Former dementia specialist nurse. Ask me anything.

[ElmtreeMama]

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

@ElmtreeMama my DF has advanced dementia and is in a home. This is c.7 years post first significant symptoms. He's now non-mobile, can't sit upright because lost core strength so in bed all day (have specialist chair arriving next week which may enable time in the lounge if it's supportive enough) incontinent, has lost c.70% of his speech, eyes always closed now and sleeps a lot. Eats well but has to be fed, soft food only but not blended yet. Doesn't recognise me anymore

Am I being pessimistic to think we're entering the end game? I hate him existing like this with little quality of life but dread him dying 😭 what are the signs of end of life to look out for? Thank you

@harriethoyle 💐 no I don't think you're being pessimistic, however as he is eating that will keep him going.
I've known people keep going for months on the tiniest amounts, and ultimately some people's hearts seem to keep beating long past we expect them to.

The next signs would be reduced appetite, increased infections/general illnesses/skin breakdown etc

I'm sorry, anticipatory grief is very tough.

Do you have any experience of MCI @ElmtreeMama . Also when it if it tip from mci into dementia. I know it doesn't always tip from mci to dementia and mci can apparently reverse but I have a family member with mci and I'm not sure if this fits or it's heading more Into dementia, is there a cut off. Gp said as family member is still able to make a cup of tea and have a shower then it's not dementia. But in some ways the mci diagnosis doesn't seem to encompass all the issues we are having. Also looking for any tips on coping with a loved one with mci things we should be doing or not doing. Gp has said being social and fresh air but being social is hard when they can't remember people's names etc

@ElmtreeMama thank you - I really appreciate that. Feels like I've been grieving Dad for years but I feel very guilty about the relief there will inevitably be when he dies. Its awful watching him gradually fade. The only blessing is that my Mum isn't here to see this, because it would have killed her. Thanks again x

About one third of people with mci develop dementia, if it's linked to alzheimers then I don't think it reverses. Unlike if it's linked to injury or medication for example.
You could request another memory assessment as depending on what they score it'll tell you how impaired they are/whether it's now dementia, whether its got worse.
The advice would be the same in terms of keeping active, new hobbies/activities, eating well, movement and communication.

And helping with things practically- paperwork, shopping, contingency plans, poa in place, emergency contacts up to date etc

Previous post for @Wobblymama01

Thanks @ElmtreeMama we don't have a POA although lots of people have recommended this, they refuse to discuss it.

I visit once a week. Or take them out somewhere. It's very draining though and I feel guilty but we can't have a back and forth conversation anymore my loved one just sticks to a script like small talk. Not a proper in-depth conversation. I come home and cry to DH ☹️. They can't pay for things I'm shops anymore as don't understand how to do it unless I'm there to prompt and tell them when to get card out, make sure they put it back etc. Can't remember the children's names, can't cook anymore as can't process the steps. It's hard and it hurts ☹️

A close relative with dementia has expressed that she won't go into a home as she doesn't want to be a drain and has instead said that she "doesn't want to exist" at that point.

I'm broadly in support of her POV but what, if anything, can I do about that practically?

Perhaps nothing and it's a big question I appreciate.

My DF had vascular dementia, we have been told he is at the beginning of severe end of mid stages (that was a couple months ago and he's deteriorated since then) he was sectioned because of aggression and then sectioned again because of refusing medication. He is not the easiest of patients, we are about to move him from the secure dementia unit to a home, he is desperate to move will this likely help him improve a little, if he's somewhere he likes better (although he won't like anywhere that isn't "home"). He also has obessessions and is insisting I get his driving licence back for him for when he's "out" and wants his mobile phone to call us, he doesn't understand he is not safe to drive and he's just not capable of using a phone now, he can't even tell the time anymore, how do we manage his expectations? Each visit that is all he wishes to talk about and has even had staff in the home call me about bringing his phone in and sorting his car and licence.

Mum is 77 and diagnosed mixed dementia. She lives at home with my dad and they are doing ok but he is getting to the point of needing respite. She can't be left at all without getting distressed, he can't even go for a walk. My sister and I aren't local (1-1.5 hours away) so we have got referred to a local companionship/support agency. Dad is reluctant to involve them (I think a little proud) until he thinks it's "really needed".

I guess we think it's better to start building up relationship with a few support people while mum still has perhaps capacity to recognise a person and feel safe with them. Rather than wait until it has progressed further and she's less like her old self. Am I on the right lines?

Hi @DrHousecuredme all that can be done is her having an advanced directive in place about care she'd like to receive (or not receive), then log this with her Dr.
Also see if she has a dnar in place if she wants one.

People with dementia do and have gone to dignitas but it is extremely complex and costly.

Id also say that almost every patient I ever came in to contact with would say the same to me, the whole system needs looking at but sadly that won't help your relative.

@Tara336 that sounds very difficult, I hope they are looking at his medication and getting that sorted before discharge.

Can he have his mobile ? Would he realistically be able to use it? Would having it just mean he'd move on to another obsession or wanting something else?
If you think of all behaviour as expression of unmet need then what could this need be? More control, more ways of communicating?
I dont know, I'm just thinking out loud.

Where possible placate and distract. Remember lots of people won't seem like they are on his side and having dementia can be very lonely. So I'd be on his side and saying let's look at getting your keys (I'd say this every time!) Then say, in the meantime do you want to xyz ?

Hope that makes sense

@NotMeNoNo I agree

Also, the hardest time to sort respite is when you're in crisis, so its always better to get these things set up whilst everything is on as even a keel as possible.

Thank you @ElmtreeMama, and @Rosscameasdoody for that very helpful information.

I might suggest she goes to the GP to check for vitamin deficiencies (tho she's very hot on natural immune support etc and takes loads of things!), and hope that the GP takes some initiative...

@ElmtreeMama thank you, his wanting his mobile is definitely about control, I've been making excuses such as its not charged or surely you don't want it here where it could get lost or stolen? We have tried saying he's not allowed a phone but claims others have theirs, I honestly doubt that very much as the dementia unit he is in has very severe cases and I can't see any of the patients being capable of using a mobile any more then DF can.

I will try distraction as a tactic, thank you

When it's in the fairly early stages, can any meds help?

@harriethoyle ❤️

@RatatouilleAndFeta there are some medications licenced for alzheimers that can slow the progression but none that can reverse it
And there are medications for symptom management

Could you perhaps go with your mum to see the GP ? If your mum is there when you bring up your concerns with the GP, she may be more inclined to take it seriously. Might also be worth mentioning to the GP that your mum takes different natural remedies, just in case one of them might be the culprit.

Hi OP. This question is about my mum. She’s 92 and was diagnosed with vascular dementia four years ago. She’s living at home with us, and I can see a marked deterioration in the last few months. She can still manage her own personal care with help - washing, dressing and toileting, but her mobility isn’t good and she is becoming more and more withdrawn. She’s also started to experience loss of bladder control at night. She doesn’t engage as much in conversation and has lost interest in the things she used to enjoy - TV and radio irritate her, whereas before, they were a source of pleasure. Her appetite is now affected, and she exists mainly on Ensure drinks, and I try to encourage her with small snacks at regular intervals, but even this is becoming difficult.

In your experience, what stage do you think she’s at ? And have you any experience of dementia patients having hallucinations ? I ask because from things she’s said recently, I suspect that mum is having them from time to time. Our GP is visiting later this week to do what the surgery are calling a dementia check, and I wondered if I should mention it, but not sure if it’s actually part of the illness. Thank you.

Thank you.
MIL has some type of dementia. Just waiting for diagnosis.
She forgets what she's just said all the time. The doctor has told her not to drive. She's pretty angry about that.
She's a formidable lady. Really hope we can slow it down.
Is there anything we should ask doctors specifically?

(@Rosscameasdoody we don't have that kind of relationship; she's very independent and private, particularly about difficulties she might be having.... Thank you for the suggestion though.)

@Lovelysausagedogscrumpy yes hallucinations can be very common, if they cause her distress medication may help, its worth mentioning to the Dr anyway.

A few people have asked about 'stages' and it's not exact but I've attached a couple of very basic graphs I got from Google to give people some idea of where their relatives may be.

@HBGKC you could phone the Dr and ask the receptionist to relay your concerns. They can't discuss outcomes or anything with you but they can pass it on so the Dr is aware before they see her.

@RatatouilleAndFeta ask what type of dementia, what stage they'd put it at, are medications an option, can they recommend any local services.
Good luck