Canada’s dementia strategies emphasize helping people live well at home for as long as possible. But for many people living with dementia, remaining at home relies almost entirely on the unpaid labour, financial sacrifices and persistence of family caregivers.

As health service researchers, we have spent decades studying systems of care for people living with dementia. Let’s look at the case of Margaret and Lisa, a fictional mother and daughter whose stories are based on the evidence we heard as we gathered material for our most recent study

There was no single moment when Lisa took over as primary caregiver for Margaret during her mother’s dementia journey. Instead, it happened one difficult decision at a time. Lisa spent hours searching for answers: What support would help her mum remain safely at home? How did home care operate, and who paid for it? What treatment options are out there? Would a GPS tracker provide reassurance or feel intrusive? And who could help them prepare for what lay ahead?

As Margaret’s dementia progressed, Lisa made increasing personal and financial sacrifices to keep her mother safe and supported at home. She reduced her hours at work, took unpaid leave and devoted countless hours to co-ordinating appointments, services and care across multiple providers.

By the time Margaret entered long-term care, both mother and daughter were exhausted. The family felt she entered long-term care too soon, but the decision was driven less by Margaret’s preferences than by the........

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