Talking to Someone With Dementia
Updated: Mar 25
Dementia can be rude, frustrating, quiet, loud, sad, funny...the list goes on and on. And that's for the person with it as well as for family, friends, caregivers...that list goes on and on, too. There's no playbook to follow either, since every interaction can be different from the last.
That's why I began sharing my experiences in memory care with my friends and family. I think it was a combination of me processing what I'd been through on a particular visit as well as celebrating the little "wins" with challenging cases. And perhaps subconsciously I was hoping they'd better understand people with dementia, since the statistics are clear that we're all going to know someone diagnosed with it. I'm often amazed myself by how little is required to make a difficult interaction turn easy.
I also like sharing with them insightful or inspiring pieces of advice I get from those with dementia, such as what's in my book "Conversations With Alzheimer's."
Below is an email I sent to a friend early on in my experiences with spending time with those with Alzheimer's/dementia. There might not be an official playbook to follow, but re-reading the email many years later tells me now that I was learning that the heart and gut will always know what needs to be done.
So, if I had to write that dementia playbook, it would contain one word: "patience."
From the email:
"Went to visit my local resident today. Hospice was in with her and said they would be at least 30 min. I didn't want to try and find time to come back during Sunday's rain, so I said I would just hang out and visit with other residents. This is the board-and-care, so it's always the same group in the living room. There was a crowd today--one of them had family visiting. But this one woman, every time I come, the patients and workers are always yelling at her. She doesn't sit still and she keeps walking and sits where she wants and they yell at her to sit down and they keep putting her back in a chair and trying to block her in. That's for her own safety and also they can't get anything done with residents like that.
I'd started to help the workers at the another place with the more agitated or antsy ones because they can't manage any other residents, so I'll take them for long walks in their wheelchairs etc.
When I went to the living room, this lady was in her lazy boy but kept trying to get out of it. So...I made my mission to calm her down--always a goal. I calmly and quietly told her to sit down, and maybe three times she tried to get up and then I just sat on her armchair and would hand her the two nearby toys or would touch her hand. I honestly wanted to see how she would behave with someone just sitting with her and also having physical contact. Not to say that they aren't warm to the residents; I just don't ever see them sit down with them because they are so busy, but that doesn't mean they don't do that at night. I just wanted to try my own experiment. And you know what? She stayed put.
At one point she kind of played with my hands, then the rest of the time she sat quietly with my hand cupped over hers. About 25 minutes in, she looked up at me--I've never seen her make eye contact with anyone--and I just smiled hugely at her, and she looked down and started to smile and laugh. OMG, I almost cried. And from that point on, every few minutes she would look up at me and I would smile and she would laugh.
One of the workers asked if I was able to understand her and I said no, but hearing that was another challenge. And so...I would talk to her...and she would speak back, very softly. Or, she would speak first, very softly. And sometimes I understood her. Sometimes she trailed off. But, I asked how she felt and I understood her say, "pretty good," and she commented on someone smiling, so when that aide came by again, I said, "She said she wants to see you smile," and that forced the aide to engage with her.
This is the hardest thing for people to understand about dealing with dementia--not getting frustrated or blowing them off when they seem to not know what's going on. It's easy to figure, oh, they won't notice or care. But a hand hold is a hand hold is a hand hold."
Lesson from my grandma: Red nail polish goes well with any age.
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