Dementia Stigma: How to Respond to Thoughtless Comments and Maintain Your Loved One's Dignity

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Dear Candid Caregiver: My dad has Alzheimer’s. Caring for him is difficult, but since I have support and also have made an effort to get educated about the process, I’m doing well enough. I also try to educate others when the opportunity presents itself because we’ve experienced the stigma that goes along with this disease and I want to help eliminate that. What has me in a twist at the moment, though, is how cruel some people can be.

Last week was our worst experience, by far. We were trying to get checked out at the grocery store. The order was small and Dad wanted to pay for it himself. I want him to do this sometimes because it makes him feel good but, because of confusion, he is slow as he goes through the process. In this case, the checker was very nice but she kept glancing at the woman behind us. That caused me to look, too, and I saw that the woman was glaring at us so I apologized. I hate doing that because it demeans Dad, but I had to do something. Her response? She said that if my father’s brain is fried I should keep him at home so his problems won’t impact others. The checker was stunned and turned beet red but she just kept doing her part. I was furious, but I just mumbled and hurried things along. We were soon done and I took Dad’s arm and skulked off. What should I have done, if anything? — Furious in Middle America

Dear Furious: Excuse me while I pry apart my clenched teeth and take a few deep breaths. There, that’s a little better. I think that in this case you might have done the right thing by simply protecting your dad’s dignity and leaving because this woman needs more than education: she needs a soul transplant. Keeping your dad physically and emotionally safe should be your priority.

You are right about the stigma, though, and also right about trying to educate people. In the same circumstances, a person with an arm in a sling is likely to be patiently tolerated — even sympathized with. I think that people can relate to the inconvenience so there’s no stigma. However, mental and cognitive illnesses are so frightening to some that they push away any reminder that they, too, are vulnerable, and they express this fear though meanness.

I still believe, though, that most people are decent and even teachable, so don’t give up. One of the least intimidating methods of educating others that I’ve seen has been to arm people with dementia, as well as their caregivers, with a type of dementia identification card. You can print some up yourself, download forms from various dementia sites, orbuy them. They state something like this:

I’m sorry that I’m taking so much time but I have dementia and it’s hard for me to do things quickly because I get confused. I appreciate your patience.

OR

I’m sorry that we’re taking so much time but my dad has dementia. It’s hard for him to do things quickly because he gets confused, but it’s important to his dignity that he is allowed to try.  I appreciate your patience.

In most situations like you described, you could have quietly passed out the caregiver’s card while your dad was occupied, giving one to the checker and others to those in line. Most people will come out of their self-absorption long enough to thank you and even smile a bit. If someone grumbles too much, others will often give them a sharp look and they’ll behave. Sadly, Furious,  you had the misfortune to have standing behind you a woman who may not even be insightful enough to be shamed, so again, in my opinion, you did what you had to do by protecting your dad in what we hope is an unusual circumstance.

Being a care partner for someone who lives with dementia will always be challenging. There are few hard and fast rules other than don’t argue and protect dignity and you came through on those very well. Keep educating, my friend. It’s the right thing to do. God willing, you and your dad won’t have to endure another ugly incident like you described.

See more helpful articles:

Dementia: Moving Beyond Diagnosis

Validation: When Bending the Truth Is Medicine

How to Deal With Embarrassment When Your Loved One Has Dementia