbal language. Language impairment is considered one of the “primary components” of cognitive decline in those coping with Alzheimer’s.
For those of us who provide Alzheimer’s care, whether as family members or professional caregivers, this makes communication difficult, particularly in the mid-to-late stages of Alzheimer’s. But “difficult” is not “impossible.” In fact, there are non-verbal ways we can use to communicate clearly with Alzheimer’s sufferers, commonly known as “body language.”
But there’s a catch here: few of us are truly fluent in body language. When we’re growing up, we spend years learning how to read, speak, and write — but this is all verbal language. Most of us didn’t get class credit for learning open posture or how to maintain proper eye contact.
So consider this post a crash course in why body language is more powerful than you might think, how caregivers can become more fluent in non-verbal language, and what you can (and can’t) say by communicating this way.
Body Language Essential to Alzheimer’s Care
Human beings learn how to read body language well before we ever speak our first word. And for people who are coping with Alzheimer’s, their ability to understand body language lasts much longer than their ability to understand speech and written language.
When verbal language fails those suffering from dementia, they turn to other ways of making sense of their surroundings. Consciously or unconsciously, they start to rely on other signals to interpret the world and the people they interact with. If a conversation can’t be followed, other signals (like crossed arms, anxious tapping, or laughter) become more important than what’s being said. If someone’s shouting, it’s not what they’re shouting, but that they’re shouting that matters.
As those with Alzheimer’s come to rely on non-verbal communication more and more, even small gestures — a slight change in posture, a quiet sigh — can become meaningful and magnified. For caregivers, it’s important that we understand what our body language is saying to those in our care and how we can harness the power of body language to comfort and communicate with care recipients.
Body Language 101 for Alzheimer’s Caregivers
Becoming fluent in body language doesn’t happen overnight. Executives and politicians spend years perfecting the ways they communicate non-verbally. But by making a conscious effort to build and hone our non-verbal communication skills, it’s possible for caregivers to communicate more clearly and effectively with those in our care.
Here are some of the key ways that you can improve your body language fluency as an Alzheimer’s care provider:
- Eye Contact. Maintain eye contact to convey that you’re paying attention to a person coping with Alzheimer’s. Don’t avoid eye contact during conversation. Doing so conveys dismissiveness. Eye contact should be made at their eye level or below — not above, which gives the impression of dominance.
- Facial Expressions. Always be conscious of what your facial expressions are saying. In day-to-day conversation, it’s easy to say one thing and have a raised eyebrow or a twist of the mouth say another. When these expressions are the only thing the recipient can understand, the words your using aren’t what matter.
- Open Posture. Keeping an open posture is a key part of body language. An open posture — facing the person, chest forward, no crossed arms or legs — tells a person that you’re focused on them, open to their concerns, and engaged with them emotionally.
- Avoid Tics and Distractions. Small tics and distractions can show that you’re agitated, angry, or bored when spending time with a person. Tapping your armrest, bouncing your knee, checking your phone, or multi-tasking can communicate that you’re not invested in the person.
- Use Gestures. Using your hands and objects around you to communicate simple messages can do wonders when caring for someone with Alzheimer’s. However, it’s important not to overuse gestures, which can agitate or confuse those with Alzheimer’s.
Using Body Language to Communicate
Body language is a highly effective tool for communication, but it’s a limited one. So it’s important to know what you can and can’t communicate by using body language.
For instance, complex thoughts and directions require verbal language. There is nothing your facial expression or posture can do to tell someone with Alzheimer’s that it’s time to go to the bathroom or that someone has come to visit.
What body language can communicate, however, is much more important. Your body language conveys care, it conveys trust, and it conveys love. For a person with Alzheimer’s, these messages are extremely powerful. They make a person feel valuable, cared for, and comfortable.
Someone with Alzheimer’s might not be able to understand the words “I’m here for you,” or “You can trust me,” or “I love you.” But body language offers a way to make these messages clear. For those of us who care for those with Alzheimer’s, it’s an invaluable tool.
Visiting Angels is America’s choice in home care. Since 1998, Visiting Angels locations across the country have been helping elderly and disabled individuals by providing care and support in the comfort of home. In addition to senior home care and adult care, Visiting Angels provides dementia care and Alzheimer’s care for individuals suffering from memory disorders. There are now more than five hundred Visiting Angels locations nationwide.
By Anna Gorman
Just before dusk on an evening in early March, Mimi Rosenkrance set to work on her spacious cattle ranch to vaccinate a calf. But the mother cow quickly decided that just wasn’t going to happen. She charged, all 1,000 pounds of her, knocking Rosenkrance over and repeatedly stomping on her. “That cow was trying to push me to China,” Rosenkrance recalls.
Dizzy and nauseated, with bruises spreading on both her legs and around her eye, Rosenkrance, 58, nearly passed out. Her son called 911 and an ambulance staffed by volunteers drove her to Lost Rivers Medical Center, a tiny, brick hospital nestled on the snowy hills above this remote town in central Idaho.
Lost Rivers has only one full-time doctor and its emergency room has just three beds — not much bigger than a summer camp infirmary. But here’s what happened to Rosenkrance in the first 90 minutes after she showed up: She got a CT scan to check for a brain injury, X-rays to look for broken bones, an IV to replenish her fluids and her ear sewn back together. The next morning, although the hospital has no pharmacist, she got a prescription for painkillers filled through a remote prescription service. It was the kind of full-service medical treatment that might be expected of a hospital in a much larger town.
Not so long ago, providing such high-level care seemed impossible at Lost Rivers. In fact, it looked as if there wouldn’t be a Lost Rivers at all. The 14-bed hospital serves all of Butte County, whose population of 2,501 (down from 2,893 in 2000) is spread over a territory half the size of Connecticut. Arco, the county’s largest town, has seen its population drop 16 percent since 2000, from 1,026 to 857 last year. “Bears outnumber people out here,” is how hospital CEO Brad Huerta puts it.
The medical center nearly shut its doors in 2013 due in large part to the declining population of the area it serves — almost becoming another statistic, another hospital to vanish from rural America. But then the hospital got a dramatic reboot with new management, led by Huerta, who secured financing to help pay for more advanced technology, upgraded facilities and expanded services. He also brought in more rotating specialists, started using telemedicine to connect the hospital to experts elsewhere and is now planning to open a surgery center and a long-term care rehabilitation wing. If Lost Rivers had closed, the alternative would have been hospitals in Idaho Falls or Pocatello, each more than an hour away across high-altitude prairie. Instead, “I don’t have to go across the desert for hardly anything,” said Rosenkrance, resting at the hospital the morning after the cow attack.
Rural hospitals are facing one of the great slow-moving crises in American health care. Across the U.S., they’ve been closing at a rate of about one per month since 2010 — a total of 78, or about 6 percent. About 14 percent of the U.S. population lives in rural counties, a proportion that has dropped as the number of urban dwellers grows. Declining populations mean a smaller base of patients and less revenue. And the hospitals are caught in a squeeze: Because many patients in the countryside are older and sicker, they require more intensive and often expensive care.
Faced with these dramatic economic and demographic pressures, however, some hospitals are surviving — even thriving — by taking advantage of some of the most cutting-edge trends in health care. They are experimenting with telemedicine, using remote monitors to track patients and purchasing high-tech equipment to perform scans and other types of exams. And because many face physician shortages, they are partnering with universities and increasingly relying on nurse practitioners, paramedics and others to deliver care. In parts of rural Oregon and Washington, veterans can get counseling through a tele-mental health program. Physicians in Iowa and North Dakota have access to virtual emergency room support.
At Lost Rivers — a dramatic rural health turnaround story — Huerta’s strategy was to use technology and innovation to offer the kind of high-quality medical care that would keep patients like Rosenkrance coming back. “Necessity is the mother of invention,” Huerta said. “Small hospitals like mine are always going to be under the gun. You have to get really creative.”
In the decades to come, America’s heartland and hinterlands will continue to be home to the people who run the country’s farms, forests and fisheries, and its wilder regions will continue to draw visitors who crave nature and recreation. And those people will need medical care. As a result, rural health researchers say hospitals like Lost Rivers are important test cases. They show that, despite daunting obstacles, rural America need not be left behind when it comes to health care. In fact, because they are being forced to innovate faster than their urban counterparts, they can provide a glimpse into the future of medicine.
“Being in a rural place does not preclude high-quality medicine,” said Tom Ricketts, senior policy fellow at the Sheps Center for Health Services Research at the University of North Carolina, Chapel Hill. “They are under a lot of pressure, but there are rural places you can point to as places you would say, ‘This is how things ought to be done.’”
Where Folks Wear ‘Multiple Hats’
It’s a Tuesday afternoon at Tara Parsons’ flower shop. She cleans up as she waits for customers — or for an emergency call. Parsons, a fourth-generation Arco resident, is not just the town florist; she is also the county coroner, a sheriff’s dispatcher and a volunteer emergency medical technician. This afternoon, she is on ambulance duty.
“We all wear multiple hats out here,” she said.
The town of Arco was founded in the 1870s as a junction for horse-drawn stagecoaches. Its quirky claim to fame is that in 1955, it became the first town in the world to be powered by nuclear energy, a credit to the Idaho National Laboratory down the road toward Idaho Falls. Every summer, to celebrate its history, the town puts on a celebration that features a rodeo and a softball tournament.
The streets are lined with shuttered and boarded-up storefronts, some with their signs still on display: the Galloping Goose, the Sawtooth Club. Residents talk nostalgically about the town’s heyday, when there were banks, a bowling alley and a movie theater, back when residents drove to Idaho Falls only twice a year, to get school supplies and do Christmas shopping.
Now, most of the businesses are gone. The town still has a lumber shop, a hardware store and a few auto garages. There’s also a bar, a gym and a dollar store. And around the corner there’s the local diner — Pickle’s Place — where people come day and night for fried pickles and biscuits and gravy.
Like so many other residents, Butte County clerk Shelly Shaffer has a personal connection to the hospital: Her mom worked there, her sister was born there, and she used to take her children there. Lost Rivers Medical Center — which also has two outpatient clinics — is one of the town’s biggest employers.
“It would be devastating if we didn’t have our hospital,” she said.
That was the direction they were headed. When Huerta, the CEO, arrived four years ago, he found the nearly 60-year-old hospital in disarray — dilapidated facilities, fearful employees, reluctant patients and a financial mess left behind by the former CEO. The hospital’s bank account held just $7,000 and morale was at an all-time low. “We were the poster child for everything that was wrong with rural health care,” he said. “It had been a slow, steady decline from neglect.”
Shannon Gamett, 28, a nurse at Lost Rivers, said paydays were nerve-wracking: “We would run as fast as we could to the bank to cash [a paycheck], or it might not clear.”
After borrowing money to pay his employees, Huerta campaigned to pass a $5.5 million bond for Lost Rivers. He asked locals if it was worth $5 a month — one six-pack of beer or two movie rentals — to keep the hospital running. They answered “yes” at the polls, and the hospital emerged from bankruptcy. Next, Huerta set his sights on overhauling the badly outmoded facilities. One of his top priorities was the laboratory, which he said looked like a high school science classroom from the 1950s.
He instituted a new philosophy: If it doesn’t happen at a “real” hospital, it doesn’t happen at Lost Rivers. That meant ending some local practices, nixing little things like letting staff members wear scrubs of any color they fancied, and big things, like allowing people to bring their horses in for X-rays. “I said, ‘I have no problem doing this, but you tell me what insurance the horse has,’” he recalled. “The practice stopped immediately.”
To bring in more revenue, he applied for grants and got the hospital a trauma center designation (the first level IV trauma center in Idaho) so it could get paid more for the care it was already providing. He saved money by inviting the town’s residents to help renovate clinic exam rooms and by moving the medical records to a cloud-based system that didn’t require more information technology employees.
Despite Huerta’s efforts, however, the long-term success of Lost Rivers is not guaranteed. “If you don’t have enough people to support a clinic or a hospital, it has no economic reason to be there,” said Ricketts, the Sheps Center fellow. “It just disappears.”
Arco and Butte County officials hope the local economy will get a boost from a planned expansion of Idaho National Laboratory, which conducts nuclear energy testing and research. Residents also are mounting a campaign to get the Craters of the Moon, a national monument in Butte County, designated as a national park.
“It would literally put us on the map,” county clerk Shaffer said.
But even if that happens, Huerta knows he can’t expect a big influx of new residents. Rural parts of the United States saw an absolute decline in population following the 2008 financial crisis, a trend that has since stabilized. But there is little or no growth. So Huerta has to concentrate on keeping the patients he has — and giving them a reason to keep coming. And it’s working: The hospital is now making a small profit and has some reserves on hand for future projects.
“If you are not offering the services, people are going to go somewhere else,” Huerta said. “And as medicine advances and reimbursement is still pegged to volume, you have to find ways to keep that existing population here.”
One big challenge for Lost Rivers and many other rural hospitals is that their patients tend to be older — and thus sicker and costlier to treat. People 65 and older account for about 18 percent of the rural population, compared with 12 percent in urban areas, according to the National Rural Health Association. An older patient base can strain hospitals because Medicare, the public insurance program for the elderly, doesn’t pay hospitals as well as private insurance does. Elderly patients also may need more intense care than small hospitals can provide.
Rural hospitals have a higher percentage of patients on Medicaid, the public insurance for poor people, which pays notoriously low rates to providers.
Some seniors move to Arco precisely because there is a hospital in town. But for others, what Lost Rivers offers simply isn’t enough.
Residents Ray Westfall, 82, and his wife, Winona, recently put their house on the market after deciding it was time to move to Utah, closer to family and more specialized health care. Westfall has neuropathy in his legs, which causes numbness most of the time. He gets around with a walker. Winona has dementia.
“We can get some care here at the local hospital, but mostly we have to travel to Idaho Falls,” he said.
Westfall is a regular at Parsons’ flower shop. On a recent Tuesday, he bought a bouquet for his wife — carnations, her favorite.
Parsons said many of the emergency calls she responds to are for older folks who’ve suffered strokes, fallen at home or are struggling to breathe. One 99-year-old woman she took to the hospital on this morning had fallen in her living room.
Parsons said she has known many of her patients for years, through her parents or grandparents. As they grow old and get sick, she picks them up in the ambulance and drives them to Lost Rivers.
“And before long, I’m doing their funeral flowers,” she said.
Telemedicine: A New Frontier
At first the Bengal Pharmacy, on the bottom floor of Lost Rivers Medical Center, looks like any other pharmacy, with racks of over-the-counter cold medications, bandages, reading glasses and medical supplies. Shelves of prescription medications sit behind the counter. But it has no pharmacist on site; instead, technicians and students from Idaho State University in Pocatello shuffle about, filling prescriptions.
Their supervisor is a pharmacist at the university, about 80 miles away, who checks their work remotely. Patients who want to talk to him go to a small private room with a phone and video link. The pharmacy is named for the university’s mascot.
For rural hospitals, telehealth can make otherwise faraway services accessible to people where they live, said Keith Mueller, director of the Center for Rural Health Policy Analysis at the University of Iowa. That can be critical, especially during the winter when snowstorms sometimes cut off access to rural towns.
“We can, in effect, bring the provider to the community without physically doing so,” Mueller said. “Even in urban areas, people want more and more convenience in how we receive our services. Here we are talking more about necessity.”
At Lost Rivers, patients can have telemedicine appointments with a psychiatrist. And doctors can get virtual guidance from specialists in trauma, emergency care and burns. But new technologies sometimes take getting used to. “When you lose that hometown community pharmacist, that human touch, when you turn it over to computers, that’s a concept that people have difficulty with,” said Martha Danz, who sits on the hospital’s board.
Leon Coon, 83, said the concept is a bit foreign to him. “I just don’t do that stuff,” said Coon, who works loading hay. “I’m a little old-fashioned.” Sipping coffee at the truck stop early on a Wednesday morning, Coon said he doesn’t even text, so he’s a bit wary of technology that puts him in touch with a pharmacist all the way in Pocatello. But then again, he said he doesn’t rely on the medical system much at all.
“Anytime you go to the doctor, it’s just like a mechanic,” he said. “They’re going to find something wrong. I feel good most of the time, so I just don’t go.”
Shane Rosenkrance, whose wife got trampled by the cow, said he remembers when there were five community drugstores in the valley. Now, he is grateful to have the one pharmacy — even if the pharmacist isn’t actually behind the counter. “To have health care, you have to have a pharmacy,” he said. “And through technology, they are able to do it.”
Telemedicine is hardly a panacea. The projects often depend on grants or government awards, because rural hospitals’ operating margins are slim. And some of the telemedicine and remote monitoring technologies require high-speed internet, which isn’t always reliable or cost-effective in rural areas.
“You can’t do home monitoring everywhere,” said Sally Buck, CEO of the National Rural Health Resource Center. “You can’t do telehealth everywhere.”
Telemedicine also may raise more questions than it answers for some patients, and even create a need for in-person follow-ups. Orie Browne, the medical director for Lost Rivers, said he tries to keep patients from having to travel. But if someone needs more advanced medical care — or a specialist that Lost Rivers doesn’t have — he will refer them to another hospital. The hospital has a helicopter pad, and patients with emergencies that can’t be handled at Lost Rivers can either be flown out by helicopter or transferred by ambulance.
“Ego is a dangerous thing,” he said. “If there is anyone who can do a better job, I’m going to get [my patients] there.”
Nevertheless, Huerta said, he hopes to expand telemedicine, including such services as oncology. Huerta recognizes that Lost Rivers doesn’t have the staff or the expertise to do it all. He believes the hospital should try to do more when it can, and refer out the rest.
“We aren’t trying to do brain surgery,” he said. “We’re not doing Level I trauma. But colonoscopies? Tele-oncology? People in rural areas get cancer too, and it’s demanding driving hours back from a chemotherapy session.”
Rounding Up Doctors
Browne started work at Lost Rivers one recent day in March, then drove 45 minutes to one of its outpatient clinics in Mackay, 26 miles away. One of his first patients was Elizabeth Galasso, 59, who was worried because her heart rate was racing.
“I was scared,” Galasso said, speaking with a hoarse voice as she sat hunched on the exam table. “I felt my heart pounding clear down into my stomach.”
An EKG showed her heart was beating normally. Browne told her it was likely a panic attack, but suggested a stress test just to make sure. He told her that her age, her smoking history and anxiety all put her at risk for heart disease.
“But I think things are going to be just fine,” he said. Galasso reached over and hugged him.
Browne, who took over as Lost Rivers’ medical director in 2015, said he was drawn to the outdoor activities in the area — and the variety of rural health care. He used to have a private practice in Idaho Falls and rotated into Lost Rivers for a week at a time. Now, he spends his days bouncing between the emergency room, the hospital inpatient beds and the primary care clinic. “That’s good for a person who gets bored easily,” he said.
Many doctors, however, don’t feel the same pull. Rural hospitals and clinics have long struggled to recruit doctors. In rural areas, there are roughly 13 physicians — of any kind — per 100,000 people, compared with 31 in urban areas, according to the National Rural Health Association.
Doctors and other medical providers can be enticed by programs that repay their school loans if they work in a rural area. Some medical schools have programs designed specifically for students who plan to practice in rural or underserved communities. Another way to make treatment more accessible in rural areas is to expand the responsibilities of nurse practitioners, physician assistants and even paramedics.
Lost Rivers relies on nurse practitioners and physician assistants to provide care for patients in the clinics and the hospital. In addition to Browne, the medical center has four part-time primary care physicians, some who live hours away and come in once a week. Various specialists, including a cardiologist and an orthopedist, also rotate into the medical center’s outpatient clinics about once a month. And an MRI machine gets driven to the hospital once a week.
Tim Tomlinson, a podiatrist who lives in Twin Falls and drives 100 miles to Arco once a week, spent a recent morning seeing a lineup of patients. One was a man who had to have a toe amputated after a horse stepped on his foot, another a diabetic who needed a skin graft checked on his foot.
Tomlinson said he’s gotten paid late before, and he has seen the hospital nearly shut down more than once. But he keeps coming because he has developed a practice — and he thinks its important patients have access to specialty care. Lost Rivers isn’t unique in its difficulties, he noted. “All those small towns are struggling as young people move out, leaving mostly old people,” he said. “That puts a drain on the hospitals.”
Patients are living longer with chronic diseases now, so the demand for elderly care is only going to increase. If not the rural clinics and hospitals, Tomlinson said, “who’s going to deliver it?”
Even with the decline in the nation’s rural population, many people are rooted in rural America because of family or because they like the outdoors and a slower pace of life. One of them is Gene Davies, who has lived in Arco more than 60 years, runs a mechanic shop straight out of a different era. Handwritten signs sit on a wooden chair next to the door: “Gone to Dr.” “Be back tomorrow.” “Hope to be back Monday.”
Davies said he appreciates the remoteness of the region. “I ain’t got no plans to go anywhere else,” he said. “I’ve seen enough of the other world. I don’t want it.”
Rosenkrance, the cattle farmer, said she’s not going anywhere, either. She’s been coming to the hospital since she was a child, when she ran through the halls while her father worked in the pharmacy. Now her husband teases her about having a standing reservation in the emergency room.
Just before discharging Rosenkrance, nurse Celeste Parson told her she needed to rest physically and mentally. The accident had left her with a concussion, a lacerated ear and a black eye. Then Parson issued her the most important instruction: Don’t do anything that could cause another blow to the head.
“We would really like you to rest up for at least a week,” Parson said. “But the doctor knows for you, two or three days is more realistic.”
As she grabbed an ice pack and her purse, Rosenkrance reflected on the importance of Lost Rivers for residents across the whole valley.
“This hospital is a big deal,” she said. “It’s saved a lot of lives.”
KHN’s coverage in California is funded in part by Blue Shield of California Foundation.
Caregivers come from all ages and walks of life. So many of our community members have been part-time, full-time, long-distance, and professional caregivers over the years.
But as Cathy put it so perfectly:
It isn’t a competition regarding when we started caregiving, every version of it is hard.
I asked our community members how old they were when they became a caregiver. Here’s what they had to say.
My mother has been sick all my life. I don’t remember a time in my life I wasn’t helping her with some sort of medical assistance. – Sara
If you consider cooking and cleaning and being emotionally supportive for people who have special needs, technically, 6, but officially 24 is when it was clearly an adult caring for individuals with disabilities. – Eric
I suppose it really began when I was about 5, my younger brother had cystic fibrosis and I was with him till his last breath when he was 15. When I was much older we had my grandma with Alzheimer’s live with us. Then I helped my mom care for my dad who passed away in 2008 with complications of COPD & CHF. Now a caregiver for our adult son age 25 because of a TBI. – Aria
I started helping at 6-7 years old. My father had cancer and we helped mom as much as we could. He was 49. I would pick him up the floor, he’d be so weak from cancer. – Nicole
I became a caregiver at 6 yrs old, started with my 4 yr old brother. I’m still a caregiver but for the mentally challenged now. – Doreen
I was born into it. – Connie
At birth. – Skyler
I was 12 when I started. I had to take care of my mentally ill mother plus my younger sister. I’ve taken care of both my grandparents, great-aunt, both adult sisters, neighbor lady, and now my dad with dementia. I’m tired. – Trudy
I helped take care of my great-grandmother when I was 13. When I was 14 I took care of my mother when she had a nerves breakdown. At 19 I became a Certified Home Health Aid and worked outside of the home. At 23 I gave up that job and moved in with my grandparents to help take care of them. I’m now 34 and still taking care of my elderly grandparents, my mother who has had another breakdown and cant really function on her own, and my father who has physical limitations and failing health. Over the years I have also cared for my uncle and his handicapped wife. I feel like i’m watching my entire family, everyone I care about, slowly slip away a little more each day. My brother died 13 years ago and my best friend died by suicide 3 years ago. My life has been dedicated to taking care of my family. I don’t really have a life out side of that. – Amanda
From 14-36 years old I helped my Mom (and Aunt also who lived with us). Now I help my Dad and I’m 48. – Rebecca
I would work as a babysitter at 14, doing caregiving. At 17 I started helping with my nana. – Cheyenne
My dad got sick with heart disease and related problems when I was 15 and I helped care for him in the 21 years before his death. I moved 150 miles from my hometown to live with my mom and care for her the last few years of her life, I was 54 then. I’m 59 now and I care for my sister. – Joy
My mother was diagnosed with Breast Cancer in 1976 when I was 11 and needed more and more care by 1980 long before cancer was a household word. She died in 1989 just after I graduated from nursing school. – Loretta
The neighbor hired me to take care of the mentally impaired son when I was 15. All my jobs, except for one, had some form of taking care of someone else. I’m 58 now. My husband has asked me to fight the urge to take care of other people and so we can enjoyed our retirement years finally taking care of each other. I still take care of people occasionally. – Madeleine
My grandmother was ill…it was summer…what else needs to be said??? – Gwen
I was 24 for my Mom. I helped with my grandma at 16. I’m now 47. I’m now chronically ill. We help each other with cooking. I do the laundry. We have someone do the yard work. I don’t know how long it will go on but I will do the job until the end. No way I will let her go to a home. – Alicia
I was 16 and still in high school. – Tracy
I became a caregiver at 17. Now I’m 34. – Rachelle
I took care of mental challenged children. They had been abused and their parents on drugs. – Jo
I started taking care of my mother at 18. I became a nurse when I was 27. – Lois
I was 18 when I became a caregiver for my grandfather. – Margie
I became a caregiver at 19, as soon as i left high school. I gave up lots including college to take up being a full time caregiver to my parents. Took care of my dad until his death in 2008 and still taking care of my mom. – Julia
I was 19 when I started as a health care aid. – Mara
I started at 19 years old. I’m 22 now. – Bri
I started at 19, as a professional caregiver. – Beth
I was 19 when I gave birth to a son with Lissencephaly. He is now 21 and needs 24/7 care. – Shaz
I became a caregiver at 19, right out of high school. Now 30 years later I’m still going. – Diane
I was 19. Now I have been doing it for about 20 years. – Kama
My dad had a massive stroke a few days after my birthday and my mom couldn’t stop working. I was enrolled in online college courses so I was able to be with him during the day. He eventually recovered well enough to be alone and take care of himself. At 25 I took care of him while he went through chemo and radiation at MD Anderson for almost two months. We live in Mississippi so I drove my parents out and stayed with them. Sadly, he passed away from it after a two year battle. Two years ago at 30 I moved back home to be my mom’s full-time caregiver after her early onset dementia began progressing and she didn’t need to be driving anymore. It’s now reached a level where I have to help her bathe and get dressed, but she knows enough that we are still able to have a good time. – Angela
I was 21, mom of a 16 month old and 5 month old when my 5 month old was shaken by his babysitter. They didn’t think he would make it, he did but he is fully dependent and at the cognitive level of a 6-9 month old though he is 14. – Tiffany
My Mom had a brain tumor in her brain stem. It was near a main artery so they had to leave some there, which grew back in 2006 and she had her 2nd brain surgery. From her surgeries she had a stroke during her surgery which left her paralyzed on the left side, short term memory was affected, vision was affected, speech. Lover her dearly and I still care for her and I am 48 now. – Michelle
I was a caregiver for my grandfather for about 2 years, assisting my grandmother, when I was in my early 20s. In 2008, when I was 50, my Dad was diagnosed with Alzheimer’s, so I moved in with parents to help my Mom with his care. We kept him at home until he passed in 2009. I continued to live with my Mom, and am still with her to this day. She is now 86 years old; I am 58. I have been her sole caregiver since 2009. She has numerous health issues, including difficult-to-control diabetes, COPD, acute and chronic CHF, HTN, diabetic neuropathy, PVD. I also work full-time from home as a medical transcriptionist. Yes, I am tired, but God will get me through it and help me continue to provide the best care possible. – Diane
I became a caregiver at 21, I think. It’s been so long that I forget. – Amanda
I was 21. I’m 57 now and still caregiving. – Michelle
I was 22 when my husband had a TBI. – Mel
I was in my 20s. I’m still going strong in my very late 50s. – Deborah
I became a caregiver at 23, I’m now 58. I have gone from one person to another all those years. – Debbie
At 23 I started in a nursing home. Now I’m taking care of my husband. – Shelly
Married less than 3 years, began caring for my husband’s mother (breast cancer – no doctors or medical care, per her religion). Also, her sister had Alzheimer’s. Then late 30s, caring for my own mother until her death from COPD. – Lynn
At 24 I took care of my mom for a year before she passed away. – Fatin
My first and only son was born with a brain injury during labor and delivery, due to medical negligence. He has cerebral palsy, cortical visual impairment and many struggles and delays. But he is my whole world. – Liz
Mid 20’s is when I started taking care of my mom. Almost 60 now, and still caregiving for others. I’m tired and ready to retire. Hopefully within the next year. – Penny
I became a caregiver at 25. I’m 41 now. – Shannon
I was 25 when I started caring for my mother with early onset Alzheimer’s. – Lindsey
I was 25 when my mom got a heart attack and, later on, a stroke. – Gloria
It was my 26 birthday when my husband had a stroke,that left him with no speech & paralyzed on right side. I’m still caring for him. The older you get the harder it seems. – Patti
I became a caregiver at 26, and I’m still a care giver for the disabled. – Terrie
I was 27. I have a 19 year old with Spina Bifida. – Jackie
At 28 I became a caregiver after my sister suffered a traumatic brain injury in a motor car collision. – Tracey
When my husband suffered a severe closed head injury from an accident. Took care of him for almost 39 years. Now I have to figure out the rest of my life. – Darnly
I became a caregiver at 29, when my son was born disabled. – Terri
I was a caregiver at 29 and again at 43. – Jennifer
At 30 I became my parent’s caregiver. – Kim
I will be starting my 26th year on May 27th. – John
I was 32 when I moved in with my 80 year old Grandma to help with her stroke recovery. It’s coming up on 2 years since I made one of the best decisions of my life… ❤️ She took 46 steps on her own today!!! There were so many unrelated health issues for over a year after her stroke, so rehab was put off for a long time. Praise God, she’s finally in good health again and is making wonderful, albeit slow, progress with recovery. – Cyndi
Mom was diagnosed with cancer 6 years ago. Took care of her for two years and then my father as he had health issues toward the end of mom’s life. I am still caring for dad but now on hospice care and in my home. – Rachelle
I was widowed suddenly at 29. I became a caregiver at 33 for my boyfriend with cancer. He had lymphoma and brain tumors. – Coral
At 33 I started working in a hospice house. – Karen
I was 34. It was the end of everything. The beginning of everything. – Charles
I was 35. It has been 5 years since my husband’s accident. – Stephanie
I was 35 when my mother had a sudden ruptured brain aneurysm. – Christina
I was 37. Momma had Alzheimer’s. – Mary
I was 38 when my mom got sick, well sicker. We had a drapery shop we had owned and operated for about 25 years at the time, I tried to juggle taking care of her and keeping our shop afloat, eventually I had to close the business because she needed 24/7 care. She already had cardiomyopathy, and had it for years. Then one day she thought she was having a heart attack. Brought her to the emergency room and found out she had pneumonia, congestive heart failure, and throat cancer. Her throat cancer was in stages 3 and 4, and they gave her about 6 months to live. She was a complicated case due to the cardiomyopathy and CHF. No chemo, radiation was our only option. That was May 2003. With aggressive radiation for five weeks, twice a day, five days a week, she lived another two and a half years. My dad who has Parkinson’s couldn’t take care of her on his own, she needed 24/7 care. I took care of her, now I take care of him. We do what we must for the people we love. – Stacie
My mom was on hospice with cancer when I was 38. Daddy became ill with CHF when I was 41 and my husband was diagnosed with MS six months later. I also have a son with autism who is 23. I’m now 55. – Laurie
My son had his TBI when he was 12. He’s 25 now. – Tina
My son was diagnosed with a brain tumor/cancer and I was age 40. He was 20. He passed away this past Jan. 2, 2017. Twenty five long years of his illness. We kept him at home til the very end. – Kathy
I was 41 and have been caring for my husband for 17 years now. He has brain injury and cannot walk, talk and he eats through a G-tube. – Juracy
Age 42 for my patients. One year with my boyfriend and thank goodness we had Hospice help. He has been gone for 6 month’s. I still miss him so very much. – Susanne
I was 42 when my mom had a stroke. – Robin
I was 44 when my partner suffered a TBI after an 18 wheel truck ran a red light at 9 am. She was on her way to work…that was in1995. – Lorraine
I became a caregiver at 45. I never saw it coming. – Louis
I was 45. My daughter was 12. It takes the two of us to handle it. – Kim
I was 46 years old when I started taking care of my 52 year old husband. – Cindy
I was 46 when I started being a caregiver. – Roberta
It was 47 for me. My husband survived 20 months. (Glioblastoma average survival is only 14 months). – Melanie
I became a caregiver at 47. My husband is sick. – Lorraine
I was 48 when my wife was diagnosed with Huntington’s Disease. – Claude
My father went into hospice care & my mother has dementia. My dad is actually doing very well, but really bad memory loss. My mother often thinks I am her cousin. – Cindy
I was a caregiver from 49 to 53 for my parents. I’m still doing at 55 for my disabled husband. – Julie
My husband died 4 months ago. He was diagnosed with a brain tumor 4 years ago. – Susan
I’ve been doing it full time since then. (4years). Part time 10+ years prior. – Angela
I was 53 when I cared for my Dad and then not again until I was 65 when my husband got Alzheimer’s. – Lynne
I became a caregiver at 54…I will be 64 next week. – Annette
I became a caregiver when my 57yr husband suffered a Dbl stroke that left him completely left side paralyzed and 33% upper right brain lobe death. It is going on 5 years now. – Brenda
I became a caregiver at 55, and I’m still doing it at 61. I retired from my job to take on this new role. – Paula
We took care of my mom after my dad died. We were all over 55. – Julie
It became full-time from 56-64. – Christine
My husband had a bad stroke almost eight years ago, three weeks after he retired. He had just turned sixty. You just never know what life has in store for you! – Karen
My Mother is now 97 and five years ago I was 57 when I started taking care of her, 24/7. – Beverly
Sometimes people don’t know the right thing to say. In fact, they put their foot in their mouths pretty often. But sometimes they say just the right thing and it makes a world of difference.
I asked our community:
- Was there a time someone said the wrong thing? What do you wish they’d said instead?
- What’s the most comforting thing someone’s said to you?
Since this is a collection with experiences from quite a few caregivers, I’ve edited their comments lightly so they fit into the format.
The WORST, absolute WORST, thing to say is “I know how you feel.” – Marj
“Don’t leave her alone!” – My mom has Alz and is nonverbal and no longer able to walk. When I take her out with me, people say things like this. It always feels like an accusation, as if I’m irresponsible or neglectful. If they were really concerned, they’d offer to watch her for me! – Lauren
“Get over it and stop looking for handouts” – A family member that has had no contact with us since he got ill said this to me. Asking for help with medications and food is not looking for handouts. We shouldn’t have to ask. I no longer speak to him, as I have no time for negative mean people in my life. – Maggie
To be honest, there isn’t much a person can say to alleviate the pain and internal turmoil of watching a loved one descend into dementia. What was least helpful to me were people repeating religious platitudes. [We all know what they are.] – Kat
My niece Megan never said “Let me know if you need help.” She just jumped in and helped by bringing over food. It’s very hard to ask for help, especially male caregivers. Megan knew that and became our Angel. – Paul
People are reluctant to believe me when I say tell them there’s no cure. Nothing. No drug. No nothing. People will ask “Is he better?” WHAT?@#$%^! Everyone wants a happy ending…can’t blame them really. – Melissa B
“Lauren, you have all that responsibility” – I found it comforting for someone to acknowledge the depth of my situation. – Lauren
“I’m making dinner and bringing it to you. What time do you get home?” – This is the most comforting thing I’ve heard in 12 years of caregiving! – Maggie
One friend – a guy, who happens to be a radiologist – upon hearing my husband’s diagnosis offered help with navigating the medical system “anytime, anywhere, just call.” I believed him, so that was about the most comforting thing anyone has said. – Melissa B
The things most helpful were not so much the kind words, or knowing that someone has us in their thoughts and prayers; but the ones that helped me deal with the realities of dementia and take the best care of my parent and myself. – Kat
I often refer people to an article in the Los Angeles Times called “How Not to Say the Wrong Thing.” Comfort in…..dump out. Simple concept. For person’s with a change in status, i.e., new diagnosis, referral to hospice, the phrase “I wish things were different,” is enough. – Marj
Not that long ago, I ran into someone who knew my mom when she was alive. It was at the grocery store. She said that I am doing a great job and that my dad is a lucky man because not many seniors have family members willing to step up like I have. It’s not an easy thing to do. I don’t get paid for what I do. My dad can be very difficult to get along with. But I promised my mom. More importantly, he is my dad. I am unable to look the other way. – Mimi
I feel like it has always validated my feelings when I hear “I have no idea how you are able to deal with ____.” It makes me uncomfortable, but it is also nice hearing that someone understands the volume and impact the situation could have on you. – Amanda
The best thing, I believe, anyone can say is, “It’s good to see you here” (now, at this time, this moment….) or “I’ve been thinking about you.” That’s nice to know.
Or “Tell me about this condition…” Wow! If more people or ANYONE did that, and really listened, that would be about THE MOST thoughtful thing one could say. – Melissa B
For the newly bereaved, I recommend, “I’m so sorry. YOU were the BEST caregiver your (whoever) could have ever wished for.” – Marj
When I lost my wife, hearing the words “She’s in a better place now” did not help. Keep it simple with the compassionate words, “I’m so sorry for your loss.” Followed by, “I’m here for you if you need me.” Then just listen, and let the griever drive the conversation. – Bob Harrison
Words of wisdom
I think what makes the words so tough is that there are no words. Pain as such is an emotional experience and trying to encapsulate those feelings in words seems impossible. But the language of kindness speaks volumes! It’s the gestures and thoughtful acts during difficult times, even when small, that speak truth to a universe that is perhaps good after all. Shining a light, even in the darkest of days… – Ashley Look