Breaking Stigma's Around Alzheimer’s

Breaking Stigma around Alzheimer’s
By: Brooke Morgan Westlake
June 25, 2014

(One of the last great photos of my grandma and I. She was visiting me in Reno. October 2005)

I have felt that there are a lot of stigma’s around Alzheimer’s for a while now. And I think I have finally begun to understand why.

When my grandma was first diagnosed she did not tell anyone she had Alzheimer’s. In fact she hid it for a long time until everything unraveled and she did not know the difference at that point if she was sick or not, but I did...  When sharing with others what was happening to her and what I was going through, I felt ashamed to say “My grandma does not know what is happening because she is sick, she has Alzheimer’s”. The A word being the last word in the sentence.  At the end of the day anyone I spoke to or with about my grandma was very compassionate but I always remember thinking to myself ‘are they going to think she is mental ill? ‘ or ‘She is old so of course she has Alzheimer’. I came to realize the stigma I felt around Alzheimer’s is common and the more I thought about it the more I thought about why my grandma never told me her “official diagnosed” until I read it on her medical record from her Alzheimer’s specialist. She had a stigma to herself and did not want others to know she was sick. She was a successful healthy active woman who skied till 77 years old, how could she have something that was robbing her brain and then her body of all its functions?

See there has not been a movement with Alzheimer’s yet like breast cancer or other top killing disease on the map. And by movement I mean empowering the actual person diagnosed to take charge and gain control of what is to come for them and their families. I see many women on Facebook empowering themselves after they are diagnosed with breast cancer.  They are sharing there treatments, and what stage of cancer they have and showing photos of themselves with a shaved head. Do I think that is easy? No, not at all.  But I see empowerment along with breaking the stigma’s surround by breast cancer or any other disease where the individual talks about it openly. Have you ever seen someone with Alzheimer’s recently diagnosed posting about it on Facebook? Not likely.  In fact the ones you might see a posts from are family members who are the primary care givers for a loved one with Alzheimer’s.  Why haven’t we broken these stigma’s around Alzheimer’s so that we can empower this disease and take it over? 

(Longest Day Every 6-21-2014 Dedicated to Grandma Bev, #ENDALZ)

The reason I started Remember My Photo was to honor those ones like my Grandma Bev, like my great cousin Mike and my great aunt Nomy.  All of these family members on my grandma side all have Alzheimer’s, but my grandma was the first was to pass away. It was also a way for me heal from her loss and to capture others loved one’s photo with the story about the person they were the things they did and liked to do. To give them part of the dignity and respect back. The goal at the end of the day is to put a face with a name to the disease.  The "A" "Alzheimer's" word is scary. We cannot live under the stigmas any longer as the disease stairs right back at us in the face with expected predicted number of 50 million people to be diagnosed worldwide with Alzheimer’s by 2050.  We must embrace life and the things that come our way. We can embrace the stigma without taking away an individual’s dignity and respect. We can simply do this by opening up and sharing our loved ones story or letting them embrace what is to come and let them share their life before it to late….