When I was a community health nurse in the early 80s, I didn’t really appreciate how heavily the formal health system relied on families to care for those with dementia at home.
I was told that it was important for families to learn how to provide care; therefore, I taught them how to bathe their relatives, monitor their meds and access community information. Although I feel I was a competent nurse and supported families if they felt unsure or uneasy with performing these tasks, I did not question my role in recruiting family members to become health care providers in their own home. It was just expected of me.
But when I became a nurse researcher, I began asking questions, “Why was I so blind to the potential negative effects of this formal-family care arrangement?” I didn’t see nor question the underlying assumption that families can, and should, take on most of the care.
But we need to change this assumption. We can’t keep treating families as workers, as resources to be exploited. If we believe in a genuine family-centred approach to dementia care in the community, we need to work with families as partners in care, and/or as clients.
I believe it can be different. We shouldn’t have to accept this current arrangement of community dementia care because it only works for a very few – those with resources, both financial and personal.
I believe people need to know that many families are really struggling, and it’s not because they aren’t trying or that they do not care. It’s because they do not have adequate expertise, time, and financial resources to provide safe, appropriate care around the clock to their relatives, with dementia. Inadvertently, our assumptions of family care have put them in a no-win situation.
Now is the time, especially as our population ages, to make some changes to our current home and community care system. Many families are going to burn out. This approach to dementia care is just not sustainable.
People with dementia and the families who care for them deserve better.
Read more about Dr. Catherine Ward-Griffin and her research on our website.
Alzheimer Society Research Program grant recipient