Going Public

"I need the ones I love Lord/More and more each day."  --

From “A Better Place” by Glen Campbell

            Grammy-winning singer and songwriter Glen Campbell and his wife, Kim, recently announced that he has Alzheimer’s disease.  The couple chose to share his diagnosis because Glen is about to go on tour to promote his latest album and didn’t want fans to mistake any signs of forgetfulness or confusion with substance abuse.

            Going public with a disease as fraught with fear and misunderstanding as Alzheimer’s takes real courage.  We’ve seen similar public displays of courage before, as President Ronald Reagan and celebrities like Charlton Heston announced their diagnoses, using their announcements, in part, to make a statement of farewell from public life.  We can admire their courage and understand their decision – better to “go public” than to have their privacy mercilessly invaded by prying tabloid reporters and photographers. 

            While Campbell chose a similar path, his decision feels different.  He is not retiring from the public stage, but making an announcement prior to taking the public stage again.  His family explains that music continues to be his gift and his great joy.  He wants to perform; he wants to continue a public life as long as he can; he wants the support of family, friends, and fans. 

Campbell offers us an example we may want to embrace.  Today, an estimated 5.3 million Americans are thought to have Alzheimer’s.  The Alzheimer’s Association tells us that every 70 seconds, another American is diagnosed; by mid-century, they expect the rate of diagnosis to accelerate to every 33 seconds. Most of those who are diagnosed hope to stay engaged with the people and activities they love for as long as possible, even as the initial symptoms increase in frequency and significance.  Yet many who already suffer with the disease find that the most painful and significant deterioration they face is not the loss of memory or capability, but the loss of friends and social connection.

 Given these statistics, perhaps it is time for each of us to consider how we might handle such a diagnosis.  Would we choose to share it openly with friends, as we might share diagnoses like diabetes or cancer?   Would we choose to explain that the slight forgetfulness or confusion is more than a senior moment and will continue and worsen?  Might we choose to tell our friends that we will need them more now than ever to help us maintain a sense of social connection and normalcy for as long as possible?

The decision to “go public” is a personal decision, of course.  Those of us who seek to share our diagnosis may find an amazing opportunity:  to help de-stigmatize a frightening disease, to help others understand its progression and treatments.  By choosing to share, we may actually help ourselves and others.  New research has consistently shown that physical activity, mental stimulation, and social engagement help all people stay healthy as they age and also reduce the risk and rate of cognitive decline in Alzheimer’s patients. 

Whether we share an Alzheimer’s diagnosis or whether we choose to stay private, as Alzheimer’s becomes a more prevalent health, demographic, and economic factor in our society, each of us will have the opportunity to show that Alzheimer’s patients and their families can live with joy.