Rapid Onset Dementia

[Autumnmizzle]

Am asking this for a friend. I have already been through a Dementia journey with my DGM and am trying to support a friend who is overwhelmed with what they are experiencing.

Three months ago his 93 year old DF was a little forgetful and becoming more frail, but was a bright as a button. Coming out to lunch and regaling us with stories of his early marriage.

Today he is unable to understand who or where he is, or what is going on in his surroundings.

He was in hospital a week ago with insulin issues, double incontinence and utter confusion. Now he has been released with an interim Care Package.

The issue though is that he is so confused that he believes no one is caring for him and is phoning everyone listed on his phone saying he hasn’t been visited for days. This includes 999 and repeated calls to my friend all day and night.

Yesterday he had 4 Care visits, 2 DN visits and two visits from my friend. This morning he is shouting down the phone that no one is caring for him.

My concern relates to the rapidity of this development, the total absence of GP care in the scenario and what my friend should be doing next.

The carers who come are lovely, but it is clear that his decline is rapid.

Does anyone have experience of such a rapid decline? And can you advise how my friend should be seeking the help his DF clearly needs.

I’m no expert but my Godmother went through similar and it was quite distressing to see. I’d say you need to get a social worker involved to advocate for him. They can arrange a Best Interests Meeting with loved ones and heslthcare workers which would determine the best way forward. It sounds like he should move to a specialist care home as soon as possible.

Just to add, I found that the transition to a care home was difficult for my godmother and she was confused and resistant. Once she’d had time to settle though it was the best thing for her and it was clear she felt safe and comfortable.

Theres a thing called hospital induced delirium, so you might find he improves with time.
But equally my distant relative in early 60’s went to bed fine and woke up with the most distressing hallucinations which was later diagnosed as Lewy bodies dementia which the poor soul suffered with for nearly 20 years needing two on one care for much of that time due to the violence they became capable of.

I think at 93 a care home is probably going to be your best bet, you can re access in a few weeks time if he improves. At that age, a decline can be rapid and you’re sadly most likely treading water till the next crisis/hospital admission. If a care home is in place, it’d make it much easier for your friend going forward. Carers in the home are okay for certain situations, but sounds like he needs 24hr care which is virtually impossible to provide at home for any length of time.

Thank you @Jk987 @user9064385631 for your thoughts.

I think that the biggest shock for my friend is that his GP has been so absent in the whole process.

Trying to navigate through all of this is proving a nightmare

Has he got a urine infection or some other type? Infections can cause sudden onset of confusion etc. it would probably have been checked in the hospital. The DNs may be able to advise.
Barring any infections, GPs wouldn't be particularly involved as this is usually more of a social care issue.

@SquirrelBlue my friend doesn’t know.

He contacted the GP several times before the A&E admission, saying he was concerned that his DF was not taking his Insulin & Drugs correctly and asking if he could be checked for an infection. The GP wouldn’t visit and the appointment offered was weeks in the future.

The DN started that week though and the A&E visit followed after DF collapsed.

An ITU was diagnosed on admittance. My friend assumes that has been dealt with, but without a GP seeing him there is no way of checking it has completely gone.

i understand that this is a social care situation, but remain surprised that the GP is not checking on his underlying health and no one is addressing the rapid speed of onset.

I work in social care
you will find that they will push care at home as it is cheaper particularly if he can’t self fund

Fluctuations in blood sugar can cause confusion, especially in diabetics. But I don't know if that and the UTI could explain your friend's dad's symptoms. It isn't unheard of for some forms of dementia to progress this rapidly.

If his GP doesn't seem to be investigating this, could your friend and his dad see another GP at the practice?