The Politics of Dementia

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.

Brain blood pressure discovery holds clue to dementia, hypertension, migraines

Via Scimex.org: Brain blood pressure discovery holds clue to dementia, hypertension, migraines.

Scientists have made the remarkable discovery that the brain has its own blood pressure sensors, opening the way to new possible treatments for serious illnesses including dementia, high blood pressure, and migraines.

For decades, scientists have suspected that the brain had a way of monitoring and regulating its own blood flow separate from the body-wide blood pressure control system, but until now no one had proven this. The brain needs more blood than any other organ to satisfy neurons’ relentless, high demand for oxygen, so it makes sense that it would have a way of buffering itself from blood flow fluctuations in the wider body. Also, disturbances to brain blood flow are a known cause in many diseases; for example, sustained reduction in brain blood flow is a likely cause of cognitive decline, dementia, and neurodegenerative disease such as Alzheimer’s Disease.   

Now, a research collaboration involving scientists from the University of Auckland, University College London, and Bristol University is the first ever to identify blood flow sensors within the brain. In the researchers’ animal study they found the sensors, tiny cells called astrocytes, strategically squeezed between blood vessels and nerve cells in rats’ brains. When the researchers stimulated these cells, the cells increased blood flow into the brain.    

Explains Professor Julian Paton from the University of Auckland’s Faculty of Medical and Health Sciences, a member of the research team: “These astrocyte cells are exquisitely sensitive to reductions in brain blood flow. When blood supply is reduced, they release a chemical signal to nearby nerve cells that raise blood pressure, restoring blood flow to the brain.   

“What we have discovered is that the brain has an automatic way to make sure that brain blood flow is preserved. Unfortunately, in pathological conditions, this is happening at the expense of generating higher blood pressure in the rest of the body.”   

The researchers say this finding could potentially lead to new approaches to treating numerous diseases associated with reduced brain blood flow.   

Professor Paton: “Our finding suggests that reducing activity in these blood flow-sensing astrocytes may be a way to lower blood pressure in people with hypertension (high blood pressure). It may also be a way to combat migraines and strokes. On the other hand, sensitising these cells may help in conditions of dementia to improve brain blood flow.”   

Researcher Professor Alexander Gourine from University College London says: “We are very excited about this discovery; there has never been a formal description of a blood flow or blood pressure sensor within the brain before. Our new data identify astrocytes as brain blood flow sensors that are critically important for setting the normal level of systemic (arterial) blood pressure and in doing so ensures that the brain receives a sufficient amount of oxygen and nutrients to support the uninterrupted operation of the information processing machinery.”   

The study was published in the prestigious scientific journal Nature Communications.

Families sending relatives with dementia to Thailand for care

Via The Guardian: Families sending relatives with dementia to Thailand for care. Excerpt:

British families are sending elderly relatives with dementia overseas to Thailand in a small but growing trend. 

Researchers visiting private care homes in Chiang Mai have found eight homes where guests from the UK are living thousands of miles away from their families, because suitable care in their home country was impossible to find or afford. 

“Thailand already has a long history of medical tourism and it’s now setting itself up as an international hub for dementia care,” said Dr Caleb Johnston, a senior lecturer in human geography at Newcastle University. 

Some of the facilities are British-run; some are Thai-run but with substantial investment from British citizens; and some are Swiss-run. All have the backing and support of the Thai government. “The government and private investors are very active in cultivating this as part of their economic development,” Johnston added.  

There are an estimated 850,000 people living with dementia in the UK. Local authority residential care costs up to £700 a week, with private care around £1,000. There are no prescribed staff-to-guest ratios in the UK but, with annual staff turnover exceeding 30% and 122,000 job vacancies, levels in state and private facilities tend to be around 1:6. 

In Thailand, in contrast, 1:1 around-the-clock residential care with fully-qualified staff – in award-winning facilities that look like four-star hotels – costs around £750 a week. 

Johnston spent nine weeks in Thailand along with Prof Geraldine Pratt, head of geography at the University of British Columbia, interviewing families and staff in residential care homes.  

“There aren’t yet any official numbers as to how many people are moving out to Thailand to receive care,” said Johnston. “Relative to the total number of people living with dementia, it is a low number. But with the number of people with dementia set to increase, and the cost of looking after them also getting higher, it is likely to be an option that more and more people consider.” 

Paul Edwards, the director of clinical services at Dementia UK, said: “I can well understand people choosing this option, given the state of anxiety about care in the UK.  

“It’s an emerging market that I can see becoming more popular because our failing and ailing system – which no politician is even trying to find a solution for – causes fear for those whose loved ones have to use it.”  

Nonetheless, those who take their loved ones abroad talk of the distress in having to choose between the physical, emotional and financial hardships of caring for them in the UK and outsourcing their care to the other side of the world.

See also these letters responding to the article.

Older people need geriatricians. Where will they come from?

Via The New York Times: Older People Need Geriatricians. Where Will They Come From? Excerpt:

As the nation’s older population surges, the gap between need and supply has steadily widened, and a persistent shortage of geriatricians has troubled the medical profession for years. 

Geriatrics became a board-certified medical specialty only in 1988. An analysis published in 2018 showed that over 16 years, through academic year 2017-18, the number of graduate fellowship programs that train geriatricians, underwritten by Medicare, increased to 210 from 182. That represents virtually no growth when adjusted for the rising United States population.  

“It’s basically stagnation,” said Aldis Petriceks, the study’s lead author, now a medical student at Harvard.

Moreover, geriatrics fails to attract enough young doctors to the graduate fellowships it does offer. Leaving aside geriatric psychiatry, more than a third of 384 slots went unfilled last year, the American Geriatrics Society reports. 

If one geriatrician can care for 700 patients with complicated medical needs, as a federal model estimates, then the nation will need 33,200 such doctors in 2025. It has about 7,000, only half of them practicing full time. (They’re sometimes confused with gerontologists, who study aging, and may work with older adults, but are not health care providers.)  

Why do so few residents choose to specialize in geriatrics? Though salaries are rising, total compensation (wages plus certain benefits) for geriatricians in 2018 averaged $233,564, according to the Medical Group Management Association.  

Anesthesiologists earned twice as much; radiologists and cardiologists topped $500,000.  

“These are smart people looking at economic reality,” said Dr. Mark Supiano, a geriatrician and researcher at VA Salt Lake City Health Care System. Treating patients covered by Medicare, which pays less than commercial insurance, is a slow way to repay medical school loans. 

Nor does the field offer much glamour or the prospect of medical heroics. “Having patience, having good communication skills, it’s a different personality than being a surgeon,” Dr. Supiano acknowledged. Yet a much-cited 2009 survey of 42 medical specialties found that geriatricians reported higher career satisfaction than most. 

Not every older person needs a geriatrician, but the federal model estimates that 30 percent of the over-65 population does. This is especially true “when someone has three or more chronic conditions and is over 85,” said Nancy Lundebjerg, chief executive of the American Geriatrics Society.

That describes Dorothy Lakin, 93, whose recent medical history includes heart failure, macular degeneration, falls, colon cancer and heart valve surgeries, and a stroke.  

“She’s had a zillion trips to the E.R., one after another,” said her daughter Mary Ellen Lakin, 70, who lives in Newton, Mass. “I thought, let’s see if there’s a way to make her life easier.”  

Mary Ellen Lakin found her way to Dr. Laura Nelson Frain, a geriatrician at Brigham and Women’s Hospital in Boston, who has gently steered mother and daughter through the past year. She reduced the number of medications Dorothy Lakin took and the specialists she saw, stayed in touch with Mary Ellen and sent a geriatric nurse-practitioner to make house calls.  

“It’s less of ‘Let’s order this med, let’s order that procedure,’ more of a holistic approach,” Mary Ellen Lakin said. Her mother recently entered hospice care.  

Nevertheless, given the numbers, “we’re not going to address this growing older population through some miraculous influx of specialized geriatricians,” Mr. Petriceks said.

Alzheimer’s tests soon may be common. Should you get one?

Via The New York Times: Alzheimer’s Tests Soon May Be Common. Should You Get One? Excerpt:

Not long ago, the only way to know if someone had Alzheimer’s disease was to examine the brain in an autopsy. 

That is changing — and fast — with brain scans and spinal taps that can detect beta amyloid, the telltale Alzheimer’s protein. 

There is a blood test on the horizon that can detect beta amyloid, and researchers are experimenting with scans to look for another protein, called tau, also characteristic of Alzheimer’s.  

As this sort of diagnostic testing becomes widespread, more people who fear their memories are slipping will face a difficult question: Would I really want to know if I were getting Alzheimer’s disease?

“This is a new era, and we are just at the precipice,” said Dr. Gil Rabinovici, a neurologist at the University of California, San Francisco.  

A positive test could help you get your affairs in order and plan your future. And a drug company, Biogen, claims to have the first treatment that may slow the course of the disease if begun early enough.  

Health insurers are prohibited by law — for now, at least — from denying coverage if you have Alzheimer’s. But there is nothing that prevents long-term-care and life insurers from denying you.  

Will your friends stay with you? How about your spouse? What would it be like to live with the knowledge that you will eventually be unable to recognize your family, or even to speak? 

For some who have been given diagnostic tests, those questions are all too real. 

When Dr. Daniel Gibbs, 68, a neurologist in Portland, Ore., noticed his memory starting to slip, he wanted to know if it was Alzheimer’s. He had seen its damage all too often in his patients.

So he received brain scans for beta amyloid and took cognitive tests. He knew that in people like him with mild memory problems, the combination can cinch a diagnosis. 

The result? He was in the early stages of Alzheimer’s disease. 

Now he worries about his future. Alzheimer’s is “an ugly way to die,” he said. He has told his family that if he gets something like pneumonia, they should withhold treatment. 

The sort of testing Dr. Gibbs had can be expensive, and diagnostic brain scans usually are not covered by insurance. The tests are not for the worried well whose memories are intact. 

But they are available at some medical centers to those with mild memory problems. 

Generally, even people without memory problems who have amyloid plaques in their brains are more likely to progress to Alzheimer’s, said Dr. Ronald Petersen, a neurologist at the Mayo Clinic in Rochester, Minn. 

But not everyone does progress. Even when they do, it can be years before there are symptoms.  

Outside of research studies, Dr. Petersen said, “we do not do amyloid scans on clinically normal people, because we don’t know what to tell them.” 

Dr. Rabinovici, of U.C.S.F., sees people who are distressed by their memory problems, knowing something is wrong and unable to get an answer from their doctors.  

“Often doctors can’t definitively tell them if their memory loss is related to aging,” he said. “A lot of times, doctors dismiss it and tell patients: ‘You are fine, it’s normal. You are 75 or 89 and depressed. Why not try an antidepressant?’” 

Before he offers diagnostic testing, Dr. Rabinovici sits down with patients and their families and asks how will they feel if the test is positive — or negative.  

Most who receive positive diagnoses have told him that after the initial shock, they did not regret being tested. 

“It ends the diagnostic odyssey,” he said. “It ends the uncertainty.”

How ‘memory clinics’ can help families deal with dementia

The Tyee has published my article How ‘Memory Clinics’ Can Help Families Deal with Dementia. Excerpt: 

One of the real challenges for families dealing with a new diagnosis of dementia is finding timely expert advice. Few family physicians have extensive experience in the field, and referrals to experts may involve long waiting times. For those living in small towns and rural districts, long trips may also be needed.

This puts an additional burden on caregivers, who may also be holding down a job or raising children, or both. The resulting stress only adds to the burden; meanwhile, the condition of the loved one with dementia may be worsening, and the pressure to move the loved one to a care facility may be irresistible.  

An Ontario GP, Dr. Linda Lee, has found a way to deliver expert advice and support through local “memory clinics.” Her methods have earned her several professional awards, and now she and her colleagues are poised to establish memory clinics nationwide.

Click or tap through to read my interview with Dr. Lee.

Sleep fragmentation, microglial aging, and cognitive impairment in adults with and without Alzheimer’s dementia

Via Science Advances: Sleep fragmentation, microglial aging, and cognitive impairment in adults with and without Alzheimer’s dementia. The abstract:

Sleep disruption is associated with cognitive decline and dementia in older adults; however, the underlying mechanisms are unclear. In rodents, sleep disruption causes microglial activation, inhibition of which improves cognition. However, data from humans are lacking. 

We studied participants in two cohort studies of older persons—the Rush Memory and Aging Project and the Religious Orders Study. We assessed sleep fragmentation by actigraphy and related this to cognitive function, to neocortical microglial marker gene expression measured by RNA sequencing, and to the neocortical density of microglia assessed by immunohistochemistry. 

Greater sleep fragmentation was associated with higher neocortical expression of genes characteristic of aged microglia, and a higher proportion of morphologically activated microglia, independent of chronological age- and dementia-related neuropathologies. Furthermore, these were, in turn, associated with worse cognition. 

This suggests that sleep fragmentation is accompanied by accelerated microglial aging and activation, which may partially underlie its association with cognitive impairment.

See also this Globe and Mail report on the study.

New therapies help patients with dementia cope with depression

Via The New York Times: New Therapies Help Patients With Dementia Cope With Depression. Excerpt:

Anne Firmender, 74, was working with her psychologist to come up with a list of her positive attributes. 

“I cook for others,” said Ms. Firmender.  

“It’s giving,” encouraged the psychologist, Dimitris Kiosses. 

“Good kids,” continued Ms. Firmender, who has four grown children and four grandchildren. 

“And great mother,” added Dr. Kiosses. Ms. Firmender smiled.  

Dr. Kiosses typed up the list and handed a printout to Ms. Firmender to take home. “When you’re feeling down and hard on yourself, you can remind yourself of your strengths,” he told her. 

Ms. Firmender, who has a history of mental health problems, was in therapy for depression. But she also has mild cognitive impairment and can have trouble remembering what day it is. So Dr. Kiosses was treating her with a novel approach called Problem Adaptation Therapy, or PATH. The therapy, developed at Weill Cornell Medicine in New York City and White Plains, N.Y., focuses on solving tangible problems that fuel feelings of sadness and hopelessness. It incorporates tools, like checklists, calendars, signs and videos, to make it accessible for people with memory issues. A caregiver is often involved. 

The approach is one of several new psychotherapies to treat anxiety and depression in people with cognitive impairments, including early to moderate dementia. Another, the Peaceful Mind program, developed by researchers at Baylor College of Medicine and elsewhere for patients with anxiety and dementia, simplifies traditional cognitive behavioral therapy and focuses on scheduling pleasurable activities and skills, like deep breathing. Therapy sessions are short and take place in patients’ homes. A program designed by researchers at University College London gives cards to patients to take home to remind them of key strategies. One that says “Stop and Think” prompts them to pause when they have panicky and unhelpful thoughts to help keep those thoughts from spiraling and creating more anxiety.  

Early research on the new approaches is encouraging, but longer and larger studies will be needed to fully assess the effectiveness. In a study published in JAMA Psychiatry involving 74 people with major depression and mild cognitive impairment or mild to moderate dementia, patients who had 12 sessions of PATH had a 43 percent greater reduction in their scores on a measure of depression symptoms compared with those in the control group who received 12 sessions of “supportive” therapy. (In the control treatment, therapists focused on conveying empathy and helping patients express their emotions.) 

At the end of treatment, 38 percent of patients who had PATH were in remission from their depression, compared with about 14 percent in the control group. In this study, both treatments were given at home.

The once-scrapped Alzheimer's drug aducanumab may work after all

Via Science News: The once-scrapped Alzheimer's drug aducanumab may work after all.

Call it a comeback — maybe. After being shelved earlier this year for lackluster preliminary results, a drug designed to slow Alzheimer’s progression is showing new signs of life. A more in-depth look at the data from two clinical trials suggests that patients on the biggest doses of the drug, called aducanumab, may indeed benefit, the company reported December 5.  

People who took the highest amounts of the drug declined about 30 percent less, as measured by a commonly used Alzheimer’s scale, than people who took a placebo, Samantha Haeberlein of the biotechnology company Biogen reported at the Clinical Trials on Alzheimer’s Disease meeting in San Diego. With these encouraging results in hand, Biogen, based in Cambridge, Mass., plans to seek drug approval from the U.S. Food and Drug Administration in early 2020. 

The results are “exhilarating, not just to the scientific community but our patients as well,” Sharon Cohen, a behavioral neurologist at the Toronto Memory Program, said during a panel discussion at the meeting. Cohen participated in the clinical trials and has received funding from Biogen.  

The presentation marks “an important moment for the Alzheimer’s field,” says Rebecca Edelmayer, director of scientific engagement for the Alzheimer’s Association in Chicago. Alzheimer’s disease slowly kills cells in the brain, gradually erasing people’s abilities to remember, navigate and think clearly. Current Alzheimer’s medicines can hold off symptoms temporarily, but don’t fight the underlying brain destruction. A treatment that could actually slow or even stop the damage would have a “huge impact for patients and their caregivers,” she says.

If confirmed, the results also bolster the idea that the build-up of amyloid, a sticky protein that accumulates in the brains of people with Alzheimer’s, is a key early step of the disease, as opposed to a red herring, as some have argued (SN: 2/25/11).  

Aducanumab is an antibody designed to target both small clusters and larger clumps of amyloid, called fibrils, for removal. But the drug has had a roller coaster history. Early on, the drug was shown to clear amyloid from the brain (SN: 8/31/16). Researchers launched two phase III trials, designed to prove a drug’s worth by pitting it against standard treatments or a placebo,that enrolled people around age 70 who showed early signs of Alzheimer’s. Preliminary data from those two trials showed that the drug was unlikely to hit its goals of slowing symptoms along with the underlying brain signs of the disease more than a placebo treatment.  

Those lackluster findings led Biogen to stop the trials in March before they were finished. 

But then in October, after rolling in three more months of data that became available after the initial analyses, Biogen decided that the drug showed promise after all, particularly among people who received the highest dose, which was 10 milligrams of the drug per kilogram of body weight. The company had decided midway through the trial to increase the doses of some people who had previously been assigned to lower doses for fear of side effects.  

Updated results included a total of 3,285 people who had early signs of cognitive slipping. Surveys measured participants’ abilities on six aspects of life, including memory, orientation, personal care and problem solving. Analyses on a subset of 288 people in one trial who received the highest dose showed that, while they still lost some mental abilities over the year and a half of the study, they declined 30 percent less than those who received the placebo. A similar subset of 282 people in the other trial declined 27 percent less than those who took a placebo. 

Brain scans showed that, compared with people on the placebo, the brains of people taking aducanumab had less amyloid — and less tau, another protein associated with Alzheimer’s. Both the tau and amyloid results indicate that the drug was in fact slowing the disease.

New drug curbs dementia’s delusions, researchers find

Via The Globe and Mail, a report by The Associated Press: New drug curbs dementia’s delusions, researchers find. Excerpt:

A drug that curbs delusions in Parkinson’s patients did the same for people with Alzheimer’s disease and other forms of dementia in a study that was stopped early because the benefit seemed clear. 

If regulators agree, the drug could become the first treatment specifically for dementia-related psychosis and the first new medicine for Alzheimer’s in nearly two decades. It targets some of the most troubling symptoms that patients and caregivers face — hallucinations that often lead to anxiety, aggression, and physical and verbal abuse.  

Results were disclosed Wednesday at a conference in San Diego. 

“This would be a very important advance,” said one independent expert, Dr. Howard Fillit, chief science officer of the Alzheimer’s Drug Discovery Foundation.  

Although the field is focused on finding a cure for dementia and preventing future cases, “there is a huge unmet need for better treatment” for those who have it now, said Maria Carrillo, the Alzheimer’s Association’s chief science officer.  

The drug is pimavanserin, a daily pill sold as Nuplazid by Acadia Pharmaceuticals Inc. It was approved for Parkinson’s-related psychosis in 2016 and is thought to work by blocking a brain chemical that seems to spur delusions.  

About 8 million Americans have dementia, and studies suggest that up to 30 per cent of them develop psychosis.  

“It’s terrifying,” said Dr. Jeffrey Cummings of the Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas. “You believe that people might be trying to hurt you. You believe that people are stealing from you. You believe that your spouse is unfaithful to you. Those are the three most common false beliefs.”  

He consults for Acadia and helped lead the study, which included about 400 people with dementia and psychosis. All were given a low dose of the drug for three months, and those who seemed to respond or benefit were then split into two groups. Half continued on the drug and the others were given dummy pills for six months or until they had a relapse or worsening of symptoms. Neither the patients nor their doctors knew who was getting what.  

Independent monitors stopped the study when they saw that those on dummy pills were more than twice as likely as those on the drug to relapse or worsen — 28 per cent versus nearly 13 per cent.

John Mann and the lessons of early onset Alzheimer’s

The Tyee has published my article John Mann and the Lessons of Early Onset Alzheimer’s. Excerpt:

The death of John Mann of the band Spirit of the West has hit British Columbians particularly hard. He was indeed our spirit, funny and brave and honest.

And as with the death of Gord Downie, the shock was not lessened by our knowledge that it was imminent.  

The dementias of old age were grim even when we accepted them as part of the human condition: live long enough past the God-ordained threescore and ten, and you would forget everything, even how to speak and how to swallow. 

But it was a different kind of dementia that presented itself to Alois Alzheimer in 1901. 

 He was then a 36-year-old doctor in Frankfurt with an interest in psychiatry and neurological disorders. A 51-year-old woman named Auguste Deter had for several years been showing signs of dementia, and late in 1901 her husband had her admitted to a mental institution. Alzheimer, the director of the asylum, took an interest in her case; he had seen similar dementias, but only in much older patients. When Auguste died in 1906, Alzheimer dissected her brain and made discoveries that founded a whole branch of medical science.

Deter’s brain cells, when stained and studied under a microscope, showed the neurofibrillary tangles and amyloid plaques that still characterize most cases of the disease. Another patient, “Johann F.,” showed the same tangles and plaques. A senior colleague suggested the condition be named “Alzheimer’s disease,” and so it has become. Researchers are still exploring ways to remove or prevent those tangles and plaques.

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.