The death of Glen Campbell on August 8, 2017 may encourage some of us to watch the remarkable I'll Be Me documentary made around the time of Glen Campbell's public announcement of his Alzheimer's diagnosis and farewell tour. It is not particularly easy to watch. It is painful to see an intelligent, generous, and talented man struggle to make sense of what is happening to him. But it is also hard to watch his caregivers, his wife Kimberly Woolen in particular, struggle under the burden of caring for him — working to find the right balance between respect for his formidable intelligence and talent while picking up the slack for his increasing cognitive decline.
This week, I feel pretty sure we'll see lots of articles about the prevalence of Alzheimer's and dementia. I can only hope some of that interest will spill over into thinking about family caregivers. Remember, Glen Campbell was a man with substantial financial and familial resources, the kind of resources that allowed his family to muster the help they needed to care for him outside of an institutional setting until the last three years (typically the most acute phase of the disease) of his life.
How are the rest of us doing as caregivers? Alzheimer's caregiving is more of a marathon than a sprint, meaning it is a longer and later in life caregiver assignment than associated with some other diseases. The caregiver role falls disproportionately to women and is associated with health risks — most notably anxiety and depression— itself. It is also associated with major financial risk for the caregiver, who may in fact have neither the financial or familial resources to guarantee the same level of family caregiving will be available to them, if needed.
It is not just that we look away from dementia but we look away from the extraordinary role of being a family caregiver for those with Alzheimer's and dementia. So, yes, go watch "I'll Be Me" on Netflix but also read this RAND report on why we need to end this unsustainable system of dementia caregiving as well.