The Politics of Dementia

Ontario man with dementia on crusade to plan his own death

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

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

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

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

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

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

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

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

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

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

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

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

Key Points 

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

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

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

Abstract 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

When I was diagnosed with dementia I thought it was the end of the world. It's not

Via The Guardian: When I was diagnosed with dementia I thought it was the end of the world. It's not.

It’s been almost a decade now since I was visiting my patients and was startled when one started hugging and kissing me. A couple of weeks later, I realised that the woman was a friend I’d known for 20 years. That was how it all started.  

When I was in my late 50s I began to notice things weren’t normal. At the time I was working as an executive partner in a general practice in Southampton. I started getting lost: I couldn’t remember how to get to the branch surgery, how to get home, and it was frightening. 

 It was during a conference that I realised I could no longer continue working. I looked around and said: “Right, shall we start with introductions?”. I turned to the person next to me who replied: “But Jennifer, I’ve worked with you for years.” By the time they got to the end of the room I realised that something was seriously wrong. 

I had to resign after that. My patients meant too much to me. I couldn’t even imagine having to go into court if something happened – like forgetting to put one decimal place on a prescription. Many people can still work when they have dementia but not in my job. 

I diagnosed myself with dementia. The GP believed me, but because I was a well-regarded doctor, the consultant didn’t want to even consider it. He said: “There’s nothing the matter with you.” I asked for further testing by the neuropsychology professor and they thought I should see a consultant who specialised in younger onset dementia, which I did.  

I am one of 50 million people globally living with dementia. About two thirds of that number have Alzheimer’s disease, just like me. Others have vascular dementia, mixed dementia, Lewy body dementia or frontotemporal degeneration (FTD). That community is likely to rise to about 152 million people by 2050. Every three seconds someone develops dementia. 

I was lucky that I was a doctor and could diagnose myself. Many are not so fortunate. There are millions of people around the world who still don’t have a diagnosis because of a myriad of factors. Some people are unaware their memory loss is a symptom of dementia, others don’t have access to a GP, and some GPs can’t properly detect and diagnose dementia. We can’t be sure of the numbers, of course, because we don’t know who they are.  

I’m 72 now and it’s nearly 10 years since I diagnosed myself with Alzheimer’s. I think I have adapted well. If I can’t do something in the way I used to, I find another way to do it. I have a computer which tells me when to do everything, even when to change my bedclothes and things like that. I can’t cope with using the phone anymore, but I can send emails, and communicate on Facebook or via Skype. I take part in virtual networks for people with dementia around the world. I am busy. I am sociable. I am cheerful.  

However, when I was working as a doctor, very little was actually done proactively about dementia, so I now run groups using the brain games developed by the Japanese neuroscientist Ryuta Kawashima. There were some people in the groups who couldn’t write their name any more – so we started to teach them to do their letters again, because you can learn. 

My advice for other health professionals would be to never forget that the real person is still there, even with dementia. They don’t disappear. It’s about finding them. They need to give hope to families and relatives because it can be very difficult for them too. They need to give hope not necessarily in terms of a cure, but through the message that you can live well with dementia. There needs to be more involvement of people with dementia and asking: what do they want? What would make a positive difference to them now rather than just possible help in the future?  

When I was diagnosed, I thought it was the end of the world – but it’s not.

Continuing education for the prevention of mild cognitive impairment and Alzheimer’s-type dementia

Via BMJ Open: Continuing education for the prevention of mild cognitive impairment and Alzheimer’s-type dementia: a systematic review and overview of systematic reviews. The abstract:

Objective To summarise evidence on the preventive effects of continuing education on mild cognitive impairment and Alzheimer’s-type dementia in adults 45 years or older. 

Design Systematic review and overview of systematic reviews. 

Data sources We systematically searched MEDLINE, PsycINFO, EMBASE, Cochrane Central Register of Controlled Trials, Cumulative Index to Nursing and Allied Health Literature, and Scopus for published studies and grey literature databases for unpublished studies from January 1990 to April 2018.  

Methods To assess evidence directly addressing our objectives, we conducted a systematic review. Because we were aware of a dearth of direct evidence, we also performed an overview of systematic reviews on leisure activities that mimic formal continuing education. We a priori established the inclusion and exclusion criteria. Two authors independently assessed inclusion and exclusion at the abstract and full-text level, rated the risk of bias, and determined the certainty of evidence using the Grading of Recommendations Assessment, Development and Evaluation. We resolved all discrepancies by consensus. We synthesised the available evidence narratively. 

Results Our searches identified 4933 citations. For the systematic review, only two publications on the same prospective cohort study (Tasmanian Healthy Brain Project) met the inclusion criteria; for the overview of reviews, we included five systematic reviews. 

Based on 459 participants, preliminary data of the ongoing cohort study indicated that cognitive reserve statistically significantly increased in persons attending university classes compared with the control group (92.5% vs 55.7%, p<0.01). Likewise, language processing capacities statistically significantly improved (p<0.01). Episodic memory, working memory and executive function did not differ significantly between groups. 

Systematic reviews consistently reported a positive association between participation in cognitively stimulating leisure activities and reduced incidence of dementia and improved cognitive test performance. 

Conclusion Available results demonstrate that cognitive reserve increases through continuing education and show a positive association of cognitive leisure activities with both improved cognitive function and lower dementia incidence.

Paradoxical lucidity: A potential paradigm shift for the neurobiology and treatment of severe dementias

Via Alzheimer's & Dementia: Paradoxical lucidity: A potential paradigm shift for the neurobiology and treatment of severe dementias. The abstract:

Unexpected cognitive lucidity and communication in patients with severe dementias, especially around the time of death, have been observed and reported anecdotally. 

Here, we review what is known about this phenomenon, related phenomena that provide insight into potential mechanisms, ethical implications, and methodologic considerations for systematic investigation. 

We conclude that paradoxical lucidity, if systematically confirmed, challenges current assumptions and highlights the possibility of network-level return of cognitive function in cases of severe dementias, which can provide insight into both underlying neurobiology and future therapeutic possibilities.

Virtual visits: How Finland is coping with an ageing population

Via The Guardian: Virtual visits: how Finland is coping with an ageing population. Excerpt:

It’s 11.30am on a midweek June morning in Helsinki, Finland. Duvi Leineberg, a remote care nurse, is doing the lunch rounds. But instead of jumping in a car and visiting each person one by one, she is sitting in an office looking at a large computer screen where she can see into seven people’s homes. Most are sitting at a table preparing to tuck into some food.

This is a virtual lunch group, set up to make sure older people receiving home care services in the city eat regularly and at the right time. Leineberg runs the session. She starts by checking everyone has their food and that it is warmed up. Some have soup, others have pre-prepared meals that have been delivered by home care services. People also sip coffee. 

One screen shows an empty backdrop and she calls the home to check her client is all right. He walks past the screen but says he isn’t hungry and doesn’t want to eat right now. Leineberg then asks everyone if they have any plans for the afternoon. A few reply that they will go out for a walk. 

A former hospital nurse, Leineberg sees the value of such groups. “Firstly, the client feels like they are a part of a bigger thing. It’s also guaranteed that they eat properly. If I spot anything that seems out of the ordinary, I can call the home care nurses who will pay them a visit if necessary.”  

Her clients are also fans of the lunch group. Riitta Koskinen, 80, says through a translator: “I’m old and living alone and it’s nice to have the company. We eat at the same time – food tastes better when you’re with others – and I’ve really enjoyed it. It makes me eat and it’s good to see other people.”  

Finland has a rapidly ageing population and recruitment problems in health and care. By 2070, one in three Finns is expected to be over 65. At the same time there has been a huge decline in the birth rate and the number of Finns of working age is expected to fall by around 200,000 by 2050. As a result, the demand for and cost of care services are growing while tax revenues are decreasing, leading politicians to warn that the Nordic model of highly state-funded cradle-to-grave social care will no longer be affordable.

Taina Mantyranta, a medical counsellor at the Finnish ministry of social affairs and health, admits: “Finland is facing economic constraints. We have been trying to reform our social and healthcare system for several decades. The need to develop more integrated social and health services has been clearly recognised also from a cost containment perspective. ICT and digitalisation are integral parts of the reform.” 

The virtual lunch group is one aspect of Helsinki’s remote care – where clients have a tablet that links up with remote care nurses in a service centre. Remote care appointments are set up to check on clients throughout the day and to make sure they take the relevant medication. There are 800 home care clients, and nurses carry out 24,000 remote care visits a month. By the end of 2019, the service hopes to cater for 1,100 clients.  

The potential savings are eye-watering. Whereas a physical home visit costs the equivalent of around £40, a remote care visit is just £4.50. Over the course of one shift, a remote care nurse can carry out over 50 visits – which works out almost 90% cheaper than if they had knocked on each of their client’s doors.

Randomized trial of verubecestat for prodromal Alzheimer’s disease 'terminated for futility'

Via NEJM: Randomized Trial of Verubecestat for Prodromal Alzheimer’s Disease. The abstract:

BACKGROUND Prodromal Alzheimer’s disease offers an opportunity to test the effect of drugs that modify the deposition of amyloid in the brain before the onset of dementia. Verubecestat is an orally administered β-site amyloid precursor protein–cleaving enzyme 1 (BACE-1) inhibitor that blocks production of amyloid-beta (Aβ). The drug did not prevent clinical progression in a trial involving patients with mild-to-moderate dementia due to Alzheimer’s disease. 

METHODS We conducted a randomized, double-blind, placebo-controlled, 104-week trial to evaluate verubecestat at doses of 12 mg and 40 mg per day, as compared with placebo, in patients who had memory impairment and elevated brain amyloid levels but whose condition did not meet the case definition of dementia. The primary outcome was the change from baseline to week 104 in the score on the Clinical Dementia Rating Scale–Sum of Boxes (CDR-SB; scores range from 0 to 18, with higher scores indicating worse cognition and daily function). Secondary outcomes included other assessments of cognition and daily function. 

RESULTS The trial was terminated for futility after 1454 patients had been enrolled; 485 had been assigned to receive verubecestat at a dose of 12 mg per day (the 12-mg group), 484 to receive verubecestat at a dose of 40 mg per day (the 40-mg group), and 485 to receive placebo. A total of 234 patients, 231 patients, and 239 patients per group, respectively, completed 104 weeks of the trial regimen. 

The estimated mean change from baseline to week 104 in the CDR-SB score was 1.65 in the 12-mg group, 2.02 in the 40-mg group, and 1.58 in the placebo group (P=0.67 for the comparison between the 12-mg group and the placebo group and P=0.01 for the comparison between the 40-mg group and the placebo group), suggesting a worse outcome in the higher-dose group than in the placebo group. The estimated rate of progression to dementia due to Alzheimer’s disease was 24.5, 25.5, and 19.3 events per 100 patient-years in the 12-mg group, the 40-mg group, and the placebo group, respectively (hazard ratio for 40 mg vs. placebo, 1.38; 97.51% confidence interval, 1.07 to 1.79, not adjusted for multiple comparisons), favoring placebo. Adverse events were more common in the verubecestat groups than in the placebo group. 

CONCLUSIONS Verubecestat did not improve clinical ratings of dementia among patients with prodromal Alzheimer’s disease, and some measures suggested that cognition and daily function were worse among patients who received verubecestat than among those who received placebo.

Thoughts on Canada's new dementia strategy

TheTyee has published my article Tackling Dementia Will Require a Fast Sprint. Excerpt:

On June 17, Health Minister Ginette Petitpas Taylor issued A Dementia Strategy for Canada: Together We Aspire. When so many governments have endorsed their “aspirational” support for this or that good but impossible cause, cynics might be forgiven for dismissing this plan for its title alone.

But we have learned just enough about Alzheimer’s and the other dementias to realize how ignorant we really are. The human brain is a highly complicated system, and it breaks down in highly complicated ways. We lack answers to most of our key questions, and we don’t even know if they’re the right questions. 

Still, the new strategy reflects the best current thinking on the subject, and points out three “national objectives” for Canadians. We can aspire to meet them, but we can’t be assured of easy, early victories.  

The first objective is common sense: to prevent dementia in the first place. We’re to achieve this by more “research to identify and assess modifiable risk and protective factors.” In other words, how do we expose ourselves to dementia, and how do we protect ourselves? 

We know nine likely risk factors: lower levels of education, midlife high blood pressure, obesity, hearing loss, smoking over age 65, depression, physical inactivity, diabetes and social isolation. But they’re likely, not ironclad, causes. As Damon Runyon famously observed, “The race may not always be to the swift nor the victory to the strong, but that’s how you bet.”

Improving the odds of that bet would be politically challenging. How do we keep young people in school when they’re screaming to get out? How do we discourage terrible eating habits, smoking and physical laziness, when whole supermarket aisles are dedicated to junk food and sugary drinks? How do we diminish mental health issues like depression and social isolation, when we’ve rebuilt our society to encourage screen addiction? 

Dementia-prone attitudes  

Overcoming such dementia-prone attitudes is foreseen in the strategy, which recommends we: “Support measures that increase the contribution of social and built environments to healthy living and adoption of healthy living behaviours.”  

Short of revolution, it’s hard to imagine what those measures might be. Millions of Canadians kicked back on the La-Z-Boy with a bowl of chips and a six-pack to watch superbly fit athletes win the NBA final for Canada. Banning abusable substances, whether coke or Coke, is a fool’s game and only enriches those willing to meet what the market demands. 

The second objective is to advance therapies and find a cure. This again is common sense, but we’re a small player in the dementia-research game. Sure, we were even smaller when Banting and Best discovered insulin, but they didn’t face the bureaucratic funding obstacles that today’s researchers do. 

The plan asks us to “establish and review strategic dementia research priorities for Canada.” That sounds like steady work for ministry officials and deans of medical schools, but politics is likely to set the priorities. The bureaucracies of Big Pharma endorsed the spending of billions on ineffective anti-dementia drugs before recently pulling the plug. Therapies, and especially a cure, are more likely to be found by accident, or by a maverick who doesn’t play well with bureaucrats.  

Third, we’re urged to “improve the quality of life of people living with dementia and caregivers.” No argument there, at least until we start talking money. Health care is premised on the hope of saving lives; dementia care can only hope to lose them less painfully. We can’t rely on an endless supply of saints to look after our grandmothers and husbands. We will need to recruit them aggressively, train and equip them superbly, and pay them like the rare professionals they will be.

Dementia: A community centre’s small, important victories

The Tyee has published my article Dementia: A Community Centre’s Small, Important Victories. Excerpt:

Parkgate Community Centre in North Vancouver is like countless others: it offers fitness programs, family services, and activities for toddlers, children, youth, and seniors. But it also offers an unusual and very successful program for families dealing with dementia. “My Parkgate BREAK” appears to be unique on the North Shore and perhaps elsewhere in B.C.  

My Parkgate BREAK began in 2013, when Erin Smith, seniors’ services manager, was involved in a grassroots project with seniors after caring for her grandmother, who had vascular dementia. Shortly after she passed away, her father was diagnosed. In an interview with The Tyee, Smith described the challenge of a “sandwich generation” mom: bringing up kids, looking after her grandmother, and trying to hold down a job. She realized that if she needed a break, so did a lot of other people — not only the caregivers, but also the cared-for. Both feel painfully isolated, which in itself can cause depression.  

Researching the idea, Smith found the demand was certainly there. The North Shore’s seniors are 17.5 per cent of the population. Their numbers are expected to double by 2031, and dementia affects 7.1 per cent of the North Shore population. Those who care for them must be a much higher percentage of the population, but they have surprisingly few resources apart from other friends and relatives.  

This is especially true of families dealing with early to moderate dementia, with loved ones who can still get through the day, dress themselves, and take their medications. When more help is needed, such families find themselves on waitlists for government-subsidized services. Government services may not always include adequate support activities. There is also a dearth of low-cost programs for this group of people living with dementia. 

Smith explored the idea of a “respite” program that would offer caregivers a few hours a week when they could deal with other demands while their loved ones were safe, active, and engaged with other people. She realized the program needed volunteer workers and private support to offer a program for a reasonable cost. As well, plenty of space for activities was needed, and so a community centre was a great locale.

Working with other community agencies including Vancouver Coastal Health, Lionsview Seniors’ Planning Society and the Alzheimer Society, Smith worked to create a local, sustainable program that could run with mostly volunteer labour. It wouldn’t try to be an “adult daycare,” which can be very expensive, but it would offer five hours, twice a week, of varied social activities: walks, bus tours, arts, sports, and a good meal in company with others.  

With funding largely provided through the Deep Cove Lions, My Parkgate BREAK launched as a pilot program to test the concept. It soon went from six participants to 12, with a growing staff of volunteers. Late in 2018, Pam Havens took over as supervisor. Havens was among the first graduates of Simon Fraser’s Gerontology Diploma program and was support and education coordinator of the Alzheimer Society of B.C. and later provided geropsychiatric education for Vancouver Coastal Health and Fraser Health.  

My Parkgate BREAK’s participants meet Tuesdays and Thursdays and take part in conversation, singing, art, sports like badminton and table tennis, brain and body fitness, and short bus trips. In good weather they may walk to a nearby community garden, or hang out with the preschoolers (the affection is mutual). Events like birthdays are occasions for cake and congratulations. They share a good lunch and coffee. The atmosphere is upbeat, with participants and volunteers sharing jokes and trading compliments. 

Both Smith and Havens told The Tyee: “They’re in a community.” Rather than be isolated at home or in an adult day care, they interact with almost everyone passing through Parkgate, from the young moms and dads with toddlers to the chess and cribbage players to the staff of North Vancouver Rec.

Canada's first dementia strategy released

Via the Public Health Agency of Canada: The Government of Canada Releases Canada's First Dementia Strategy. Excerpt:

Dementia is having a significant and growing impact in Canada, with more than 419,000 Canadians aged 65 years and older diagnosed with dementia. Two thirds of those diagnosed are women, and as our population ages, the number of Canadians affected by dementia is expected to increase. Dementia affects not only the person living with dementia, but also their families, caregivers, and communities. 

Today, the Honourable Ginette Petitpas Taylor, Minister of Health announced the release of A Dementia Strategy for Canada: Together We Aspire. This first national dementia strategy focuses on preventing dementia, advancing therapies, and finding a cure, as well as improving the quality of life of people living with dementia and caregivers. Budget 2019 proposed $50 million in funding to help advance the Strategy. 

The Strategy is a result of collaborative efforts between governments, researchers, health professionals, people living with dementia, and caregivers. It was informed by evidence and advice obtained from consultations across the country. This included valuable input received during the national dementia conference, as well as advice from the Ministerial Advisory Board on Dementia.  

The Strategy is a key milestone in Canada's efforts to create a country where people living with dementia and caregivers are valued and supported, where they have an optimal quality of life, and where dementia can be prevented, effectively treated, and better understood. 

The Minister of Health also announced funding for Phase II of the Canadian Consortium on Neurodegeneration in Aging (CCNA), a national platform for collaborative research in dementia, led by the Canadian Institutes of Health Research (CIHR). CIHR is providing $31.6 million, and partners-including provincial agencies and non-profit organizations-are providing an additional $14.4 million for a total investment of $46 million over five years. The research on dementia prevention, diagnosis, treatment and care as part of Phase II of the CCNA will support the Strategy.

Inner Workings: Family of protein fragments promises fresh view of Alzheimer's disease

Via PNAS: Inner Workings: Family of protein fragments promises fresh view of Alzheimer's disease. Excerpt:

Neuroscientist Joris de Wit was pretty sure he was on the right track as he homed in on a receptor for a potentially beneficial brain molecule. Known as sAPPalpha (soluble amyloid precursor protein alpha), the molecule is a seemingly benevolent sibling to amyloid beta, the peptide that forms clumps in the brains of people with Alzheimer's disease. De Wit's confidence grew when he received a call from his structural biologist collaborators. “Something is actually happening,” they told him.

For months, the group had been stymied—the receptor motif they were trying to characterize was floppy and unstructured. Then they decided to add a short peptide corresponding to a region of sAPPalpha. The receptor motif and peptide zipped together, and a model of the structure emerged.  

The resulting study, recently published in Science, shows that sAPPalpha binds to a receptor for the neurotransmitter glutamate, modulating the transmission of neural signals across synapses. The findings suggest that sAPPalpha can quell excess neurotransmission and thereby contribute to brain health. They also offer further clues of the part a special class of protein fragments plays in the development of Alzheimer’s disease.  

A hardy cadre of researchers is looking to understand the precise inner workings of amyloid precursor protein (APP) and its assorted fragments, including sAPPalpha—and what happens to those fragments when things go awry. Progress is slow and piecemeal in this potentially key subfield of Alzheimer’s research—and has been for years.  

Slowly, the picture is becoming clearer. One idea is that APP is a regulator of neurotransmission, explains Bart De Strooper, who co-led the study with de Wit at the VIB-KU Leuven Center for Brain & Disease Research in Leuven, Belgium. And different pieces of APP, notes De Strooper, appear to affect neurotransmission differently. A shift in the balance of their functions, as some fragments increase their activity and others lose influence, could contribute to the development of Alzheimer’s disease.  

The complexities of APP and its fragment progeny still often defy the efforts of researchers seeking to pinpoint functions and elusive drug targets. But the work of De Strooper, de Wit, and others is yielding fresh ideas in a field that many scientists say badly needs new approaches.

Why Pfizer didn’t report that its rheumatoid arthritis medication might prevent Alzheimer’s

Via The Washington Post: Why Pfizer didn’t report that its rheumatoid arthritis medication might prevent Alzheimer’s. Excerpt:

A team of researchers inside Pfizer made a startling find in 2015: The company’s blockbuster rheumatoid arthritis therapy Enbrel, a powerful anti-inflammatory drug, appeared to reduce the risk of Alzheimer’s disease by 64 percent. 

The results were from an analysis of hundreds of thousands of insurance claims. Verifying that the drug would actually have that effect in people would require a costly clinical trial — and after several years of internal discussion, Pfizer opted against further investigation and chose not to make the data public, the company confirmed. 

Researchers in the company’s division of inflammation and immunology urged Pfizer to conduct a clinical trial on thousands of patients, which they estimated would cost $80 million, to see if the signal contained in the data was real, according to an internal company document obtained by The Washington Post. 

“Enbrel could potentially safely prevent, treat and slow progression of Alzheimer’s disease,’’ said the document, a PowerPoint slide show that was prepared for review by an internal Pfizer committee in February 2018.  

The company told The Post that it decided during its three years of internal reviews that Enbrel did not show promise for Alzheimer’s prevention because the drug does not directly reach brain tissue. It deemed the likelihood of a successful clinical trial to be low. A synopsis of its statistical findings prepared for outside publication, it says, did not meet its “rigorous scientific standards.’’ 

Science was the sole determining factor against moving forward, company spokesman Ed Harnaga said.  

Likewise, Pfizer said it opted against publication of its data because of its doubts about the results. It said publishing the information might have led outside scientists down an invalid pathway. 

Pfizer’s deliberations, which previously have not been disclosed, offer a rare window into the frustrating search for Alzheimer’s treatments inside one of the world’s largest drug companies. Despite billions spent on research, Alzheimer’s remains a stubbornly prevalent disease with no effective prevention or treatment.  

Some outside scientists disagree with Pfizer’s assessment that studying Enbrel’s potential in Alzheimer’s prevention is a scientific dead end. Rather, they say, it could hold important clues to combating the disease and slowing cognitive decline in its earliest stages. 

Pfizer did share the data privately with at least one prominent scientist, but outside researchers contacted by The Post believe Pfizer also should at least have published its data, making the findings broadly available to researchers.  

“Of course they should. Why not?’’ said Rudolph E. Tanzi, a leading Alzheimer’s researcher and professor at Harvard Medical School and Massachusetts General Hospital.

After hearing concerns, Japan won't set target for cutting number of dementia patients after all

Via The Japan Times: After hearing concerns, Japan won't set target for cutting number of dementia patients after all. The full report and then a comment:

The government will scrap a draft proposal that set a numerical target for reducing the number of dementia patients, health minister Takumi Nemoto said Tuesday, citing concerns from patients and their families that they could blame themselves for failing to prevent the disease. 

Last month, the government proposed its first numerical goal on the disease — which involves a decline in cognition including memory loss — aiming to reduce the number of patients in their 70s by 10 percent over the next decade.  

The proposal was aimed at curbing growth in welfare spending at a time when the population is rapidly graying, but questions were raised because preventive measures are not scientifically proven. 

Additionally, the numerical goal had been widely seen as shifting away from the policy of creating a society where people can live comfortably even if they develop dementia.  

“We’ve heard from concerned parties that people who got dementia, despite trying their best to prevent it, would feel that they failed and lose their confidence,” Nemoto said at a news conference. 

The government will focus on efforts leading to good outcomes, rather than the number of patients, he added.  

The “prevention” mentioned in the proposal would now be defined as “delaying the onset of dementia and slowing the development of symptoms once patients develop them,” Nemoto said.  

Prime Minister Shinzo Abe’s Cabinet is expected to approve the guidelines on measures to cope with dementia later this month. 

An estimate by the Health, Labor and Welfare Ministry has predicted some 7 million people will have dementia in 2025, when the country’s baby boomers reach 75 years of age or older.  

In 2015, the government compiled a national strategy to support dementia patients by organizing local “dementia supporters” — people who have knowledge of the disease and are able to provide help to sufferers and their families. 

Specific measures for disease prevention include holding exercise lessons at local community centers, as it has been found that physical activity and social engagement could help prevent the disease.

The same issue of the Times has a report on how Japanese elderly are outliving their pensions.

The devastating biological consequences of homelessness

Via Nature News & Comment: The devastating biological consequences of homelessness. Excerpt:

When Serggio Lanata moved to San Francisco in 2013, he was stunned by its sprawling tent cities. “Homelessness was everywhere I looked,” he says. Lanata, a neurologist at the University of California, San Francisco (UCSF), was also struck by similarities in the behaviour of some older homeless people and patients he had treated for dementia in the clinic. Now, years later, he is embarking on a study that will examine homeless adults for early signs of Alzheimer’s disease and other degenerative brain disorders to better understand the interplay between these conditions and life on the street.  

The work, which is set to begin next month, ties into an ongoing effort by researchers at UCSF to understand the biological effects of homelessness in older people. Since 2013, a team led by Margot Kushel, director of the university’s Center for Vulnerable Populations, has followed a group of about 350 older homeless adults in Oakland, California, to determine why this group ages in hyper-speed. Although the participants’ average age is 57, they experience strokes, falls, visual impairment and urinary incontinence at rates typical of US residents in their late 70s and 80s. 

The research has drawn attention from politicians, economists and health-care providers across the country who are struggling to help the homeless and reduce their numbers. Although homelessness is a global problem, the situation in California is particularly acute. Nearly 70% of the 130,000 people without homes in the state are considered to be ‘unsheltered’, living on the streets or in locations unfit for human habitation, compared with just 5% in New York City. In the San Francisco Bay Area — California’s wealthy technology hub, which includes Silicon Valley — roughly 28,200 people are homeless.

The United States’ homeless population is also greying: rising housing prices in many areas have increased the rate of homelessness among ‘baby boomers’ born between 1954 and 1964. But many hospitals, police and homeless shelters are unprepared to deal with the special needs of an ageing homeless population. 

“I hear from shelter providers, ‘Gosh, we are set up for people who use drugs but we have no idea how to manage dementia’,” Kushel says. By understanding how homelessness can accelerate ageing, her team hopes to identify ways to curb suffering and save governments money. 

“This crisis is upon us,” says Dennis Culhane, a social scientist at the University of Pennsylvania in Philadelphia. “A lot of money will be spent on this population. We can draw upon Margot’s data and learn how to spend that money wisely — or else we’ll just spend and still have lots of human misery.” 

He and his colleagues estimate that Los Angeles, California, will spend $621 million annually on emergency medical care, nursing home beds and shelters for homeless people over the age of 55 between 2019 and 2030. Their analysis suggests that the city could reduce its spending by $33 million per year if it provided homes to elderly people who lack them.

Prevalence of dementia in the People’s Republic of China from 1985 to 2015: A systematic review and meta-regression analysis

Via BMC Public Health: Prevalence of dementia in the People’s Republic of China from 1985 to 2015: a systematic review and meta-regression analysis. The abstrct:

Background 

In China, the most populous developing country in the world, dementia represents a serious challenge. We performed a large-scale systematic review and meta-regression analysis to elucidate the prevalence of dementia and its subtypes and to identify potential factors underlying the differences between articles. 

Methods 

A comprehensive literature search was conducted in the following databases to identify studies published up to December 2015: Cochrane Library, CBMDISK, Chongqing VIP, CNKI, PubMed and EMBASE. All statistical analyses (including subtype and meta-regression analyses) were performed with R version 3.3.3.  

Results 

In total, 51 surveys were selected. The pooled prevalence rates of dementia and its main subtypes, namely, Alzheimer’s disease (AD) and vascular dementia (VAD), for the population aged 55 years and older were 4.03, 2.44 and 1.09%, respectively. The outcomes showed that the meta-regression analysis was affected by the publication year, sample size, region and diagnostic criteria. 

Conclusions 

Our analysis provided reliable estimates of the prevalence of dementia/ AD/ VD over the past 30 years, which may be affected by education level, and diagnostic criteria. The prevalence of AD/VAD was higher in northern than in southern China, which warrants further study.

UK: Number of people with dementia living alone predicted to double

Via The Guardian: Number of people with dementia living alone predicted to double. Excerpt:

The number of people with dementia who endure the “frightening isolation” of living alone will double to 240,000 over the next 20 years, an Alzheimer’s charity has predicted. 

They experience a crushing loneliness after suffering a loss of friends and social contact, compounded by public “awkwardness” about dealing with people with dementia, according to the Alzheimer’s Society.  

Jeremy Hughes, the charity’s chief executive, said: “Too many people face a future alone with dementia and without adequate support. Dementia shouldn’t mean becoming a prisoner in your own home. 

“The frightening isolation of so many people with dementia is a wake-up call for all of us. It shouldn’t mean that everyday activities, like going to the local shop, fill you with anxiety and dread.” He added that too many people with dementia end up feeling “abandoned and isolated, with nowhere to turn”.  

When the charity surveyed 354 people with dementia, 58% said they experienced loneliness and 56% said they suffered from isolation. The same number (56%) said they had been losing touch with people since being diagnosed. 

Ernie Malt, who has vascular dementia, told the charity: “I do get lonely. I have family, but they’re not nearby, and it’s not very often that people come to see me at home. 

“When you live alone it’s the little things that cause you problems, like walking into the kitchen and not knowing why you’re there, or trying to do something on the computer but not having a clue what your password is.” 

A sizeable minority (33%) of dementia patients have become emotionally distant from their friends since their diagnosis, while 24% say some of their friends do not know about it.  

The number of people with dementia in the UK living on their own would rise from 120,000 to about 240,000 by 2039, the Alzheimer’s Society estimated.

The arts dispel medical students’ qualms about dementia

Via JAMA Network: The Arts Dispel Medical Students’ Qualms About Dementia | Dementia and Cognitive Impairment. Excerpt:

Maybe never before had a rendition of “Take Me Out to the Ball Game” had more meaning for Alyssa Vigliotti. As a first-year student at the Penn State College of Medicine, she launched a research project to evaluate whether a creative storytelling program had benefits for people with dementia. Called TimeSlips, the program uses pictures that prompt participants to create stories about the image. 

Or, in this case, break into song. 

Vigliotti said one of her favorite moments during the 6 months she collected data was watching people in the program—all with mild to moderate or severe dementia living in a rural Pennsylvania retirement community—react to a picture of a young boy at a baseball stadium. “Randomly, out of the blue, some of the residents started singing…and it was just such a cool experience,” she recalled.  

It was one of many moments in which the residents, some who had been rather withdrawn, began to reminisce, concoct new stories, or simply smile. “That’s what made it so exciting and impactful on me,” she added.  

Vigliotti’s study reported no significant changes in dementia severity, but it demonstrated some benefits in quality-of-life measures such as interactions with other residents and expressing pleasure. Observing the program “showed me these are real people who still have real thoughts and real memories and can communicate, just in a different way,” she said. 

Vigliotti isn’t the only medical student to have had that reaction. Research also shows that TimeSlips and other nonclinical arts-centered programs in medical school curricula can improve students’ attitudes about dementia.  

Tackling an Important Issue 

As the number of people diagnosed with dementia increases and the search for effective treatments appears stymied, experts said that addressing future physicians’ attitudes has become more pressing. 

“[T]here’s been a 99% fail rate with drugs in the field,” said Daniel George, PhD, a Penn State College of Medicine assistant professor who teaches fourth-year medical students how to conduct TimeSlips sessions. “[T]hat gives us an imperative to think creatively and think in different ways about what it means to care for people with memory loss.”  

George said students have told him they feared that they wouldn’t be able to connect with people who have dementia and that it would be challenging to work with them. Students also worried that they would say the wrong thing or have an epithet shouted at them. 

“They had a whole host of assumptions and fears that they were nursing,” George said. However, those fears weren’t realized. Once they got involved with TimeSlips, “I was seeing a dramatic attitude shift in the way my students regarded people with dementia,” George said. 

He collected data to validate that observation. His 2013 study in Academic Medicine measured 22 fourth-year medical students’ attitudes toward people with dementia living in a Pennsylvania retirement community. After 8 sessions, students’ scores improved in 19 of 20 items on the Dementia Attitudes Scale (DAS); 12 of the 19 were significant improvements. 

“In almost every case and every student I’ve ever had, [their views] shifted dramatically,” George said.

BMJ: WHO dementia guidelines highlight a lack of evidence for lifestyle interventions

Via The BMJ: WHO dementia guidelines highlight a lack of evidence for lifestyle interventions.

People can reduce their risk of dementia by adapting their lifestyle—such as getting regular exercise, not smoking, and maintaining healthy blood pressure, cholesterol, and blood sugar levels—according to World Health Organisation guidelines.  

Researchers have criticised the guidance, however, saying there is a lack of evidence for the effectiveness of many of the recommendations on how to prevent cognitive decline and an absence of cost or benefit calculations.  

The guidance, which brings together decades of research, outlines a number of recommendations and indicates the quality of evidence behind them.  

It is targeted at healthcare providers and aims to give them evidence based recommendations on lifestyle behaviours and interventions and advice on the management of specific physical and mental health conditions, to delay or prevent cognitive decline and dementia. 

Recommendations advise that all adults should follow a healthy and balanced diet and that those with normal cognition should take up physical activity.  

They advise against the use of vitamins B and E, polyunsaturated fatty acids, and multi-complex supplementation to reduce the risk of cognitive decline, and say that although there is “insufficient evidence” to recommend the use of hearing aids to reduce the risk of cognitive decline, these should still be offered to people with hearing loss. 

Many of the recommendations included in the report were rated as having low or moderate quality evidence, highlighting the need for further investigation.  

According to WHO, approximately 50 million people worldwide now have dementia, with around 10 million new cases every year. It is estimated that by 2030 there will be 82 million people living with the condition. 

The new guidelines follow the launch of the WHO Global Dementia Observatory in December 2017 to compile information about what countries are doing around dementia, such as national plans, dementia friendly initiatives, awareness campaigns, and facilities for care. The observatory has so far collected data from 21 countries, including Bangladesh, Chile, France, Japan, Jordan, and Togo.  

Bart De Strooper, director of the UK Dementia Research Institute at University College London, said: “The WHO report summarises a series of recommendations for a healthy lifestyle, which may also have beneficial effects on the incidence of dementia. Overall, however, little hard evidence is available to show that modifying environmental factors modify the risk for dementia strongly.  

“Absence of evidence is not evidence of absence, and hypertension, obesity, diabetes, social isolation, and depression are all strongly correlated with poor health and decreased life expectancy, although the effects on the prevention of dementia need further clarification.” 

Gill Livingston, professor of psychiatry of older people at UCL, said: “It is difficult to distinguish between lack of evidence that intervention decreases the risk (say with obesity) and lack of evidence that decreasing the risk reduces cognitive impairment and dementia (say, for example, social interventions around isolation—studies on this have not been done and theoretically are very hard to do). Also, there is no formal calculation of the cost and benefits.”

WHO: Risk reduction of cognitive decline and dementia

WHO has published Risk reduction of cognitive decline and dementia. Click or tap through to download the foreword and executive summary. The overview:

The WHO Guidelines on risk reduction of cognitive decline and dementia provide evidence-based recommendations on lifestyle behaviours and interventions to delay or prevent cognitive decline and dementia.  

Worldwide, around 50 million people have dementia and, with one new case every three seconds, the number of people with dementia is set to triple by 2050. The increasing numbers of people with dementia, its significant social and economic impact and lack of curative treatment, make it imperative for countries to focus on reducing modifiable risk factors for dementia. Action area 3 of the Global action plan on the public health response to dementia 2017–2025 is risk reduction. 

These WHO Guidelines are an important tool for health care providers as well as governments, policy-makers and other stakeholders to strengthen their response to the dementia challenge. 

Related link: Global dementia action plan