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Posts Tagged ‘Stigma’

Re-Imagine Life with Dementia

Re-Imagine Life with Dementia

on Alzheimer’s Speaks Radio

041817 ASR graphic 1pm DAA Karen Love Robert Bowles

Karen Love is the Executive Director of the Dementia Action Alliance, a non-profit, charitable organization working to make dementia symptoms better understood and accommodated as a disability, improving support for individuals and families living with dementia, eradicating stigma and ensuring full inclusion in all matters concerning living with dementia.                               

Robert Bowles is a retired pharmacist and past President of the Georgia Pharmacy Association. In 2012, at the age of 64, he was diagnosed with Dementia with Lewy bodies. Both of Robert’s parents had dementia.

Contact Information for Dementia Action Alliance (DAA):

www.daanow.org,               info@daanow.org

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Denial or Lack of Understanding?

Denial or Lack of Understanding?

By: Michelle Remold

My topic for this week has been on my mind recently. During the last couple of weeks I have had some very similar discussions around Alzheimer’s/dementia.

The discussions have typically started out with the stigmas associated with the terms ‘Alzheimer’s’ and ‘dementia.’ These discussions aren’t surprising to me, but they seem to be taking a different twist lately. When the discussions start, I am able to sympathize with the isolation that not only the person with Alzheimer’s/dementia faces, but the isolation that families feel as well. I have written before about how people seemed to stop visiting my grandpa because they said it was too hard to see him that way, not realizing that it wasn’t exactly fun for family to watch the steady decline either. I think in one way or another, this is something families dealing with these diseases can relate to.

As of late however, the discussions seem to end on a different note. Whomever I am talking to will mention that they don’t like to use the words Alzheimer’s or dementia because of the stigma attached with both. They always mention that they know the diagnosis and that the person with the disease knows the diagnosis, but when it comes to talking with other people it seems to be easier to avoid using the terms ‘Alzheimer’s’ or ‘dementia’ because it seems to reduce the awkwardness and the stigma. However, they all seem to get one common response to this approach and that is people tell them by not calling it what it is, they are in denial.
I am not sure I would exactly call it denial. When first diagnosed, it might be a coping mechanism, but as the disease progresses, being able to deny the decline and the progression of the disease becomes more and more difficult. I simply think it is a way to curb some of the stigmas that come along with Alzheimer’s and dementia. The people often say that even calling it memory loss, seems to be a little less frightening to anyone they are talking to.

I think that this will change with time and awareness of Alzheimer’s and dementia. It will take time for people who haven’t had firsthand experiences with the diseases to know that the family still needs support and friendship, as does the person with the disease. Backing away from it and making them more isolated doesn’t help, it only makes dealing with the diagnosis of Alzheimer’s or dementia even harder.

???????????????????????????????Michelle graduated from the University of Northern Iowa with her Bachelor of Arts in Gerontology: Social Sciences and a minor in Family Studies. She is currently pursuing her Master’s degree in Aging Studies and Nursing Home Administration from Minnesota State University Mankato.

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