How to be a friend to someone with dementia

KZap

Hi all,

New to the forum, although not to the illness, as we walked this journey with my dad several years ago.

What would you suggest as resources for people in an independent senior living campus, who have a friend showing signs of dementia (repetitive questions, forgetting what to do next in a card game, not wanting to visit a different floor of the building for fear of not finding her way back to her apt, etc.)? She's apparently not yet in need of assisted living.

My MIL says some of her friends are becoming resentful at having to "babysit" their friend when trying to play cards or bingo. They have talked with the facility manager in hopes she would talk with the family. (I'm surprised that senior places don't provide resources for coping with this, actually, since it probably comes up a lot.)

In the meantime, I have suggested that learning how to understand and respond when a friend has dementia might help them. Learning that the person isn't doing any of this on purpose and doesn't remember that she just asked you that same question would probably go a long way...and these folks are also her friends, not family or caregivers, so they're in a different place.

I would appreciate any thoughts or suggestions!
Kathy

Emily 123

It is kind of them to try to get her some assistance. She must be scared when these things happen. It might be worth her getting seen by her healthcare provider, as there are other things, like UTI's, that can present similarly to cognitive impairment.

If she's worried about getting lost then she's a candidate for assisted living because she may not be able to recall if she's taking her meds or eating or paying her bills. Dementia is like an iceberg, in that the most visible issue, the memory loss, is just part of a whole raft of losses experienced as the disease progresses through the brain.

Living communities can tend to be fairly hands off if the person is in IL,maybe because they don't want to be liable for any issues that crop up? They take the 'independent' part of the description to heart.

Her friends would be better off talking to family directly, if they can. Even then, families can tend to stick their heads in the sand because their loved one may seem fine for a short visit or on phone calls. If the friends do talk to family, they should urge them to come stay for a long weekend at least, to gauge how their parent is doing and to start thinking about next steps.

Unfortunately the social isolation is real. It pains me to see the way some residents 'mean girl' others who are slipping into dementia. I think much of it is from ignorance or fear.

This is always an excellent resource to share with anyone who may be dealing with dementia.

https://www.smashwords.com/books/view/210580

I like these videos:

5 losses: https://www.youtube.com/watch?v=awBm4S9NwJ0

Talking to a person w/ dementia. https://www.youtube.com/watch?v=ilickabmjww

Teepa Snow-10 early: https://www.youtube.com/watch?v=pqmqC-702Yg

Careblazers-How To Convince Someone With Dementia They Need Help: https://www.youtube.com/watch?v=ncKhXQtnyfI

Careblazers-5 mistakes to avoid: https://www.youtube.com/watch?v=rO50pVUOlbE

storycrafter

Does the facility have a social worker and/or a residents' care manager? These people can be an enormous resource. I befriended and got to know them over the years where my parents lived and consulted with them multiple times.

My father's independent living residence had both of those people/departments on staff in addtion to a facilities manager. My dad began declining into some dementia while living alone in his independent living apartment after my mom passed. For quite some time, with the help of the wonderfully supportive and helpful social worker, and other understanding staff, my father was able to stay in his apartment despite some significant issues.

The social worker referred us to the best local home care services (there were some issues with the on-site services) and I was able to hire multiple caregivers to come in to be with him, help him out, until he passed. He had one dear friend who stood by him, meeting and helping him at dinner sometimes, until the friend became too ill.

At first he was not receptive to the aids coming in and thought it was silly. But he put up with it knowing it was a reassurance to us, his grown children who couldn't always be there. They respected his privacy and were discrete; provided social contact and companionship as friends dropped away.

It was not an easy process, over the course of about three or four years of gradually increasing needs, and took a lot of communication on my part behind the scenes, phone calls, multiple agencies that I discovered were willing to work with each other on scheduling, etc.

It does take people with awareness of the issues and needs of dementia and physical issues. Some facilities provide educational programs for residents. It still needs a person willing to learn and to be compassionate and tolerant. Unfortunately many friends/acquaintances just can't handle it as the changes come. Social activities dwindle. The hired companionship can fill a gap sometimes.

I hope something in this might be helpful to you. Wishing you the best....

harshedbuzz

@KZap

Hi and welcome to the forum. How kind you are to be thinking about this poor woman who is obviously not getting a level of support needed at this point.

A couple of random thoughts-

It is possible that the IL facility is aware and working with family regarding the shift in mom's cognitive shift and meeting resistance because of denial or a reluctance to upset mom with a move. They may be waiting for a crisis to force the move on family. It would not be ethical to share any of this with MIL and her buddies.

IL is just that. It is a hospitality model that might offer amenities like housekeeping and meals but assumes the residents are capable of autonomy in their day-to-day life. It sounds as if this woman needs more support than that-- perhaps a higher acuity AL or personal care would be a bridge before she needs full-on MC.

I am not surprised the other ladies are frustrated with her behavior. PWD can wreak havoc on a well-established social routine. Often, they can't keep up with conversation-- interrupt the flow or repeat stories or make things about them. Sometimes they can't recall rules for games which can look like cheating. My parents were dropped by the neighborhood euchre group because dad "cheated", eventually he couldn't even manage a game of gin rummy.

IME, and maybe I just know a lot of cranky old-people, this is not a patient population as a group. Many older people seem to lose their resilience when things go sideways. Often there's a sense of this being "their turn" and resentment around anyone interfering with them doing as they like with the limited time they have left. I would expect they would resent "babysitting" as it isn't their job.

My cousin placed her mom in AL when her mom was past that stage. There's an old saying that by the time family is willing to consider AL, that ship has sailed and a MCF is the appropriate placement. I understand that it's hard to place someone in an earlier stage of dementia in a place where many of the residents are significantly more impaired. I don't think family realized how much scaffolding and prompting my cousin was doing at home and things went south fast. Once the other ladies realized she couldn't keep up with their games or activities, they turned mean girl on her. It was a disaster. She would have done better in a facility with dementia-informed care and failure-free activities.

HB

MN Chickadee

Usually a PWD needs more time, attention, understanding from friends. Being coached a bit in a game, ignoring odd statements or misuse of words, validation and constant compassion. I agree with HB, this is often not the forte of people living in a retirement community. Of course not all, but many folks in that demographic do not have the desire or bandwidth to deal with it for a variety of reasons. I guess for now I'd urge the friends to go back to the golden rule while you wait for the facility and family to figure things out - let's be kind because she isn't doing it on purpose and it could be us someday.

SDianeL

I would mention it to the administrator of the facility and they can call the family and have the friend evaluated. Sounds like she needs AL or MC.

KZap

Thank you so much! You have shared many good insights and resources; I'll check into these and share what I can with my MIL. Will see how it goes!

Thanks -

Kathy