Former dementia specialist nurse. Ask me anything.

[ElmtreeMama]

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

@TitanicWasAGreatMovie you could also ask your mum to give a neighbour or friend your contact details.

Actually, I did the Tescos set up last time I was over 🙂 But very good idea about getting a neighbours contact details, I will do that next visit.
And, I definitely need to start a discrete conversation around cleaning ladies/general help I think to get it on their radar.

So my dad was diagnosed just after covid and had symptoms before so around 3.5 years. He is very quiet a lot of the time. He has always loved young children but now he finds them hysterical, like if we see a toddler i the supermarket. He goes through phases of not wanting to eat and saying things aren't what we say they are. He just looks lost a lot of the time. I don't know if you will be able to answer this or not but how quickly will it progress? He can't tell the time, read well or deal with money. He doesn't like to be alone. He knows all of the close family but when we talk about extended family he has no clue who we mean.

@Cliff1975 so it's really hard to say for certain.

There are so many variables.

The average is 10 years from diagnosis to the end with the final or very severe stage lasting an average of 2 years before this.

However that average goes down if someone is diagnosed younger or with one of the rarer dementia.

Also things like falls, hospital stays etc have an impact.

Sorry to not be more helpful.

Thank you for your answer- I know there are so many variables but to have some sort of timeframe, even if it doesn't turn out to be right , is useful.

My parent has been diagnosed with vascular dementia - signs were there for 5 years and then exacerbated by a stroke. In your experience, what is the likely remaining timeline? I've been reading that vascular dementia is usually a 5 year timescale from onset of symptoms.

@realsavagelike the reason for the shorter timeframe is because of the increased risks of stroke - so people often don't reach the very last stage. So unfortunately that could happen at any time 💐

I just want to start by saying thank you for starting this thread, it has been very informative.

What changes do you think need to be made to make healthcare for people with dementia and their families easier to access and smoother? I have found that there is a lot of “computer says no” problems with situations like getting appointments for a relative and information, which doesn’t take into account that the earliest symptoms my Mum had was paranoia which made it virtually impossible to access even basic services like prescriptions and the dates of hospital appointments (letters sent to directly to Mum, a lady with no memory, which she promptly shredded). Also I found after initial diagnosis, and occupational health visits we have been set adrift and that there is no further health support for what is effectively a terminal illness, something that doesn’t happen with other illnesses. I know money is a big issue, but it is the same throughout the nhs, I sometimes get the impression that medical professionals are a bit embarrassed and clueless around dementia, which is no longer a practical way to manage the biggest killer of women in this country.

@SinisterBumFacedCat you are absolutely right. Sadly it currently seems to fall between health and social care with both often passing the buck.

There are huge inequalities with end of life care and I can't think or another illness where this is the case.

I think we need to be far more open as a society and within communities and families when talking about death and dying - so that everyone has a way to make their wishes known before the time. Including allowing family members to advocate for them as required.

I think we have definitely lost a lot with very few people having long term GPs that they see for years and years.

We also live far more insularly than ever before and have lost any sense of community and looking out for our neighbours etc.

Dementia also is currently a mental health condition (treated by psychiatrists and mental health nurses) and our attitude as a society is very different to mental illness than physical illness.

I dont have any answers I'm afraid, just more musings!

@ElmtreeMama sorry I don't quite understand. Do you mean a second stroke? Parent had memory symptoms for 5 years or so and then a stroke recently already. Do the 5 year timeframes refer to from diagnosis or from symptom onset?

As I understand it @realsavagelike it is from onset of symptoms.
It is very difficult to give specific timeframes and obviously not all strokes are fatal but yes vascular dementia greatly increases the chances of stroke or multiple strokes
So, usually that is why the timeframe is shorter because someone has passed away before the end stages.

When the patient gets to the point of hardly wanting to get out of bed and only eating very little how long to they have left?

Also, why do they flit so quickly and easily between being means and aggressive and then all teary and apologetic?

Also why do they fixate on certain things and not ever let it go?

Thank you for doing this thread.

2 separate people (with experience of this) have expressed concerns to members of our family about our mother re dementia/Alzheimer's.

She herself quite often complains about her memory/brain function, but not in a way that's conducive to a serious discussion/suggestion she gets properly checked out. She's a young 72, very fit and active, still cycles around central London, has a very good intellectual brain, but does a fair amount of misplacing her glasses/forgetting what she's already said/done and to whom... she lives in an ongoing stressful situation with a family member, and this stress always being in the background may also be contributing, I think.

What would be the process for an initial assessment? Any ideas as to how to convince her to go without insulting her intelligence..?

If two siblings can’t decide where a parent should live, what happens?

Can I jump in from personal experience here. It depends on how much capacity the parent has. Because someone has a diagnosis of dementia, doesn’t automatically mean they don’t have the capacity to make, or at least contribute to their own decisions, and the next of kin or LPA has a duty to involve them in any decisions made, and to make sure that their wishes are abided by as far as possible.

The final/end stage lasts on average 2 years though this is obviously variable.

In terms of your other two questions if you think of dementia as 'brain failure' and think of all the functions of the brain then its easier to understand symptoms that seem so odd to us.

@HBGKC the initial test is a basic memory assessment, I'd suggest she go to the GP as it could be something as simple as a vitamin deficiency which is very common.

Thankyou @ElmtreeMama we have a close family member suffering at the moment and it's so hard

@Cantthinkofaname2203 if the person doesn't have capacity and family can't decide a social worker or IMCA would help with the decision making.

@Fedupandtiredmum 💐 it's an unbelievably difficult journey x

IME assessment starts with the GP. I’m going through the process at the moment as I’ve identified some memory lapses of my own recently, and went to my GP. They are ordering blood tests and I have a double appointment with the GP next week for a memory test. GP has advised that if the test identifies a problem they will refer to the memory clinic for a formal assessment. Before that happens they will also check out other things that can mimic the signs of dementia, like urinary tract infections, vitamin deficiencies, and I think an ECG was mentioned.

It’s tricky getting help for someone else though, because you can’t force the issue. My mum was diagnosed with vascular dementia a few years ago. I had had concerns about her for a while beforehand - a similar situation to your own in that mum was fit and active and generally her intellect was OK, but there were concerns with misplacing things and occasional confusion. She’d identified this herself, but really didn’t take it seriously when I voiced my concerns about dementia, and I was advised that I couldn’t force the issue - GP could do nothing unless mum referred herself. I kept a close eye on things and it was only when she started to deteriorate that I managed to persuade her to go to her GP, who took it from there.

I found Dementia UK very helpful during the whole process - link to their website below

https://www.dementiauk.org/

Thanks for this - very interesting reading. My husband has dementia/parkinsons and it is very tiring and I often feel so resentful, angry, sad for him as well as me and don't think I could carry this life on for another 5 years.
One question please - why would the memory team want to visit him at home ? I find it strange they want to do this instead of the usual hospital visit.

@Carpediem15 it must be incredibly tiring. I'm not sure how I'd manage if it were me.
In my experience it could be just to see how he and you are coping at home. It could also be to get a more reliable test of how his memory is as he'll be more comfortable.
Also it could be something as basic as they don't have the hospital rooms (I've booked home visits because it was such a faff booking clinic rooms before now).

Thank you - thought it might be more than that. I will not tell him anything until the morning they are coming then he will not worry. He is up all night if I tell him he has a hospital appointment the following day or if we are going anywhere. Thanks again.

@ElmtreeMama thank you for your insight - I really appreciate it