The Politics of Dementia

Gait variability across neurodegenerative and cognitive disorders

Via Alzheimer's & Dementia: Gait variability across neurodegenerative and cognitive disorders: Results from the Canadian Consortium of Neurodegeneration in Aging (CCNA) and the Gait and Brain Study. The abstract:

Introduction 

Gait impairment is common in neurodegenerative disorders. Specifically, gait variability—the stride‐to‐stride fluctuations in distance and time—has been associated with neurodegeneration and cognitive impairment. However, quantitative comparisons of gait impairments across the cognitive spectrum of dementias have not been systematically investigated. 

Methods 

Older adults (N = 500) with subjective cognitive impairment, Parkinson disease (PD), mild cognitive impairment (MCI), PD‐MCI, Alzheimer's disease (AD), PD‐dementia, Lewy body dementia, and frontotemporal dementia, as well cognitive normal controls, who were assessed for their gait and cognitive performance. 

Results 

Factor analyses grouped 11 quantitative gait parameters and identified four independent gait domains: rhythm, pace, variability, and postural control, for group comparisons and classification analysis. Among these domains, only high gait variability was associated with lower cognitive performance and accurately discriminated AD from other neurodegenerative and cognitive conditions. 

Discussion 

Our findings indicate that high gait variability is a marker of cognitive‐cortical dysfunction, which can help to identify Alzheimer's disease dementia.

COVID-19: ‘We are going to keep you safe, even if it kills your spirit’

An opinion piece in The New York Times: ‘We Are Going to Keep You Safe, Even if It Kills Your Spirit’. Excerpt:

On a recent morning, Bill Williams, 87, awoke to learn of a terrible virus that had spread everywhere and was killing people. “Well, we’ve got this virus,” an aide at his nursing home in Broken Bow, Neb., told him. A few minutes later, he had forgotten about the virus, and so the nursing aide told him again. And then again. She would have to tell him the next day, too. 

“It’s pretty quiet in here,” Mr. Williams said, biting the inside of his lip a little. 

“Well, we’ve got this virus.” 

On most days, after Mr. Williams forgets again about the virus, he gets out of his armchair and into his wheelchair and goes down the hallway at Brookestone View Skilled Nursing and Rehabilitation. Like other residents with Alzheimer’s disease or dementia, he is “noncompliant” with mask-wearing protocols. He says the masks fog up his glasses. Or he thinks: What mask? He is also “noncompliant” with social-distancing measures. 

In other care facilities and in hospitals, too, “wanderers” with dementia are believed to have spread the virus and caused outbreaks — but what are administrators to do? They can’t just lock people up. 

“Stay in your room,” the nursing aides tell Mr. Williams. But he doesn’t stay. Whenever he gets out, an aide redirects him back to his armchair. Then again and again, until someone gets exasperated and lets him sit in the hallway for a while, so that he can watch the comings and goings. 

Because the thing is, it’s boring to sit in an armchair all day — even though Mr. Williams, a former crop duster, likes to watch planes taking off from a nearby airstrip, through his window. The dining hall is closed. Visitors are mostly prohibited. “Life enrichment” activities, like bingo, have been canceled. Mr. Williams knows that the choreography of the nursing home is off, but he isn’t sure why. “Everybody got busy doing stuff, I guess,” he told me.

People with dementia at higher risk for COVID-19, study finds: Research documents more cases, hospitalizations and deaths

Via ScienceDaily.com: People with dementia at higher risk for COVID-19, study finds: Research documents more cases, hospitalizations and deaths, with odds of both infection and worse outcomes higher for African Americans. Excerpt:

A study led by Case Western Reserve University researchers found that patients with dementia were at a significantly increased risk for COVID-19 -- and the risk was higher still for African Americans with dementia. 

Reviewing electronic health records of 61.9 million adults in the United States, researchers found the risk of contracting COVID-19 was twice as high for patients with dementia than for those without it -- while among those with dementia, African Americans had close to three times the risk of being infected with COVID-19 as Caucasians did. 

In addition, patients with dementia who contracted COVID-19 had significantly worse outcomes in terms of hospitalizations and deaths than those who had COVID-19 but not dementia. The study was published Feb. 9 by the peer-reviewed Alzheimer's & Dementia: The Journal of the Alzheimer's Association and highlights the need to protect people with dementia -- particularly African Americans -- as part of the strategy to control the pandemic. 

An estimated 5.8 million Americans age 65 and older and 50 million people worldwide are living with Alzheimer's and other dementias, according to the Alzheimer's Association. 

"Our results emphasize how important it is to protect those with dementia from acquiring SARS-CoV2, for they are at higher risk for severe disease than those without dementia," said study co-author Pamela Davis, dean emerita of the Case Western Reserve School of Medicine. "These patients may constitute another vulnerable category. However, more work is required to understand the mechanism by which this occurs."

The chronic neuropsychiatric sequelae of COVID‐19: The need for a prospective study of viral impact on brain functioning

Via Alzheimer's & Dementia: The chronic neuropsychiatric sequelae of COVID‐19: The need for a prospective study of viral impact on brain functioning. The abstract:

Introduction 

The increasing evidence of SARS‐CoV‐2 impact on the central nervous system (CNS) raises key questions on its impact for risk of later life cognitive decline, Alzheimer's disease (AD), and other dementia.  

Methods 

The Alzheimer's Association and representatives from more than 30 countries—with technical guidance from the World Health Organization—have formed an international consortium to study the short‐and long‐term consequences of SARS‐CoV‐2 on the CNS—including the underlying biology that may contribute to AD and other dementias. This consortium will link teams from around the world covering more than 22 million COVID‐19 cases to enroll two groups of individuals including people with disease, to be evaluated for follow‐up evaluations at 6, 9, and 18 months, and people who are already enrolled in existing international research studies to add additional measures and markers of their underlying biology. 

Conclusions 

The increasing evidence and understanding of SARS‐CoV‐2's impact on the CNS raises key questions on the impact for risk of later life cognitive decline, AD, and other dementia. This program of studies aims to better understand the long‐term consequences that may impact the brain, cognition, and functioning—including the underlying biology that may contribute to AD and other dementias.

See also this report from NPR.

Money trouble can precede dementia diagnosis by years, study finds

Via The Washington Post: Money trouble can precede dementia diagnosis by years, study finds. Excerpt:

The anecdotes Lauren Nicholas was hearing were all similarly alarming: People with dementia were experiencing “catastrophic financial events” — often before they or their loves ones knew there was anything wrong with them. 

“Once you miss a bunch of payments, the bank owns your house or you can’t get credit anymore, so I think we were kind of concerned about why this is able to happen,” said Nicholas, a health economist and associate professor at the Johns Hopkins Bloomberg School of Public Health. Deteriorating financial capabilities have long been considered one of the earliest signs of cognitive decline, but Nicholas noted that experts still had “relatively limited understanding of how frequent it is and when it’s happening.”  

New research published Monday by Nicholas in collaboration with experts from the Federal Reserve Board of Governors and the University of Michigan Medical School suggests that adverse financial events associated with Alzheimer’s disease and related dementias, or ADRD, can start happening years before people are clinically diagnosed. 

The study, published in JAMA Internal Medicine, is described by the researchers as one of the first of its kind to connect the health data of more than 80,000 Medicare beneficiaries with federal consumer credit reports.Its findings, according to the researchers, could potentially have broad implications on health and financial policies while also highlighting the potential benefits of early detection of conditions that are estimated to affect almost 15 percent of American older than 70.  

“Some of these financial symptoms are popping up as early as six years before formal clinical diagnosis,” said Nicholas, the study’s lead author. “That suggests that it actually does affect your life for a lot longer than we thought, and that even if we can’t slow the cognitive impacts, we can still protect you from some of the financial losses.”

Are infections seeding some cases of Alzheimer’s disease?

Via Nature.com: Are infections seeding some cases of Alzheimer’s disease?.

Two years ago, immunologist and medical-publishing entrepreneur Leslie Norins offered to award US$1 million of his own money to any scientist who could prove that Alzheimer’s disease was caused by a germ.  

The theory that an infection might cause this form of dementia has been rumbling for decades on the fringes of neuroscience research. The majority of Alzheimer’s researchers, backed by a huge volume of evidence, think instead that the key culprits are sticky molecules in the brain called amyloids, which clump into plaques and cause inflammation, killing neurons. 

Norins wanted to reward work that would make the infection idea more persuasive. The amyloid hypothesis has become “the one acceptable and supportable belief of the Established Church of Conventional Wisdom”, says Norins. “The few pioneers who did look at microbes and published papers were ridiculed or ignored.”  

In large part, this was because some early proponents of the infection theory saw it as a replacement for the amyloid hypothesis. But some recent research has provided intriguing hints that the two ideas could fit together — that infection could seed some cases of Alzheimer’s disease by triggering the production of amyloid clumps. 

The data hint at a radical role for amyloid in neurons. Instead of just being a toxic waste product, amyloid might have an important job of its own: helping to protect the brain from infection. But age or genetics can interrupt the checks and balances in the system, turning amyloid from defender into villain. 

And that idea suggests new avenues to explore for potential therapies. To test the theory further, scientists are now developing animal models that mimic Alzheimer’s disease more closely. “We are taking the ideas seriously,” says neuroscientist Bart de Strooper, director of the UK Dementia Research Institute at University College London.  

Choked by clumps 

The amyloid hypothesis holds that Alzheimer’s results from a build-up of sticky, soluble proteins — amyloid-β peptides — in the spaces between brain cells. These peptides are cleaved from another protein embedded in the membranes of neurons. Once floating free, they clump together into larger structures which, if not cleared efficiently enough by special enzymes, aggregate into plaques. The plaques then trigger a deadly cascade: they provoke neuroinflammation and spawn bundles of stringy proteins called tau tangles. Faced with this litany of insults, neurons die. 

Critics of the hypothesis note that the brains of many people who did not have Alzheimer’s disease have been shown to contain plaques on post-mortem. And they point to the failure of many clinical trials of treatments designed to dissolve amyloid plaques, none of which has slowed the disease. Researchers who support the amyloid theory counter that although the density of the plaques varies a lot between individuals, the density of tau tangles that they trigger correlates tightly with the severity of disease. And clinical trials probably failed, they say, because the treatments were given too late in the course of disease. 

They also have strong evidence on their side. There are certain rare and aggressive forms of Alzheimer’s disease that emerge early — between the ages of 30 and 60 — and run in families; these conditions are caused by mutations in genes that govern the amyloid-making process and inflammation in the brain. Scores of other genes have been associated with the risk of the more common late-onset form of the disease. Several code for proteins that comprise elements of the amyloid cascade, and some are involved in the innate immune system — a group of mechanisms that activate quickly to prevent the spread of pathogens in the body, and which drive inflammation.  

Agents of infection 

Researchers hoping to test the infection hypothesis have gone hunting for microbes in thousands of post-mortem brains from people with Alzheimer’s. In many, they have found them. “But these studies only show correlations which may have explanations that have nothing to do with mechanisms,” says de Strooper.  

Ruth Itzhaki, a biophysicist at the University of Manchester, UK, who reported observations of herpes simplex virus 1 (HSV1) in post-mortem Alzheimer’s brains in the 1990s1, bristles at such criticisms. She thinks that the presence of microbes in the brain must indicate a role for them, and she and others think they have good evidence that viruses are a linchpin in Alzheimer’s. “Most of us always acknowledged that amyloid was a very important feature of Alzheimer’s — but it is just not the cause,” she says.

'Dementia in football is rife and the game is not doing enough to help'

Via The Guardian: 'Dementia in football is rife and the game is not doing enough to help'. Excerpt:

Ten days ago the Chilton family were at breaking point. Chris Chilton, 77, was diagnosed with Alzheimer’s disease and vascular dementia in 2012. Eight years later he needs a level of care his family cannot afford. 

They did not know where to turn, or what to do. They felt utterly alone. This even though he was one of the best forwards in England in the 1960s. He scored a record 222 goals for Hull City, where he formed a famous strike partnership with Ken Wagstaff. The Professional Footballers’ Association (PFA) paid for Chilton to spend four weeks in a care home and the family had pulled together enough from their savings to pay for a fortnight more. But that was about to run out.  

“We couldn’t just keep limping along like this,” says his son Gary. His mother, Margaret, is 72, and has health problems of her own. Chris had been caring for her until he became ill. So Gary, who stayed nearby to help, decided it was time to sell his house and use the money to pay for care. “I said we’ll get maybe £100,000 and we’ll do it that way.” It was either that or else he would have to quit his job and move in to be a full-time carer. 

It was Wagstaff’s daughter, Francesca Sharp, who found a solution. “She popped in to see me and my mum,” Gary says. “And she just looked at us and said: ‘You two look like you’re finished.’ And we are, to be honest. My dad’s at a stage now where he needs more than we can give him. 

“We’ve tried to get through the last eight years as best we can on our own, keeping him at home. But we’ve got to that point now where he’s lost all the skills you learn when you’re a little child. It’s like looking after a five-year-old again basically, but a five-year-old who can pick up knives and leave the gas burner on, or put lit cigarettes in the bin.”  

Wagstaff set up a GoFundMe page. In seven days it raised more than £30,000. “The support from fans, locally, nationally, and abroad, has blown us away,” Gary says. “My dad was quite a humble bloke, never sought the limelight. He’s got quite a career behind him, with all those records, but this has been unbelievable, a show of love and support we never ever thought we’d see.” 

Some former Hull players helped out – Nick Barmby, Steve McClaren, Dean Windass – and so did some famous fans, such as Sir Tom Courtenay, who has supported Hull since he was a boy. The club launched a clothing and merchandise line, the 222 Collection, and donated the proceeds. 

“You can understand,” Gary says, “it’s been a very emotional week.” But those emotions are bittersweet. Because you have to ask why the family are relying on crowdfunding, and whether the football authorities could be doing more to support them instead of leaving it to the fans.  

Chilton’s illness has never been officially tied to his career but the family believe there is a link; that, like so many of the men he played with and against, he is living with dementia caused by playing football. 

“We’ve talked about it, me and my mum and my sister,” Gary says. “Dad was a big, old-school No 9, heading was his forte and the balls they played with were just absolutely brutal.”  

Gary describes his dad as “a very similar sort of player to Jeff Astle”. Chilton was also a teammate of Alan Jarvis. Astle and Jarvis had dementia caused by heading the ball and coroners ruled both men were killed by an industrial disease. “Just like a miner,” says Gary. Nobby Stiles, who died on Friday, also had dementia. And on Sunday Sir Bobby Charlton’s wife, Norma, confirmed he has the condition, too. 

“It feels like it’s rife, absolutely rife,” Gary says. “It’s not just that England team from 66; quite a few of the Hull City side my dad played in have it too. Dad’s in the pot of players from that era who have this illness and that pot is getting bigger all the time. Like it’s rampant and it’s absolutely devastating for families. It’s torn ours apart. It’s such a cruel, cruel disease, just absolutely evil. 

“And for football it is the big elephant in the room. And the authorities are doing their best to divert attention away from it by giving little soothers to keep families pleasant, like a ‘you’re OK’ type of thing.”

Long-term effects of PM2·5 on neurological disorders in the American Medicare population: A longitudinal cohort study

Via The Lancet Planetary Health: Long-term effects of PM2·5 on neurological disorders in the American Medicare population: a longitudinal cohort study.

Background 

Accumulating evidence links fine particulate matter (PM2·5) to premature mortality, cardiovascular disease, and respiratory disease. However, less is known about the influence of PM2·5 on neurological disorders. We aimed to investigate the effect of long-term PM2·5 exposure on development of Parkinson's disease or Alzheimer's disease and related dementias. 

Methods 

We did a longitudinal cohort study in which we constructed a population-based nationwide open cohort including all fee-for-service Medicare beneficiaries (aged ≥65 years) in the contiguous United States (2000–16) with no exclusions. We assigned PM2·5 postal code (ie, ZIP code) concentrations based on mean annual predictions from a high-resolution model. To accommodate our very large dataset, we applied Cox-equivalent Poisson models with parallel computing to estimate hazard ratios (HRs) for first hospital admission for Parkinson's disease or Alzheimer's disease and related dementias, adjusting for potential confounders in the health models. 

Findings 

Between Jan 1, 2000, and Dec 31, 2016, of 63 038 019 individuals who were aged 65 years or older during the study period, we identified 1·0 million cases of Parkinson's disease and 3·4 million cases of Alzheimer's disease and related dementias based on primary and secondary diagnosis billing codes. For each 5 μg/m3 increase in annual PM2·5 concentrations, the HR was 1·13 (95% CI 1·12–1·14) for first hospital admission for Parkinson's disease and 1·13 (1·12–1·14) for first hospital admission for Alzheimer's disease and related dementias. For both outcomes, there was strong evidence of linearity at PM2·5 concentrations less than 16 μg/m3 (95th percentile of the PM2·5 distribution), followed by a plateaued association with increasingly larger confidence bands. 

Interpretation 

We provide evidence that exposure to annual mean PM2·5 in the USA is significantly associated with an increased hazard of first hospital admission with Parkinson's disease and Alzheimer's disease and related dementias. For the ageing American population, improving air quality to reduce PM2·5 concentrations to less than current national standards could yield substantial health benefits by reducing the burden of neurological disorders.

Dementia deaths rise during the summer of COVID-19, leading to concern

Via The Conversation: Dementia deaths rise during the summer of COVID, leading to concern. Excerpt:

Deaths from dementia during the summer of 2020 are nearly 20% higher than the number of dementia-related deaths during that time in previous years, and experts don’t yet know why. An estimated 61,000 people have died from dementia, which is 11,000 more than usual within that period. 

“There’s something wrong, there’s something going on and it needs to be sorted out,” Robert Anderson, chief of mortality statistics at the U.S. Centers for Disease Control and Prevention, said in a recent interview with Politico. “This is highly unusual.”  

As a geriatrician, I find this statistic sad but not shocking. I care for dementia patients in my clinical practice. I see firsthand how the isolation caused by the pandemic has changed their lives, whether they’re home alone, living with a caregiver, or in a long-term care facility. 

Deciphering the statistics is a challenge. Hiding within them are many factors that have contributed to the deaths from dementia during the pandemic. Here are four of them. 

Social isolation 

Social distancing – or staying at least 6 feet apart, wearing a mask and avoiding crowds – is a proven way to decrease COVID-19 risk, especially from people with the infection but without symptoms. But social distancing is different from social isolation, which leads to a sense of disconnection from the community. 

Social isolation, which essentially is little or no contact with others, is the last thing seniors with dementia need. But it’s what many have received, as caregivers are forced to limit visits during the pandemic. Social isolation is a risk for poor health outcomes, particularly as people age. And in the U.S., 28% of those over 65 (13.8 million) live alone. Socially isolated people have higher rates of not only dementia, but heart disease, high blood pressure, depression, cognitive decline and death. 

Caregiver burnout 

On the best of days, caregiving for a family member with dementia is difficult. Watching the decline of a loved one is hard. Having to help them with things that are basic and personal makes it even harder. The commitment, 24 hours a day, offers little time for breaks. Often the caregiver, unsung and overlooked, is suffering.  

And during COVID-19, caregivers have been isolated too. What help they had from the outside is now probably gone. Burnout becomes more likely. For dementia patients to get the best care, their caregivers also need care and support. 

Decreased access to medical care 

Throughout the U.S., hospitals and clinics have seen fewer people coming in. Many missed visits were for preventive care and treatment of chronic conditions. For dementia patients, accessing care may even be more problematic. Telemedicine, often an option for other patients, may not be manageable for those with dementia. Physicians and staff need to reach out to them. And agencies and volunteer groups are available in many communities to assist seniors who need access to technology.  

Staying home 

Because of COVID-19, some of my patients choose to stay home. They’ve decided a medical issue is not worth the risk of leaving the house. I also have patients living in facilities who choose to use the care available there instead of going to the hospital. This is a good example of something we doctors call goal-concordant care: when doctors understand a patient’s health goals, and then provide them with the best they can within the scope of those goals.

Canada failed to protect elderly in first wave of COVID-19 — will the same mistakes be made again?

Via CBC News: Canada failed to protect elderly in first wave of COVID-19 — will the same mistakes be made again? Excerpt:

As COVID-19 cases surge across Canada and outbreaks in nursing homes flare up once again, experts say vulnerable elderly populations are at extreme risk in the second wave due to a lack of government action.   

Long-term care facilities bore the brunt of the first wave of the pandemic in Canada, with more than 70 per cent of deaths from COVID-19 occurring in those aged over 80, about twice the average of rates from other developed countries. 

"That is one of the most damning failures that's taken place through the pandemic," said Dr. Andrew Boozary, executive director of health and social policy for Toronto's University Health Network.  

"If we were going to be judged by how we protected our most susceptible and people who are structurally vulnerable — we failed them."  

Dozens of COVID-19 outbreaks have recently been reported in nursing homes in Ontario, B.C., Alberta and Quebec as the second wave arrives in much of Canada.

In his address to the nation Wednesday night, Prime Minister Justin Trudeau said the situations experienced by "too many elders" in long-term care homes is "unacceptable."  

"That has to change and it will change," he said. "We will be working with the provinces and territories to set new national standards on long-term care."  

But Canada's systemic failures in long-term care are nothing new, and neither are the calls for action.   

Long-term care deficiencies a longstanding issue 

A July report from the Royal Society of Canada, an association that includes some of Canada's top scientists and scholars, described COVID-19 as "a shock wave that cracked wide all the fractures in our nursing home system." It called on the federal government to act "immediately" on creating national standards of care.  

Months later, no concrete action has yet been taken, and the second wave of COVID-19 infections is well underway in previously hard-hit provinces, such as Ontario, B.C. and Quebec. 

On Friday, Trudeau conceded during a press conference that problems in long-term care facilities "existed long before COVID-19." 

"The systems that we had were inadequate all across the country," he said. "They were not up to the task of protecting our seniors appropriately." 

But experts question why the process of fixing those systemic issues has only now just begun.  

"The writing is on the wall that this had to happen yesterday," said Boozary.   

"To not ensure that every measure, every resource is in place to protect these families and their loved ones — to me is just damning, it's egregious." 

Dementia patients are dying from isolation amid COVID-19 pandemic

In order to save the aged, it's become necessary to kill them. Via The Washington Post: Dementia patients are dying from isolation amid coronavirus pandemic. Excerpt:

If only Dan Goerke could hold his wife’s hand. 

Maybe she would talk again. Maybe she would look at him and smile as she used to. Maybe she would eat and stop wasting away. 

Since the pandemic began, Goerke’s wife, Denise — 63 years old and afflicted with Alzheimer’s disease — had declined dramatically. Left alone in her nursing home, she had lost 16 pounds, could not form the simplest words, no longer responded to the voices of her children.  

In recent weeks, she had stopped recognizing even the man she loved. 

Goerke, 61, could tell the isolation was killing his wife, and there was nothing he could do but watch. “Every day it gets a little worse,” he said. “We’ve lost months, maybe years of her already.”  

Beyond the staggering U.S. deaths caused directly by the novel coronavirus, more than 134,200 people have died from Alzheimer’s and other forms of dementia since March. That is 13,200 more U.S. deaths caused by dementia than expected, compared with previous years, according to an analysis of federal data by The Washington Post.  

Overlooked amid America’s war against the coronavirus is this reality: People with dementia are dying not just from the virus but from the very strategy of isolation that’s supposed to protect them. In recent months, doctors have reported increased falls, pulmonary infections, depression and sudden frailty in patients who had been stable for years. 

Social and mental stimulation are among the few tools that can slow the march of dementia. Yet even as U.S. leaders have rushed to reopen universities, bowling alleys and malls, nursing homes say they continue begging in vain for sufficient testing, protective equipment and help. 

“It’s like we as a country just don’t care anymore about older people,” said Goerke, as he drove to his wife’s nursing home in Atlanta’s northern suburbs. “We’ve written them off.”  

In recent weeks, Goerke has struggled with anger — at U.S. leaders and at people who continue to reject simple measures such as wearing masks. As long as the virus keeps spreading, Goerke knows there’s no way to safely visit his wife.  

His worst fear is that by the time he can hold her hand, it will be to say goodbye.

Dementia symptoms appear to worsen after COVID-19 pandemic restrictions overwrite support routines, families say

Via The Globe and Mail: Dementia symptoms appear to worsen after pandemic restrictions overwrite support routines, families say. Excerpr:

Since March 16, Susan Mills has had a daily ritual: Every morning, she’d stand outside The Grove nursing home in Arnprior, Ont., with her face pressed up to the glass of her mother’s ground-floor window. Next to her was a paper sign, taped to the pane with the text facing inward. 

 It read: “Susan here at 10:30 in the morning.”  

Ms. Mills placed the sign there soon after COVID-19 protocols prevented family members from entering the facility, to notify its staff of her standing daily appointments with her mother, Barbara. From this spot, she witnessed her mother fade before her very eyes. 

Before the lockdown, Susan used to spend several hours a day with her mother, who has vascular dementia. She would accompany her mother in the dining room for dinner, and they’d watch the news together and catch up on what was happening with Barbara’s five other children. When visitors were banned in March, her mother was still able to hold a phone to her ear and chat from the other side of the window. But by early September, the 84-year-old barely had the strength to lift her hands. Her side of the conversation had dwindled to one-word responses. 

Last week, The Grove and other long-term care homes in Ontario officially reopened the doors to caregivers, which means family members, friends and other non-staff members who provide direct care to residents have been able to return without time restrictions. Many are discovering an unfortunate consequence of the safety protocols that were put in place to protect older adults from the coronavirus: A lack of social interaction has caused emotional suffering and deprived them of physical and mental stimulation, and in the case of many people with dementia, accelerated cognitive decline.  

“When we implemented all of the policies to try and prevent the spread of COVID-19, we didn’t think about … how is this going to impact the mental and emotional well-being of people who are living with dementia?” said Saskia Sivananthan, chief science officer at the Alzheimer Society of Canada.  

Susan Mills sees the consequences firsthand. Barbara no longer recognizes some of her children in the photographs Susan shows her, and now needs help feeding herself.  

“The deterioration is very real,” Susan said, noting that her mother will never regain much of the strength and cognitive function she has lost over the past six months.

Dementia prevention, intervention, and care: 2020 report of the Lancet Commission

Via The Lancet: Dementia prevention, intervention, and care: 2020 report of the Lancet Commission. The executive summary:

The number of older people, including those living with dementia, is rising, as younger age mortality declines. However, the age-specific incidence of dementia has fallen in many countries, probably because of improvements in education, nutrition, health care, and lifestyle changes. Overall, a growing body of evidence supports the nine potentially modifiable risk factors for dementia modelled by the 2017 Lancet Commission on dementia prevention, intervention, and care: less education, hypertension, hearing impairment, smoking, obesity, depression, physical inactivity, diabetes, and low social contact. 

We now add three more risk factors for dementia with newer, convincing evidence. These factors are excessive alcohol consumption, traumatic brain injury, and air pollution. We have completed new reviews and meta-analyses and incorporated these into an updated 12 risk factor life-course model of dementia prevention. Together the 12 modifiable risk factors account for around 40% of worldwide dementias, which consequently could theoretically be prevented or delayed. The potential for prevention is high and might be higher in low-income and middle-income countries (LMIC) where more dementias occur. 

Our new life-course model and evidence synthesis has paramount worldwide policy implications. It is never too early and never too late in the life course for dementia prevention. Early-life (younger than 45 years) risks, such as less education, affect cognitive reserve; midlife (45–65 years), and later-life (older than 65 years) risk factors influence reserve and triggering of neuropathological developments. Culture, poverty, and inequality are key drivers of the need for change. Individuals who are most deprived need these changes the most and will derive the highest benefit. 

Policy should prioritise childhood education for all. Public health initiatives minimising head injury and decreasing harmful alcohol drinking could potentially reduce young-onset and later-life dementia. Midlife systolic blood pressure control should aim for 130 mm Hg or lower to delay or prevent dementia. Stopping smoking, even in later life, ameliorates this risk. Passive smoking is a less considered modifiable risk factor for dementia. Many countries have restricted this exposure. Policy makers should expedite improvements in air quality, particularly in areas with high air pollution. 

We recommend keeping cognitively, physically, and socially active in midlife and later life although little evidence exists for any single specific activity protecting against dementia. Using hearing aids appears to reduce the excess risk from hearing loss. Sustained exercise in midlife, and possibly later life, protects from dementia, perhaps through decreasing obesity, diabetes, and cardiovascular risk. Depression might be a risk for dementia, but in later life dementia might cause depression. Although behaviour change is difficult and some associations might not be purely causal, individuals have a huge potential to reduce their dementia risk. 

In LMIC, not everyone has access to secondary education; high rates of hypertension, obesity, and hearing loss exist, and the prevalence of diabetes and smoking are growing, thus an even greater proportion of dementia is potentially preventable. 

Amyloid-β and tau biomarkers indicate risk of progression to Alzheimer's dementia but most people with normal cognition with only these biomarkers never develop the disease. Although accurate diagnosis is important for patients who have impairments and functional concerns and their families, no evidence exists to support pre-symptomatic diagnosis in everyday practice. 

Our understanding of dementia aetiology is shifting, with latest description of new pathological causes. In the oldest adults (older than 90 years), in particular, mixed dementia is more common. Blood biomarkers might hold promise for future diagnostic approaches and are more scalable than CSF and brain imaging markers. 

Wellbeing is the goal of much of dementia care. People with dementia have complex problems and symptoms in many domains. Interventions should be individualised and consider the person as a whole, as well as their family carers. Evidence is accumulating for the effectiveness, at least in the short term, of psychosocial interventions tailored to the patient's needs, to manage neuropsychiatric symptoms. Evidence-based interventions for carers can reduce depressive and anxiety symptoms over years and be cost-effective. 

Keeping people with dementia physically healthy is important for their cognition. People with dementia have more physical health problems than others of the same age but often receive less community health care and find it particularly difficult to access and organise care. People with dementia have more hospital admissions than other older people, including for illnesses that are potentially manageable at home. They have died disproportionately in the COVID-19 epidemic. 

Hospitalisations are distressing and are associated with poor outcomes and high costs. Health-care professionals should consider dementia in older people without known dementia who have frequent admissions or who develop delirium. Delirium is common in people with dementia and contributes to cognitive decline. In hospital, care including appropriate sensory stimulation, ensuring fluid intake, and avoiding infections might reduce delirium incidence.

As gun ownership soars, researchers find one third of people with dementia have access to firearms at home

Via the website Being Patient, a July 15 report: As Gun Ownership Soars, Researchers Find One Third of People with Dementia Have Access to Firearms at Home. Excerpt:

New research raises concerns about access to guns for people with dementia, and caregivers search for expert guidance on how to address gun safety as neurodegenerative diseases progress 

Gun ownership in the United States is soaring. According to the Brookings Institute, almost 3 million more firearms were sold this spring over comparable periods in the past, resurfacing the national conversation about gun safety. Research released today affirms that dementia and guns do not mix. 

Adults 65 and older are more likely to own guns than any other age group. Past studies have found that that more than three quarters of people in this age group own a gun, and 37 percent live in a home with a gun, putting them at greater risk of self-harm or death and of harming or killing others. 

Researchers say this risk is compounded by a disease like dementia, which people over 65 may have as much as a one-in-five chance of developing. 

“Alzheimer’s and other kinds of dementia can cause changes in thinking and memory that could make someone unsafe to handle a gun — even if that person has a lifetime of experience,” Emmy Betz, an associate professor of emergency medicine said at the University of Colorado School of Medicine, said in a news release.  

“Figuring out what to do about firearms can be stressful for family members and other dementia caregivers,” Betz continued. 

In the new study published in JAMA Network Open, the researchers said they examined a national survey of adults living in houses with firearms and focused on the results of 124 caregivers for patients with dementia. Key findings include: 

• Suicide is the most common form of firearm injury for this population, and 71 percent of caregivers thought it was most likely that a person with dementia would accidentally harm him or herself or someone else. 

• Among caregivers, 41 percent lived with the person with dementia. Nearly one-third of these caregivers said the person with dementia has access to firearms in the home. 

• Caregivers reported that many people with dementia have not made plans about what to do with firearms if they become unfit to handle them. 

• A majority of participants said they look to healthcare professionals for help in discussing firearm safety in the context of dementia. Only 5 percent had ever had a healthcare professional talk with them about the topic.

“Our study shows that few caregivers, including spouses and family members, have received professional counseling about how to address gun safety,” Betz said.

COVID-19: How much more evidence do we need? Time to change dementia care

Via the Canadian Alzheimer Society Blog: How much more evidence do we need? Time to change dementia care.

The Canadian Armed Forces report on long-term care homes struck with COVID-19 came as a shock to many Canadians. The conditions found by soldiers who volunteered to help care for residents are beyond disturbing.  

We are indebted to the soldiers who put their own lives at risk to care for our seniors, and to the military officials who made their frank and unvarnished report public. 

We also owe a debt to the staff who have been showing up for work, day after day despite the often-inadequate personal protection equipment provided to them, the increased workload, and the danger of getting sick themselves. 

And most importantly, we owe it to the residents of long-term care homes and to their families to make sure that this crisis brings about constructive changes in dementia and seniors care.  

The disastrous effects of the COVID-19 pandemic have exposed critical gaps and weaknesses in the long-term care system. Yet, this is a crisis that has been brewing for years – a crisis that was both predictable and preventable.  

Deaths in long-term care account for nearly 85 per cent of all COVID-19 deaths across Canada. Most long-term care residents are over 80 years old and over two-thirds of them have dementia, most of whom are women.  With these stark figures, there is unprecedented support for reforming the long-term care system.  

The Alzheimer Society has long called for fundamental changes to dementia care – not just in long-term care but across the entire healthcare system. And there is no shortage of recommendations on how to improve care for this vulnerable population.   

A year ago, in June 2019, the Federal Government launched A Dementia Strategy for Canada: Together We Aspire. The strategy respects jurisdictional responsibility for healthcare planning and delivery and is supported by expert committees to guide its development and implementation, including the Ministerial Advisory Board on Dementia, a federal, provincial, and territorial coordinating committee on dementia, and a “whole-of-government” Inter-Departmental Committee on Dementia. 

The national dementia strategy is an opportunity to tackle one of the fastest-growing diseases of our time. More than half a million Canadians are living with dementia today. With the aging of the baby boom generation, that number is expected to nearly double by the end of the decade. 

Putting off changes to dementia care is not an option. We must act now on all fronts to fix the underlying problems that have been so brutally revealed by the COVID-19 crisis. 

As we begin the difficult recovery from the COVID-19 pandemic, it is clear federal government accountability is required to  

• improve the care and support of Canadians living with dementia, and of their caregivers and families by creating national standards for long-term care and working with the provinces to ensure these are put into practice; and 

• heed the urgency exposed by the pandemic and fully fund the national dementia strategy with clear targets, structures, and timelines. 

Canadians know that “business as usual” is not an option. The Alzheimer Society of Canada is committed to pressing for change and to working with the federal government and other stakeholders to deliver the long-term care Canadians deserve.

Caregiving for dementia patients in the time of COVID-19

The Tyee has published my article Caregiving for Dementia Patients in the Time of COVID-19. Excerpt:

The pandemic has brought a special terror to persons with dementia and those who care for them. Those in long-term care are at grave risk of contracting COVID-19, as are the staff of such facilities. With weakened immune systems, and often underlying medical conditions, those in care facilities are especially vulnerable.  

Locally we’ve seen tragic outbreaks like that at Lynn Valley Care Centre. The whole country has been appalled by the horror of the Herron care centre in Dorval, Quebec, where 31 patients died in March — at least 5 of COVID-19 — and the survivors were found neglected and covered in filth. 

Last year The Tyee ran a special series on dementia, 11 articles keying off informative books and interviews with experts intended to provide readers with a sense of the political, medical, social and personal realities related to severe memory loss. You can find the series here.  

This spring, we decided to followup by seeing how caregivers and advocates are responding to the challenges of the pandemic. This is what they told us. 

‘We do Netflix nearly every evening’  

The Tyee is supported by readers like you Join us and grow independent media in Canada Adrienne Alford-Burt is executive director of the Village Langley, which opened last summer. She expressed thanks for The Tyee’s interest, but had little to say about the situation: “Other than to confirm that we remain COVID free, we are unable to provide comment at this time, as we are busy keeping our residents and team members safe in a very dynamic situation.” 

A man who looks after his wife was among the interviewees in a Tyee article on the “hidden nation” of unpaid caregivers. Now that they are sheltering in place, he told The Tyee in an email, they are “coping” with the aid of neighbours and relatives: 

“I hired my temporarily unemployed granddaughter to do the shopping.  

“The neighbours have been wonderful, phoning before going to Costco or the grocery store enquiring about our needs.  

“We walk on the forest trail 45-60 minutes every day it doesn’t rain. We have free weights and resistance bands which we use replacing our efforts at the gym.  

“I have read all the books taken from the library before it closed. We have watched more TV than ever before in our lives. We do Netflix almost every evening. 

“We have three jigsaw puzzles and do one every two to three days, taking them apart to be reassembled later. We have looked at our wedding pictures and other family albums. We will be looking at all the pictures on the computer.” 

An online scrapbook 

Pam Havens was running a unique program in North Vancouver’s Parkgate Community Centre, My Parkgate Break, last year. Its purpose was to offer a twice-weekly break when people with dementia could get together to sing songs, go for walks, have a meal and enjoy one another’s company for a few hours. 

Of course it had to suspend operations, but early in April Havens launched Virtual My Parkgate Break. It’s an online scrapbook of songs, funny YouTube videos and suggested activities — a rough equivalent of the camaraderie of a face-to-face session. The site is updated twice a week, and accessible to anyone, not just those enrolled in the program. Havens told The Tyee the links should be easily used by a person with dementia with minimal involvement of a caregiver, and she’s received some encouraging feedback: “We’ve made a start.”

Dementia care during COVID-19

Via The Lancet: Dementia care during COVID-19.

Older adults are vulnerable at the onset of natural disasters and crisis, and this has been especially true during the coronavirus disease 2019 (COVID-19) pandemic. With the aggressive spread of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), the death toll has risen worldwide. According to an interactive online tool that estimates the potential number of deaths from COVID-19 in a population, by age group, in individual countries and regional groupings worldwide under a range of scenarios, most of those who have died were older adults, most of whom had underlying health problems. 

Globally, more than 50 million people have dementia, and one new case occurs every 3 s. Dementia has emerged as a pandemic in an ageing society. The double hit of dementia and COVID-19 pandemics has raised great concerns for people living with dementia.

People living with dementia have limited access to accurate information and facts about the COVID-19 pandemic. They might have difficulties in remembering safeguard procedures, such as wearing masks, or in understanding the public health information issued to them. Ignoring the warnings and lacking sufficient self-quarantine measures could expose them to higher chance of infection. 

Older people in many countries, unlike in China, tend to live alone or with their spouse, either at home or in nursing homes. As more and more businesses stop non-essential services or initiate telecommuting work in an attempt to maintain social distancing limit the further spread of SARS-CoV-2, people living with dementia, who have little knowledge of telecommunication and depend primarily on in-person support might feel lonely and abandoned, and become withdrawn. 

To lessen the chance of infection among older people in nursing homes, more local authorities are banning visitors to nursing homes and long-term care facilities. In January, 2020, the Chinese Ministry of Civil Affairs implemented similar social-distancing measures.6 As a result, older residents lost face-to-face contact with their family members. Group activities in nursing homes were also prohibited. As a consequence, the residents of nursing homes became more socially isolated. We have observed that under the dual stress of fear of infection and worries about the residents' condition, the level of anxiety among staff in nursing homes increased and they developed signs of exhaustion and burnout after a month-long full lockdown of the facilities. 

Some people infected with COVID-19 have had to receive intensive care in hospital. A new environment can lead to increased stress and behavioural problems.7 Delirium caused by hypoxia, a prominent clinical feature of COVID-19, could complicate the presentation of dementia, increasing the suffering of the people living with dementia, the cost of medical care, and the need for dementia support. 

During the COVID-19 outbreak in China, five organisations, including the Chinese Society of Geriatric Psychiatry and Alzheimer's Disease Chinese, promptly released expert recommendations and disseminated key messages on how to provide mental health and psychosocial support. Multidisciplinary teams started counselling services free of charge for people living with dementia and their carers. These approaches minimised the complex impact of both COVID-19 outbreak and dementia. 

As recommended by international dementia experts and Alzheimer's Disease International, support for people living with dementia and their carers is needed urgently worldwide. In addition to physical protection from virus infection, mental health and psychosocial support should be delivered. For example, mental health professionals, social workers, nursing home administrators, and volunteers should deliver mental health care for people living with dementia collaboratively. 

Within such a team, dementia experts could take the lead and support team members from other disciplines. Self-help guidance for reducing stress, such as relaxation or meditation exercise, could be delivered through electronic media. Service teams could support behavioural management through telephone hotlines. Psychological counsellors could provide online consultation for carers at home and in nursing homes. In addition, we encourage people who have a parent with dementia to have more frequent contact or spend more time with their parent, or to take on some of the caregiving duties so as to give the carer some respite time. 

China has contained the epidemic, and business is starting to return to normal. We believe that learning lessons from China would empower the world to tackle the COVID-19 pandemic, with little risk of compromising the quality of life of people living with dementia and their carers.

Characteristics and health status of informal unpaid caregivers — 44 states, District of Columbia, and Puerto Rico, 2015–2017

MMWR has published Characteristics and Health Status of Informal Unpaid Caregivers — 44 States, District of Columbia, and Puerto Rico, 2015–2017. This bears on many people caring for loved ones with dementia. The summary:

What is already known about this topic?  

Informal, unpaid caregivers provide important support to family members, friends, and the health care system and might compromise their own health to provide this support.  

What is added by this report?  

During 2015–2017, approximately 20% of respondents to the Behavioral Risk Factors Surveillance System survey were classified as caregivers. Nearly 20% of caregivers reported fair or poor health, with wide interstate variation, ranging from 11.7% to 34.4%. 

What are the implications for public health practice? 

Because caregiving is a public health issue of increasing importance as the U.S. population ages, the health status of caregivers warrants special attention.

Road proximity, air pollution, noise, green space and neurologic disease incidence: A population-based cohort study

Via Environmental Health: Road proximity, air pollution, noise, green space and neurologic disease incidence: a population-based cohort study. The abstract:

Background 

Emerging evidence links road proximity and air pollution with cognitive impairment. Joint effects of noise and greenness have not been evaluated. We investigated associations between road proximity and exposures to air pollution, and joint effects of noise and greenness, on non-Alzheimer’s dementia, Parkinson’s and Alzheimer’s disease and multiple sclerosis within a population-based cohort. 

Methods 

We assembled administrative health database cohorts of 45–84 year old residents (N ~ 678,000) of Metro Vancouver, Canada. Cox proportional hazards models were built to assess associations between exposures and non-Alzheimer’s dementia and Parkinson’s disease. Given reduced case numbers, associations with Alzheimer’s disease and multiple sclerosis were evaluated in nested case-control analyses by conditional logistic regression. 

Results 

Road proximity was associated with all outcomes (e.g. non-Alzheimer’s dementia hazard ratio: 1.14, [95% confidence interval: 1.07–1.20], for living < 50 m from a major road or < 150 m from a highway). Air pollutants were associated with incidence of Parkinson’s disease and non-Alzheimer’s dementia (e.g. Parkinson’s disease hazard ratios of 1.09 [1.02–1.16], 1.03 [0.97–1.08], 1.12 [1.05–1.20] per interquartile increase in fine particulate matter, Black Carbon, and nitrogen dioxide) but not Alzheimer’s disease or multiple sclerosis. Noise was not associated with any outcomes while associations with greenness suggested protective effects for Parkinson’s disease and non-Alzheimer’s dementia. 

Conclusions 

Road proximity was associated with incidence of non-Alzheimer’s dementia, Parkinson’s disease, Alzheimer’s disease and multiple sclerosis. This association may be partially mediated by air pollution, whereas noise exposure did not affect associations. There was some evidence of protective effects of greenness.

A vaccine for dementia?

The Tyee has published my article A Vaccine for Dementia? Excerpt:

It was like an unexpected Christmas present, wrapped in medical-research terminology: a December 2019 article that seemed to offer hope of truly preventing Alzheimer’s and other dementias, rather than simply reducing the odds of developing them.  

We usually think of vaccines as ways to train our immune systems to fight off infectious diseases like measles and flu; dementia seems to develop from a buildup of neurological garbage in our brains, with no bacteria or viruses involved. But we can train our immune systems to pick up garbage as well as attack invaders, and the report from the University of California at Irvine suggests a way to do just that. 

The garbage in question is two kinds of proteins: beta-amyloid, or Aβ, plaques; and neurofibrillary tangles called tau. They seem to interfere with transmission of signals from one nerve cell to the next, thereby harming brain functions. Alois Alzheimer found them in the brain of Auguste Deter, a woman suffering from what we now call early-onset Alzheimer’s. Researchers have found plaques and tangles in dementia cases for over a century now, but haven’t found a way to clear out the trash that seems to cause neurodegeneration and cognitive decline.  

The U.C. Irvine researchers used mice specially bred to produce Aβ and tau, and injected them with a mix of two vaccines. They wanted to see if the mice would develop antibodies to those plaques and tangles, as if they were invading bacteria. The experiment succeeded; the antibodies reduced the levels of tau and Aβ in the mice. What’s more, the antibodies “recognized senile plaques and neurofibrillary tangles/neuropil threads in human AD [Alzheimer’s disease] brain sections.” 

The researchers noted that previous trials with monoclonal antibodies had failed to slow or reverse failing cognition. In effect, by the time symptoms turn up, it may be too late to reverse the damage. Prevention, not therapy, would be needed. 

But the Irvine researchers had seen recent research showing that Aβ and tau strengthen each other in damaging nerve cells, and a simultaneous attack on both might have real benefits: “we hypothesize that vaccines targeting both pathological molecules simultaneously might be the most effective therapeutic approach.” 

In other words, dementia might be reversed and patients could regain their memories.  

That breathtaking optimism does not extend to a cure available next month. The Irvine researchers say only that “we anticipate that a simultaneous reduction of both pathological molecules may lead to a better improvement in cognitive functions, although future studies will need to carefully test this question in appropriate mouse models.” So years of further research would be needed, and likely years more of human trials, before a reliable human vaccine against dementia would be available.