Expert: Mary Gordon - 6/26/2005

Question
Hi Mary,

I am compiling info for a research paper and came across your website. I have this question.

Other than a cure, what one thing would you want or need as a caregiver?

Thanks for your time,
    Denny  

Answer
Dear Denny, I think the answer to that question would very much depend on what country you live in.

I'm a Canadian, living in Toronto, Ontario. Eldercare is much less difficult to obtain for families here than in the US, and very much less expensive, due to our socialized medicine, network of "not for profit facilities" and other social supports.

It is therefore much, much easier for middle class families to care for loved ones at home, and find good and affordable homecare support, as well as permanent placements for them when it is no longer possible to care for them at home. Qualifying for supports does not mean that the person has to use up all their assets first, as is often true for people in the US. So, although Alzheimer's is always going to be a devastating illness, it results in much less financial and emotional desperation here than in the States.

As a person who answers questions on a volunteer basis, one thing that would be great is if family doctors were better informed about Alzheimer's and took the time to help families understand what it means. It never ceases to amaze me how many family doctors are very cavalier about signs of dementia in older people. Quite often, when families report problems, the doctor is dismissive and does not properly investigate or diagnose the problem, much less help the family to understand the implications of the disease. Many people write to me with questions - and even if their loved one was diagnosed after proper examination, no medical professional has bothered to explain how their loved one will progress, or what kind of behaviours to anticipate. Families are rarely steered to resources by their health care professionals either. They are not often told about the important legal and financial things that need to be in place while the person can still sign documents to enable a family to look after them. In the US, informed estate planning is particularly crucial as early in the illness as possible, to ensure that Medicaid rules are understood, including "look back" periods.

Alzheimer's ends up being a more difficult journey for the family when they don't fully understand what they are up against - and I do think family doctors in particular need to be more proactive on that front.  

Mary Gordon
Toronto