2031, over 750,000 Canadians will have Alzheimer Disease and related
dementias 6. Almost 25 per cent of Canadians now have someone with
Alzheimer Disease in their family 7.
experience of caring for a loved one with dementia changes you forever.
Dementia forced me to look at who 'the whole' are and what we value in
others; how we identify those who cannot think but who must only be. In
our hyperactive and hyper-cognitive society we value words and action.
There is no room for those who can only be; we are in fact losing the
art of being.
My Father used to say to me: Slow
down, take time to smell the flowers. What my Father was really saying
was: I need you quietly by me. I was always so busy doing - in the last
years at the nursing home I was always trying to keep myself busy
tidying, organizing drawers, cutting my Father's hair - that I did not
take enough time to just be with him. To sit by him, in silence if I
had run out of things to say. It was too difficult, too foreign. What
the caregivers of the demented need to relearn is the beauty of being,
of silence. Having is no longer important. Touching and presence are
comfort and take precedence over everything else.
Palliative or End-of Life-Care
Canadians would prefer to die at home. Wherever death occurs, only 1 in
10 presently receives integrated palliative care to enable a
comfortable, dignified death to occur (Senate Report: Quality
End-of-Life Care: The Right of Every Canadian June 2000). There is no
national palliative care program. On January 4, 2004 the compassionate
family care leave benefit takes effect. Employed caregivers who qualify
will receive $413.00 per week for six weeks. Certainly a step in the
right direction but what happens when a loved one requires months of
What Does the Future Look Like for Canadians and Their Caregivers?
the long awaited Romanow Report tabled in November 2002 advocated first
steps for both national home and pharmacare programs, as of now there
are no national programs or standards in place. Nor are there national
standards for cost or care for long term care facilities across this
With a growing shortage of qualified
health care workers and Baby Boomers turning 50 at the rate of 500,000
per year 8, many with smaller families or no children at all, this
urgent question must be addressed: who will care for them when they
become frail and dependent?
Every day I talk to
caregivers who are experiencing true anguish - professionals who cannot
care with compassion because of restricted staff and funding, and
family caregivers who are being forced to consider institutionalizing
their loved ones because of drastic home care cutbacks. These stark
realities lead one to believe that those who make the long term care
policy and funding decisions do not have elderly relatives who will
ever need long term care; otherwise how can they continue to justify
their ageist treatment of our most frail and vulnerable citizens?
Canadian Study of Health and Aging Working Group: Canadian Study of
Health and Aging: study methods and prevalence of dementia. Can Med
Assoc J 1994; 150: 899-913. And personal communication, CSHA. (Note:
The CSHA only surveyed those over the age of 65.)
7) The Aluminum Association Alzheimer's Disease Survey, Public Opinion Strategies, 1997.
8) Canadian Association for the 50 Plus 2002