Former dementia specialist nurse. Ask me anything.

[ElmtreeMama]

Opinions are my own obviously but happy to try and help.

Do you have any ideas how to interact with a person with dementia who can't talk? Well they can but the words don't sound like words.

Any ideas of what we can do when I visit them? I already play dominoes and simple games.

Have you ever come across someone who has divorced their spouse while the spouse had dementia?

@pensionconfusion simple games are a great idea! It helps keep those connections working.
Other things could include taking and talking about something specific e.g take a plant and talk about the colour of the leaves, water it together, say what it smells like etc.
Or even give a hand massage, there's studies around the lack of 'none clinical touch' for people living with dementia.
So anything sensory basically.

@ChroniclesOfBanarnia

Yes I have although rarely and obviously it's complicated legally due to capacity/consent etc but it does and can happen.
More commonly a spouse will leave and not legally divorce.

Hi, thank you so much for this thread! Have you any tips for interacting with someone at early stages who is in complete denial? Thank you.

@YesYesAllGood

Honestly the easiest approach is what I call "oh silly me"
If you say something happened because it did and they disagree because they don't remember
Say 'oh silly me'.

We know that reminding or correcting people with cognitive impairment doesn't help or work and it's easier and less stressful for everyone if you just step in to their world.

In terms of getting someone in denial to access help this is a lot harder but again a certain amount of coaxing and cajoling can help. As can writing out their symptoms to give to healthcare professionals if you attend appointments with them.

Unfortunately sometimes it is a case of waiting for things to progress to the next stage which isnt ideal but necessary sometimes.

@YesYesAllGood also think about how long you need to formulate an answer to a question then triple it and give them this time. And reduce the amount of questions asked overall.

Thank you for doing this.

Pretty much the first thing my mum (with a dementia diagnosis) says when I see her is that she wishes she could get rid of her 'sniffles'. She doesn't have a cold, and hasn't had one for years!

My assumption is that this is just another symptom, or her to trying to explain why she doesn't feel herself, but without having the words to explain why not.

Is this common?

Yes very common.

Along with thinking of something to say!

Like we are used to talking about the weather or whatever, it could be that this is just an easy conversation starter for her.

Or yes trying to figure out why she doesn't 'feel right'

Or potentially something about seeing you makes her think of something specific like 'having the sniffles'

Can you recognise the onset of dementia in yourself early on? I am on my own and whilst fine now, my Mum had dementia and I want to be able to plan my future in case it happens to me as I have no one to do this for me.

@Whatevergetsyouthroughthenight in my experience usually not!
My advice would be prepay a funeral plan, have a solicitor (or family member/friend you trust) allocated power of attorney. Write an advanced directive about treatment you'd want. Have a will in place.
Local hospices often offer services like these in exchange for donations.

Luckily mum complains about the same thing when my siblings visit, or I'd take it personally!

But thank you.

Another thing I've just thought of is that she's recently experiencing hallucinations. She talks about (and has pointed to) people who are simply not there, and haven't visited, slept in the spare room or whatever she claims.

She seems largely unbothered, certainly not scared, and just grumbles that none of us believe her. I tend just to gently tease her, saying that maybe it's one of her deceased siblings popping in to say hi - she laughs at this. But should I do something different?

We have asked for a review at the dementia clinic, but at our initial visit it was decided not to medicate her as the fall risk was too great given her history. She's in her 90s and was formally diagnosed 2 years ago.

@whereiwanttobe if gently teasing is working then that's fine :) if it's causing distress I'd say something more like 'oh well not to worry they've gone now' if it's not scaring her I mean.
I guess my motto is generally agree and distract.
Anything to reduce distress if that makes sense.

I'd agree falls risk probably isn't worth it if she's happily bumbling along.

@ElmtreeMama Thanks! I will book my trip to Dignitas when I am 85 then and hopefully I will still be fit enough to get there on my own.

@Whatevergetsyouthroughthenight put it in an advanced directive. There have been some cases of people with dementia going to dignitas but they're actually quite rare.
You could tell yourself you'll ask your GP to refer you to memory assessment service at 70 or 75 etc but usually people move the goal posts as the get older/further along the journey.

My DF had FTD, fully aphasic, unable to move for the last year or so. We visited him every day and I was with him as he died (very peacefully on a syringe driver). We constantly talked to him. Do you think he was in any way aware of us as he didn't ever respond - well he couldn't, but I do wonder sometimes if he had moments of lucidity but we just couldn't tell.

How do you know when it is time for a nursing home? My grandmother has carers coming to her house (twice a day but soon to be three times). She has worsened of late and is very confused in the morning but by the afternoon is a lot more with it and coherent. Then comes the night where she’s up for half of it wandering around the house confused. The worry is her leaving the house at night time which she hasn’t done yet or answering the door inappropriately dressed which she has done. It’s the balancing of her safety and her comfort because I know she would hate to leave her home especially when she’s a lot more coherent and with it in the afternoons. Any advice much appreciated! Thank you.

@ElmtreeMama thanks, that’s really useful information. I have been concerned about power of attorney as there’s no one I trust young enough to take on the role and who’s to tell if a solicitor will still be there in 20 years (or know if I have dementia). My family are quite long lived so Mum’s dementia didn’t really get bad until she was 90 and then it was exacerbated by a stroke.

@FoxFeatures I'm sorry 💐 honestly I don't know if he could remember/understand BUT I fully believe people with dementia experience moments of joy and pleasure and humour and love right up to the very end. And even if he couldn't link those moments to previous memories they are still valid and important in the moment themselves.

What are the early signs of dementia versus general ageing memory loss? My Mum repeats stuff to me, tells me the same thing again and again even if we've already had a lengthy conversation about it. She also seems to be struggling a little to make decisions and seems to want to be led to choose things. I'm not explaining that well but if we're changing something in the house for her and we say "you don't like that colour carpet so do you want to change the colour" she'll agree but then two minutes later as you're confirming it she'll say "so we'll keep that colour".

How do they test and is there something I can try discreetly at home first?

@Briallen ah the endless balance of safety and wellbeing. Its such a personal choice.
What would she have wanted? To live her life jn her home and potentially become injured or worse or to have been safe and live longer in a care home.
Also how would you feel with the outcome of these two scenarios.
Knowing she became injured or died due to being in her own home or knowing she's fine but potentially unhappy in a care home.

And of course they are just worst case scenarios. She may be fine in a care home and enjoy it.

Aware this may not be helpful advice but just my thoughts.

@Whatevergetsyouthroughthenight a company or firm has more chance of still being there and if it isn't they usually pass the wills etc over to a new firm

@whyisitalwayswindy they test with a set of questions. It isn't foolproof as it doesn't take in to account IQ etc but they then follow up with a scan though this doesn't always show degeneration.
Lots of people receive a diagnosis of mild cognitive impairment first.

I'd recommend a diagnosis is possible as there are medications to slow decline.

The tests allow for a certain amount of decline related to age.

First step would be to rule out a urine infection or b12 deficiency which can cause the symptoms you describe.

Do you think it’s feasible to plan to have someone with dementia cared for at home?

sil plans to move mil in with her, and care for her herself. With occasional help from private nurses, and respite from us.

mil is early stages at the moment and very compliant, but I don’t think a nursing home should be ruled out as I think sil has her eyes on mil’s money and doesn’t appreciate how hard looking after an elderly relative can be, let alone with Alzheimer’s.

do you see many cases where Alzheimer’s patients are taken advantage of financially by relative carers? How is it best to protect against it?

Thank you for starting this thread and also for the wonderful work you do.
I am married, no siblings, no children. What will happen to me if I am alone and unwell really worries me…I fear being incapacitated, in care with no one to visit or care for me.