TORONTO — Tending to elderly patients with dementia is a massive challenge, says Dr. Michael Gordon, medical program director of the palliative care unit at Baycrest.
Gordon, who is also a professor of medicine at the University of Toronto, recently wrote a guide for health-care professionals and families called Late-Stage Dementia, Promoting Comfort, Compassion and Care.
He said that people over age 80 have a one-in-three chance of developing dementia.
“It is a rising tide. The World Health Organization has highlighted the dramatic increase in the number of older people in the population that can expect [to be affected by dementia] in the next few decades.”
Everyone in health care deals with older patients, Gordon said, and 20 to 35 per cent have dementia, which will inevitably progress.
He said that medication can’t alter dementia, and “patients will ultimately end up needing full-time help. This places an unbelievable demand on the family.”
Some families can care for patients themselves, he said, but a large number of patients end up in nursing homes. “Toward the latter part of the disease, there is no communication or self care, and difficult decisions have to be made.
In treating late-stage illness, Gordon said, families must decide whether to trade comfort for modern technology. “There is always [some treatment that will provide] beneficial effects, but at a high price.”
Late-stage dementia is like terminal cancer with its stages of progressive deterioration, but family members have difficulty accepting the final stage of dementia in loved ones, he said.
“There seems to be more denial and disbelief about what is happening, or there may be strong cultural and religious obligations to maintain life at all costs. This can complicate matters when it comes to making the best care decisions for a dying loved one and lead to tensions between the patient’s family and the medical care team.”
Gordon advises families to consider their options carefully.
“When a person is no longer able to participate in the basic acts of life, they are often sent to a general hospital where they die a disheartening and uncomfortable death,” he said.
“Many older people end of dying without [having their symptoms] treated. I have experienced it professionally and personally. It’s easy to end up on the wrong end of the health-care system.”
To avoid this, he said, families need to make sure they have conversations with their loved ones in order to learn about their values. “For example, ‘This is when I want you to stop treatment.’
“Ask them how they feel about getting fed through artificial nutrition and hydration. Who would want that? Most people want comfort, not suffering.”
A good time to have the conversation is when something happens to someone else, he said. “Ask your loved one what they would want in the same situation.”
Gordon’s goal, he said, is to prevent people “from spending their last days on earth in the jaws of medical technology, when the alternative can be comfort, care, and compassion.”