Over the holidays, I took advantage of a few days off and caught up on some books I had been intending to read. Over the past several months I had picked up quite a selection of books. This one looked interesting. That one was by an author I had read before. Another one suggested by a friend…. A short stack of good intentions, sitting on the end table…untouched. A guilty pile of pristine dust jackets. You may have a stack like that at your house.*
One of the titles that I got to was Dementia Reimagined by Tia Powell. Dr. Powell has written a terrific and accessible book about people with dementia and how our society treats them and the people who provide their care. In one chapter, “Laborers of Love” she addresses the challenges faced by the caregivers of persons with dementia. “Helping people…live at home… is an important step toward more ethical health policies. What we’ve done less well as a society is to consider how we will also support those who…make the choice to stay home possible.” Dr. Powell provides excellent food for thought on how and why we can do better in caring for people with dementia, and the people who care about, and for, them.
“Family” means many things. Sometimes the family caregiver is a parent, a spouse, a sibling. But the group also includes less formal relationships: a childhood friend, a neighbor or coworker. A friend of mine was caregiver for her ex-husband’s aunt. Ruth was the only family she had. When we speak of family caregivers, we include all those who are uncompensated providers of care.
More than 40 million Americans are family caregivers and they are critical to the success of home and community-based long-term care. But far too often they are an afterthought, if they are thought of at all. A friend described the moment that she heard the dementia diagnosis for her mother. “Her doctor suggested we get her affairs in order, and then left the room.” It is left to the family member to explore the diagnosis and the care that will be needed. Resources for caregivers exist, but that is of little help if the caregiver does not know how to access them.
Elsewhere in this newsletter you can read more about the launch of Best Practice Caregiving, a new online resource designed to connect organizations with proven methods of supporting family caregivers. BPC is a collaboration of Benjamin Rose Institute on Aging, the Family Caregiver Alliance and The Gerontological Society of America.
It is important for health care professionals and health care systems to understand that dementia, or any other chronic health condition, is far more than the diagnosis and treatment of disease. It is a journey that will take the rest of people’s lives to complete: a journey for both the caregiver and the person for whom they provide care. One goal of Best Practice Caregiving is to raise awareness of caregivers and increase health systems’ and community organizations’ support for them. The caregiver’s journey is not one that should be made alone.
*Now, about that stack of books. I did manage to find time to read all of them and can highly recommend them to you: