Dementia diagnosis - does it make any difference?

[Amoamasamat]

Background: DF's 95, has a shit tonne of serious health issues (heart failure, intestinal blockages etc) that he's been living with for a few years. Frankly he wasn't expected to be with us in 2025. Over the past few months he's also developed rapidly deteriorating vascular dementia. At the moment he's living at home with dm (89) and they're coping with family help.

Is there any point getting df a medical diagnosis of dementia? Are there any ways in which an official diagnosis would help us navigate the system or get him help? I can't think of any good reasons why it would help dad to cart him off to yet another doctor for yet another confusing (for him) examination in our situation. Am I wrong?

The reasons I suppose a formal diagnosis could be useful

1. Claiming attendance allowance? But DF already gets this for his other conditions
2. Medication? But due to his other conditions he wouldn't benefit and we all know there's no 'treatment'
3. Social care support? But my DPs would be self-funding so any care they need they'll have to pay for by themselves
4. Professional assessments e.g. occupational therapy? But DF has already had all these. Has a stairlift, grab rails etc
5. Support from charities or specialist dementia groups? But neither DF or DM want this and DF would hate anything like a 'group'.

Is there anything I'm missing or shall we just carry on watching DF decline in peace? Thanks for any advice or experience.

I think you can get a discount on council tax with dementia diagnosis in England.

He may get some funded non means tested help. I think your GP should be made aware and perhaps they will suggest the best thing to do.

Council tax reduction - I hadn't thought of that! Thank you @LolaCrapola I'll tell DM about that.

And @Viviennemary I kind of agree that his GP should just be made aware even if there's no other 'help'. I suppose I started this thread to see if there's a reason to encourage DM to take him along.

Thank you

He can get a Severe Mental Impairment discount on Council Tax, can be between 25-100% depending on circumstances.

Thank you too @unsync

This is why I love Mumsnet 😘

I guess it depend if he's mobile. My nan had to have Dols. She doesnt have capacity and is no longer allowed out unaccompanied because its just not safe for her.

Having the diagnosis could possibly help in any assessment for capacity if family members were needing to implement power of attorney? Even though we were self funding for our relative, the local authority were great in fitting stuff in the house eg toilet risers, grab rails, panic buttons, tracking fob etc. Having the diagnosis definitely helped in accessing this kind of help.

I found it didn’t make any difference for getting care and services at home but it did make a difference when it came to moving into a care home (acceptance into dementia unit; Deprivation of Liberty procedure).

I have been reading about this also and it's my understanding that if you're parents can afford to self-fund care i.e they have capital above 23.5k then they won't receive a council tax reduction.

My parent has exhibited marked dementia symptoms, probably stage 6, for a long time and a formal diagnosis has made no difference.She was accepted into a dementia care home and received a DOL.
The only way for her to get a diagnosis was from the memory clinic...not even a psychiatric review in hospital could diagnose.And we were way beyond that point.

Have you got medical and financial POA in place?

Are you or any other family member a carer, you can get a carers assessment from a memory service.
Also support with groups for dementia sufferers.

Adult social services will do a needs assessment for a package of care, this may or may not echo what may already be in place by family but will need more support in the near future and there may be a waiting list.

Dementia aids advice ie dementia clock, automatic dosset boxes with alarms, fridge alarms.

There is medication to attempt to slow down the process but this can't be taken with certain other medication.

CARE UK run drop in sessions in their dementia care homes.

How do you know the type without a diagnosis? Has he had a memory assessment or CT scan?

My relative was assessed as having SMI and completely exempt from council tax -this was despite being 100 percent self funding. We also eventually got the higher rate of attendance allowance. The care fees were still eye watering but every little helped so I did apply for whatever we could get. Couldn’t have done that without the diagnosis.

it's my understanding that if you're parents can afford to self-fund care i.e they have capital above 23.5k then they won't receive a council tax reduction.

Not true. My stepdad got the reduction and had savings way over the self funding threshold.

No, my mother (Alzheimer’s) gets a reduction and is over the capital threshold.

Honestly, the council tax discount is probably the main benefit of getting a diagnosis if it turns out to be vascular dementia.

However, it is important to rule out alternatives that can affect cognition, like a UTI or normal pressure hydrocephalus.

If it is vascular dementia, then your dad is probably already taking any medication that would be prescribed.

But I suppose a diagnosis might give you an idea of the things that might be ahead.

Thanks BestisWest for commenting on "the over the capital threshold" eligibility. I'm happy to be wrong and will try and claim.

*For other parent obviously

It helps if he develops delirium due to an infection or if he has to go into hospital. When elderly people go into hospital they sometimes become delirious just because of infection or because they are in a different place, and it really helps the doctors if they know the person already has dementia and roughly how advanced it is. It's just so they can tell how much the person is different from their normal state.

Thank you again everyone. I'll definitely persuaded Dm that we should get him an official diagnosis. It sounds like it could be quite important as things progress.

Sorry you're going through this. This is probably area specific, but for my Mum, she saw the GP who did the mini test and blood tests and referred her. But the actual memory assessment was done at her home and the 'nurse' came to her.

Mum is still very fit and active so it wasn't because of any disability, it was just how they do things. If they don't normally do home visits for memory tests in your area, I would hope it is something you can request.

I think she had to have a CT scan as well. I don't know if they can diagnose without it.

I'd get it done... I found it helps when speaking to medical professionals about other things as DF was mis reporting his symptoms. Also means POA isn't questioned.

When going into care home or similar it's good they know for sure