Patti Davis: “I’ve Lived on the Other Side of the Headlines. How We Talk About Public Figures With Dementia Matters”
In the mid-1990s, not too long after my father revealed his Alzheimer’s diagnosis to the world, someone photographed him coming out of church with my mother. Early in the disease, and for quite a while, he was still going on walks, still attending church services. Generally, people were respectful. But apparently, this photograph, which I never saw, showed him looking confused and a bit disoriented.
The person who took it sent it to Page Six at The New York Post. Richard Johnson, who was then the editor of Page Six, called me. He told me he had received a photograph that would be embarrassing to my father and to our family if it were published and he was not going to run it. I remember tears choking my throat as I thanked him; I was so moved by that simple act of humanity and graciousness.
Recently, I saw a news story that talk-show host Wendy Williams has been diagnosed with frontotemporal dementia and primary progressive aphasia, the same diagnosis as Bruce Willis. The announcement came two days before a Lifetime documentary was scheduled to air. It was reported that Ms. Williams’ legal guardian, Sabrina Morrissey, filed a lawsuit trying to stop the documentary from airing, but Appellate Justice Peter Moulton struck down the suit. It was also reported that, despite being listed as an executive producer, Ms. Williams was often unaware that she was being filmed and that her family members are not allowed to know her whereabouts. (She is currently in a facility.)
With some trepidation, I decided to watch “Where is Wendy Williams?” After about 30 minutes or so, I had to turn it off. The exploitation of a person who was clearly suffering from cognitive issues, the relentless questions that seemed insensitive and often beyond her capacity to comprehend, made me feel queasy. I thought back to the Glen Campbell documentary in 2014, “This is Me.” The contrast in the titles makes it pretty clear how different the two films are.
While unsparing in letting us see Glen Campbell’s descent into Alzheimer’s, “This is Me” also appeals to our humanity. It asks us to look at what is still there—not only at what has been eroded. Many people didn’t know before watching the film that for some reason, the brain retains music even while memory is splintering. Campbell would get on stage, pick up the guitar, and every note was there. His musical ability stood apart, unaffected by Alzheimer’s. The same was true for Tony Bennett. He could be confused about many things, but when he began singing, Alzheimer’s retreated—at least for a little while.
These were stories that highlighted the person’s dignity, even in the face of disease. And incidentally, directing questions at someone with dementia is not a good idea—something that was done relentlessly in the Williams documentary.
Dementia asks a lot of us. It asks us to look past the splintering memory and confusion of Alzheimer’s. Other forms of dementia have their own challenges. Frontotemporal dementia is particularly cruel, as it is not marked so much by memory loss but by upheavals in personality—unpredictable storm surges and mysterious mood swings. If aphasia is part of the picture, the patient is unable to adequately communicate or fully understand what’s being told to them. Yet there is still a human being there, who deserves to be treated with respect. Whether the person afflicted is someone you know or someone in the public eye, the choice is the same: Do you look at them as if they aren’t really there—or do you reach inside yourself for compassion and understanding and stand up for their dignity?
Bruce Willis’ family has been courageous and generous in speaking about his diagnosis of frontotemporal dementia and aphasia, but they have drawn boundary lines to protect his dignity. I also have written much about my father’s Alzheimer’s but have always made my choices based on what will be helpful to others without compromising his dignity.
Cognitive health is in the news a lot these days, because of the advanced ages of the presumed presidential nominees. But it’s overly simplistic to talk about cognitive decline only within the brackets of age. While age can be a risk factor for Alzheimer’s, frontotemporal dementia typically strikes people who are young—often younger than Wendy Williams, who is 59, or Bruce Willis, who is in his 60s. Many people are diagnosed with FTD in their 40s. Early onset Alzheimer’s strikes people before the age of 65.
The subject of dementia and whether political candidates should be given cognitive tests is not a simple one. But what is simple is the question we should all ask ourselves: Am I going to treat this person with dignity and humanity? Am I going to remember that they are a human being with a heart that beats in their chest and a soul that dreams and hurts and longs for connection?
I believe it’s worth considering that, beyond the walls of a disease that steals so much, there just might be a soul perfectly intact, hoping that someone will honor its existence.
Patti Davis is an author of many books, including The Long Goodbye, in which she explored the experience of losing her father to Alzheimer's. The lessons she learned from the ten years of her father's illness inspired her to create a support group program for caregivers of people with dementia called Beyond Alzheimer's. Her most recent book is Dear Mom and Dad: A Letter about Family, Memory, and the America We Once Knew.
