By Heather Campbell Pope
This is Part 1 of a blog series on men and dementia.
Dementia can occur in both men and women, yet mainstream dementia culture frames it as a women’s disease. A few years ago, the Alzheimer Society of Canada launched a nationwide campaign that aimed to make the disorder “a women’s issue.” In the time since, there has been no similar focus on men. This is despite men being affected as patients and caregivers.
The breast cancer movement has faced a similar critique. Some critics of the pink ribbon campaign say that it has feminized the illness, reinforcing the misconception that breast cancer only happens to women.
For better or worse, this criticism has gained some support despite men accounting for less than one percent of all breast cancer cases. It is recognized that the stigma of being a man with a “women’s disease” can delay diagnosis, making survival less likely. As Beyoncé’s father, Mathew Knowles, recently said on Good Morning America after going public with his breast cancer diagnosis, “Men want to keep it hidden because we feel embarrassed. And there’s no reason for that.”
In contrast to breast cancer, the gender difference in dementia is less extreme, making its feminization even more misguided. While it is commonly reported that two-thirds of diagnosed dementia cases are women, the unspoken statistic is that one-third are men. Thirty-three percent is hardly negligible; at a minimum, the number challenges the feminist notion that dementia is a women’s disease.
Context also matters. For instance, the limited evidence suggests that the majority of people with dementia who come into conflict with the criminal justice system are men:
"Men like Second World War veteran Jack Furman, who at age 94 was charged with second degree murder after he allegedly attacked his care home roommate with a shelf; and 74-year-old Piara Singh Sandhu who was charged with two counts of second degree murder after he allegedly pried the metal base off a bedside table and bludgeoned his two roommates to death; and widower Peter Brooks, who at age 76 was convicted of second degree murder in the death of a fellow long-term care resident and sentenced to life in prison with no parole eligibility for 10 years."[i]
These men are our husbands, fathers and friends. Yet in part because they exist in smaller numbers, the women-centred dementia movement has kept them on the margins.
To further justify the focus on women, many dementia advocates also highlight the gender differences in caregiving. It is frequently said in campaigns and informational material that the majority of caregivers are women, particularly wives and daughters. There is little mention of the contributions by husbands, sons and other men in caring for their loved ones with dementia.
Mainstream dementia advocates also point out that women caregivers tend to experience more distress. However, this does not negate the fact that the consequences of caregiver stress in men can be severe. The problem is not exclusive to male caregivers, but unmanaged stress can lead to desperate acts.
While an extreme case involving an inexcusable crime, Michel Cadotte’s 2017 killing of his wife, who had Alzheimer’s disease, raises uncomfortable questions about caregiver stress. At sentencing, the Quebec judge said, “As citizens, we can only hope that the alarming cries of the difficulties caregivers face, as well as the problem of the growing number of people with Alzheimer’s disease, will have been heard.”
Last year, the federal government launched a new $20 million initiative to address dementia. Consistent with the Liberal Party’s feminist agenda, the Dementia Community Investment Fund prioritizes projects that target certain populations including women. Similarly, released in June 2019, Canada’s first national dementia strategy has a women-centred theme; there is little recognition of the impact dementia has on men as patients or caregivers.
During a federal election forum hosted by Dementia Advocacy Canada, moderator André Picard of The Globe and Mail asked Conservative Party candidate Lisa Raitt whether we need programs to specifically address dementia’s disproportionate effect on women. Ms. Raitt acknowledged the importance of doing so, but thoughtfully concluded, “It’s a human issue.” NDP candidate Stéphanie Mercier agreed and added: “In regard to support, it’s not just about women, it’s also about the husbands that it will happen to.”
To be sure, some dementia organizations are tackling men’s needs. For instance, the Alzheimer Society of Toronto has launched a woodworking program where males with the disease can socialize and collaborate on projects and small repairs.
While such local initiatives are encouraging, men with dementia need greater support across the country. This moral obligation exists independent of facts and figures; having men’s concerns meaningfully addressed should not be contingent upon reaching statistically significant numbers.
As Dementia Justice recommended in our housing vulnerability report, a first step could be the launch of a positive national campaign to raise awareness and reduce stigma about dementia’s impact on men——as patients, caregivers and, for a smaller number, criminal defendants who enter the justice system due to responsive behaviours.[ii]
It is time to move beyond the gender politics of dementia; otherwise, the current feminization of the disease will continue to push men’s needs to the margins——fuelling stigma, delaying diagnoses and discouraging requests for help.
Caregiver son 'overwhelmed' in elder neglect case
[i] Heather Campbell, “Killers with dementia: Canada’s overlooked criminal defendants” The Lawyer's Daily (6 March 2018).
[ii] Dementia Justice Society of Canada, Nowhere to Live: Housing Vulnerability of Criminal Defendants with Dementia (Ottawa: Dementia Justice Society of Canada, 2019) at 52.