Dementia, a Worsening Public Health Emergency

• The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias and Memory Loss, 6th edition
• Nancy L. Mace and Peter V. Rabins
• Johns Hopkins University Press (2017)

[Editor’s note: Over the past year, Tyee contributing editor Crawford Kilian has explored the public health issue of dementia from many angles. As he nears the end of his inquiry, he asks readers to help by sharing insights, experiences, research and resources.]

This book unexpectedly reminded me of Dr. Spock.

In the 1940s, Dr. Spock’s Baby and Child Care was the bible for parents of war babies and the first wave of boomers. I’m happy to see that his book is now in its tenth edition. Spock reassured young parents from the opening line: “You know more than you think you do.”

The 36-Hour Day is a similar book of advice, but for the other end of life when parents or spouses are dealing with the slow disappearance of a loved one. It is considerably less reassuring, but like Dr. Spock, Mace and Rabins have provided guidance to families for decades. If a friend or loved one were diagnosed with Alzheimer’s or some other dementia, this is certainly the book I would turn to first.

I would not turn to it for comfort, but to soften the shocks of caregiving. In dealing with dementia, we rarely know more than we think we do. Mace and Rabins prepare us for a long, hard, fighting retreat whose joys are all the more intense for being rare.

The challenges for the caregiver are intense as well. How does a wife deal with a husband who, after decades as the unflappable pillar of the family, suddenly has “catastrophic reactions” — tantrums — to any frustration or stress? How does a daughter get her mother step by careful step into the shower, and then instruct her on what to do? How does anyone ensure that a loved one is properly nourished when they forget to eat, then forget to chew?

Mace and Rabins offer sound advice, but it may be easier to give than to follow. Even at the best of times, a capable adult may overreact if facing too many simultaneous demands; for the person with dementia, just buttoning a shirt or tying a shoelace can be too much. A tantrum in a beloved parent is as upsetting and frustrating as it is in a beloved child, perhaps more so.

“First,” Mace and Rabins say, “you must accept that these behaviours are not just stubbornness or nastiness but a response the person with dementia cannot help.”

So the caregiver, however stressed, must keep calm and carry on. He or she must have the presence of mind to recognize what set off the catastrophic reaction, and promptly change the subject. Better yet, the caregiver must see what triggered the reaction and prevent it from happening again: by changing lace-up shoes to slip-ons, for example.

Of all the conditions that may set off a catastrophic reaction, the toughest may be “being cared for by someone who is rushed or upset.” If you’re trying to get Mum or Dad to a doctor’s appointment on time, while also worrying about your job, your spouse, and your own kids’ problems, you’re very likely to seem rushed or upset — or both.

The book goes through a spectrum of issues most of us don’t even want to think about, let alone deal with: taking charge of the person’s finances, dealing with legal issues, coping with changing roles (such as diapering a parent). And on top of everything else, the caregiver must also find time for respite, to gain a few hours for rest as well as for other duties. Mace and Rabins offer sound advice for such problems, but Canadians will certainly need to adapt some of it to Canadian laws, health care and local conditions.

The 36-Hour Day is also a book that ought to be read, re-read, and annotated by every Canadian politician. It sets out, in calm detail, what is happening to 400,000 of their current voters plus the million or more voters who must care for their loved ones with dementia. Those numbers are growing every day.

Simply by describing what caregivers must expect and respond to, Mace and Rabins also describe an enormous public health problem: depression shared by persons with dementia and their caregivers, stress-related disabilities that keep caregivers out of the workplace, and excess demands on a health system that still can’t offer pharmacare or dental care — a lack that adds to the burden on caregivers and their families.

The numbers of Canadians with dementia will only grow in future decades; political decisions will affect the quality of life for them, their families and neighbours, and the entire national health-care system. The right policies could actually save a fortune in caring for the elderly (and the rest of us).

For example, gum disease is associated with dementia; dental care could deal with the problem early, and perhaps delay or even prevent the onset of dementia. Hearing loss often leads to social isolation and dementia. Free or cheap hearing aids could keep old people living independently for years, thereby enabling their spouses and children to keep working. More old people and their families would keep paying taxes instead of absorbing them.

We have ignored such findings because we prefer not to think about dementia and the end of life until we are forced to: those are other people’s problems, thank God I didn’t get dementia, too bad that nice lady next door has to look after her husband.

But if we recognized the financial and emotional problems faced by families with dementia, we could reduce both their scope and their intensity by improving our health-care system. Whatever it might cost us in taxes would be repaid with interest through the work and consumption of people spared the disease, and the productive energy of those who don’t need to be caregivers.

Even when dementia is inevitable, we might be able to turn its care from a fighting retreat to a mere siege, where those we care for can enjoy life with dignity, comfort and surprising flashes of joy.

This series is made possible by a grant from Bruce and Gail Macdonald. Find the rest of its pieces here.