Heartfield: We need better ways to care for those with dementia

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There’s been a 48 per cent increase in the number of Ontarians with dementia since 2010. This wave is going to change all our lives unless we revolutionize our infrastructure to protect people.

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It does not come as a surprise that there’s been a 48 per cent increase in the number of Ontarians with dementia since 2010. We knew this was coming, and we know it’s going to get worse. Without a revolution in infrastructure, this is going to change all stages of life for the next few generations.

The Ontario Medical Association, which released the data, is calling for more investment in home care. Home care is, indeed, important. It can be a godsend for people in the early stages of dementia, which can last for years.

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Home care visits are brief, sometimes as little as half an hour or less a few times a week, and the lack of resources means that patients frequently have to put up with being put to bed right after dinner, waiting a long time in soiled clothing, and other indignities. All the same, home care helps, when a person can cope with most of daily life but has trouble with a few regular activities, such as getting dressed and washed.

But home care is not a fix for what happens when the person starts to wander, fall or have dangerous delusions, which do not happen on a convenient twice-daily schedule. In some kinds of dementia, such as Lewy Body dementia, delusions and hallucinations are commonly the first symptoms to appear.

The psychological, cognitive and physical progression happens in ways that our health-care system doesn’t anticipate, and the timelines of progression vary from a few months to many years. Something as simple and common as a urinary tract infection, constipation or minor dehydration can cause someone with dementia to go from safe on their own to absolutely not, overnight.

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So for many people, home care visits may not address the main barriers they face to living safely and comfortably. Many assisted living facilities are not set up to cope with wandering and psychosis either.

The places that can cope (to some degree) are memory care wards in private assisted living (which is very expensive) or in long-term care homes. But when our loved one started having terrifying delusional episodes and falls, if I so much as mentioned long-term care to doctors, they would look at me in horror. “Oh, you’re a long way from that yet.” OK, but what were we supposed to do in the meantime?

The (sometimes) unspoken answer was to move our loved one in with us. It’s not a simple decision for parent of young children to take in a grandma or grandpa who is hiding knives under the couch cushions or screaming at family members that they are imposters (common behaviours in Lewy Body dementia). But put that aside, and think about the infrastructure.

Saying that they should just move in with their kids assumes a home exists with room for them to move into. That home must be accessible and safe – many people with dementia cannot safely use stairs, for example.

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They might need help at any moment, not only with the tasks of daily living (supplemented by home care, perhaps), but also with the delusions, falls, panic attacks and wandering, which can be unpredictable in their timing and frequency.

So that means that we’re asking middle-aged children or spouses to, in many cases, quit their jobs or reduce their hours to become unpaid caregivers. More often than not, it’s women who pick up the slack.

Caregivers lose income and career prospects, and they may also damage their own health. In fact, putting the burden on family caregivers amplifies the problem, as caregivers are at greater risk of developing dementia themselves.

The rapid increase in dementia will change the lives of Millennials and Zoomers, especially of Millennial and Zoomer women. It will hinder efforts to reduce heart disease and other illnesses of middle age. It will worsen gender inequality in almost every field.

I join with the OMA and others who say we need more home care. But we also need innovative group living arrangements, more options in assisted living, and caregiver supports for all the people with dementia who are not yet, or never will be, in long-term care. We need to build houses with disability in mind. We need employment contracts that do not penalize caregivers.

We can choose now whether to make a fundamental shift in how we live, or to have one forced upon us.

Kate Heartfield is an author, a former editorial pages editor of the Ottawa Citizen, and a former caregiver.

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