By Pamela Atwood, MA, Director of Dementia Care Services
As the world grapples with the epidemic of Alzheimer’s and other related causes of dementia, people diagnosed and their families struggle with the reactions of friends, family, and the society at large. A support group member recently asked me “the folks at my grocery store watch me like I’m a shoplifter because once I missed something with the self-scanner.” This same person came up with the perfect solution – talk to the manager about his diagnosis and ask for compassion and understanding.
But that courage doesn’t come easily. Stigma, or mark of disdain, disapproval or shame, is a serious problem for those with memory disorders. It can be as minimal as asking the caregiver how John is, instead of asking John himself. It can be as extreme as denying insurance, voting rights or housing to someone with a diagnosis of Alzheimer’s. To find some of that courage, to reduce stigma in our communities, here are 5 things you can do:
Ask the person, not the caregiver.
When you meet someone who says, “Joe has been diagnosed with Alzheimer’s,” it’s natural to ask, “How is he” just as we would with cancer or heart problems or any life-threatening illness. But when people have Alzheimer’s, friends tend to then ONLY ask the caregiver. Try to ask the person how s/he is feeling. Ask the caregiver how they are coping too, but assume that people with memory disorders can still answer about how they are doing.
Learn the facts about memory problems.
In the absence of information and education, we find fear and stigma. People hear all kinds of crazy things – no, it’s not contagious; yes it is fatal, but there are 5-10 or more years before it gets to that point; no, they don’t “go crazy” but yes, they may have things they can no longer do. Find out the truth – dispel myths and share the facts.
Join an enlightened community.
The Alzheimer’s Association, and other organizations, sponsor chat rooms, discussion boards and message centers. They also have phone services that are available 24/7 and support groups. Hebrew Health Care and other communities provide support, information and referral, and staff who truly understand. Find these community resources, get involved and you’ll feel empowered to know that there are probably more people who DO understand than those who don’t.
Get involved in the fight against Alzheimer’s.
Find out about clinical trials and research studies. Financially support research, and donate to legitimate causes. Support the Walk to End Alzheimer’s. Encourage your workplace to get involved and support organizations that fight these diseases.
If you are comfortable, share personal experiences to help key decision makers, such as Legislators, Congressman and appointed officials in state and local government agencies. When they have a face and story, they understand beyond “statistics” and “briefs” compiled by others. If the 5.4 million Americans all had a voice, people would understand this isn’t a disease worthy of closeting – that this is a disease that has an impact on individuals, families, communities and our society as a whole.