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The Diagnosis That Sends Friends and Family Running Away

The Diagnosis That Sends Friends and Family Running Away

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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The Stigma of Alzheimer’s and Dementia: How to Cope

Read more: Aging, Alzheimer's, Caregiving, Health, Healthy Aging, News & Issues, , , , ,

By Anne-Marie Botek, AgingCare.com Editor

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AgingCare.com connects family caregivers and provides support, resources, expert advice and senior housing options for people caring for their elderly parents. AgingCare.com is a trusted resource that visitors rely on every day to find inspiration, make informed decisions, and ease the stress of caregiving.

137 comments

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12:11AM PDT on May 21, 2014

Unfortunately this is the way it is. I had cancer and lost friends even my closest, I also had a disabled child and lost friends, although I did make some new ones with this because my child went to a special school and I naturally became friends with other parents. You can have one problem and 10 different people and have 10 different ways of dealing with it, whether it's cancer, disability or dementia, any kind of problem mental, physical and even money problems. Watch when you needs some help to do some work - everyone is busy that day. I think it's best to go with the flow and look after yourself first. The first person to do the right thing by you is YOU.

8:46PM PDT on Sep 7, 2013

THANKS FOR THE INFO

3:33PM PDT on Jul 29, 2013

My mother have Dementia we all are there for her, all of her friends have died, therefore she do not have anyone like this article stated about friends leaving. I feel as if I have let her down because I am a handicapped person and unable to get out like I wish I could. Alzheimer's a Dementia are not the only things that will have people running for the hills. A prolonged illness will do that as well. For instance for a couple of days people visits every day somebody stops by just to say hos. Are you is there anything I can get for you, then it's as if all of your friends have dried up. Remember when I mention that I was a handicapped person well it's the same with me. Some of my personal family member seems to have turned their backs on me. Only one. People forgets about you once your usefulness leaves. Older people can agree with this, before you retired family members would not dream of having a dinner together without you or going out even phones you every day. Once you began to grow older some family members drop you like a hot potato, as an older handicapped person I am pretty much use to this kind of forgetting me I have always enjoyed myself, and pretty much are use to being along depending on no one but myself. I have many friends some here on care 2 and FaceBook. You and them gives me great hope although I have never meet any of them I can talk with them share my thought and interest with them. My advice to all who reads this is to all ways keep loving people those

7:14PM PDT on Jul 13, 2013

thanks

2:43AM PDT on Jul 12, 2013

yvm...

4:06PM PDT on Jul 11, 2013

Thanks for the info.

7:34PM PDT on Jul 10, 2013

thanks for sharing

5:55PM PDT on Jul 10, 2013

Thanks.

1:32AM PDT on Jul 10, 2013

When we spend our lives telling others what to do and allowing others to do our thinking for ourselves its no wonder when the chips are down there is nobody around. Start thinking for yourselves and learn who you really are and why your here, instead of moaning about how many friend you have.

7:42PM PDT on Jul 9, 2013

Sad but true, uncomfortable news sifts out the "good weather friends"!

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Disclaimer: The views expressed above are solely those of the author and may not reflect those of
Care2, Inc., its employees or advertisers.

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