Category: Dementia

Posted on

As her grandparents’ love was tested by dementia, a photographer focused on their bond

“When the nurses told Else that Poul could die soon, she stayed with him all the time at the nursing home, sleeping on a mattress next to his bed,” said Sofie Mathiassen, the recipient of this year’s Bob and Diane Fund grant.

By Olivier Laurent

Sofie Mathiassen’s grandparents — Poul and Else — always kept a journal, jotting down in a sentence or two — sometimes more — the small joys of each of their days together. Eight years ago, Poul was diagnosed with dementia and Parkinson’s disease, and, for the past four years, their granddaughter has been photographing their daily lives in Denmark, creating a record of Poul’s last moments on earth.

The work has won the Bob and Diane Fund grant, a cash prize dedicated to raising awareness through photography of the medical crisis around Alzheimer’s and dementia.

“I have always been very close with my grandparents and spent a lot of time with them throughout my childhood,” Mathiassen said. “So, when my grandfather began to get sicker I started photographing him. I wanted to keep him as I knew him, and I could see him fading away from me and from my grandmother and the rest of the family.”

Poul, 82, at the dinner table with his wife, Else.
Else, 83, at the dinner table with her husband, Poul.

Mathiassen’s photos show the bond between Poul and Else as one’s dementia becomes overwhelming and the other works to hold onto what’s slowly disappearing.

“Their story is just one example of what many families are going through,” Mathiassen said. “I hope that people see the love before they see the disease.”

“Photographing your family takes a certain risk and vulnerability,” said Getty Images photographer Chip Somodevilla, one of this year’s judges. “And Sofie has shared her world with us in an intimate and beautiful way. Denmark may have a sophisticated welfare system — but dementia still has the same impact.”

Mathiassen will receive $5,000 to publish her images in a photo book in 2020, said Gina Martin, the fund’s founder and executive director, said.

Poul and Else Mathiassen in their house in Skanderborg, Denmark.
Dinnertime at Poul’s nursing home.
A mural at Poul’s nursing home.
One week after Poul died, Else celebrated her 84th birthday. She lives alone in their house and plans to stay there.

Complete Article ↪HERE↩!

Posted on

Struggling with care — When is ‘end of life’ too much?

By GARRY OVERBEY

A 94-year-old Venice man allegedly shot and killed his wife, who suffered from dementia. He then tried to turn the gun on himself, authorities said, but the weapon jammed. He told the 911 dispatcher, “I’ve had a death in the family.”

Cheryl Green, 73, lost her husband of 54 years in July after a long struggle with Lewy body dementia.

When Green read about the arrest of Wayne S. Juhlin — currently the oldest inmate at the Sarasota County Jail, charged with first-degree murder — she felt sympathy for him — and guilt, for her husband.

“Unless you’ve walked in his shoes, you don’t know what’s going on,” she said. “He (Juhlin) probably saw something in her condition, that killing her was a mercy.”

The would-be murder/suicide made her think of her husband, and the horror of his final days in a Lake Placid nursing home.

“If I had the means and the courage, I would have ended his misery,” Green said.

She contacted the Sun following Juhlin’s arrest, objecting to the narrative put forth by authorities that help for caregivers is readily available but ignored.

“It sounded as if there were many options open to the man and he just didn’t know they were there. The options are few for individuals who don’t have a lot of money,” she said.

Had her husband been accepted into a long-term care facility, she said, she would have depleted their savings in two months.

A former Washington state employee with a degree in social work, Green said she’s not naive about Medicare and Medicaid and how easily people can slip through the cracks of a bureaucracy. But she was stunned to find herself marginalized in Florida’s elder care system.

“If you’re indigent and you need long-term care, you can get Medicaid,” she said. “But if you’re in the middle — if you’re not wealthy enough to afford $3,000 to $5,000 a month (for nursing care) — you’re stuck.”

Through the looking glass

Cheryl and Drew Green both grew up in upstate New York. High school sweethearts, they met while working in the same grocery store and married while still in their teens.

They moved to Seattle, where she got her master’s degree in special vocational education, he opened his own business as an electrician, and they raised their two children. She worked for the state, running and developing programs for people with developmental disabilities and mental health issues.

Drew was extremely handy and could do almost anything that needed doing around the house.

“He was an excellent craftsman,” Green said. “People liked him because he was so good at what he did.”

Around his mid-50s, things changed.

“He started making mistakes at work,” Green said. “He would say, ‘I don’t know why, but I can’t figure things out anymore.’”

The man who had once built her a backyard gazebo was now forgetting things and had trouble with basic tasks.

Doctors told them he had dementia, but it would be years before one finally diagnosed him with a specific type: Lewy body dementia. LBD is a progressive form of the disease, with visual hallucinations, that affects thinking, behavior, mood and movement. Life expectancy is usually five to seven years.

Drew couldn’t work and his business folded. Green quit her job to care for him. Seattle was too expensive under those circumstances, so she looked for a cheaper place to live. In 2010, they moved to Burnt Store Lakes in Punta Gorda.

They lived off their savings and took early Social Security benefits. As his health declined, they were relieved when he qualified for Medicare.

“He was living in an alternate reality,” she said. “He had delusions and thought he had to act on them.”

For instance, Drew once thought he could go upstairs by walking through a mirror.

His condition steadily worsened over the years.

“He still had a sense of humor. He stayed kind,” she said. “But he became really delusional and started lashing out at people.”

Drew would sometimes stay up and wander the house for three or four days at a time. He would walk into sliding glass doors.

“I was under the delusion that I could take care of him,” she said.

Green, who had been diagnosed with lupus in the last year after struggling with fatigue her whole life, was exhausted and finally reached out for help. Earlier this year, she contacted Charlotte County’s Senior Services. They agreed to send someone to help for four hours twice a week to provide respite care — giving the caregiver a break for a few hours and helping with household chores. But when the worker arrived, Green was shocked to learn she didn’t speak English. Green was handed a cell phone and told to talk to a supervisor, who would translate Green’s instructions. A second worker spoke some English, but she mainly sat and did puzzles while Drew watched.

The county’s Senior Services cannot discuss details of a specific case because of privacy, but there are limitations on help that can be provided.

“Vendors do have difficulties providing services in more remote areas of the county, weekends and evening service, and we have no vendor willing to handle heavier chore tasks,” said Deedra Dowling, manager of Charlotte County Human Services/Senior Division. “We depend on the subcontracted vendors to provide the staff for service provision and we do monitor for contract compliance. … We have had clients who have tried every worker, every agency, and finally left with no service provision as they could not be satisfied. While this scenario is extremely rare, it has happened a few times over the years. Overnight services have always been extremely difficult to staff for a variety of reasons.”

Dowling added she wishes there were “many more resources.”

Green said she needed someone to come three nights a week, and someone on call at night.

She started sleeping on the couch so she could keep an eye on the doors to make sure he didn’t leave the house.

“I didn’t understand what I needed. I thought, I’ll keep him until I can’t keep him home anymore.”

Resources were few. Her children, who live out of state, helped when they could. Neighbors helped, but Drew’s aggression scared them.

“It’s difficult to ask anybody to help restrain someone in the middle of the night.”

Reality check

In May, Drew escaped through a window. Green searched the neighborhood and found him wandering the streets in his boxer shorts. The next night, he got out again. This time, she found him unconscious in the bushes near the alligator-infested lake behind their home.

She brought him to Fawcett Memorial Hospital May 19. He was placed under observation, but Medicare wouldn’t pay until he was actually admitted, which happened once he began having heart issues and his blood pressure shot up.

His decline accelerated. “He started punching people,” Green said. “He was scary aggressive.”

At Fawcett, she credits one doctor with giving her a reality check on what she knew were her husband’s last days: “He said, ‘This isn’t a fairy tale. Grandpa isn’t going to come home and be surrounded by loving grandchildren.’ He said he’ll be ranting and raving and lashing out at people.”

One night in the hospital, to keep him from jumping out of his bed, Green wrapped him in a bed sheet and held it tight.

He was beyond being helped at home. A doctor said he would need three people caring for him around the clock.

“Obviously, he was lots and lots of work wherever he went.”

She tried to get him into Tidewell Hospice, but was turned down. She said she wasn’t given a reason, only that he “didn’t meet the criteria.”

“I knew he was dying,” she said.

A hospital social worker started looking for a nursing home, but no one local would take him, Green said, “because he was aggressive and had Lewy body, and they didn’t have the experience or the staff to deal with him.”

Only two facilities in the state would take him. Online reviews for the one in Clearwater were so bad it was unthinkable, so she went with a facility in Lake Placid.

“I hoped maybe he could have some rehabilitation, maybe learn to feed himself again.”

Fawcett insisted he be transported to Lake Placid by ambulance, a $3,000 trip the hospital agreed to cover.

‘The old person’s friend’

The Lake Placid facility turned out to be worse than she could have imagined.

“The place was dirty, the staff overworked and the administration was less than helpful.”

Drew’s conditioned worsened.

“He could not feed himself or use the bathroom,” Green said. “He cried when he saw me. He was wet, dirty and being fed food he would never eat in his former life. He was frightened and tried to keep the staff away from him. He was usually put in an old wheelchair missing half its parts and was slumped to the side.”

After 20 days, the facility notified her he would be taken off Medicare because he wasn’t making progress. They would let him continue to stay there for $260 a day. Had Green agreed, “I would go through any money I had left very quickly,” to keep him in a place where “I would not keep my dog.”

“I wanted someplace stable where I could visit him, but that was not available to me at all,” she said. “I looked every day for a new place. He was terrified and I was miserable.”

Suffering from infections, pneumonia and near-continuous seizures, Drew was taken to the emergency room. From there, he was finally accepted to a hospice in Clermont, near Orlando. Green noted someone telling her pneumonia was called “the old person’s friend” — “because it takes them away when they have other diseases.”

“It was a wonderful place to be,” she said of hospice.

She was able to be with him that night. The next morning, July 16, a nurse’s aide told her he had died.

A better ending

Three months later, Drew’s last days haunt her.

“What an awful way to die — thinking you’re not safe, that you’re being attacked all the time, no help from anybody, and the nursing home didn’t want him anymore.

“To have him in that place, to see him crying and scared,” she said, shaking her head. “I’ll never get over the guilt.”

She adds: “I shouldn’t have lived in a delusional state that I could take care of him.”

If he could have gotten into a hospice earlier, she said, “his life would have had a better ending.”

Her thoughts roll back to Juhlin and others like him who took action to end a loved one’s suffering.

“I don’t think I could kill anybody, especially someone I loved. But I wish I could have ended his misery.

“It’s horrible when the person you love most, you think they’d be better off dying. My last three dogs got so sick I had to put them down. I loved those dogs. I didn’t murder them.

“I wouldn’t shoot anybody, but I might have given him too many sleeping pills.”

Green said she visits online forums for people with loved ones suffering from Lewy body dementia. But she is reluctant to participate.

“I don’t want to tell my story because I don’t want them to know how bad it’s going to be.”

She wants to be an advocate for raising awareness about the condition, and offers advice for those in similar situations.

“Don’t think that anyone is going to automatically be there to help you.”

She recommends getting an elder care attorney once it becomes clear a loved one is going to require long-term care.

“Sit down and talk about Medicare and Medicaid options, and whether you can keep your house after your loved one passes away.”

Green still owes a little money on their house, and she’s confident she can keep up with home repairs without having to take out a loan.

Nine years of Medicare “doughnut hole” expenses for Drew’s medications, as well as retiring early, ate up their savings.

Still, she’s able to get by on Social Security and her pension from Washington. Plus, she says with a little chuckle, Social Security gives her a widow’s pension — $37.91 a month.

She’s adjusting to life without her husband.

“I had a man who could do everything,” she said. “Now I’m figuring out how to do everything.”

Complete Article ↪HERE↩!

Posted on

The impossible case of assisted death for people with dementia

Is it too much to ask people to follow through on previously expressed wishes for assisted death? An expert report suggests it may well be.

Dying with Dignity Canada’s CEO Shanaaz Gokool (centre) sits with Barb Brzezici (right), an assisted dying advocate whose mother died after a long battle with dementia, in Toronto, April 14, 2016.

When Canada legalized medically assisted death in 2016, the legislation excluded a trio of particularly difficult circumstances, committing to studying them in detail over the following two years. Those reports—on advance requests, mature minors and cases where a mental disorder is the sole diagnosis—were authored by three panels of eminent experts from a variety of disciplines, and in spite of the resolutely neutral and delicate language in the documents, they make for deeply compelling reading.

Of the three complex circumstances, it is advance requests—which would allow someone to set out terms for their medically assisted death, to be acted on at a future point when they no longer have decision-making capacity because of dementia, for example—that have drawn the greatest interest and agitation for change.

The working groups behind the reports were not asked for recommendations, but rather to provide detailed information on how other countries have grappled with these issues, what a modified Canadian law would need to take into account and how fields like ethics, philosophy, health care and sociology might help us puzzle through these issues.

And while they explicitly take no position on what the government should do, a close reading of the evidence the expert panel gathered makes it virtually impossible to imagine that advance requests for Canadians could exist and be acted upon.

That is not because the will isn’t there; many people with dementia or other illnesses that will eventually consume their cognitive capacity profoundly desire some sense of deliverance and control of their ending, for reasons that are easy to understand.

It is not because requiring help with every task of daily living, or being unable to communicate one’s thoughts or conjure up the names of loved ones is not a real form of suffering; for many people, that is just as intolerable as the spectre of a physically painful death.

And putting advance requests into practice doesn’t seem prohibitive because people who want them would be unsure about where to draw their line; indeed, that threshold is glaringly obvious for those to whom it matters most, and robust documentation and communication with health care providers and family members could provide much-needed clarity.

Rather, the reason it seems virtually impossible that Canada could have—and, crucially, use—advance requests is because it is simply too heavy a burden for those tasked with deciding when to follow through on the previously expressed wishes of the person before them, once that person can no longer meaningfully speak up for themselves.

“Evidence from international perspectives suggests there may be marked differences between stated opinion on hypothetical scenarios and actual practice,” the report notes. In other words, while people generally understand why others want advance requests and broadly support their availability, almost no one can bring themselves to act on them.

“It’s to be expected that these will be heavy decisions to be made, and I’m not sure that we would want them to be light, either,” says Jennifer Gibson, chair of the working group that examined advance requests for medical assistance in dying (MAID), and director of the University of Toronto Joint Centre for Bioethics.

Gibson’s group and the two other panels that examined MAID for mature minors and for people with a mental illness were chaired by former Supreme Court Justice Marie Deschamps and convened by the Council of Canadian Academies, a non-profit organization that “supports independent, science-based, authoritative expert assessments to inform public policy development.”

What is striking in reading the report on advance requests is how profound and deeply human it is, and how quickly the debate becomes almost dizzyingly existential—much more so even than the issue of assisted death in general. “There’s this human experience that we’re all sharing. We’re all in that together—that we are mortal, that we will die, that we will lose loved ones in our lifetime,” Gibson says. “That unavoidable vulnerability sort of encapsulates a lot of these policy and clinical and legal discussions that are unfolding.”

The report delves into concepts like the meaning of personal autonomy; how we care for those we love by shouldering the responsibility of making decisions when they no longer can; the concept of suffering and who defines it; how we weigh the interests of the patient against what their doctor and family are asked to handle; and which safeguards might help reassure those gathered at the bedside who have to make a decision.

“We can think about it as burden, but it’s not just about burden—it’s also about care….there is no question that burden is part of what comes with uncertainty. These are excruciating decisions that someone has to make on behalf of someone who is no longer decisionally capable,” says Benjamin Berger, a professor at Osgoode Hall Law School at York University and a member of the working group. “But a way of thinking about the burden is also, ‘Am I doing the right thing?’”

And a deeply conceptual sense of the self is central to the report: if in the present, you decide on and record a series of conditions under which you would no longer want to be alive, and you later become incapacitated, are your present and future selves the same person given how profoundly you’ve changed? If, once you are incapacitated, you appear perfectly content or even outright resistant to the MAID procedure you once requested, which version of you and which set of wishes and desires takes precedence, and why?

“Under what conditions might we expect that somebody would so radically lose those core compass points, if they lost capacity to make certain types of decisions, that they would become an entirely new person?” Gibson asks. “It is an existential question.”

And the report puzzles at length over this: can you really know from your present vantage point what your future self will want, how you might suffer or find joy in whatever your life looks like over the next horizon?

Research demonstrates that we are not very good at estimating what our quality of life would be if we fell ill or had some form of disability. This phenomenon, known as “the disability paradox,” is “pervasive,” the report notes. “The underestimation of quality of life by able-bodied or healthy people, rather than its overestimation by those living with a disability or chronic illness, drives the disability paradox,” the expert panel notes.

But again, in the debate over advance requests, this circles back to a deep concept of self: even if you are completely content once you are incapacitated, how much does that matter if your past, competent self loathed the notion of spending years in a long-term care facility needing help with every daily activity?

“Simply pointing to the idea that autonomy is respected and autonomy is important fails to wholly solve the most difficult issues in this field,” says Berger. “The question everybody is trying to ask is, understanding that autonomy is a core issue, what is the right method of ensuring that we respect autonomy?”

But for all of these sprawling legal, philosophical and ethical conundrums, it is when the report explores the experience of other jurisdictions with more experience practicing MAID or more liberal laws than Canada’s that the true difficulty in putting advance requests into practice for people with dementia becomes obvious.

Just four countries—Belgium, Colombia, Luxembourg and the Netherlands—allow advance requests for euthanasia in some form. However, “nearly all” of the information we have about advance requests in practice comes from the Netherlands, the report notes, because of “lack of implementation experience” in Colombia and Luxembourg, and very little detailed data available from Belgium.

The 2002 Dutch law that formally permitted the practice of euthanasia that had been going on for decades allowed for written advance requests for anyone aged 16 and older, in which they must clearly lay out what they consider unbearable suffering and when they would want euthanasia performed. Those would apply when people could no longer express their wishes and would have “the same status as an oral request made by a person with capacity,” the expert panel reports.

But while the annual reports from RTE, the regional review committees that govern euthanasia in the Netherlands, do not report the number of deaths due to advance requests, they do show that between 2002 and 2017, “all or most” of the patients who received euthanasia due to suffering from dementia were in the early stages of the disease and still had capacity to consent.

A study of 434 Dutch physicians between 2007 and 2008 found that while 110 had treated a patient with dementia who had an advance request, only three doctors had performed euthanasia in such a case (one doctor helped three people to die); all five of those patients too were “deemed competent and able to communicate their wishes.” The paper concluded that because doctors could not communicate with the patients otherwise, “Advance directives for euthanasia are never adhered to in the Netherlands in the case of people with advanced dementia, and their role in advance care planning and end-of-life care of people with advanced dementia is limited.”

Indeed, in 2017, a group of more than 460 Dutch geriatricians, psychiatrists and euthanasia specialists co-signed a public statement committing to never “provide a deadly injection to a person with advanced dementia on the basis of an advance request.”

And while family members of people with dementia support the idea of MAID if their loved one had an advance request, when it comes to acting on that, the majority—63 per cent in one study and 73 per cent in another—asked a doctor not to follow the request and actually provide euthanasia, but instead to simply forego life-sustaining treatment. “Some of the reasons given by relatives were that they were not ready for euthanasia, they did not feel the patient was suffering, and they could not ask for euthanasia when their loved one still had enjoyable moments,” the report explains.

Other Dutch studies show distinct contours in opinions on advance requests in cases of advanced dementia; the general public and family members of people with dementia view it more permissively than nurses and doctors, and doctors are most restrictive of all. “The authors of these studies hypothesized that this could be due to the different responsibilities of each group,” the working group wrote. “Physicians actually have to carry out a patient’s request, and when a patient cannot consent, this act comes with a heavy emotional burden.”

Here in Canada, the federal government has said it has no plans to alter the law to permit advance requests, even in the face of intense interest and pressure around the issue in a particular context a few months ago. In November, Audrey Parker, a vivacious Halifax woman with Stage 4 breast cancer, died by MAID two months earlier than she wanted to, because she feared cancer’s incursion into her brain might render her unable to provide final consent for the procedure if she waited. Parker spent her final months as the highly visible and compelling face of people like her, who are approved for MAID but forced to seek it earlier than they want to—or reduce badly needed pain medications—for fear they will lose the lucidity required to consent.

When it comes to concerns about determining when a patient with an advance request is ready for MAID, how clear their conditions are and whether they may have changed their mind if they can no longer communicate, the report suggest that cases like Parker’s would be the simplest and least controversial in which to permit advance requests. “These issues would likely not arise if a person wrote a request after they were already approved for MAID,” the working group notes. “In this case, they would be able to confirm their current desire for MAID themselves, and may even choose a date for the procedure.”

But when it comes to dementia—the condition which seems to inspire the strongest public desire for advance requests, and for which the disease trajectory is longer and more uncertain—the situation is much more difficult.

It is rarely useful to frame a public policy debate in terms of factions of winners and losers. But with the notion of advance requests for people with dementia, it is difficult to avoid the sense that in order for one group to get what it very understandably wants—a sense of control and escape from an existence that is at least as intolerable to some people as physical suffering—another group must shoulder a different sort of crushing burden—namely, the medical practitioners tasked with actually performing MAID and the family members or substitute decision makers who would have some role in sanctioning the procedure based on their loved one’s recorded wishes.

But Gibson argues that the solution to a heavy burden is not to make it light, but rather to ask what supports and measures would be required to bear it if such a thing were available in Canada. “And some members of the panel were really doubtful that anything would be sufficient to bridge those uncertainties, whereas others on the panel said, ‘I think we’ve got some experience with this, I think we could,’” she says. “There’s not going to be some external adjudicator to tell us we got it right.”

And while there is something distinctly fraught in decisions about MAID, she points out that families all over the country contend every day with life-and-death medical treatment decisions behalf of the people they love.

“It’s part of the ways in which we express love and caring for our loved ones, is we care for them even when they’re unable to care for themselves,” Gibson says. “We ought not to be surprised that these decisions are burdensome. And at the same time, they’re burdensome precisely because of these human connections that we have.”

The immense weight of these choices, then, is the price of admission for the bonds we share, and for the meaning we assign to life itself.

Complete Article ↪HERE↩!

Posted on

New Study Examines Death With Dignity for People With Dementia

By

Gerda Saunders, an author and former gender studies professor in Salt Lake City, Utah, was diagnosed with microvascular dementia in 2010 at age 60.

The time leading up to diagnosis and immediately after can be a whirlwind of emotions and confusion. But one thing, said Saunders, helped put her at ease: putting a plan in place for end-of-life care.

Saunders has chosen to pursue physician-assisted death when the time comes. “Preparation for the uncertain future is the most calming thing I’ve ever done,” she recently told Being Patient in an interview.

Saunders’ approach to end-of-life care is becoming more popular and accepted amongst people with a high risk of Alzheimer’s, a new study published in JAMA Neurology found. While we still can’t predict who will get dementia, there are several biomarkers that indicate a heightened risk for the disease. Researchers at the University of Pennsylvania interviewed people with one of these biomarkers, beta-amyloid, about their attitudes toward physician-assisted death once they knew their brains contained higher levels of the protein, which forms into plaques that destroy neurons in the brains of Alzheimer’s patients.

Of the 47 people interviewed, one in five said they would be interested in pursuing physician-assisted suicide if they were diagnosed with dementia and it progressed to the point of suffering or burdening others.

Physician-assisted suicide is legal in eight places in the U.S.—California, Colorado, Hawaii, Vermont, Washington, New Jersey, Montana and Washington, D.C.—but excludes dementia patients because states require the patient be of sound mind and have less than six months to live. Because the last stages of dementia can stretch out for much longer than six months, people with Alzheimer’s and other dementias do not qualify for “death with dignity” laws.

Most Americans support “death with dignity” laws, according to a 2018 Gallup poll that found 72 percent of people agreed that doctors should be able to assist a patient with a terminal illness in dying at their request. But the laws have always excluded patients with degenerative brain diseases who are deemed unable to make decisions for themselves.

Dementia patients can put advance directives into place, instructing hospital staff not to put extreme measures like feeding tubes into place. But those measures are not legally or ethically binding for medical staff.

Once she meets a set of criteria she has set for herself to determine quality of life, said Saunders, she will likely travel to Europe for physician-assisted death. She plans to carry it out herself and video it in order to avoid putting her husband, Peter, in legal jeopardy.

“We are managing it with all the intellect that we have and that is the best our family can do,” said Saunders, who has the support of her children and also promised to do the same for her husband if he meets certain criteria for quality of life before she does.

“I’ve put down a number of checkpoints: Do I appear or act happy for more hours in the day than I appear or act unhappy? Am I scared of people or my grandchildren or do I scare them? Do I consume more hours of care per day than I live on my own?”

It’s not always easy for family members to come around to the idea of a physician-assisted death—but for a patient who feels control has been snatched away, it can be a comfort. “It’s the hardest thing in his life to promise me that,” said Saunders of her husband’s commitment, “but he also asks it of me. My children and my family have given me an enormous gift in that promise.”

Complete Article ↪HERE↩!

Posted on

What is the value of the outdoors for someone living with dementia?

Delve into the world of neurodegenerative diseases, as Active Minds highlights the importance of valuing the outdoors for those living with dementia.

Spending time in the outdoors holds many benefits, from achieving the necessary dose of Vitamin D to exploring our senses and socialising, and this is no different for someone living with dementia.

Whilst extra care may be necessary, there is true value to experiencing the outdoors when living with dementia. Here we will explore just some of the many benefits and activities which would be suitable.

Sensory exploration

As we age it’s common for our senses to decline and it’s therefore important to explore different ways of engaging them to stay connected. When living with dementia, our connection to the world may feel even more distant, as communication difficulties arise, it is therefore vital that other dementia activities are explored. The outdoors provides an excellent multi-sensory platform and can be brilliant way to explore the senses.

Encouraging your loved one to take part in activities such as gardening or bird watching can be great for exploring the senses. The sounds of wildlife, partnered with the scents and sights of the flowers along with the feel of the plants can be excellent for multi-sensory exploration and evoking positivity.

Let’s talk about reminiscence activities

When living with dementia memories and experiences can sometimes become confused or forgotten, which can become highly frustrating. A variety of reminiscence activities have been explored which have been shown to be able to trigger memories in those living with dementia. As our memories are often linked to a specific location or place, exploring these places could be excellent for sparking memories.

Why not visit somewhere familiar to your loved one could help to draw out memories of the past, and in turn encourage conversation and improve mood.

Time to get more social

A common occurrence as we age is the increase in loneliness, and this has been shown to be highly prevalent in those living with dementia. As communication difficulties make it more difficult to hold conversations, other activities should be explored to achieve a level of socialisation.

An excellent way to encourage socialisation and conversations outdoors would be to take part in activities such as group gardening, exercising together, or simply going on walk and identifying plants or animals in a group.

Physical well-being

A hugely important part of our health involves staying physically active, and this is especially important as we age in order to help maintain abilities. Although mobility may provide some restrictions, there are still plenty of outdoor activities which would be suitable.

As someone moves along their dementia journey, mood changes and depression can become more common and as exercise has been linked to improving mood, this is a fantastic way to help relieve stresses and anxieties. Why not encourage your loved one to join you on a gentle walk which gives the opportunity to get exercise along with spending time outdoors and improving mood.

With such a wide variety of benefits of experiencing the outdoors when living with dementia, it is important that these are explored in order to improve everyday mental and physical well being.

Complete Article ↪HERE↩!

Posted on

For people with dementia, a fight for the right to die

The Alzheimer Society of Canada is reconsidering its position on advanced requests for assisted death, amidst a difficult debate about the rights of those with dementia

by

Ron Posno was diagnosed with mild cognitive impairment—a precursor to dementia—in 2016, and soon after, the London, Ont., resident re-wrote his will. He already had a Do Not Resuscitate order in place, and to this he added instructions for the niece who was his substitute decision maker that at a specific point in the progress of his illness, she was to seek medical assistance in dying on his behalf.

The eight conditions that Posno identified as signalling the proper time for his death are like a photographic negative that also reveals what he considers a life worth living. When I am unable to recognize and respond to family and friends; when I frequently experience hallucinations, paranoia or acute depression; when I become routinely incontinent; when I am unable to eat, clean or dress myself without assistance: that is when I want it to be over.

But then Posno’s niece, a lawyer in Toronto, informed him that an advance request like this for medical assistance in dying (MAID) was against the law and she would have no ability to act on it once he could no longer consent.

Posno had assumed that this request was basically an extension of his DNR: a statement of his desires for medical treatment in a given set of circumstances. He found it incomprehensible that he could legally state that he did not want CPR and the instruction would be followed if he were unconscious with a DNR in place, but in the face of an illness that would eventually render him unable to provide informed consent, he couldn’t request MAID on behalf of a carefully delineated future version of himself.

“These eight conditions are like signposts on the road to decline. I am declining. My mind, literally, is being destroyed on a daily basis. There’s nothing I can do about it, there’s nothing anybody can do about it… It’s just disappearing,” the 79-year-old says. “I do not want to live like that. I don’t want to do it, I don’t want to inflict it upon the people who care for me.”

MAID is “likely the most compelling piece of health legislation” Canada has crafted in decades, he says, “And yet it fails, and it fails primarily because it discriminates against people with dementia.” Posno has spent the last year waging a vocal campaign of advocacy and agitation against what he sees as a galling infringement on the rights of people with dementia.

Under Canadian law, MAID is available to adults with a “grievous and irremediable medical condition” whose natural death is “reasonably foreseeable,” and medical professionals must obtain informed consent from the patient just before administering the life-ending medications. In the late stages of dementia, people no longer have the capacity to provide that consent, and there is no provision in the legislation to work around that.

Of the three special circumstances that were excluded from Canada’s assisted dying law in 2016 and set aside for further study—advance requests, mature minors, and cases where the sole underlying condition is mental illness—advance requests are, by far, the circumstance that has generated the greatest interest, demand for change and fraught contemplation.

And rising rates of dementia in an aging Canadian population, the very nature of a condition that inexorably means an eventual loss of competency, and many people’s knowledge, fear and deep antipathy toward the idea of lingering in the later stages of the disease has centred much of the debate about advance requests in the world of dementia.

To Posno, the absence of advance requests in Canada—they are available in some form in just four countries worldwide, and even then employed with vanishing rarity in cases of dementia—is an appalling omission that deprives him of the rights afforded other Canadians under the Carter decision in which the Supreme Court of Canada struck down the prohibition against assisted death.

“MAID was designed deliberately to exclude people with dementia because of this general naive and very biased notion that people with dementia are vulnerable,” he says. The refrain he hears again and again to explain the opposition to advance requests is, “We must protect the vulnerable.” Posno’s voice is tipped with acid when he responds: “I’m not vulnerable.”

The Alzheimer Society of Canada has been one of the prime targets of his advocacy campaign over the last year, due to a formal position statement in which the organization opposed advance requests. “The Alzheimer Society of Canada believes that because we cannot predict future suffering, providing advance consent for MAID should not be possible for people with dementia,” the statement said, in part. “The Alzheimer Society believes that people with dementia need to be safeguarded as they will be extremely vulnerable at the end of their life.”

That position statement was released right before assisted death was legalized in Canada and in place until February 2019, when the ASC pulled it for review. An updated version will be released mid-summer. And in fact, the re-examination within the organization of its approach to MAID and advance requests began well before Posno publicly raised his concerns.

“When I arrived at the Alzheimer Society a few years ago, it’s the first question I asked: ‘How did we come up with this and why did we end up there?’” says Pauline Tardif, who took over as CEO in the spring of 2017. “It can be perceived in a negative way as non-supportive of people who may want to self-advocate or have authority over their affairs right to the end of life. For the same reason Ron is questioning it…I had the same question.”

The ASC arrived at its original position through consultation with experts in health care, ethics and law, as well as people living with dementia. The institutional soul-searching that went into that process—and the revision currently underway—reflects both the profoundly difficult issues surrounding advance requests broadly, as well as the difficult fit between MAID and the society’s core missions.

The stigma of dementia is one of the most common problems her organization hears about, Tardif says, and people with dementia often say they feel like the progress of their illness gets artificially accelerated when people assume they can no longer drive, or talk about them instead of to them.

She worries that people with dementia may internalize that stigma, too, and if advance requests were available, some may opt for MAID out of a warped sense of what their future life will be like, or fear of being a burden. “The fact is that many people with dementia lead very meaningful, active lives for quite some time after diagnosis,” she says. “The fear, or the unknown, or the projection or the assumption that people don’t have quality of life or have meaningful life—however an individual diagnoses that—makes it challenging for some.”

Another of the major concerns of the ASC mirrors one heard in the palliative care community: their mission is advocating for more supports and better care, so they worry MAID could inadvertently become a sort of societal escape hatch that undermines the quest for more resources for overwhelmed caregivers. “So instead of society having the reflex of supporting that family through their dementia journey, that could be an easy out,” Tardif says.

One of the most existential concerns around advance requests is the unknowable quality of the inner life and desires of people in late-stage dementia. Tardif comes to this with very personal and recent experience: in January, her mother died after living with dementia for a number of years. “Would she have wanted to live in this way? If I had asked her 30 years ago, she would have said ‘No way.’ I know this,” Tardif says. “But would I have been able to make the decision to say, ‘Oh no, this is the time where she would have said no’? Personally, I could not have done that, because I wouldn’t have known if that was last year or next month or even right to end of life.”

More than anything, it was the newness of Canada’s MAID regime and the unknown territory into which the country was venturing that caused the ASC to adopt a policy that may have appeared “overly cautious or even protective,” Tardif acknowledges. “It was well-informed, but at the time, the law was just passing, and I would say that our instinct, if I can call it that, was to ensure that we took the right time to look through the complexities of the file,” she says.

The new position the society will adopt this summer will not advocate for or against a particular policy, but rather focus on providing information and support for people with dementia, regardless of their choices.

The Liberal government has said it has no plans to re-jig the law to include advance requests, with then-Justice Minister Jody Wilson-Raybould saying in November that the government is confident its legislation “finds the right balance in terms of being able to access medical assistance in dying, protecting the autonomy of individuals to make the appropriate decisions for themselves, as well as protecting vulnerable individuals.”

So for now, the debate is purely a theoretical one, but given the profound issues at play, it is unlikely to fade away. “It may be impossible to square, right?” Tardif says. “We may need to accept that it is a very complex onion that we need to peel back slowly.”

Jim Mann, of Surrey, B.C., comes to the issue with similar experience to Posno, but he has arrived at a very different conclusion. Mann has observed firsthand and twice over the stigma attached to dementia: His mother was in the late stages of dementia in 2007 when he was diagnosed with Alzheimer’s, at the age of 58. He’s seen how people will ask a caregiver how a person with dementia is doing while the person is standing right there.

Like Tardif, he worries that people can internalize that stigma and “panic” about their own futures, which is why he is not in favour of advance requests. “Some people—I think personally it’s probably a fair number of people—are just afraid of getting to the end of the dementia journey, the idea that you lose your independence, the idea that you might lose your communication skills, the names of your family and so on, just that idea is incomprehensible,” he says. “Because of that projection into an unhappy moment or an unhappy situation, then their current vision is one of ‘I won’t go there.’”

Mann has come to think about dementia in terms of the creativity required to live with and work around it. When he realized that loose change was tripping him up at a cash register, for example, he switched to using only bills. He applies that same sense of accommodation to thinking about quality of life and sources of happiness in the latter stages of dementia.

As his mother’s illness progressed, they would often sit in the lounge of her long-term care facility and watch the show through the south-facing windows. Planes took off and landed at a nearby airport, and while his mom called them “the bus,” Mann knew exactly what she meant and it was a shared experience they delighted in. The landscape bloomed into life in the spring and took on a burnished palette in the fall, and they soaked it all in together. “That was joy,” he says. “I like to think you can still bend over and smell a rose; you might not know what it is, but the smell is lovely. Why miss out on that? I just wouldn’t want to.”

But while Mann bases his opposition to advance requests on a clear image he has of the later stages of his own illness—and the sort of adjusted-but-real happiness he believes can be found there—Posno’s equally vivid notion of what lies ahead is precisely why he wants the power to decide on his ending.

“I can talk to you, I can sing songs. You can keep me busy all day colouring a colouring book, I can go to bed every night with a teddy bear. That’s what they do!” he says, his voice leaping an octave in outraged horror. “That’s what’s considered a normal, happy life for a person in that last terminal [stage].”

To Posno, the argument that he won’t be aware of or distressed by his condition then is irrelevant: the Ron of today can see over that horizon and abhors the idea of his future self living it. And similarly, the notion that someone in late-stage dementia might seem contented and free of obvious suffering, and that a substitute decision-maker or doctor might be reluctant to act on an advance request because of that, misses the point.

“My mind will not have changed; my mind has disappeared. They have no right to say I’m happy and I deserve to live. I am not living at that point, I am existing,” he says. “Your life is in your mind, and when your mind goes, you are not alive.”

The chasm between Mann and Posno’s visions of their future, and the ways in which the Alzheimer Society has struggled with this issue, all point to the same truth that underpins the confounding issue of advance requests: How and when you wish to die is, really, about how you want to live.

Complete Article ↪HERE↩!

Posted on

Declining Sense of Smell May Foretell Death

By Stephanie Pappas

Elderly people with a poor sense of smell have a higher likelihood of dying in the 10 years after testing than those whose sniffers stay sharp.

In a new study, elderly people with a poor sense of smell had a 46% higher risk of death 10 years after olfactory abilities were tested, compared to those who passed the smell test. The study also reported that 28% of the increased risk of death could be attributed to Parkinson’s, dementia and unintentional weight loss, all of which predict death in their own right and can also affect a person’s sense of smell. [7 Ways the Mind and Body Change With Age]

But the remaining 72% of the risk linking poor sense of smell and death is unexplained and may be due to subtle health conditions that eventually worsen, the authors wrote in the study, published today (April 29) in the journal Annals of Internal Medicine.

The changes of age

According to the paper, about a quarter of older Americans experience a decline in sense of smell, but this is more likely to go unnoticed compared to loss of sight or hearing. Some studies have linked the decline in sense of smell to risk of death within five years of the decline’s onset, but that research didn’t control for demographics such as sex and race, or health characteristics that might explain the links between sensory loss and death.

n the new study, Michigan State University epidemiologist Honglei Chen and his colleagues used data from the Health ABC study, a long-running study of elderly individuals. (One of the co-authors of the new study, Dr. Jayant Pinto, has received money unrelated to the current study from pharmaceutical companies involved with respiratory allergies and nasal drug delivery.)

Between 1997 and 1998, scientists had recruited about 3,000 older adults, ages 70 to 79, living in Pittsburgh or Memphis, Tennessee for the Health ABC study. Of those individuals, nearly 2,300 completed a smell test at the beginning of the study. In this test, they were asked to identify 12 common smells, and they remained in the study until their deaths or until 2014, whichever came first.

During the total follow-up period of 13 years, about 1,200 study participants died. The researchers found that those with a poor score on the olfaction test had a 46% higher risk of dying by year 10 and a 30% higher risk of dying by year 13, compared with those who had a good score. (The stronger association at year 10 compared to year 13 was likely because the participants were already into their 70s and nearing the end of their life spans, the researchers wrote. By year 13, many were dying regardless of their sense of smell or health status early in the study.)

Sense of smell seemed to be a particularly powerful predictor of earlier death for those who were in good health, the researchers wrote. Among participants who said at the beginning of the study that their health was good, poor olfaction was linked to a 62% increase in the chance of dying by year 10 compared to good olfaction; it was linked to a 40% increase in the chance of dying by year 13.

What’s smell got to do with it?

It’s known that the neurological damage from Parkinson’s disease and dementia can affect a person’s sense of smell, so Chen and his colleagues investigated whether those conditions could explain the link between the nose and death. They also checked the role of weight loss, which could indicate malnutrition.

Even taking those conditions into account, a poor sense of smell explained 70% of the differences in timing of death. The association held across race and gender, which could make it a powerful tool for quantifying health, the researchers wrote.

“[P]oor olfaction among older adults with excellent to good health may be an early warning sign for insidious adverse health conditions that eventually lead to death,” the researchers wrote.

Complete Article ↪HERE↩!