Families provide dementia care. Why must they also be the air traffic controllers of the system?

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 realities of a system struggling to provide adequate care at home.

In short, Lisa became the air traffic controller for her mother’s care, directing doctors, hospitals, home-care providers and community services while also trying to be her daughter.

Families expect to help, but they should not be expected to co-ordinate the entire health- and social-care systems for the person they care for.

Why care co-ordination matters Dementia is a complex journey that unfolds over several years and differently for each person and care partner.

Unlike a stroke or heart attack, which has a clearly defined medical event, the dementia pathway is highly variable and unfolds over time .

It is often a series of transitional events marked more by functional (as well as cognitive and behavioural) changes.