09/02/2025
September is World Alzheimer’s Month, and I’ve been reflecting on the reality of dementia caregiving.
Caring for someone with dementia is incredibly hard. A lot of what gets shared online emphasizes the positives: the moments of joy, the resilience, the successful strategies. Those things are real, but they don’t tell the whole story. The truth is, dementia caregiving can be depressing, financially devastating and utterly exhausting.
One thing people don’t always realize is that caregivers carry the burden of lies. They face constant ethical dilemmas. Do you tell the truth, or do you protect their best interests? I’ve seen adult children tell their mothers that their husbands are, "at the grocery store,” when in fact they passed away, because breaking that news again would be too cruel. They are trying to preserve dignity and peace, and yet it can feel wrong to lie, too.
And then there is the system itself. Ontario’s long-term care system is even more broken than most people imagine. You might think there would be more availability after so many Covid19 deaths, but that is not the case. Families are often told they need to be “in crisis” to get a bed. People with dementia are discharged from hospital and told to wait at home, even when it is unsafe. Home care is expensive, inconsistent, and too often provided by workers without dementia-specific training. Caregivers are left scrambling and burning out.
I don’t want to end this on a falsely hopeful note, because the truth is that dementia caregiving is just plain hard. What caregivers need most is actual caregiving support: someone to take over for an hour so they can sleep, someone to cook a meal, someone to do the hands-on work of caring while the family caregiver goes to work.
Lately, I’ve been thinking about doing additional dementia training so I can better serve my clients. But even then, I will still be limited because I know that in-person care is what they usually need most. I don’t have all the answers, but I do know this: we need to be more honest about the weight family caregivers carry, and we need to do a lot more to support them.
