Alzheimer's Documentary Sparks Controversy Over What Some See as Negativity

Caregiver, patient expert

According to the Alzheimer’s Association, more than 5 million people in the U.S. live with Alzheimer’s disease (AD), and the price tag for the disease in 2016 was over $236 billion. Therefore, it isn’t surprising that the disease is often featured on news broadcasts and as a topic of documentaries.

PBS has been particularly attentive to the issues of AD. In 2012, PBSaired a moving documentary about Lee Gorewitz, who became the focus of You’re Looking at Me Like I Live Here and I Don’t.This documentary takes the viewer into Gorewitz’ life as a resident in a memory unit. In 2014, they aired The Genius of Marian, a story about Pam White and her family as they came to grips with her early onset Alzheimer’s disease (EOAD). Both programs sparked emotion in viewers with much praise and little controversy.

Why, then, did the most recent PBS documentary, Alzheimer’s: Every Minute Counts, stir up a storm?

My personal take on this question is positive in that there is far more awareness surrounding Alzheimer’s than there was even a year or two ago, so much in fact that a kind of division has developed about how the sadly limited funding should be spent, and well as how people with Alzheimer’s should be portrayed in the media.

Some factions feel the focus should be on helping those who already have Alzheimer’s. They also promote taking a positive view that one can live well with Alzheimer's as long as person-centered care is implemented. Meanwhile, others feel that finding a cure is so important that every penny and most education must go toward showing that there is a dire need for more funding and research. HealthCentral discusses this division further in Care or Cure: Where Should Alzheimer's Funding Go?

Let me be clear that not one person involved in this fight to end Alzheimer’s begrudges the other view a dime. No, the discussion is only about how to spread the minimal — by comparison to other diseases — funding to cover both those who are now coping with the disease and those who are at risk, as well as the portrayal of the person who is living with Alzheimer's. They feel that Every Minute Counts, and other documentaries that take the approach that we are in a potentially hopeless situation, only increase the stigma for those living with the disease.

PBS did humanize their production by spotlighting two families, a mother who developed EOAD and her caregiving daughter, as well as one family whose elderly matriarch developed late-onset Alzheimer’s disease (LOAD) and how they were trying to cope with the reality of their relative needing nursing home care.

Every Minute Counts was heavy on statistics, which I feel it needed to be, to make the point that AD is a global crisis that needs to be stopped. The program stressed how the average life span has outpaced the average health span. It stressed how our aging population is pushing up the numbers of those who develop AD because age is one of the dominant factors in developing the disease.

Yet Every Minute Counts also delved into the genetic risks of AD. Viewers watched the daughter of the woman with EOAD discover that she, too, carried the gene mutation that guarantees that, like her mother, she will develop EOAD unless a cure is found. Urgency was the very core of the program.

The controversy over Every Minute Counts is not about the facts as shown. The controversy is about how the people living with the disease were portrayed, as well as the fact that the program did not stress funding and education to counter some of the negativity of the statistics. Some viewers complained that the helpless view of those living with the disease only intensifies the stigma that surrounds them.

Following are a few of the comments pro and con from some members of the Alzheimer's caregiver community. Read through them and, if the controversy sparks your interest, take the time to view Every Minute Counts online.

Marianne Sterling: We need to start facing reality with this disease and stop sugar-coating it. This documentary speaks the TRUTH, and if that's interpreted as "negative," then we have a lot of soul-searching to do.

Anonymous: I think until people face it in their own families, they don't realize its true effect in many realms. The show was pretty realistic but barely scratched the surface. Hopefully, it raised awareness.

Tami Neumann: I think the documentary missed the mark in helping to educate. Speaking the truth about the disease is important to help raise awareness and to move legislators to action. However, I felt that this special failed to seize the amazing opportunity it had to educate the community on resources, how to find support, and the importance of educating families.

Dale Carter: Overall disappointed in the program. I absolutely acknowledge the need and urgency for research and clinical trials. But sadly the program offered no information on Alzheimer’s education for family caregivers, caregiver support groups, adult day programs, PT and exercise programs, in-home care, and other supports. Not a holistic view of approaches for engaging with and caring for a person with the disease! There is ‘life after diagnosis’ to the very last breath!

Anonymous: I was shocked at how different the availability of services is stated to state. Again, I believe their purpose was to enlighten people to the growing problem so we can focus more research on prevention.

In my opinion, all views are correct. I do believe that the public and our lawmakers need to be repeatedly shocked by what Alzheimer’s disease is going to do to the future of this country, and this PBS special did just that. The need for action is every bit as urgent as the program stressed.

Yet, people don’t simply receive an Alzheimer’s diagnosis and suddenly become helpless. They can live well for years with appropriate person-centered care that preserves the quality of life and personal dignity.

What is needed, and I believe we will eventually see, is what I will call the second half of this documentary. This future program will help the public understand how people living with all types of dementia need to be respected and cared for as functioning human beings. Education is needed for all concerned in order to increase the quality of life for those who live with the disease, as well as decrease the stigma associated with it.

Considering the record that PBS has for excellent documentaries, I believe that a program focusing on the positive aspects of living with Alzheimer's with proper support and education will happen.

If you’d like to see more about the films discussed here, they can be found at these links:

The Genius of Marian

You’re Looking At Me Like I Live Here and I Don’t

Alzheimer’s: Every Minute Counts

Carol Bradley Bursack is a veteran family caregiver having spent over two decades caring for a total of seven elders. She is a longtime newspaper columnist and the author of “Minding Our Elders: Caregivers Share Their Personal Stories,” as well as a contributor to several additional books on caregiving and dementia. Her websites can be accessed at www.mindingourelders.com_ . Follow Carol on Twitter @mindingourelder and on Facebook Minding Our Elders._