How I Want to Be Treated If I Get Alzheimer’s

By: Marie Marley, PhD
Volunteer – Kansas City Hospice & Palliative Care

Oftentimes it’s difficult to know the best way to interact and communicate with a person who has Alzheimer’s. And so I’m going to let people know in advance how I’d like to be treated should I develop this disease.

First of all, I want to be placed in a care facility, and it should be the best one available I can afford. I don’t want anyone making the supreme sacrifice to care for me at home. Besides, it’s quite possible that I’ll receive better care if I’m someplace where numerous people will be involved in my care, rather than having one person who will try to do it all.

I want people to realize that regardless of my behavior, I’m probably still “in there” to some extent. By this I mean, for example, that I may enjoy being visited even if I don’t recognize the person visiting me. It could also be that I enjoy being visited, but just can’t express that verbally.

I want to be treated with respect, which means people should not talk about me negatively in my presence. If I am “still there,” I may understand every word even if I don’t talk anymore. I will also want people to knock before entering my room and preserve my dignity by stepping out if I’m receiving personal care.

I want my feelings to be validated. I do not want people to try to immediately ‘explain away’ my feelings. Rather, I want people to listen to me and acknowledge my fears, concerns, and perhaps sadness, and only then change the subject to something more pleasant.

Don’t talk down or ‘baby talk’ to me. That won’t be necessary. Talk to me the way you always have. If I don’t understand that, I probably won’t understand ‘baby talk’ either.

Don’t keep asking me questions that begin with “Do you remember?” Of course, I can’t remember. If I could remember I wouldn’t be in such a facility in the first place. And if I can’t remember what you’re asking me about, I may be embarrassed or otherwise upset.

I want people to be patient and not correct me or disagree with me no matter how wrong my statements may be. This will just either embarrass me or even make me angry. Please just go along with me unless there is some compelling reason not to – and there rarely is.

Please don’t even bring up subjects we don’t agree on. (Examples could include politics or religion.) It will most likely start a big argument, and it’s true what they say about that: “You can’t win an argument with a person who has dementia.” 

If I do get agitated while we’re talking, try abruptly changing the subject to something pleasant. It’s probable that I’ll completely forget what I was agitated about.

If I develop Alzheimer’s, I won’t act ‘normal.’ I hope you’ll not try to make me act normal. That will just make me frustrated and/or angry. It’ll also upset you. Interact with me at my level, where I am, and we’ll both be content.

If I should keep asking for someone who has passed away – such as my Romanian life partner, Ed – I want to have that desire validated as well. But I wouldn’t mind if people then tell me some little “white lie” as to where he might be and that he’ll come shortly. That would probably relieve my mind and make me feel better. Otherwise, you’ll be telling me repeatedly that he died, and I’ll relive his death over and over.

I want to have meaningful activities in which to participate every day. Preferably ones in which I can interact with other people. One possibility would be listening to classical music. 

Other activities I might enjoy would be painting or having visits from a dog, just to name a couple. It will be very helpful if my loved ones and the staff at my facility experiment to find out what I like to do. It may be very different from what I like now.

One way to find out what I like may be to ask me. It could be that I‘ll be able to tell you. And if I do tell you something I’d like to do, try to arrange it, if it’s feasible.

If you do find something I really like, please keep doing it. You may get bored but it could be bringing me great pleasure. And for me, every time may be like the first time. 

I may keep repeating the same story, asking the same question or exhibiting the same behavior over and over. In such a case, I want people to be patient and always react as though it’s the first time. Otherwise, you’ll be exasperated and I won’t understand why.

Bring me wrapped presents – no matter how small – on a regular basis. I may forget them quickly, but very much enjoy receiving and unwrapping them. Everyone likes getting presents and I will be no exception. 

I would ask that you not complain to the facility about every little thing. If you don’t like the way they’re dressing me or styling my hair, for example, let it go unless it’s seriously disturbing me. Please just make sure I’m getting proper medical care, socialization, activities and any needed assistance with personal hygiene.

Remember that – like most people with Alzheimer’s – I’ll probably live mostly in the present. Try to find and do things that will bring me pleasure, even if you know I won’t remember them a half hour later. I may enjoy every moment when it happens – and that’s what matters. Also, it may put me in a good mood the rest of the day, even if I don’t know why.

If my doctor believes I have less than six months to live, please order hospice services for me. It may be upsetting to you, but I’ll probably benefit from the extra care and relish the extra attention. If you’re having difficulty facing my impending death, work with the hospice team for help with coping. Please consider seeing a grief counselor or finding other healthy ways to cope. I’m sorry for the grief my loved ones will feel. 

Above alI, I would ask that people who love me now keep loving me and expressing that love in all the different ways they can think of. One of them is bound to get through and reach me on some level.

This is how I want to be treated if I develop Alzheimer’s – with respect, dignity, patience and love.

Marie Marley has been a volunteer patient visitor for Kansas City Hospice & Palliative Care since 2019. In 2023 Ingram’s Magazine named her a Hero in Healthcare for her volunteer service. Marie is also the author of Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy. Visit her at ComeBackEarlyToday.com.