Juliet Holt Klinger, MA, Expert on Dementia Care

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22 February 2019

The way we talk about dementia is evolving. With the Alzheimer’s Association reporting that someone in the United States is diagnosed with the disease every 65 seconds, it’s clear we have to find a positive response to the daunting diagnosis. Today’s article in the Washington Post, “Changing ‘the tragedy narrative’: Why a growing camp is promoting a more joyful approach to Alzheimer’s” hits home for us at Brookdale.

I am a big advocate for changing the narrative on dementia—not only for the person living with the disease but those who care for them as well. In past blogs, I have addressed the need for us to change perspectives related to many aspects of dementia. As the population ages and the number of people living with dementia increases, our cultural response needs to become more dementia-inclusive. The Alzheimer’s Association predicts 14 million Americans will be living with the disease by 2050.

Our Response to Dementia Needs a Cultural Shift

One way to improve our response to dementia is a simple change of vernacular. Redefining “caregivers” as “care partners” recognizes that people living with the disease should be just as involved in their care as their loved ones. Peggy and Tom Misciagna, the couple mentioned in the Washington Post, exemplify this idea. Peggy truly partners with Tom in his care, empowering him to take care of himself and offering support when needed. Caregiving implies a one-sided relationship. The word partner implies a two-person job (if not more!).

The Washington Post talks to my friend Brian LeBlanc about using humor as a coping mechanism when facing his own dementia diagnosis. I have quoted Brian many times in my blogs because he is truly one of the best voices out there. I am constantly inspired by his keynotes, videos and writing. This is a tough disease. At times it’s very frustrating. But taking each situation with a smile and a sense of humor truly yields better results for the person living with the disease and their care partner.

For anyone wanting to switch the narrative in their own mind about aging and dementia, I highly recommend the Changing Aging Tour and the Disrupt Dementia Act. Dr. Bill Thomas will leave you renewed, empowered, and with an appreciation for your own aging. I strongly recommend viewing his TED talk for a quick pick-me-up on your role as an elder.

The Importance of Adaptability

This mindset shift is embedded in the culture of our Clare Bridge dementia care communities. Years ago we stopped using the term “suffering from” when talking about dementia. If you spend time in a Clare Bridge, suffering is not what you see. You see life, relationships, acceptance and a whole lot of humor.

Jennifer Carson, a researcher who is quoted in the article, is absolutely right when she says, “Alzheimer’s can be a liberating event, an opportunity to fly.” Due to a lack of inhibition, or a lack of remembering all of those fears that keep us from expressing ourselves, there is a freedom of expression that accompanies dementia. That freedom can truly be fun! At Brookdale, we dance, we sing, we hug, we laugh. I always smile with this inside knowledge when folks ask me, “How can you work around dementia, isn’t it depressing?”

If only they knew!

What’s most exciting about this article is that our quest to change the doom-and-gloom dementia narrative made it to the public square. It’s about time! The willingness to see dementia in a different, more positive light requires adaptability and an open mind for sure, but the results are a better life for everyone involved.

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