Alzheimer’s disease: need for a national strategy
My open note to the prime minister
Dear Prime Minister Harper:
May I suggest that the Canadian government, under your leadership and in consultation with the premiers of provinces and territories, adopt a national strategy on Alzheimer’s disease and related forms of dementia? Would your leadership urge the House of Commons and the Senate to give their political weight to this cause? Would you task the federal minister of health to immediately consult with her provincial and territorial counterparts and draft together the blueprint for such a national health initiative, to be ratified, if need be, at a First Ministers Conference?
I believe I echo the sentiments of most Canadians, if not all, when I bring this particular issue to your kind attention. You will agree we need national leadership to move this health agenda forward and thereby ensure we cope better with this health issue as a nation, now and into the future.
With optimism and in anticipation, I thank you, Prime Minister, for your urgent and favourable action.
Yours truly, Dr. Rey D. Pagtakhan
Call for a national strategy
The first call for such a national strategy came from those in the best position to know about the disease and its impact on patients, families, caregivers, researchers, the healthcare system and society – from the Alzheimer Society of Canada and the National Advisory Council on Aging. These two organizations have been at work since 2004 – eight years ago – when they first issued the joint call for a “National Strategy on Alzheimer’s Disease and Related Dementias.” It has been their joint position that “a co-ordinated and comprehensive approach is required at the national level involving government, agencies and people affected by Alzheimer’s disease or a related dementia.”
It is instructive to briefly capture the birth and growth of the Alzheimer Society of Canada if only to highlight the credibility that the Society has earned in its 35 years of sustained work and attention to the disease. Be it said that the impetus for its birth came about in 1977 when researchers engaged in Alzheimer’s disease at the University of Toronto and Surrey Place Centre deeply felt a void in the support available for the families of their patients. Working with a professional staff and a resource person, they formed a steering group, identified three major goals – family support, education and research – and held a founding meeting a year later with 45 in attendance. It was “the first organization of its kind in the world.”It went fully nationwide in 1993, having established by then formal affiliations with the 10 like-minded provincial organizations. Much earlier in 1984, it linkedwith the Alzheimer’s Association in the U.S. and with representatives from seven other countries to form Alzheimer’s Disease International.
Imagine and realize the toll
Imagine seeing our parent, spouse, friend, loved one or oneself robbed of memory, of the ability to remember events, to think and to reason, and to do the usual requirements of daily living and social relationship.
Imagine watching our loved one, whom we care for, progressively worsen and manifest confusion, irritability, aggression, mood swings, trouble with language, long-term memory loss and ultimately complete withdrawal from family and society; loss of bodily functions, including total loss of speech, over a period of seven years – the average life span following diagnosis before death. Less than three per cent of them survive beyond fourteen years after diagnosis. Typically, the immediate cause of death is bacterial infection of the lungs and the blood stream or severe dehydration, not the Alzheimer’s disease itself.
Imagine, as well, that whom one of us sees is only one of the estimated 500,000 fellow Canadians and 35 million fellow citizens of the world who have the disease – 86 per cent of whom in Canada are over the age of 65.
Imagine we are identifying one Canadian every 5 minutes – 103,000 cases in 2011 – and doubling that magnitude 25 years hence.
Furthermore, do we realize:
- that family caregivers spent approximately 259 million hours caring for someone with dementia in 2010 – a figure likely to triple in 25 years – and that up to 75 per cent of caregivers could develop physical and psychological illnesses, including depression;
- that family caregivers could lose their earnings just as there is a significant economic cost due to the loss of productivity among affected employees;
- that health care costs of the disease to the country and citizenry – $22 billion a year to date – are expected to exceed $872 billion over the next 25 years;
- that there is yet no known medicine to prevent, reverse or stop the natural progression of the degenerative disease? (While medications are available, they are palliative and not curative.)
Such, indeed, is the toll on patients, families, and caregivers in the workplace and on the nation.
Lest I might have created a different message, let me make one emphatic point from the lips of those with the disease: They ask for our understanding of their plight, not for pity, as they progress through their debilitating and devastating disease with their loved ones.
A national strategy can do better and with less
What would an established national strategy accomplish that its absence can undermine or pursuits can only be undertaken with more difficulty and at greater cost? The answer lies in the rationale behind the original call for it and can be captured in these terms: “coordinated and comprehensive approach at the national level involving (the key stakeholders) government, agencies, and people affected by Alzheimer’s disease or a related dementia (patients, families, and caregivers)” [terms in parentheses for amplification and emphasis are mine].
At once I can envision:
- the many benefits that will ensue from having research efforts at finding a cure or preventive medicine coordinated at the national level that, in turn, will facilitate expanding them into international collaborative endeavours;
- accurate statistics of the disease to ascertain the magnitude of the health issue nationwide that can be readily collected and made promptly available to national policy makers;
- development of appropriate policy initiatives that see incentives for youth and student involvement, participation by more seniors and changes in tax-policy would be stimulated;
- planning for future human resource needs – adequacy of appropriately trained medical care professionals (doctors and nurses) and engagement of other allied health professionals such as physicians’ assistants, physical therapists, occupational therapists, would be timely and coordinated and would be more conscious of the multicultural aspects of health; and
- a public education and awareness campaign nationwide would be that much more efficient and effective.
There may be more. Highlighting the active involvement of the national government, as would be engendered by adoption of a national strategy, would do much to erase or overcome the stigma that still surrounds the disease – a barrier to early diagnosis and management. (World Alzheimer Report 2012 – Overcoming the Stigma of Dementia, published by Alzheimer Disease International)
Our understanding of Alzheimer’s disease has vastly advanced since Dr. Alois Alzheimer, a German neuropathologist and psychiatrist – after whom the disease is named – first reported on his patient in 1906. Doctors today can utilize a variety of assessment tools, including tests for intellectual functioning and memory, medical imaging of the brain, biochemical test of the cerebrospinal fluid, and certain blood tests – in addition to taking the history of illness from patients, families and caregivers and doing physical, neurological and psychological examination of the patients. This collective approach to diagnosis has helped not only in excluding alternative diagnosis but also in ascertaining the stage of the disease.
While it is little comfort to know that the vast majority of diagnosed cases are sporadic in nature, not inherited – only about 0.1 per cent of patients are a result of alterations in certain genes with their usual age of onset before 65 – this fact should cause us to pause and reflect that no one can predict who will or will not develop the disease.
The above-noted facts and figures paint an alarming picture of a looming health and social crisis, particularly with our ageing society.
Laudable as it is that the Government of Canada has invested more than $176 million in research to find ways to stop, reverse, or better still, prevent Alzheimer’s disease,it behooves you, Mr.Prime Minister, to heed the call. I respectfully say Canada cannot afford for too long to be without a National Strategy for Alzheimer’s disease and related forms of dementia.
Dr. Rey D. Pagtakhan, former lung specialist and Professor of Pediatrics, Parliamentary Secretary to Prime Minister Jean Chretien and senior federal minister, is widely published and lectured in Medicine and Politics and has been the recipient of several awards and honours, including the honorary degrees Doctor of Laws and Doctor of Science, the Philippines’ Presidential Citation Pamana ng Pilipino Award, and the Governor-General Queen Elizabeth II Silver, Golden and Diamond Jubilee Medals.