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Caregiving Chronicles

News and analysis on caregiving topics in MetroWest and beyond.

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Caregiving Chronicles will present news and analysis on caregiving topics in MetroWest and around the world, in-depth Q&As with experts in fields related to caregiving and updates and announcements about caregiving resources available in MetroWest from CaregivingMetroWest.org Program Director Douglas Flynn.


Overcoming the Stigma of Dementia and Isolation of Caregiving, by Barry J. Jacobs
By DebraMcDonagh / July 22, 2019

We often pull away from others who exhibit a condition that makes us feel vulnerable or fearful. Not out of meanness, but because it makes us uncomfortable to see someone struggle and fear the reality of "what if that were me?" 

According to an article by AARP, this is unwittingly stigmatizing a person. Stigma is defined as a "mark of shame." When we stigmatize people, we engage in discrimination against a person because of their backgrounds, attributes, or circumstances, and this includes severe medical illnesses, including dementia.  

In an article by Barry J. Jacobs*, "Overcoming the Stigma of Dementia and Isolation of Caregiving," AARP offers a real-life example of how this can play out. Below is an excerpt: 

"After Joanne moved her 83-year-old mother into her home, she was delighted her friends embraced the two of them as part of their close social circle. Over the next few years, however, as Mom's memory and language skills got steadily worse, those friends began to drift away. Joanne found she and her mother received fewer invitations to join the group for Friday night dinners or holiday get-togethers. When she'd call the friends, they'd be unfailingly friendly, inquire about Mom's health and then waffle about making plans. Joanne eventually concluded they were avoiding her — because of cruel stigma toward dementia."

Having friends pull away from you, especially when you most need their help, is a harsh reality and one that makes us want to withdraw. However, if you can, think about some of these suggestions: 

(P.S. we realize that it is easier said than done):

See the fear for what it is: Not everyone is built for handling crises. We don't know who we can really rely on in a fix until it happens. See these people as flawed, not malicious.

Beware of shaming self-stigma: We may shield a loved one with dementia from others to preserve their dignity. But that inadvertently sends a signal that says, "stay away."

Don't answer, "Fine." It is easy to assume that no one wants to know how we're doing, but it's a mistake to respond with a one-word, perfunctory non-answer. Stay brief, but keep your answer real. Share both positive and negative aspects of caregiving. It makes others see that the topic is approachable.

Create teachable moments: Stigma thrives with ignorance and inexperience. Exposing others to living with dementia increases their familiarity and reduces their fear. Invite a close friend over, and they will see how you respond to awkward situations with your loved one. Keep it light and positive. This introduction to dealing with dementia will hopefully make other visits happen naturally.

The above is a condensed paraphrased version of the full article, which you can read here:  Overcoming the Stigma of Dementia and Isolation of Caregiving

* Barry J. Jacobs, the article's author, is a clinical psychologist, family therapist and healthcare consultant, is the co-author of the book AARP Meditations for Caregivers (Da Capo, 2016). Follow him on Twitter@drbarryjacobs and Facebook.



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Caregiving MetroWest is a no-cost program of BayPath Elder Services, Inc. and was made possible in part by grants from the MetroWest Health Foundation.

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