The Politics of Dementia

The loneliness of frontotemporal dementia

Via The New York Times, an article by Dr. Sara Manning Peskin: The Loneliness of Frontotemporal Dementia. Excerpt:

Frontotemporal dementia attacks people in their fifth or sixth decade, just as retirement comes within reach. Doctors believe the disease affects 60,000 people in the United States alone. Neurons in the front and side of the brain wilt, and along with them, images of peacefully growing old fade. Judgment and complex planning yields to chaotic disorganization. Inhibitions give way to impulsivity and hypersexuality, so that longtime faithful partners look to affairs and excessive pornography. Empathy turns to apathy. Obsessions and compulsions erupt. 

Language can become laborious; the meaning of words and objects can be lost, and fluent speech can dissolve into fragments of sentences with nonsensical grammar. Jarringly, memory remains largely untouched. Since brain areas that dictate personality are often the first to suffer, most people end up on a therapist’s couch long before finding their way to a neurologist.

In the throes of the disease, many families seek out others who might be experiencing something similar. “The support group is helpful, because this can be a very lonely thing,” said Ms. Karger, now 80, who is a co-leader of a support group for caregivers of those with frontotemporal dementia. She paused, then repeated, “it can be very, very lonely.”  

When I visited Ms. Karger’s support group this spring, members shared practical advice. “I’m having trouble getting my wife to shower,” one man said, describing a common manifestation of apathy. “It’s been five weeks.” Another man said he gets his wife to bathe by putting her toe or finger under the faucet first, so the wetness doesn’t feel as foreign. A third person recommended giving up altogether in favor of dry shampoo and baby wipes.  

A man asked about obsessions. With a tinge of humor, people recounted items their partners had fixated on: organizing glasses at a family wedding, aligning dirty dishes at Panera, fluffing pillows. “You could be bleeding to death, and all she’d want to do is rearrange the pillows,” another man said.

A common theme emerged, of partners who become dependents, adults who become like permanent toddlers. I learned of the existence of adult teething toys. A woman complained that her husband, obsessed with putting things in his mouth, could chew through the toys within a day. He broke a tooth on a rock, she told us. 

Sarcasm overtook the conversation when someone brought up social media. People admitted they become jealous looking at photos of “normal” couples on cruises and on the golf course. “Can they really be that happy?” someone asked. Many in the group are living an extreme case of “till death do us part.” They are alone but attached. 

Today, there is new hope for people with Mr. Karger’s disease. “About a quarter of frontotemporal dementia cases are genetic,” said Dr. Grossman, who directs the University of Pennsylvania’s Frontotemporal Dementia Center. In frontotemporal dementia — in contrast to Alzheimer’s disease — we often know what gene is causing the condition and what toxic molecule is accumulating inside the brain. “This allows us to build rational treatments,” Dr. Grossman said.

Firearms and dementia: 'A big deal and a tough issue'

Via JAMA, an October 16 report: Firearms and Dementia: “A Big Deal and a Tough Issue”. Canadians should be thinking about this issue as well. Excerpt:

Emergency physician Emmy Betz, MD, MPH, has yet to treat a gunshot wound inflicted at the hand of an elderly adult with dementia. When she had concerns about patients with dementia and their access to firearms, Betz talked with their caregivers about safety measures. “In those cases, thankfully, the weapons were all locked up,” she said. She’d like to keep it that way.

For Betz, an associate professor of emergency medicine at the University of Colorado School of Medicine in Aurora, those conversations come under the rubric of what she calls patient-centered injury prevention: “How do we, as clinicians, connect with patients to help them prevent injuries and live healthy lives?” By applying that concept to her 2 passions—conducting research on firearm suicide and elderly drivers’ safety—Betz turned her attention to firearms and dementia. In fact, she cofounded the Colorado Firearm Safety Coalition.  

“It’s been a really fascinating area to work in,” she said. Just as elderly adults and their caregivers may agonize over when to give up the car keys, so too do many wrestle with when to put away their guns. “For folks going through this, it can be a really traumatic decision.” 

In an era when 10 000 baby boomers reach age 65 years every day, Betz recently spoke with JAMA about the risks involved when dementia intersects with firearms kept in the home. The following is an edited version of that conversation. 

JAMA: Do you think the risks of gun ownership or living in a home with a gun among people with dementia are underrecognized given that mass shootings attract so much attention? 

Dr Betz: Yes, absolutely. When we look at the overall epidemiology of firearm deaths, suicides account for the majority of deaths. So mass shootings get a ton of attention, understandably so, but when we think about the risks our patients face, more often, it's risks from within the home. People often ask me whether dementia is really such a big problem. For a segment of the population who has someone with dementia and when there's a firearm in the home, it's a big deal and a tough issue. It doesn't affect the broad population the same way, but I do think it's been really underrepresented for how complex it is in that subset of the population.  

JAMA: How common is gun ownership or living in a home with a gun among people with dementia? 

Dr Betz: Prior work suggests somewhere between 40% and 60% of households that have someone with dementia also have a firearm.

Why didn’t she get Alzheimer’s? The answer could hold a key to fighting the disease

Via The New York Times: Why Didn’t She Get Alzheimer’s? The Answer Could Hold a Key to Fighting the Disease. Excerpt:

The woman’s genetic profile showed she would develop Alzheimer’s by the time she turned 50.  

A member of the world’s largest family to suffer from Alzheimer’s, she, like generations of her relatives, was born with a gene mutation that causes people to begin having memory and thinking problems in their 40s and deteriorate rapidly toward death around age 60. 

But remarkably, she experienced no cognitive decline at all until her 70s, nearly three decades later than expected. 

How did that happen? New research provides an answer, one that experts say could change the scientific understanding of Alzheimer’s disease and inspire new ideas about how to prevent and treat it. 

In a study published Monday in the journal Nature Medicine, researchers say the woman, whose name they withheld to protect her privacy, has another mutation that has protected her from dementia even though her brain has developed a major neurological feature of Alzheimer’s disease.

This ultra rare mutation appears to help stave off the disease by minimizing the binding of a particular sugar compound to an important gene. That finding suggests that treatments could be developed to give other people that same protective mechanism.  

“I’m very excited to see this new study come out — the impact is dramatic,” said Dr. Yadong Huang, a senior investigator at Gladstone Institutes, who was not involved in the research. “For both research and therapeutic development, this new finding is very important.” 

A drug or gene therapy would not be available any time soon because scientists first need to replicate the protective mechanism found in this one patient by testing it in laboratory animals and human brain cells. 

Still, this case comes at a time when the Alzheimer’s field is craving new approaches after billions of dollars has been spent on developing and testing treatments and some 200 drug trials have failed. It has been more than 15 years since the last treatment for dementia was approved, and the few drugs available do not work very well for very long.

Towards a literature on Indigenous dementia and reclaiming memory

This is my review of Indigenous Peoples and Dementia: New Understandings of Memory Loss and Memory Care, ed. Wendy Hulko, Danielle Wilson, and Jean Balestrery. UBC Press, 2019.

This is an important book in many ways. It compiles several major recent research articles, each heavily documented, and thereby provides a useful overview of the subject. It brings the Indigenous peoples to the attention of larger communities focused on the dementias, and shows how much in common we all have—and how we vary. And it points the way to a broader literature of dementia by Indigenous writers out of their own experience.

It’s clear that dementia has a strong cultural component—that is, it’s largely a socially determined health condition. The social determinants of dementia are notably powerful for many Indigenous people, but were rarely noticed for the simple reason that most Indigenous people didn’t live long enough to show dementia symptoms. One article argues that Indigenous people are at less risk of dementia if they lack a specific “E4 allele” in their genetic makeup—a component much more often found in Europeans.

Nonetheless, centuries of cultural pressure have combined to set Indigenous people up for a high risk of dementia: psychological stress, poor diet, obesity, little education, high blood pressure, diabetes, smoking, depression, and alcohol. We can’t even call these the consequences of a “lifestyle,” which implies a choice. They are hazards for us all, but they have all been programmed from birth by government policy into the lives of Indigenous Canadians.

One article cites a 2013 study indicating “dementia may be more prevalent among Alberta First Nations than among their non-First Nations counterparts.” The finding echoes recent research into Indigenous Australians, who appear to be experiencing higher dementia rates and at younger ages than non-Indigenous Australians. While many Indigenous Canadians consider memory loss “normal, natural, and accepted,” rather than pathological, they approach prevention differently.

Dementia risk as a social issue

For example, Indigenous communities treat dementia risk as a social issue, not an individual one. Smoking, alcohol, and a poor diet are almost impossible to avoid in many communities, and it’s pointless to blame individuals for their “failure” to break such habits. But if a community can improve its diet by gathering and hunting, so much the better: “food is medicine, and medicine is food.” What’s more, activities like gardening and hunting sustain a range of cognitive skills.

This sensible approach is subverted, however, by Indigenous people’s awareness of “contaminants” in even the most natural foods; 50 years of chronic mercury poisoning at Grassy Narrows is a case in point. Some Indigenous communities can’t go home again.

This puts them in a very difficult place. As another article points out, memory loss can be seen as natural, a closing of the circle of life. But it also means the loss of elders’ experience and wisdom, even of their languages.

One response has been very high tech: a program called CIRCA-BC, for Computer Interactive and Reminiscence Aid. A person with dementia and a conversation partner can use a touch screen “to select photos, short film clips, or music to talk about together.” It’s based on a widely understood principle, that a memory of youth can release still more memories. CIRCA-BC draws on images and sounds from the 1940s to the 60s, including many from the archives of the CBC.

Done as an experiment with a small number of Elders, CIRCA-BC did indeed trigger memories. But the Elders linked it to the impact of colonization on collective memory. As one said: “Everything that people knew in those days, before the Indian school days, it was passed down, passed down, passed down.” Instead, colonization had imposed “other heroes that were building colonies and being imperial.”

Lights out for collective memory

The Elder recalled that alcoholism and disease had also caused a “lights out” for collective memory: “That was our life until the fifties, and then all of that disappeared. So for me it wasn’t just healing residential school, it was healing the advent of drugs and alcohol.”

The distinction between personal and collective memory is one we should all bear in mind: We do not experience the dementias individually, but as members of families, of communities, of nations. Canada’s “settler” communities take their history for granted, which exempts them from needing to know it to know who they are.

But we too begin to sense an absence: who were our great-grandparents, how did they live, what did they value? As we grow older, we begin to realize how little we’ve told our kids and grandchildren about the events and people that shaped us and them, and how much they’re going to have to learn again the way we did—the hard way.

For Indigenous people, evoking the Elders’ memories is not just to make the Elders a little more lucid for a while; it is to recover those memories for the next generation and the generations after them. And so should it be for all of us.

As insightful and important as this book is, it is far from the last word on the subject. Its authors and editors are experts, writing for other experts. A considerable scholarly literature exists, but it too is for other scholars.

What we now need is a new literature of Indigenous writers on dementia, whether from the viewpoint of Elders or of caregivers, describing the impact of age on particular communities and the retrieval of personal and cultural history through the caregiving process.

A precedent exists for such a literature. In 2017 the Cree Board of Health and Social Services published The Sweet Bloods of Eeyou Istchee: Stories of Diabetes and the James Bay Cree. It includes the accounts of almost 30 Indigenous men and women affected by diabetes, and it throws a powerful light on the community that no outside reporter or expert could match.

Similar books, grounded in the experience of individuals and their communities, could give all Indigenous communities insights into their growing problem with the dementias. And the rest of Canada, if it too wants to know itself, could learn from the Indigenous experience.

BC man is one of the first Canadians with dementia to die with medical assistance

Via CBC Radio: B.C. man is one of the first Canadians with dementia to die with medical assistance. Excerpt:

When Canada's medical assistance in dying law was passed in 2016, the widespread assumption — among doctors, lawyers, patients and even MAID providers — was that it excluded those with a dementia diagnosis. 

Gayle Garlock decided to challenge that assumption. On Aug. 26, the Victoria man became one of the first Canadians with a dementia diagnosis publicly reported to have received MAID. 

His case is a sign of a growing consensus that a dementia diagnosis does not necessarily preclude eligibility.   

"In my opinion, the majority of providers in this country have come to the conclusion that patients with dementia can be assessed for an assisted death, that some of them may be eligible in certain circumstances, and if that is the case, they'd be willing to help them," said Dr. Stefanie Green, the head of the Canadian Association of MAID Assessors and Providers (CAMAP).  

If someone with dementia meets the criteria for MAID — mental capacity for informed consent, intolerable suffering, and a foreseeable death — they should be eligible, she said. 

Dementia poses threat to health similar to HIV and Aids, summit told

Via The Guardian: Dementia poses threat to health similar to HIV and Aids, summit told. Excerpt:

Dementia poses a threat to global health on the same scale as HIV and Aids, the Dutch government has said, warning that the number of people with the condition will not be far off the population of Germany by 2030.  

In a speech to the World Dementia Council summit in Japan on Friday, Hugo de Jonge, the Dutch health minister, said dementia was underfunded, misunderstood and overlooked, as HIV and Aids were in their early days. 

“Only when it became clear how quickly the epidemic of HIV/Aids was taking hold … taking millions of lives around the globe, did a global awareness emerge,” De Jonge said. “A huge sense of urgency arose … and around 15 years after the epidemic first took hold, an effective treatment had been found.  

“Today, we are on the verge of another epidemic; not a disease that attacks our immune systems, but our brain, our memory, our personality, ourselves. Like HIV/Aids in its early days, dementia is a globally underfunded area of medicine.”  

He pointed out that if all people believed to have dementia lived in one country, it would be roughly the size of Spain, and cited predictions that by 2030, this hypothetical nation would contain nearly 75 million people. “By then, it should become a member of the G7,” De Jonge said. 

“The costs of dementia care by that time are estimated at a staggering $2tn (£1.6tn). No one should be in any doubt: dementia is one of the biggest medical and social challenges we’ll face in the years ahead. In some countries, it already is the main cause of death.” 

The challenge is particularly relevant in the Netherlands, which has an ageing population of just over 17 million people, 280,000 of whom have some form of neurological impairment such as dementia or Alzheimer’s disease. 

Prof Philip Scheltens, the director of the Alzheimer Centre at UMC teaching hospital in Amsterdam, has lobbied the Dutch government for serious investment in research. 

“The comparison with Aids is often made,” he said. “The urgency is unbelievably huge, as it was at the time, although it might be better to compare it with cancer. There is still no medicine and we need to go back to the drawing board to understand dementia. The worldwide budget must go up.” 

The Netherlands will also call for other countries at the G20 health ministers’ meeting this weekend in Okayama, Japan, to participate in a joint research programme. In July next year, Amsterdam will host a strategy summit for 6,000 researchers.

From dementia to medically assisted death: A Canadian woman’s journey, and the dilemma of the doctors who helped

Via The Globe and Mail: From dementia to medically assisted death: A Canadian woman’s journey, and the dilemma of the doctors who helped. Excerpt:

The speech pathologist turned to Mary Wilson and gestured toward her husband of 52 years. 

“Who’s that?” the pathologist asked.

"Oh, that’s my Bernie,” Ms. Wilson said. “That’s my rock.” 

“And do you know who that is?” the pathologist continued, pointing at Kira Campbell, one of Ms. Wilson’s three devoted children.  

Yes, Ms. Wilson said, she knew her daughter. 

“Do you have any other kids?” the pathologist asked. 

Ms. Wilson paused. Over the past four years, Alzheimer’s disease had stripped the 73-year-old of her ability to drive and tell time and read the morning paper, but it had yet not stolen the memory of her children. 

“Nope,” Ms. Wilson replied. 

It had started. She’d forgotten Kira’s brother and sister. 

The descent into dementia is harrowing under any circumstance, but in Ms. Wilson’s case, every lost word or forgotten name was freighted with significance. That summer, in 2017, she was trying to become one of the first patients in Canada – perhaps the first – to be approved for a medically assisted death for Alzheimer’s disease. But every mental slip made it less likely that Ms. Wilson, a petite former civil servant with a grey pixie haircut and three university degrees, would have the mental capacity to give informed consent for a medically assisted death.

The situation was equally fraught for the doctors who wanted to help her. 

Konia Trouton, a Victoria physician, believed that Ms. Wilson should be eligible to end her life under Canada’s assisted-dying legislation. But she also knew that the law, passed by Justin Trudeau’s Liberal government in 2016, was vague and open to interpretation and, to her knowledge, hadn’t been applied to someone whose only illness was dementia. Some legal experts believed it couldn’t be, for two reasons: patients need the mental capacity to provide consent, and their death needs to be considered “reasonably foreseeable" (although that term is not clearly defined in the legislation). The law seemed clear enough about excluding dementia patients that even the Alzheimer Society of Canada had been telling clients that they could not get an assisted death. 

Dr. Trouton knew that helping Ms. Wilson was risky – and could lead to the loss of her medical licence or worse, a criminal sentence.  

But she and a team of two other physicians believed their patient met the two contentious requirements: She was grievously ill enough to qualify for an assisted death, but not so far gone she couldn’t consent.  

So on Oct. 29, 2017 – at Ms. Wilson’s apartment in Victoria, with her children and Bernie, her rock, beside her – the doctors took a chance and gave her the death she’d been hoping for.  

It was a quiet event that didn’t draw attention or make headlines then, but may now have wide-reaching implications for tens of thousands of Canadians in the early stages of dementia.

A confidential decision by the College of Physicians and Surgeons of British Columbia, which spent 10 months investigating the death, has cleared the three doctors of wrongdoing. 

While the word of one province’s medical regulator is not the same as a judicial precedent, the B.C. College’s position is likely to reassure doctors who fear they might lose their licences if they hasten the deaths of willing and mentally capable dementia patients. 

“One of the reasons [this decision] is so important is because it gives comfort to clinicians,” said Jocelyn Downie, a professor in the faculties of law and medicine at Dalhousie University. “They can see that, okay, the [B.C.] College thinks this is fine.”

Young caregivers put future careers at risk, study shows

Via CBC News: Young caregivers put future careers at risk, study shows. Excerpt:

Caring for their mother, who had dementia, forever changed the lives of Edmonton sisters Elise and Sarah Chamberland.   

"I wasn't really focused on my own life because I was thinking about all the work I had to do for her, and also thinking, 'I don't have a lot of time left with her,' " Elise Chamberland said. 

"It impacts every aspect of your life."  

One in four Canadians aged 15 to 19 helps someone with challenges resulting from illness, disability or aging, according to University of Alberta researchers. Most are in school, and 60 per cent of young caregivers also work.  

While 47 per cent of young caregivers spend less than two hours per week providing care, four per cent provide care 11 to 20 hours per week and six per cent spend more than 21 hours a week helping someone else. The average is six hours per week. 

Prof. Janet Fast and her team in the Department of Human Ecology analyzed data from a 2012 Statistics Canada survey of caregivers. Their study was published Tuesday on the U of A's Research and Aging Policies and Practice website.

Many of them start early," Fast said. "Many of them care for a very long time, and they move in and out of caregiving episodes across their entire life course." 

The Chamberland sisters — Elise, now 31, and Sarah, now 28 — cared for their mother Carrie for about 10 years until she died in June at age 58. 

"She was always in the back of my mind. Every decision I made, everything I did," Sarah said. 

With the help of their father, Claude, Elise and Sarah looked after every detail of Carrie's life.   

"Near the end, we were standing outside the shower, reminding her of what she had to do," Elise said.

The research by Fast and her team shows that young caregivers' education, health, relationships and paid jobs are all affected by their added responsibilities. 

Caregiving came at a cost for the Chamberland sisters.  

"My career took a completely different trajectory because of it all," said Elise, who quit her studies in architecture to move back to Edmonton when her mother's symptoms worsened.  

Sarah delayed purchasing a home for years and worried about the emotional and financial impacts of her decision.  

"There was a lot of guilt involved," she said. "It was kind of risky because I always feared that one day I would maybe have to stop working because I needed to be a full-time caregiver."

‘Eventually I knew she was no longer safe alone’: how do we care for family with dementia?

Guardian health Sarah Boseley has written a long, beautiful article: ‘Eventually I knew she was no longer safe alone’: how do we care for family with dementia? Excerpt:

Dementia used to be dismissed as normal memory loss, a side-effect of ageing. People tended to die of other causes, much younger, so it was less understood. When German psychiatrists Alois Alzheimer and Emil Kraepelin classified it as a disease in the early 20th century, they focused on younger patients. The deterioration of the brain in old age was still regarded as an inevitability. 

But by the mid-50s, US hospitals began to be overwhelmed by elderly dementia patients. Psychiatrists started to frame it as a psychosocial problem, finding that people from some backgrounds, with the same brain changes, did better than others. There were calls for programmes of activities to keep ageing minds stimulated. After Medicare, the US healthcare programme for the over-65s, was founded, people started to live even longer lives – and dementia soared. By 1980, everybody had heard of Alzheimer’s disease. Funds have been poured into research, mostly to find a pill to reverse it, without success.  

Patients like my mum, who get a diagnosis, are prescribed a single drug, supposed to help slow the disease, and sent home. There is nothing more the NHS can do, or afford. Age UK and Alzheimer’s charities offer helpful advice, but you have to seek it out. 

A third of people with dementia are in care homes, which seek to calm and stimulate residents whose memory of the recent past goes first. The walls are lined with photographs of Charlie Chaplin, Ava Gardner, the Queen as a girl. There are wartime singalongs. Living in the past is fine, as are white lies. We take Mum out for ice-cream and cakes at a garden centre, where last time she was overcome by the beauty of the flowers. “I can’t believe it,” she kept saying. We stay in the present moment and talk about the mackerel sky and the planes she thinks are birds. We never talk about dementia.  

The truth used to be served up cold. “Reality orientation” was developed in the late 50s, on the basis that exercising the memory would keep it functioning better for longer. Patients were trained to know the name of the place they were in, what month it was, who the prime minister was – but it was confrontational and insensitive. If people knew that it was Thursday and that they were widowed, it didn’t make them happier.  

Instead the focus moved to cognitive stimulation – gentle activities to keep the brain going, such as word games, puzzles, music, and practical activities such as baking or indoor gardening. A Cochrane medical review in 2012 found that 45-minute sessions at least twice a week helped people with mild to moderate dementia. There was some evidence that people were better able to reason, communicate and interact with others, and had a better quality of life. Such activities are now standard in dementia homes and day centres, along with dancing and gentle exercise and singing, all of which Mum loves. And how else would she spend her time?

Facing life with dementia and discovering a positive path

Via The Guardian, an article by Wendy Mitchell: Facing life with dementia and discovering a positive path. Excerpt:

It was at work where I noticed my first symptoms. I was a non-clinical team leader training matrons and sisters in the art of electronic rostering. My girls called me a workaholic. My brilliant memory, the thing I relied on most, started letting me down badly. 

Simple words failed me in meetings, the names of colleagues I’d worked with for years were suddenly a mystery. I used to take long runs by the river to unwind, but my brain stopped communicating with my legs and I started having falls. I knew somehow that things were not right, but when I finally went to the doctors it took a long time to get the diagnosis. 

Initially my symptoms were dismissed as age or stress related (I was 58), but I was persistent and knew how the system worked. When I finally received the diagnosis, in 2014, it was devastating but it was also, bizarrely, a relief. It finally put an end to all the uncertainties which meant I could now start planning my life with this new, unexpected label attached. 

I was determined to choose a positive path. The very nature of my diagnosis signalled the loss of the old me – my memories, my tastes, my abilities, my plans I took for granted – but, more importantly, it signalled the birth of the new me, a new chance. Many find it hard to believe, but I feel I’ve gained more than I’ve lost.  

I face life with dementia head-on, as though I’m playing a game of chess, waiting for my opponent to make their move, then trying to outmanoeuvre and outwit them. I now own a cat, Billy, which would never have been possible before dementia entered my world, because I used to be terrified of animals. I would cross the road if a cat appeared within 100 yards of me. Not now. Billy is my soul mate. I see him and I instantly feel happy and calm. Now Billy and I often sit and simply stare out over the orchard beyond, watching the birds and enjoying the silence.

So many wonderful opportunities have come my way since I’ve been diagnosed. I refer to them as “the advantages of dementia”. When I explain this to people, they may think I’ve totally lost the plot, but keeping in mind the positives that come out of this kind of diagnosis helps me cope.  

I’m part of many committees and research groups, because that’s how I believe I can influence change. I talk all over the country in many different settings. I call all this my sudoku, exposing my brain to different conversations in different environments. It might not improve my condition, but it certainly slows the progression. My worst weeks are when my calendar is empty, as I know dementia will seep through the lack of activity and win the day. Keeping busy keeps the symptoms at bay.

But it’s not easy. People think I magically appear at events, unaware of the effort and planning that goes into getting anywhere. But I’m not going to stay at home hiding from life, giving into deterioration. The hours I’ve spent checking routes, printing instructions to follow, walking maps – both there and in reverse to get back to the station – the photos of venues and people so I recognise them when I get there and then, of course, the inevitable Plan Bs in case it all goes wrong. All my planning and safety precautions I keep stored in my pink file that goes with me everywhere. Before my diagnosis, I was renowned for being highly organised and that skill has certainly become my life-saver.

Sex-specific differences in end-of-life burdensome interventions and antibiotic therapy in nursing home residents with advanced dementia

Via JAMA Network Open: Sex-Specific Differences in End-of-Life Burdensome Interventions and Antibiotic Therapy in Nursing Home Residents With Advanced Dementia. The key points and abstract:

Key Points 

Question  What are the population-based frequency, factors, and sex-specific differences in burdensome interventions and antibiotic therapy at the very end of life among nursing home residents with advanced dementia? 

Findings  In this population-based cohort study of 27 243 decedent nursing home residents with advanced dementia, men were statistically significantly more likely than women to experience burdensome interventions (ie, transitions of care, invasive procedures, and physical restraints) and receive antibiotics; only a minority of residents saw a palliative care physician in the year before death, but those who did were significantly less likely to experience an end-of-life transition of care and to receive antibiotics. 

Meaning  Study findings underscore the importance of sex-specific analysis in dementia research and the expanding roles of palliative care and antimicrobial stewardship in the nursing home setting. 

Abstract 

Importance  Nursing home residents with advanced dementia have limited life expectancies yet are commonly subjected to burdensome interventions at the very end of life. Whether sex-specific differences in the receipt of these interventions exist and what levels of physical restraints and antibiotics are used in this terminal setting are unknown. 

Objective  To evaluate the population-based frequency, factors, and sex differences in burdensome interventions and antibiotic therapy among nursing home residents with advanced dementia.  

Design, Setting, and Participants  This population-based cohort study from Ontario, Canada, used linked administrative databases held at ICES, including the Continuing Care Resident Reporting System Long-Term Care database, which contains data from the Resident Assessment Instrument Minimum Data Set, version 2.0. Nursing home residents (n = 27 243) with advanced dementia who died between June 1, 2010, and March 31, 2015, at 66 years or older were included in the analysis. Initial statistical analysis was completed in May 2017, and analytical revisions were conducted from November 2018 to January 2019. 

Exposure  Sex of the nursing home resident. 

Main Outcomes and Measures  Burdensome interventions (transitions of care, invasive procedures, and physical restraints) and antibiotic therapy in the last 30 days of life.  

Results  The final cohort included 27 243 nursing home residents with advanced dementia (19 363 [71.1%] women) who died between June 1, 2010, and March 31, 2015, at the median (interquartile range) age of 88 (83-92) years. In the last 30 days of life, burdensome interventions were common, especially among men: 5940 (21.8%) residents were hospitalized (3661 women [18.9%] vs 2279 men [28.9%]; P < .001), 2433 (8.9%) had an emergency department visit (1579 women [8.2%] vs 854 men [10.8%]; P < .001), and 3701 (13.6%) died in an acute care facility (2276 women [11.8%] vs 1425 men [18.1%]; P < .001). Invasive procedures were also common; 2673 residents (9.8%) were attended for life-threatening critical care (1672 women [8.6%] vs 1001 men [12.7%]; P < .001), and 210 (0.8%) received mechanical ventilation (113 women [0.6%] vs 97 men [1.2%]; P < .001). Among the 9844 residents (36.1%) who had a Resident Assessment Instrument Minimum Data Set, version 2.0, completed in the last 30 days of life, 2842 (28.9%) were physically restrained (2002 women [28.3%] vs 840 men [30.4%]; P = .005). More than one-third (9873 [36.2%]) of all residents received an antibiotic (6599 women [34.1%] vs 3264 men [41.4%]; P < .001). In multivariable models, men were more likely to have a transition of care (adjusted odds ratio, 1.41; 95% CI, 1.33-1.49; P < .001) and receive antibiotics (adjusted odds ratio, 1.33; 95% CI, 1.26-1.41; P < .001). Only 3309 residents (12.1%; 2382 women [12.3%] vs 927 men [11.8%]) saw a palliative care physician in the year before death, but those who did experienced greater than 50% lower odds of an end-of-life transition of care (adjusted odds ratio, 0.48; 95% CI, 0.43-0.54); P < .001) and greater than 25% lower odds of receiving antibiotics (adjusted odds ratio, 0.74; 95% CI, 0.68-0.81; P < .001). 

Conclusions and Relevance  In this study, many nursing home residents with advanced dementia, especially men, received burdensome interventions and antibiotics in their final days of life. These findings appear to emphasize the need for sex-specific analysis in dementia research as well as the expansion of palliative care and end-of-life antimicrobial stewardship in nursing homes.

See also this Globe and Mail report on the study.

Is this Langley ‘Village’ the future of dementia care?

The Tyee has published my article Is This Langley ‘Village’ the Future of Dementia Care? Excerpt:

On a hot July day I drove out to Langley, British Columbia, to visit the Village, a new dementia-care facility that opened a few days later on Aug. 5.

While it’s new to Canada, the Village is an established concept in the Netherlands and Denmark: a community in which those with dementia can live something like a familiar life rather than be boxed into a few rooms behind locked doors. It’s an encouraging new direction, but its greatest value may lie in finding ways to make such care available to hundreds of thousands of Canadians in the next few decades. 

The Village, surrounded by Langley’s suburban sprawl, occupies five acres of quiet near Anderson Creek. Just west of busy 200th Street, it seems both secluded and spacious, a cluster of six “cottages” linked by broad walkways to a barn and garden at one end and a reception building (with bistro and general store) at the other. 

Each cottage is designed for 12 residents, looked after by three staff. The residents’ rooms are built around a central space including a kitchen, dining area and social areas. In one social area, an electronic gadget reminds residents, “This is Friday afternoon.” The rooms are a good size, with ensuite bathrooms, and residents can bring their own familiar beds and other furniture. 

 The impression is more that of a well-run B&B than of a home, but it’s certainly more intimate than, say, Trezevant Manor, a very large “retirement community” that houses hundreds of residents in Memphis, Tennessee.

Village residents are free to roam the grounds (wearing a bracelet that can both check their blood pressure and track their whereabouts), drop in to the bistro or shop for snacks, have their hair done, putter in the garden or work in the arts studio. With 75 residents and almost that many staff, no one will be neglected. The barn, one of the Village’s many amenities.

And how much would this cost a resident or their families? The base rate, including meals, laundry and help with bathing and medication, is $7,300 a month. Complex care provides 24-hour nursing care and costs $8,300.  

That would be a showstopper for many families who are looking after an aging parent at home. Add up all the costs of a senior living alone in an apartment with drop-in nursing care, however, and the Village may not look quite as bad.

Association of midlife to late-life blood pressure patterns with incident dementia

Via JAMA: Association of Midlife to Late-Life Blood Pressure Patterns With Incident Dementia.

Key Points 

Question  Are specific midlife to late-life longitudinal blood pressure patterns associated with increased risk of dementia among older adults?  

Finding  In this prospective cohort study that included 4761 participants with 24-year follow-up and blood pressure measurements at midlife and at late life, those with midlife and late-life hypertension (hazard ratio, 1.49) and those with midlife hypertension and late-life hypotension (hazard ratio, 1.62) had higher risk for incident dementia compared with those who remained normotensive. 

Meaning  Patterns of blood pressure in midlife and late life may be associated with differing risks for incident dementia. 

Abstract 

Importance  The association between late-life blood pressure (BP) and cognition may depend on the presence and chronicity of past hypertension. Late-life declines in blood pressure following prolonged hypertension may be associated with poor cognitive outcomes. 

Objective  To examine the association of midlife to late-life BP patterns with subsequent dementia, mild cognitive impairment, and cognitive decline. 

Design, Setting, and Participants  The Atherosclerosis Risk in Communities prospective population-based cohort study enrolled 4761 participants during midlife (visit 1, 1987-1989) and followed-up over 6 visits through 2016-2017 (visit 6). BP was examined over 24 years at 5 in-person visits between visits 1 and 5 (2011-2013). During visits 5 and 6, participants underwent detailed neurocognitive evaluation. The setting was 4 US communities: Washington County, Maryland; Forsyth County, North Carolina; Jackson, Mississippi; and Minneapolis, Minnesota. Follow-up ended on December 31, 2017. 

Exposures  Five groups based on longitudinal patterns of normotension, hypertension (>140/90 mm Hg), and hypotension (<90/60 mm Hg) at visits 1 to 5.  

Main Outcomes and Measures  Primary outcome was dementia onset after visit 5, based on Ascertain Dementia-8 informant questionnaires, Six-Item Screener telephone assessments, hospital discharge and death certificate codes, and the visit 6 neurocognitive evaluation. Secondary outcome was mild cognitive impairment at visit 6, based on the neurocognitive evaluation.  

Results  Among 4761 participants (2821 [59%] women; 979 [21%] black race; visit 5 mean [SD] age, 75 [5] years; visit 1 mean age range, 44-66 years; visit 5 mean age range, 66-90 years), there were 516 (11%) incident dementia cases between visits 5 and 6. The dementia incidence rate for participants with normotension in midlife (n = 833) and late life was 1.31 (95% CI, 1.00-1.72 per 100 person-years); for midlife normotension and late-life hypertension (n = 1559), 1.99 (95% CI, 1.69-2.32 per 100 person-years); for midlife and late-life hypertension (n = 1030), 2.83 (95% CI, 2.40-3.35 per 100 person-years); for midlife normotension and late-life hypotension (n = 927), 2.07 (95% CI, 1.68-2.54 per 100 person-years); and for midlife hypertension and late-life hypotension (n = 389), 4.26 (95% CI, 3.40-5.32 per 100 person-years). Participants in the midlife and late-life hypertension group (hazard ratio [HR], 1.49 [95% CI, 1.06-2.08]) and in the midlife hypertension and late-life hypotension group (HR, 1.62 [95% CI, 1.11-2.37]) had significantly increased risk of subsequent dementia compared with those who remained normotensive. Irrespective of late-life BP, sustained hypertension in midlife was associated with dementia risk (HR, 1.41 [95% CI, 1.17-1.71]). Compared with those who were normotensive in midlife and late life, only participants with midlife hypertension and late-life hypotension had higher risk of mild cognitive impairment (37 affected individuals (odds ratio, 1.65 [95% CI, 1.01-2.69]). There was no significant association of BP patterns with late-life cognitive change. 

Conclusions and Relevance  In this community-based cohort with long-term follow-up, sustained hypertension in midlife to late life and a pattern of midlife hypertension and late-life hypotension, compared with midlife and late-life normal BP, were associated with increased risk for subsequent dementia.

Alzheimer’s and dementia leading cause of death in England and Wales

Via The Guardian: Alzheimer’s and dementia leading cause of death in England and Wales. Excerpt:

Dementia is the biggest health crisis of our time, experts have said, as statistics show the condition was the primary cause of death in England and Wales last year.  

Almost one in eight people died from dementia and Alzheimer’s disease in 2018, with the proportion increasing for the fourth consecutive year – up from 12.7% in 2017 to 12.8% in 2018. There were 541,589 deaths registered in England and Wales last year, the highest total since 1999. 

With the numbers of people living with dementia in the UK expected to rise to 1 million by 2021, campaigners are urging the government to fulfil its pledges on adult social care, including publishing its long-awaited green paper. 

In his first speech as prime minister, Boris Johnson vowed to solve the UK’s social care crisis “once and for all”, asserting that he would protect the elderly from the fear of having to sell their home to pay for the cost of care. 

Sally Copley, the director of policy and campaigns at Alzheimer’s Society, said: “For four years now, we’ve seen deaths caused by dementia increase. We need to take action now to tackle the biggest health crisis of our time. One person develops dementia in the UK every three minutes and there are still far too many facing a future alone, without adequate support. 

“There has never been a more urgent need for the government, the NHS, the research community and society to unite with us against this devastating condition. We need the government to prioritise dementia with a dedicated NHS dementia fund and invest in a plan for long-term social care reform.” 

The increase in the numbers of those developing dementia and Alzheimer’s disease was a result of people living longer, surviving other illnesses and of the syndrome being better understood by doctors, said the Office for National Statistics (ONS) report published on Tuesday. 

But with the number of people with dementia living alone expected to double by 2040, experts say people deserve to see the same life-changing breakthroughs that have benefitted other major disease areas, such as cancer, made in the treatment of dementia.

Ensuring Canada’s first dementia strategy is not shelved and forgotten

An editorial in CMAJ: Ensuring Canada’s first dementia strategy is not shelved and forgotten.

Canada has released its first national dementia strategy with a 5-year $50-million funding commitment. The strategy outlines Canada’s priorities for dementia, including national objectives to prevent dementia, advance therapies, and improve the quality of life of people living with dementia and their caregivers. 

The Canadian strategy is aligned with existing national strategies from all other G7 countries and has notable strengths including a focus on women, caregivers, social isolation and populations facing barriers to equitable care such as Indigenous and LGBTQ2S communities. To deliver on its bold vision of “a Canada in which all people living with dementia and caregivers are valued and supported,” long-term political, financial and societal commitments will be required. 

The effect of dementia on Canadians is staggering. While there are currently more than 564 000 Canadians living with dementia with estimated annual total health care system and out-of-pocket costs of $10.4 billion, these figures are projected to at least double by 2031 as Canadians continue to age. 

To be successful in reducing these effects, Canada’s national strategy can learn from its own provinces and other countries that have struggled to meet the objectives of their dementia strategies because of limited political commitment beyond the initial announcement, insufficient funding, unclear targets and vague implementation plans.

The advancement of dementia research will also be essential. Existing priorities for global dementia research have been criticized for being uninformed by people living with dementia and their caregivers, and for being too prescriptive when considering that dementia remains a progressive and incurable disease for which a complete understanding of its pathophysiology and effective therapies to stop the progression are lacking.  

The national strategy for Canada encourages a more holistic approach to dementia research with public–private and international partnerships to maximize funding and impact. Its research priorities include advancing our fundamental understanding of dementia, developing effective pharmacologic and nonpharmacologic approaches, and innovating better ways to support people living with dementia and their caregivers. The strategy will benefit from greater clarity around future resources, roles and responsibilities, as well as clear timelines and robust metrics.  

It is likely that the $50-million commitment will be inadequate to meet the national strategy’s objectives. The strategy, for example, suggests a benchmark annual investment in dementia research that exceeds 1% of dementia care costs — based on 2016 estimates, this would require more than $100 million in annual research funding. 

However, just 5% of the budget for the Canadian Institutes of Health Research (i.e., $214 million over the last 10 years) has been invested in dementia research, and public research funding for dementia worldwide is at the level of 10% of cancer research. The recent allocation of $46 million over the next 5 years for the Canadian Consortium on Neurodegeneration in Aging will help to advance the research agenda, but a large funding gap persists.  

The national dementia strategy also recognizes that eliminating stigma is a key challenge to its successful implementation. People living with dementia often lead more hidden and isolated lives because of shame and the fear of negative reactions and lack of acceptance from others.

Dementia is still wrongly stereotyped as a normal part of ageing by both the public and practitioners, contributing to less than 1 in 4 people with dementia receiving a diagnosis worldwide. Stigmatization extends to the Canadian health care system, where people living with dementia experience delays or barriers to equitable care.  

Overcoming stigma is seen by many as the first key step in global efforts against dementia, but making meaningful progress has been challenging. Future efforts must recognize and target the “double stigma” of ageism and dementia-related discrimination, and should also address existing gender biases. Women account for two-thirds of all older Canadians living with dementia and for most of the unpaid family and friend caregivers.

The current state of dementia has parallels to the one that confronted HIV/AIDS in the early 1980s. On the heels of incredible advocacy efforts that applied moral and political pressure to governments, clinicians and researchers worldwide, HIV/AIDS was transformed from a highly stigmatized and incurable disease into a normalized and treatable chronic condition. 

Achieving the same for Canadians who are and will be affected by dementia is possible but only with sustained political will, adequate funding, measurable targets and a commitment from all Canadians to achieve the goals of our new national strategy.

Alzheimer’s test predicts onset up to 20 years in advance

Via The Guardian: Alzheimer’s test predicts onset up to 20 years in advance. Excerpt:

A blood test that can detect signs of Alzheimer’s as much as 20 years before the disease begins to have a debilitating effect has been developed by researchers in the US. 

Scientists at the Washington University School of Medicine in St Louis in Missouri believe the test can identify changes in the brain suggestive of Alzheimer’s with 94% accuracy, while being much cheaper and simpler than a PET brain scan. 

The results of the study, which was published in the journal Neurology on Thursday, represent a potential breakthrough in the fight against the disease. 

“Right now we screen people for clinical trials with brain scans, which is time-consuming and expensive, and enrolling participants takes years,” said the senior author, Randall Bateman, a leading professor of neurology.  

“But with a blood test, we could potentially screen thousands of people a month. That means we can more efficiently enrol participants in clinical trials, which will help us find treatments faster, and could have an enormous impact on the cost of the disease as well as the human suffering that goes with it.”  

The researchers said they had found a way to measure levels of the protein amyloid beta, a key indicator of Alzheimer’s, in the blood. They can then use such levels to predict whether the protein has accumulated in the brain.  

That analysis could then be combined with two other major Alzheimer’s risk factors – age and the presence of the genetic variant APOE4 – to accurately identify the relevant changes in the brain.  

The researchers said the clumps of protein begin to form in the brain up to two decades before the onset of the characteristic memory loss, suggesting the tests could be used to predict Alzheimer’s years in advance. 

However, the benefits of such testing would not be seen to their fullest extent until treatments to halt the disease are developed.

Wendy Mitchell: For those living with dementia, we need hope—research gives us that hope

An opinion piece in The BMJ: Wendy Mitchell: For those living with dementia, we need hope—research gives us that hope.

That sad look, those haunting words, “there’s nothing we can do . . . ” still trouble me now, some years on. They are a devastating reminder of the damage that can so easily be done when the focus is on the medicalised world instead of the patient’s new world. 

I’ve no doubt that continually having to give a diagnosis of dementia can be demoralising for a clinician. After all, there’s been no new drug treatments for over 20 years now. It’s not a “sexy” area to research, though undoubtedly any major breakthrough will win a desired accolade in the history books. 

So I can imagine how the clinician feels. They must be sad that there’s nothing they can do for their patient who is expressing their own sadness in a way only they know. But if the clinician feels sad, how do you think the patient feels?  

So how about turning this diagnosis around and looking at it from the patient’s perspective? Instead of the sad pitying look and words of “nothing we can do,” how about this instead:  

“Yes, the diagnosis is that of dementia and not something anybody would wish to have. But think of it as the start of a different way of living; a way of adapting. I may not be able to offer any treatment but I can offer help and there is still so much you can do, albeit differently and with support.”  

Yes, it would take a few more seconds to relay, and the expression would need to change from sad to hopeful, but how different I would have felt if I’d left the room with these words ringing in my ears. The psychological effect of words, facial expressions, and body language should never be underestimated.  

If someone in a position of high regard, such as a doctor, looks at us with sadness and states that there is nothing that can be done, we have a tendency to believe them. We go away despondent and believing it to be the end. It doesn’t have to be that way.  

Let’s not forget also that there is something clinicians can offer alongside support—and that’s the opportunity to be involved in research. I know researchers can find it very difficult to find people willing to take part. This may be due to overprotective clinicians, or overprotective family and friends, but may also simply be due to lack of understanding around the meaning of research and what it entails. 

As soon as I was diagnosed with dementia I wanted to take part in research—after all, there is no cure and a diagnosis of a progressive, debilitating, terminal illness focuses the mind on the here and now. Being involved in research was a no brainer for me—if you’ll pardon the pun. Being involved helps improve my sense of wellbeing because I know I may be contributing to removing the inevitability that a diagnosis currently brings—this will in turn bring hope to my daughters and other young people. 

Without research we can’t change the future. For those of us living with dementia, we need hope and research gives us that hope.  

Each month I give a talk about the importance of embracing research to all new NHS staff at the Humber Trust Induction day. The audience is made up of many specialties, from clinical to admin. I say to them: 

“You may be sat there thinking, well what’s research got to do with me, it’s not part of my job. But we have to normalise talking about research and to do this we must have every healthcare professional, no matter what their job, to come on board and  promote research.” 

I also say to them, “If you don’t think research affects you, you may change your mind if you or someone close to you was given that devastating diagnosis of dementia or any devastating diagnosis.” 

Social and technological research is equally as important as clinical drug trials, especially for those of us living with dementia now. We have to find the best ways to live and adapt to the disease and we have to find the best ways to care for people who can no longer care for themselves.  

We have to normalise talking about research and to do this we must have consultants, GPs, district nurses or occupational therapists, physiotherapists, in fact any healthcare professional all coming on board. To normalise talking about research would normalise involvement.  

So the next time any clinician thinks there’s nothing they can do, please think again.

Ontario man with dementia on crusade to plan his own death

Via the CBC Radio program The Sunday Edition: Ontario man with dementia on crusade to plan his own death. Excerpt:

Update July 12, 2019: After this story was broadcast in 2018, Ron Posno received more than 3,000 letters and emails of support from listeners across the country. He continues to volunteer on behalf of Dying with Dignity Canada and to speak publicly about living with dementia. On June 8, 2019, Ron addressed the board of the Alzheimer Society of Canada. He is still fighting for advanced directives for medical assistance in dying to be recognized. 

Original story published on Sept. 30, 2018 runs below. 

A London, Ont., man in the early stages of dementia wants the right to end his life with medical assistance when his condition gets worse. 

"I want my death to occur at the beginning of the severe stage of Alzheimer's, and not the end," Ron Posno, 79, told The Sunday Edition's Alisa Siegel. 

But unless the law changes, he will not be eligible for an assisted death.  

In 2016, changes to the Criminal Code made medical assistance in dying available to competent adults with a serious and incurable illness or disability, in an advanced state of irreversible decline, with a reasonably foreseeable death.

Assisted death is not available to children or people with mental illnesses. Most importantly to Posno, the law makes no provision for advance requests — effectively excluding people with Alzheimer's and dementia. 

The individual must confirm their wish to proceed at the time of the assisted death. 

"Just before they administer the drugs … the doctor has to ask you at the last possible minute, 'Do you still want assisted death?'" said Posno. "When he asks that question, I have to be mentally competent enough to be able to answer it. Dementia people can't do it at the last minute."

Association of lifespan cognitive reserve indicator with dementia risk in the presence of brain pathologies

Via JAMA Neurology: Association of Lifespan Cognitive Reserve Indicator With Dementia Risk in the Presence of Brain Pathologies | Dementia and Cognitive Impairment. The key points and abstract: 

Key Points 

Question  Is high lifespan cognitive reserve (CR) indicator associated with a reduction in dementia risk, and how strong is this association in the presence of high brain pathologies? 

Findings  In this cohort study including 1602 dementia-free older adults, high lifespan CR was associated with a decreased risk of dementia. This association was present in people with high Alzheimer disease and vascular pathologies.  

Meaning  Accumulative educational and mentally stimulating activities enhancing CR throughout life might be a feasible strategy to prevent dementia, even for people with high brain pathologies. 

Abstract 

Importance  Evidence on the association of lifespan cognitive reserve (CR) with dementia is limited, and the strength of this association in the presence of brain pathologies is unknown. 

Objective  To examine the association of lifespan CR with dementia risk, taking brain pathologies into account.  

Design, Setting, and Participants  This study used data from 2022 participants in the Rush Memory and Aging Project, an ongoing community-based cohort study with annual follow-up from 1997 to 2018 (mean follow-up, 6 years; maximum follow-up, 20 years). After excluding 420 individuals who had prevalent dementia, missing data on CR, or dropped out, 1602 dementia-free adults were identified at baseline and evaluated to detect incident dementia. During follow-up, 611 died and underwent autopsies. Data were analyzed from May to September 2018. 

Exposures  Information on CR factors (education; early-life, midlife, and late-life cognitive activities; and social activities in late life) was obtained at baseline. Based on these factors, lifespan CR scores were captured using a latent variable from a structural equation model and was divided into tertiles (lowest, middle, and highest). 

Main Outcomes and Measures  Dementia was diagnosed following international criteria. Neuropathologic evaluations for Alzheimer disease and other brain pathologies were performed in autopsied participants. The association of lifespan CR with dementia or brain pathologies was estimated using Cox regression models or logistic regression.  

Results  Of the 1602 included participants, 1216 (75.9%) were women, and the mean (SD) age was 79.6 (7.5) years. During follow-up, 386 participants developed dementia (24.1%), including 357 participants with Alzheimer disease–related dementia (22.3%). The multiadjusted hazards ratios (HRs) of dementia were 0.77 (95% CI, 0.59-0.99) for participants in the middle CR score tertile and 0.61 (95% CI, 0.47-0.81) for those in the highest CR score tertile compared with those in the lowest CR score tertile. In autopsied participants, CR was not associated with most brain pathologies, and the association of CR with dementia remained significant after additional adjustment for brain pathologies (HR, 0.60; 95% CI, 0.42-0.86). The highest CR score tertile was associated with a reduction in dementia risk, even among participants with high Alzheimer disease pathology (HR, 0.57; 95% CI, 0.37-0.87) and any gross infarcts (HR, 0.34; 95% CI, 0.18-0.62).  

Conclusions and Relevance  High lifespan CR is associated with a reduction in dementia risk, even in the presence of high brain pathologies. Our findings highlight the importance of lifespan CR accumulation in dementia prevention.

UK: People with dementia have spent billions of their own money waiting for government care solution

Via carehome.co.uk: People with dementia have spent billions of their own money waiting for government care solution.

Alzheimer’s Society reveals people living with dementia have spent almost £15 billion of their own money in the last two years waiting for the government to reform social care.

In the two-year period, the total number of people over 65 diagnosed with dementia has increased by 33,000 in England, adding significantly to all those struggling to get the dementia care they need. 

Alzheimer’s Society’s analysis builds on a damning picture supported by a number of recent reports including the new ADASS budget survey, and Healthwatch dementia care review report. 

All the evidence shows that, since the promise of the green paper on social care reform in March 2017, the dementia care crisis has reached absolute breaking point – and is financially punishing people with dementia, their families, as well as the NHS.  

Jeremy Hughes, chief executive of Alzheimer’s Society, said: “This shocking sum of money spent by people with dementia over the last two years trying to get access to the care and support they desperately need is utterly unacceptable.  

“And the amount and quality of care they’re getting for it – those who can afford it - just isn’t good enough. The results are people with dementia and their families falling victim to this dreadfully broken system.”  

Alzheimer’s Society has organised a photo exhibition of 12 families in Parliament today exposing the appalling reality so many families affected by dementia across the country face. These stories include a woman who couldn’t leave hospital because she still didn’t have a care assessment after a year of waiting. The exhibition reveals the awful circumstances people find themselves in due to the failing system. 

’Hundreds of thousands of people affected by dementia in this country are facing financial punishment’ 

Phillip Scott, 59, from London, attending the exhibition said: “When my mum was diagnosed with dementia at 82, she received little support from health professionals, and my sister and I did not receive any guidance on what was to come. 

“After social services moved her into a care home it was only paid for by the local authority for the first six weeks. After that, my mum had to become self-funding for her care. After all of my mum’s savings were used up, we had to use the proceeds from the sale of her home.  

“It took three attempts before we managed to get continuing health care funding for her. The whole process of having to argue again and again why my mum needed support was really harrowing. Even now, they have come back several times to reassess her, and we are afraid that the funding will be taken away. In total, we have spent around £160,000 on my mum's care.” 

Jeremy Hughes added: “Like the families in our exhibition, hundreds of thousands of people affected by dementia in this country are facing financial punishment, just because they happened to develop dementia and not some other disease. The evidence of the gross inequity continues to pile up, and yet still the Government does nothing.  

“We need an immediate cash injection through a dedicated dementia fund, while the government works out a long-term solution to finally end this crisis in care. With diagnosis rates of dementia at an all-time high, action can’t come soon enough.” 

Alzheimer's Society is calling for urgent investment in a dedicated £2.4 billion dementia fund to end the dementia penalty people face when paying for care.  

The dementia fund would sit within the NHS - Alzheimer’s Society recommends that the money for the fund should come from the so far £3.5bn unallocated funding for community care attached to the NHS long-term plan. The fund would cover the additional social care costs people with dementia are asked to pay because of the complexity of their health condition. 

Since the announcement of the social care green paper in March 2017, there have been six delays to its release. The document is promised to lay out a long-term funding solution for the social care crisis, but there is still no sign of when it is due to be published.