Best ways to talk to the demented

In My Humble Opinion
1

I won’t put up much of an OP here. Suffice to say that during the weekend I went and saw my gran who recently (most likely) had a stroke and (probably) has now got vascular dementia as well.

When I went to see her with my brother she was basiaclly insane. She recognised us both at least but everything she said was crazy*. Even so, interestingly, she still had her Linctus ™ grin and everything was kind of nice, and while it might just be my wishful thinking we connected on a visual level.

Assuming no deterioration I won’t be seeing her again for around six weeks but want to hear some tips - especially from relatives. I have actually some experience in talking to demented people from a caring POV but when it’s an immediate relative it’s suddenly totally different and much harder than you think. At various times I was on both the brink of crazy laughter (actually I did chuckle at times) and yet also at other times tears.

Whadda you lot know?

*I know a little bit about neurology from oliver sacks books and the lack and I deffo noticed some confabulation. For example I asked her about her lunch, and the first statement was that it was very nice. Then I asked her about what it was she had specifically that day and she said she had ice cream five times a week. In other words probably covering up that she had no idea what she had had. But then the loony stuff like the indoor window frosting up during the night (the NHS ain’t that bad :D), my aunt living on the hosptial grounds, my dad walking around (while a couple of hundred miles away) playing the bagpipes with a novelty hat… not so good… She also asked what school my brother was going to now (my 22 year old brother) - for a laugh at this point I said “Gordonston” and she at least knew that Prince Charles and Prince Phillip had been there. Sadly she didn’t seem to get that there was no way at all Simpler Linctus could possibly there.

2

I have a lot of experience with this both in my job and in my personal life.

if she says things that are “crazy” when you talk to her, don’t try to make her see reality or correct her. just smile and go along with whatever she says. do your best to enjoy your time together the best you can.

be aware of your body language (relax!) and smile - these are always important but become even more so with any dementia.

it’s OK to be sad about what has happened to her, but remember demented people are usually about as happy as anyone else.

3

Wow. I’m in nursing school and we were actually discussing this very topic today. My teacher explained to me that a demented patient will be able to recall memories from his/her past but won’t be able to remember what they did yesterday. So she said to reminice and tell stories from the past, because her young mind is still intact, but her present mind is sick and doesn’t work anymore. To varying degrees, of course.

4

It will vary, of course, but I learned more about my grandmother in the last six months of her life when she was “out of her mind” than I did the 37 years before that. As Scotty Mo says, my grandmother’s Alzheimer’s related dementia definitely had that “backwards in time” element. First she forgot what she had for lunch, then she forgot where she was living, but as she lost more and more of “now” and “recent”, she talked more and more of her childhood. She was never one to talk of the past earlier in her life, and then as her dementia progressed, I started hearing about her grandfather, the baby brother that died as a toddler, her shoveling coal for their coal furnace and her school and church. She even told me her childhood address, and the intersection of her elementary school. (I happened to be working in the area, and went by to see them; the neighborhood has sadly declined a lot, and I decided not to show her the pictures I took.)

She seemed to find comfort in telling me her stories. I heard a few of them over and over, but I tried not to let her know that. It gave us something to talk about, and it let her retain that Elder role while she became more and more dependent on us for everything else.

She seemed like she remembered our names until the end, but it wasn’t until after she died that her caregiver let us in on Grandma’s secret: she’d written down our names and relationships on an index card she kept at her chair. Every night, she’d take it out and read it out loud over and over, teaching herself who we were. sniff :frowning:

So…if I have any advice, it’s just…be there. Be in the moment. Let her lead the conversation. Ask her about the past, but make it the distant past, and she may still remember some interesting things. But if she doesn’t (vascular neural damage is different from Alzheimer’s neural damage), then just talk about the weather and your plans for the weekend, and try not to get frustrated when you have the same conversation twenty times in an hour.

5

Good advice, WhyNot… I would add, don’t “quiz” her to attempt to figure out the current extent of her dementia or who or what she remembers. If you talk about people she knows, identify them by relationship AND name (e.g. “My brother, Tony,” not just “Tony” when you refer to him), to help her follow along. And definitely do try to get her to tell you some stories about the past.

6

Oh, yes, very good!

Also, I remembered one other specific thing that seemed to help a lot. Near the end, when she started realizing (and admitting) that her mind was going, she’d occasionally say, “I don’t remember too good anymore…” with a worried look on her face. I didn’t try to deny it, or to convince her otherwise. Just hugged her and said, “That’s okay, Grandma. It’s our job to remember for you now.” That seemed to go over better than my mom’s protestations or my uncle’s constant “don’t you remember?!”. YMMV.

7

I’m looking forward to being demented. Sitting in the rocking chair out on the porch “speaking” to people who don’t pass by. It won’t be my problem, it’ll be theirs (whoever got the short straw and has to watch over me.) hehe
Dementia is like being stoned and halfway tripping. I think I know because I’m halfway crazy and cared for a loved one who had it for real. They’re not totally off the wall; it you listen for the links you’ll find that it all connects to some real intance—but the wires are crossed and sometimes fried.
Laugh when she’s funny. Laughter and smiles are never bad. IF she takes umbrage at something, though, say You’re not making sense and I’m doing the best I can to try to understand. You’d be surprised how much simple social instruction will whip them into line. (They [we] want to do good.)
Enjoy her and go with the flow. We’ll all be there eventually if we’re lucky enough to live that long. (And don’t get hit by a Mack truck.)

8

WhyNot and AnaMen had some really good tips. I noticed with my Grandpa and my great-gran (my Gingo) that it was very embarrassing for them to have it pointed out they weren’t remembering things. So help them avoid that.

When you do talk about the now, give them plenty of information. For example, mention the season and that it has been cold before you talk about the weather. Otherwise they’ll get it wrong and feel embarrassed.

Then there are usually their favourite topics that are still fine for a long time. For my Gingo, it was clothes. I used to go and see her right after going shopping just so I could show her what I’d bought, because even if she couldn’t remember me, she would be able to comment on the clothes and it would cheer her up. She would feel useful, because she could say how I should wear a scarf, or what things go together well, or how I should wash something. One time I showed her a thong, and told her “the thin bit goes at the back”, she didn’t stop laughing for about 10 minutes, she told all the nurses and said that I shouldn’t expect her to iron something so ridiculous. Happy times :slight_smile:

For my Grandpa it was poetry and nature that we could always discuss. Again, these subjects made him feel useful, because he could give me advice on how to attract birds or tell me a good poem about a specific subject.

9

Are people with dementia aware of it? Does writing things on cards work?

10

No and no (well not in my experiences)

My mother has normal pressure hydrocephalus (and narcissistic personality disorder with a side of histrionic personality disorder) the NPH has caused her to develop lewey body dementia. She hallucinates, specifically she thinks photographs (such as in newspapers and magazines) are people visiting her.

Sometimes it’s hilariously funny, f’rinstance when she went through a phase thinking she was married to George Clooney. Other times it’s not so funny, like when she demands that I make the guests tea and sandwiches or other food. Trying to fool her by pretending to give them food and drink doesn’t work.

Then there are the times when she thinks she’s in someone else’s house and wants to go home. Taking her out for a drive 'round the block and back doesn’t work.

Because of her NPD she won’t listen to anything I say and she argues every last little detail of anything with me, to the point where she’s hit me, and she regularly threatens to call the Gardaí, or report me to someone. The other night she decided to go to bed around 8pm and pitched a major hissy fit at me for not going to bed as well. She got back out of bed and stood outside the living room door watching me watch TV (I couldn’t see her because of the reflection from the TV on the glass), and she went berserk at me (I was watching episodes of Supernatural).

I have a white board that I write on to tell her “I’m in the kitchen” “I’m upstairs” or “I’ve gone shopping” (or whatever information I need to convey) she completely ignores it. If I point it out to her she says she can’t read my writing (this is something she’s been saying to me all my life). I have to lock the kitchen door to stop her going in there to make tea etc for her guests. I also have to lock the front door and hide the key to stop her trying to go outside looking for whomever she thinks is walking passed our house.

I’ve been advised umpteen times by people as to how to talk to her etc, but none of the suggestions work because of her NPD/attitude towards me. Other people can talk to her however. I’ve had it suggested to create a ‘memory box’ where you gather items from her past (photos etc) and go through them and talk about them with her. She used to knit and sew, so knitting and sewing equipment is supposedly a way to ‘entertain’ her. Problem is she only knit and sewed clothes for me - in them thar days it was cheaper to hand make clothes, and she refused to spend money on my clothes, so dragging up those memories is not good for me.

She had no hobbies or interests, she doesn’t (and never has) read books, so I can’t chat to her about books she likes, or poetry, or music, or well anything.

We have never had anything in common, so I have no foundation to build on, to ‘help’ her through the difficulties of her condition. We’re not entitled to a Home Help and the dementia society who I contact (who do home visits etc) only visit within the city limits and we don’t live within the city limits - they didn’t advise of any group who do function outside of the city.

http://www.agingcare.com is an American based site that has information and chat threads that you might find helpful.

11

Not generally at end stage dementia, no. It is one of many memory tools we use for early stage dementia, but by the end, it’s generally considered useless and frustrating. But this seems to be one of those things where the book learnin’ and the real world may not match up.

Back in nursing school, we learned that you could tell the difference between dementia and depression because those with dementia don’t know about it, and aren’t really bothered by it, and those with depression know that something is wrong and are bothered by it at least sometimes.

Well, I can’t say as that was true the whole time with Grandma. The first two years or so when we noticed her mind slipping, she was unaware, that was true. But the last three or four months, she knew. At first she laughed it off, but you could see the anxiety building. Eventually, she knew and it bothered her quite a bit, and that’s when telling her it was my job to remember for her took some of the pressure off.

I’d say the last two months were the hardest, in terms of mental decline and her being aware of it. (She probably could have lived longer, but because we’d had lots of good conversations about end of life care with her when she was younger and healthy, and because our whole family agreed on “what she’d want”, we got her into home hospice and simply didn’t call the ambulance when she started having what looked like strokes at home. 24 hours later, she didn’t wake up and that was that.)

The index card shocked the heck out of me, to be honest. According to the books, it shouldn’t have happened. People with dementia don’t know, they lack insight, and can’t learn new information, and… Well, as a nurse and a granddaughter, all I can say is that I’m more interested in the person in front of me than what the books say. And when the caregiver told me she heard Grandma repeating our names and connections every night, and showed me the index card written in Grandma’s handwriting…it was pretty clear what was going on. She was either relearning or reminding herself, and committed to holding on to that information.

But it’s something she did for herself. It’s not something anyone did for her, or to her, and maybe that indicates a significant difference.

12

It sounds like she might still be in the hospital, is she? If so, she might seem worse than she really is due to “hospital psychosis”. My wife’s grandmother was hospitalized over the summer (possible mini-stroke) and was in full-blown psychosis after a week or so. Hallucinations, paranoia, confusion, the whole she-bang. Eventually she got out and is now back to her normal (for her) self.

13

My grandmother had serious dementia and lived with us when I was a teenager, and we learned the hard way how to have effective conversations with her. The hardest thing was seeing her perpetual nervousness, I presume because she couldn’t remember simple things, like where she was or to whom she was talking.

My advice is to do your absolute best to be relaxed, and talk about things she enjoys. Mamaw had a few TV shows she really liked, so I’d talk to her about those and she would light up. She was also a gardener, so we’d bring in flowers and discuss favorite plants with her. It was best to ask her opinions on simple things not related to memory or to tell her a joke, and to move the conversations forward slowly, taking our queues from her.

We learned to avoid asking her questions about the past, whether recent or distant. You couldn’t tell which events or people she could remember. Sometimes she could remember minute details about something from 40 years prior, but not remember lunch. Sometimes she couldn’t remember an important person from her past at all.

Late stage it was difficult to have any conversation at all :frowning:

14

If they ask you something ten times answer every time like it hasn’t been asked nine previous times.

Asking specific questions about the past can cause a lot of stress, but asking leading, open questions about something they’ve mentioned can draw up stories which you had never heard before, or a different point of view about something you’d heard from a different source. “When did you start training to become a seamstress?” isn’t good, because on one hand it’s very specific information and on the other it admits several possible interpretations (at age 10; when I finished school; at the same age other children entered factories are all true for my grandmother); “do you miss sewing?” or “hey, in this picture cousin Dee and me are wearing those identical dresses you made for us!” will trigger a story (of dresses made, of clients with strange requests, of times when Gramps income was completely insuficient).

15

This +1.

When I went to visit my grandmother in the nursing home, I always tried to get her going on stories from her past. Once I got her revved up, that would kill an hour right there.

The advantage was that I learned a lot about her background and her life. The disadvantage was that I learned a lot about her background and her life. Because she had no filter at all, so I heard much, much more than I really cared to know.

It’s good that you visit your grandmother, Simple Linctus. It’s tough to get old, and it is even tougher if you do it alone.

Regards,
Shodan

16

Don’t try to talk them out of whatever they think they are experiencing (within reason!).

When my mother was suffering from dementia, she was very prone to “sundowning” (i.e., confusion worsening late in the afternoon/early evening – so that time of day might not be a good time to visit your grandmother). She would call me, very agitated, and say things like, “I’m in some hotel and they won’t bring me my dinner.” I knew full well from the time of the call that she couldn’t have been back from the dining room more than 15 minutes. I never tried to bring her back to reality. I’d reassure her that someone would be in to check with her about dinner soon. That would usually enable her to calm down. If she seemed REALLY bad, I would call the nurses’ station and let them know, but that usually wasn’t necessary.

It sucks to be old and agitated or afraid!

17

That is soooooo painfully sweet; she was obviously trying so hard. I am glad she had you there with her :slight_smile: And I’d bet the farm she was, too.

18

In another thread last year, we talked about those electronic picture frames you can load up with several pictures and the frame will rotate them on display.

A Doper said he had loaded up a frame for his demented grandmother, with pictures of her children and grandchildren, with captions on the side like: " My granddaughter, Christina, and her husband Bob" “Me on our 10 year anniversary with my husband John in Disneyland, Florida” . Such a frame poses as being a nice “wall of fame” for visitors, but doubles as a face saving memory aide for grandma herself.

19

Oh, I like that idea a lot. I think I’ll share that with some of my patients’ families.