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Dementia

The Urgency of Dementia

The stories that numbers cannot tell.

Key points

  • Reports on increasing numbers of people diagnosed with dementia often grab our attention.
  • Those reports are largely intended to increase investment in research, pharmaceutical development, and housing options.
  • The urgency behind the numbers does little to solve everyday troubles for families living with dementia.

Is there something urgent to be done about dementia?

If you are a reader of newspapers and magazines and especially those that focus on topics of interest to older adults, you may come away from your reading thinking there is something very urgent to be done about dementia.

Dementia is often described as on the verge of reaching epidemic numbers. Popular media sources link these numbers to increases in suffering and hardship of the person living with dementia as well as their family members, but also as something sure to overwhelm our health care infrastructure. Recently the World Health Organization published a report on the topic of dementia. They report that currently, 55 million people worldwide live with dementia and that this number is anticipated to grow by 10 million “new cases every year.” The report further claims that dementia is currently the “seventh leading cause of death among all diseases and one of the major causes of disability and dependency among older people globally.”

 Mikael Blomkvist/Pexels
The numbers can seem overwhelming.
Source: Mikael Blomkvist/Pexels

These facts and figures seem to provide ample evidence of the urgency conveyed through these numbers: 10 million new cases every year. Seventh leading cause of death. A major cause of disability and dependency in older people. Then, it is precisely this language that is picked up and carried from the World Health Organization report into much more accessible outlets such as Reuters. From there, local newspapers pick up the story and bring it closer to your home.

But what can these stories about dementia do for us other than raise alarm and create concern that our turn must surely be right around the corner?

How are the numbers consumed?

While these stories may give us pause and get us thinking about whether we are becoming more forgetful and whether our forgetfulness might be a sign of progressive disease, there is another audience altogether for these messages. It has been argued by some who study the history of dementia that advancing a storyline that dementia is growing exponentially around the world is primarily aimed at governments. Governments hold substantial amounts of funding that could be directed towards researchers, the pharmaceutical industry, and increasingly, the senior housing industry. A recent report entitled Investing in Care, not Profit by the Canadian Centre for Policy Alternatives argues that for-profit long term care companies—those responding to a relatively wealthy population eager to remain independent as they age and amenable to advertising that offers "aging in place"—“look to public funding as a source for investor returns they are obligated to deliver” (p. 10).

Every person does dementia differently

It is, of course, beneficial to engage in some level of self-monitoring of one’s health. Even more so, when it comes to dementia, it can be important to try to hear the concerns of family and friends who may be better positioned to report on changes in our day-to-day ability to manage independently at home. But this points to a key feature that we think is important and very much under-reported in the popular story of dementia: every person “does” dementia differently.

 Zen Chung/Pexels
Helping with the yard.
Source: Zen Chung/Pexels

Most interesting were the different ways people incorporated dementia into their everyday practices of living their lives. In one case, dementia had developed very slowly and so, over time, small changes were made by the family to assist their husband and father. In our study, to protect identities, we called this participant Albert. Over the preceding three or four years, Albert initially reduced his work hours and later took full retirement from the family business. Albert’s wife and daughters reported that they deliberately slowed down activities in which Albert was involved to reduce confusion and agitation. Albert’s wife, Helen, also a pseudonym, and his daughters told us that they were gradually taking over more of the yard work that was previously Albert’s primary responsibility.

In another case, and again, all names are pseudonyms, dementia had progressed more quickly for James and at a younger age than was the case for Albert. James’ wife, Colleen, approached the changes she was noticing in James by actively seeking out a diagnosis, actively seeking external resources she could turn towards to assist her in her efforts to care for James—and ultimately, in actively seeking long term care options that would move James out of the family home to be cared for by paid caregivers as his disease progressed further.

Understanding the problem of dementia

Perhaps you know people who have responded in similar ways to those we’ve described here in response to a diagnosis of dementia—or perhaps you, yourself have responded in similar or vastly different ways. We think there is not one better way to respond—but rather, multiple ways that reflect how individuals, families, and friends conceive of resources that help them make accommodations in their lives to the changing circumstances they are faced with.

What our research has made clear to us is that the urgency in messages about increasing numbers of people affected by dementia does little to help people like Albert and Helen, Colleen and James. While researchers have had programs of research funded in response to those urgent messages, the outcomes of that research have often been disappointing. This is what led us to the conclusion that the problem of dementia may still elude us. We think the problem of dementia may be found in the intricate and creative ways that dementia is “done” in families. It is in those practices that we come to understand the problem of dementia better—and from that place, generate possibilities for care.

References

Armstrong, P., Armstrong, H., Buchanan, D., Dean, T., Donner, G. Donner, A., Sholzberg-Gray, S., Himelfarb, A. & Shrybman, S. (2020). Investing in Care, Not Profit: recommendations to transform long-term care in Ontario. Canadian Centre for Policy Alternatives. Toronto, ON.

Ceci, C. & Purkis, M.E. (2021). Care at Home for People Living With Dementia: delaying institutionalization, sustaining families. Policy Press. Bristol, UK.

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