How do I tell strangers about my parent's Alzheimer's disease?

8 answers | Last updated: Dec 07, 2016
A fellow caregiver asked...
What's a good way to let strangers we encounter -- in stores, walking on the sidewalk, and elsewhere -- know that my 74-year-old mom has dementia? Sometimes I feel the need to explain her behavior.

Expert Answers

Beth Spencer is a social worker in Ann Arbor, Michigan, with more than 25 years of experience with families who have a member with dementia. She is coauthor of Understanding Difficult Behaviors and Moving a Relative with Memory Loss: A Family Caregiver's Guide. Previously, she directed Silver Club, early-stage and adult day programs serving individuals with Alzheimer's disease and related illnesses.

Going out in public -- for example, to a restaurant, shopping, or traveling -- can be very difficult. You only need to let people know if you feel it's necessary in the particular situation, and you can do so discreetly.

Many Alzheimer's Association chapters have small wallet cards that say something like "I am a caregiver of a person with memory loss" or "Please be patient; the person with me has Alzheimer's disease and may need extra time and understanding."

I've encouraged family members to carry these discreet cards with them at all times, to use when they're in a restaurant or somewhere where unusual behavior would be disruptive or embarrassing. Ninety-nine percent of the time, people become very helpful because they suddenly understand the situation.

If someone just starts asking questions about the person's faulty memory or behavior, I usually say something like, "This isn't really a good time to talk about that." Somehow you need to indicate politely that it's not a conversation you'd like to have right now.

Very often in public places, people with Alzheimer's feel ashamed because they're aware that their limitations are a problem and no one jumps in to help them. For example, I was recently at a restaurant when my companion, who has the disease, forgot what she'd planned to order by the time the waitress came around. I prompted her, "Didn't you say you wanted this?" But it takes a certain amount of skill and awareness to keep things smooth. Unfortunately, what happens so often is that the person with Alzheimer's and her family are embarrassed, and then she feels even more isolated.

Community Answers

Isabelle answered...

I feel Lucky enough not to be embarrassed by my father`s behaviors when we go out. Actually I invite you to see this situation as a way to educate people. Usually people respond in a positive way when they observe the way I take my father’s hand-when I show him love-or when I help him eat his soup or even when I laugh with him without any apparent reason. If they are troubled by Alzheimer’s disease-which can be perfectly understandable- you will be doing them a favor by showing them how to BE with someone with this disease: love and humor being my favorite tools.  You can reframe the difficulty in a positive way: you are teaching many that will probably, sooner or later, be somehow confronted with the same issue.
Isabelle Beltran de Lugo

Terrysmith700 answered...

The written statement offered to the public is a brilliant idea. I will implement that immediately to help save my mothers dignity. My mother often thinks I am a man, and trust me when I tell you that I, in no way resemble a man. The concept of providing a gentle environment and loving interaction presents an issue for me because she was never an affectionate mother. My mother has entitlement issues as well. She was absent from the family home by the time I was 11. However, she turned out to be a great friend... but it feels very strange to hug her or touch her. I will seek council for that issue for myself. I do offer her hugs but am uncomfortable that she may think I am a man. Ewwww (laughing to myself)

Clc answered...

The real question is who is the one uncomfortable, you or the person with Alzheimer's. My brother and I routinely take my father to restaurants and out shopping (he's stage 6, starting some early 7 indicators). He has no 'filter' anymore, and given his hearing will talk loudly - so it can be awkward when the "really large gal" is seated next to us. I simply apologize and say he has AD. He himself is clueless about what he has, he just thinks its old age memory issues that started a few months ago, when in fact he was diagnosed with vascular and AD around 2000. No embarassment there, just a frustration.

I see no reason to hide from this disease, as if it's become the new "scarlet letter A". Offering some normalcy as long as it is possible, while acknowledging the growing number of people around us with the disease, is the only way to build awareness. It's no longer "Uncle Ed" going senile as a family secret, it's a bonafide killer, physically, mentally, emotionally and financially, and deserves more resources for patients and care givers alike.

Joyg answered...

I have carried the cards for years and also have them in his pocket along with his ID. They have been invaluable, expecially going through security in airports. I also agreed that when people observe me showing love and support, it is a life lesson learned for them to use in the future.

Lindasd answered...

I also carry the cards, very helpful. I am never embarrassed; however, I am concerned at what my mother says and does, for her safety and the other person. She approaches anyone who will talk and quickly she gets overly friendly (physically touching, hugging) or says something very inappropriate (sexual). She is 89 and I can see people are not sure how to respond. I keep her close by and quickly intervene by stepping between her and the person and say I'm sorry, she has dementia and start talking about something else and physically pull her away, calmly. Her AD is bad enough to where she doesn't realize I'm doing this and it lets the shocked person walk away. I seldom take her out because this behavior has put her and me into dangerous circumstances by approaching questionable stangers. If I take her out it is where people in the store or such already know us.

Sexy52 answered...

When I take my MOM out in public and she will start talking to strangewrs or try to hold a small childs hand or the biggest thing is she call everyone sister or brother Then sometimes I am brother I just step in and lipsynch. or speak low to let them know she has Alzheimers. So far I have not had a bad experience. on occasion she will get a little agitated but I have been able to handle it with some diversion of some type.

Mariaperham answered...

A family friend had a mother with Alzheimer's and I will never forget the gentle way she treated her. When my father in law died, after his memorial service, they came to our house where family and friends were being fed, and reminiscing. After awhile her mother told her she was hungry. She told her, "Well, Mama, you just ate." Her mother said, "What did I have?" With patience, her daughter listed what she had eaten, chicken, potatoes, green beans, etc. Her mother said, "Was it good?" The daughter answered with a smile, "Yes Mama, it was good." I admired the patient and loving way she dealt with her mother. Such a fine example.