Juliet Holt Klinger, MA, Expert on Dementia Care

Contact Juliet
21 November 2016

November is National Alzheimer’s Awareness month, a time to educate people on the disease. Most often, the headlines are about the latest statistics or finding a cure. People don’t often talk about what life is like for the five million American’s living with the disease. Let’s talk about their reality and why we need to change the way we treat their symptoms.

What I’d like to talk about are the so-called “negative” behavioral symptoms of the disease and highlight a new way of thinking about those symptoms. Clinicians often categorize these as behavioral and psychiatric symptoms of dementia or BPSD and they can include paranoia, depression, anger, agitation, and resistance to care. For years, doctors treated these symptoms with anti-psychotic and anti-anxiety medications that proved to a) not to work very well and b) be dangerous for older adults. 

Many of us in the dementia care community believe that we should focus on meeting the unmet needs of the person living with dementia, instead of medicating. New research presented at the Alzheimer’s Association’s International Conference validated our claims. You can read the full press release here.  

In order for this person-centered/non-pharmacological approach to work, we need to start looking at dementia differently. Traditionally, we’ve viewed dementia through a biomedical lens – and categorized symptoms as “negative” behaviors. We now recognize that the more humane and effective way to view dementia is through a bio-psychosocial-spiritual lens. Meaning, we need to transition to a person centered approach that puts the well-being of the person living with dementia at the center of our thinking.

Maybe it would be helpful to illustrate with an example. A nurse called me exasperated one day. She said, “We can’t keep Doris out of our business office—every afternoon she comes in right as we are trying to close up for the day and starts rearranging the papers on the desk and then gets very upset when we try to redirect her! We want to call the doctor for something to calm her down.” 

Upon further discussion and review of her life story, we discovered that Doris was a retired teacher who had a second job cleaning a bank after school each day. She was upset when redirected because she feared being fired from the job she still held in her working memory. Once we understood why Doris wanted to clean every day, we encouraged her to do so. We gave her a dust cloth and thanked her each afternoon for her help around the office. No meds required, no psychiatrist needed. It was our view that needed to change. 

So maybe our treatment of BPSD has only medicated a person’s normal human response to their experience with dementia? Anger, frustration, confusion and fear are responses anyone would have in the same position. What we know now is that we must embrace an understanding that it is perfectly normal for someone to have an emotional and even behavioral response to the cognitive changes that accompany dementia at every stage.

To read more about person-centered non-pharmacological approaches to dementia care see these resources:

Dementia Beyond Drugs: Changing the culture of care, by G. Allen Power, Health Professions Press. 2010.

Dementia Care: The Quality Chasm, by Dr. Lené Levy-Storms, Dementia Action Alliance. 2013.

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