Dementia diagnosis - positives & negatives?

[Blogwoman]

DSis & I are really struggling with whether to have DM’s memory loss assessed. GP has offered referral & DM pretty certainly has dementia. She is very aware of her deteriorating memory but says “at least I haven’t lost my marbles...” After years of slow decline,things seem to be speeding up. DM gets upset & frustrated, but also underestimates the problem. We’re now exploring the possibility of live-in care (currently has visits x3/day), which Mum won’t think she needs. We wonder if an assessment & diagnosis would help us make good decisions about her care needs & whether it would bring other benefits, but we fear it could distress her. We wonder how to handle it. The GP doesn’t expect it to bring about a change in medication, so we’re not looking at benefits in terms of treatment. Do any of you have experiences to share?

If your mum needs care/funding appropriate for her needs either at home or in a home then I think you will need an official diagnosis at some stage.

We wondered about that Roy. Might be different for a home but the care agency we’re looking at makes a thorough assessment of the individual & their needs & says a diagnosis isn’t essential from their perspective.

I would ask for a home assessment of care needs to be done by social services or an occupational therapist, I also think you need a formal diagnosis from the g.p. This could help make sure she has appropriate care, any equipment, financial benefits even if it's only attendance allowance and to make sure the house is suitable. It might also help you decide if you are able to apply for power of attorney. The care agency can them come to see her with all the relevant information, draw up a care plan, give you an estimated cost and confirm they are able to meet her needs. It might also be a good idea for the g.p. to discuss future care, prognosis, what to do if her condition deteriorates. Who is providing the care at the moment, is she paying for it privately or is it social funded care. Remember that if you decide on live in care they also need time off, holidays etc.

Diagnosis helps

1. Prescriptions for aricept or similar
2. If she were to ever be admitted to hospital, and subsequent discharge decisions.
3. POA
4. Applicationa for Attendence/Carers Allowance and Council Tax exemption
5. Better understanding of care needs, plus some support from memory clinic staff. (The specialist nurse my mum saw was wise and knowledgeable and helped us through a difficult and emotional period where I had to become the parent to an unwilling and often hostile mother eho was unable to look after herself but in complete denial.)

Staff my mother saw were very tactful and gentle.

Thank you both. Good point about possible hospital admission - we hadn't thought of that. Luckily DM has always been (used to be...) super-organised, so we have POA - for which we are now very thankful. We're going to ask the GP to set things in motion...

Also dementia type symptoms can be caused by other things, and so be reversible. Not likely but worth ruling out. Also the progression of Alzheimer's can be different to that of vascular dementia. I found it useful to attend the memory test, and gain a better understanding of where my mother had lost capacity. She had no visual or language problems. Just was not laying down new memories.

In my experience that isn’t necessarily true. Attendance Allowance is on needs not diagnosis, and lack of diagnosis didn’t preclude my father from getting Social Services care.

Groups available solely to dementia sufferers (eg memory cafes) may be different.

Not convinced diagnosis helps with POA. Clearly they must be competent to make the decision before granting POA. Health and Welfare (and if it’s been written that way) can only be used if competence has been lost, but a diagnosis isn’t necessry to demonstrate loss of competence.

Attendance Allowance is based on what they can and cannot do, not on diagnosis.

Council Tax exemption, yes, would need a diagnosis

@Blogwoman Suggest you couch everything n terms of “assessing your memory loss”, my father could tolerate that, but wouldn’t accept any hint his cognitive function was declining.

Any distress may be temporary. My mum was diagnosed late 2020. Within a day she'd forgotten about attending the memory clinic, ditto the brain scan. She can't understand why we think she needs help as, as far as she is concerned, she is perfectly healthy and has absolutely nothing wrong with her and she hasn't seen a doctor in years (DB and I have taken her a few times this year). I find any distress is usually solved with cake. By the time it's eaten the distress is forgotten.

I've given up on suggesting he thinks about how he will deal with stuff even where its 90% likely. I know the response will be not now I'm boiling the kettle/ about to feed the dogs etc. I just quietly check out stuff and wait for him to panic. He copes by ignoring stuff, I cope by being prepared and going into project manager mode.

Oops, wrong thread!

My MIL refuses any medical assessment. She admits to being forgetful but it's way beyond that. I was worried and thought it would be helpful but it appears she is frightened that if people know about her difficulties they will take advantage of her so I understand where she's coming from now. Sadly I don't think cake would solve her distress after any assessment but she is so resolutely against medical interference that it doesn't really make any difference.

Luckily DH was a GP in a retirement area for a while so has a lot of experience, he isn't worried at all about no diagnosis, in her case he thinks drugs would be extremely unlikely to have any effect and the GP knows what the situation is anyway, it's blindingly obvious. She has attendance allowance (just answer the questions about needs, no diagnosis necessary). She wouldn't go to any groups or activities anyway. The only theoretical benefit I could see would be a council tax reduction but they don't need that.

Obviously each case is different and a diagnosis could be useful but often not necessary, so don't worry too much if they refuse.

Please note that my post was from 2018 - things have changed a lot since then and I hope no-one is relying on info posted 5 years ago.