When a person is diagnosed with a serious illness, their friends and family members typically respond in one of two ways: rallying, or running.
We would like to think that our loved ones would rally, no matter what the diagnosis, but we only have to look back at our recent history to see that that is not often the case. In the 1960s and 70s, it was cancer that sent friends and family running for the hills. In the 90s, it was AIDS. Today, it’s dementia.
Seventy-five percent of dementia-stricken seniors and 64 percent of their caregivers feel that a dementia diagnosis carries a damaging bias, according to an international survey conducted by Alzheimer’s Disease International (ADI).
Two sides to every stigma
The fear of judgment can be so great that nearly one in four people suffering from dementia try to hide their condition for as long as possible.
Their apprehension isn’t misplaced. The stigma attached to Alzheimer’s and other forms of dementia can have varied and wide-ranging effects.
Being diagnosed with dementia caused 40 percent of the seniors taking the ADI survey to be treated differently, both by people they’ve just met, as well as friends and family they’ve known for years.
One respondent reported “coming out” immediately following their dementia diagnosis. They told more than 150 friends about their life-altering condition—and received fewer than five responses.
It’s not just those people diagnosed with dementia that suffer, though.
Caregivers also shoulder significant social burdens while taking care of cognitively impaired seniors. “Stigma by association,” is the term used to describe the phenomenon that occurs when the stigma of a loved one’s disease rubs off on their caregiver, causing feelings such as guilt, embarrassment and shame.
However, just as a dementia diagnosis can isolate caregivers and their loved ones, it does sometimes have a community-building effect.
Sixty-six percent of caregivers and people with dementia reported that sharing their condition led to new relationships with others trying to cope with cognitive impairment.
Support groups, both online and in-person, are often cited as a great way for people suffering from a particular disease, and their caregivers to share encouragement and form relationships with others who know what they’re going through.
To tell or not to tell?
Disclosing a dementia diagnosis can be a double-edged sword—it may alienate or endear.
The best way to deal with the stigma surrounding the disease—according to Alzheimer’s activist agencies, such as ADI and the Alzheimer’s Association—is to face it head on through education and advocacy.
Alzheimer’s Association spokesperson and early-onset Alzheimer’s sufferer, Michael Ellenbogen, puts it this way, “We did nothing wrong to get this disease and we need to speak up to let our voice be heard. We did nothing and no one should be ashamed of having it. I feel so much better when I share it with others than when I try to hide it.”
The Diagnosis That Sends Friends and Family Running For The Hills originally appeared on AgingCare.com.
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By Anne-Marie Botek, AgingCare.com Editor