Opinion

Is research on Alzheimer’s disease and dementia being oversold?

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6 Comments
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  • Larry W. Chambers, Professor Emeritus, McMaster University says:

    On June 19, 2017, the Alzheimer Society of Canada and the Canadian Consortium on Neurodegeneration in Aging with 34 partner organizations released the results of the James Lind Alliance (http://www.jla.nihr.ac.uk/) project on dementia research priorities in Canada. Approximately 1,200 Canadians living with dementia and their caregivers identified unanswered dementia research questions. A representative group of persons living with dementia and their carers ranked these questions and identified the top ten dementia research priorities. The top ten list for Canada is available at http://alzheimersocietyblog.ca/top-10-research-priorities/..
    The top ten priorities from this innovative project are what the Healthy Debates “Dementia research is oversold” article emphasized. The article encourages the need to “promote the science of improvements in care patients receive from family physicians, care homes and assisted living…to help health care providers deliver better care to persons living with dementia.”
    Canadian researchers should focus on these ‘validated’ ten dementia research questions as a priority so that resources allocated to their research activities will “not come at the expense of societal responsibility”.

  • Scott Dudgeon (former CEO, Alzheimer Society of Canada says:

    The authors are to be commended for a thoughtful article. The article focuses on flaws in drug research as illustrated by specific dementia research examples- exaggerated claims, obscured shortcomings in findings, etc. Another reason for shifting focus away from cure is the fact that by the time people exhibit discernible symptoms of dementia, they have experienced significant and irreversible brain cell death. Cure is not a reasonable goal, until we can treat people who are asymptomatic. Accordingly, dementia research will be more effective to the extent that resources are shifted in favour of research regarding the following priorities:
    1) bio markers and other predictors of high risk of dementia;
    2) prevention and risk mitigation – it is clear that physical activity, diet, social connections and intellectual exercise all have preventive properties. We need research to help us get more granular about this knowledge (e.g. specific type, duration and intensity of exercise).
    3) care improvement – rehabilitation strategies; improvement of care processes that support dignity; triggers and management of psychiatric symptoms, including responsive behaviours; end-of-life care.

    I agree with the authors that resources need to be redirected to research goals that have a reasonable chance of improving the lives of people with dementia.

  • Rick says:

    Holy cow!

  • Dr. Howard Chertkow, Scientific Director CCNA, Professor of Neurology, McGill University says:

    I have read with interest the comments of Warrick et al., yet I am confused about what is the message being transmitted. As a physician, one is trained from the first day of medical school that the most important thing to be done for patients is to encourage them to control vascular risk factors such as “high blood pressure, obesity, diabetes, and smoking”. Does anybody think otherwise? The fact that only 1/4 elderly individuals with high blood pressure have it properly controlled is both a challenge (how can we do it better) and a disappointment (even 50 years of strongly encouraged treatment, and a wealth of effective medications, have not abolished hypertension). As for the other risk factors, it is evident that poverty, lack of education, social isolation, poor nutrition, may predispose to dementia (although their exact role and extent remain debated). But this article implies (but is too clever to outrightly suggest) two elements that are highly questionable: 1. Knowing risk factors is the end of the story. Simply abolish these risk factors, and this disease (and a lot of others) will disappear. 2. We will never have a medical therapy that stops or prevents or reverses Alzheimer Disease or mixed dementia anyway. One would have to respond to these implied statements in the following way. For #1 – “We know SOME of the risk factors, but what is it that we do NOT know? What exactly IS it in the exposome, in epigenetics, in the environment that causes dementia? And if we really mount interventions to prevent or reverse or negate these factors (assuming that we can pin them down sufficiently), what degree of prevention will ensure? Theoretically Dr. Brayne suggests 1/3 of cases could be prevented, but that is based on theoretical models. Surely the impetus should be to mobilize the research community to carry out the research necessary to prove there is actually this degree of benefit. But are the authors calling for the community to actually carry out these expensive trials? I am not at all sure. For #2 – Since we do not know the cause of Alzheimer Disease (or Lewy Body Dementia, or Frontotemporal dementia, or most of the Mixed dementias with elements of neurodegenerative disease), isn’t it premature to throw in the towel? I don’t know how far away we are from real pharmacological cures, and neither do these authors. Why is one valid statement (“anti-amyloid therapies have not produced results”) equated with another -(“there will never be medical cures”)?
    In fact, the neurodegenerative diseases are a huge medical challenge, and one that is not going to go away. Yes, hype and overselling of any therapies for illness is always bad. Medicine has always been rife with premature declarations of therapeutic victory. But I don’t see this as much evident in the dementia field (where the main declarations have been of failed anti-amyloid trials lately!), as much as I see the valid concern of patients, families, and policymakers that more can be done, more effort is needed, and that more funding might result in more rapid progress against the diseases. We do not know what causes these diseases, so (unsurprisingly), we do not know yet how to cure them. Lets mobilize to fight the dementias with the energy, people and funding that might make a difference.

    • Scott Dudgeon (former CEO, Alzheimer Society of Canada says:

      Howard’s remarks about the work to be done on prevention are bang on. I share his concern that the disappointing results in drug trials should not be seen as a reason to throw in the towel. Given the rapidly increasing impact of dementia on the lives of Canadian families we need to increase funds for dementia research and redirect these resources for prevention (as Dr. Chertkow suggests) and improving the capacity of families, long-term care and home care workers to help people with dementia live dignified lives.

Authors

Larry W. Chambers

Contributor

Larry W. Chambers has authored articles and books on disease prevention, improvements in long-term care homes and innovative approaches for continuing professional development. He is Research Director of the Niagara Regional Campus, School of Medicine, McMaster University, and scientist at the Bruyère Research Institute.

Natalie Irene Warrick

Contributor

Natalie Irene Warrick is a PhD Candidate at the Institute of Health Policy, Management and Evaluation, University of Toronto, Ontario, Canada.

Carol Brayne

Contributor

Carol Brayne is a professor at the University of Cambridge’s Institute of Public Health, Cambridge, United Kingdom.

Lon Schneider

Contributor

Lon S. Schneider is a professor at Keck School of Medicine at the University of Southern California, Los Angeles, California, United States.

Mimi Lowi-Young

Contributor

Mimi Lowi-Young is the former Chief Executive Officer of the Alzheimer Society of Canada, Toronto, Ontario, Canada.

Doug Brown

Contributor

Doug Brown is the director of research and development at the Alzheimer’s Society (UK), London, United Kingdom.

Rupert McShane

Contributor

Rupert McShane is a professor at University of Oxford and lead at Cochrane Dementia and Cognitive Improvement Group, John Radcliffe Hospital, Oxford, United Kingdom.