Alzheimer's diagnosis- questions to ask

[adviceatthislatestage]

Hi all

DM (89) was assessed at a memory clinic last summer for Alzheimer's and had a CT scan also.

This has been confirmed over the phone, but am taking DM tomorrow to discuss results and (I hope) how to support mum going forward.

I was wondering if there are any essential questions /areasI need to be asking about.

Unfortunately I tend to be a bit passive in these medical settings and simply accepting everything that's said to me and not asking any questions on the day.

DM was sent her copy of the letter from the memory clinic to her GP that stated that based on her scores, she was deemed low risk to herself and others (atm)

Not relevant really, but due to her actions when we were children, my relationship with her is not a particularly close one. However I still want to do right by her. She has no other family (or friends living close by) My one sibling lives abroad but had been no contact for many years before that.

TIA

Sorry to hear your mother's diagnosis and condolences to you it can be tough. I am a carer for DP who has Alzheimer's

Who are you seeing? The GP or the neurologist/geriatrician?

1. First question is to check the diagnosis is accurate. If she's had a CT scan sounds like it will be but I would double check whether they think any other scans etc (eg. MRI or biomarker testing) is necessary. The NHS are hugely cutting corners with the elderly/dementia in some areas. I heard recently of someone being diagnosed with Alzheimers just based on a memory test alone which is ridiculous as it could be many other types of dementia. Sounds like if there is a scan it will be ok.
2. Main issue is whether your DM is suitable for medication. There is no cure but the progression can be delayed. This can be a big deal when you are dealing with elderly people with a limited life expectancy - for example it may mean (say) another two or three years being able to live in your own home and manage yourself (as opposed to having to have full time care more quickly.

The first port of call is often donepezil

www.nhs.uk/medicines/donepezil/

[then later on poss memantine - www.nhs.uk/medicines/memantine/]

Be prepared to be told she isn't suitable/no point etc and you may need to ask for a precise account as to why that is. The real answer maybe NHS doesn't want to pay. Then you can take a decision about whether to see a private geriatric psychiatrist and pay privately.

1. If you are seeing the GP, it maybe worth asking if you can have a consultation with the specialist to talk to them about your DM's current state, future prognosis and managagement - and if you are fobbed off about medication by the GP, you can ask the specialist about that.

4.If your mother is still mentally OK at the moment but just a bit forgetful (ie. still mentally competent) if you haven't already you MUST get her to excute a power of attorney in favour of whoever she chooses - you , other sibling (not ideal if abroad etc. This is SO important and do it now before it gets worse. Otherwise when she becomes worse, if you want to manage her bills/bank accounts etc you will need to make an application to the Court of Protection which is slow, time consuming etc.
More info here:

www.gov.uk/power-of-attorney

5 you will need to think about a long term plan. If I recall correctly (I maybe wrong so double check) the average life expectancy from diagnosis to death is about 6 years. It's likely as the disease advances (if she doesn't die from other factors - sorry to be blunt but when you are dealing with people this age you never know), you will get to a point where she can't manage alone - you probably should have a think about what you would do - stay in her own home with carers, come to live with you, you go to live with her, move her into a care home. You should probably discuss with the GP care plan options and the process of referal to social services even if she isn't at that point now - unless she will be over the financial threshold and self funding.

Separately from the above, the advice we were given was that factors that make a big difference to the rate of advancement of the disease are:

hearing [If she has hearing trouble, make sure she goes for hearing tests now while she can articulate any issues and get her fitted for hearing aids that are comfortable for her to wear and she will wear.If you can afford it, worth paying for this as you can get small ones that just fit in the ear and auto adjust to background noise. Also going forward consider going to get her ears microsuctioned if she complains of hearing loss as they can look in the ear with a camera and see if any wax obstruction]

socialisation - being left alone, no interaction etc is bad

familiar environment and routine - a person with a strong and familiar routine in an environment they are familiar with tends to do better.

exercise

Fabulous advice from @Siblingo above.

I would add, you are likely to be offered a pile of information about support and dementia navigators and so forth that may seem premature or overwhelming. Grab it all and put it somewhere safe, you may need it later on. And search around for dementia carers groups - again this may not be what you feeel you want right now but they can be a mine of information as things crop up.

if you haven’t already then apply for attendance allowance for her, and I echo about poa.

I'm going to repeat what's been said because it's so vitally important - she needs PoA if she's not already done it and if she wants to write/rewrite her will it needs to be done now. It's easy to put these off for "later" but they are things that need to be done while she's still at the top of her game. By the time you're seriously thinking of these things it will be too late for her to do them.

Mum left with a prescription, the forms for attendance allowance and a pile of leaflets two inches thick. As it was in covid times every support group was closed to her but there seemed to be plenty of them. She was totally unconcerned by the diagnosis because in a couple of weeks she'd forgotten any of it had ever happened.

@Siblingo thanks for this- very helpful

We set up lasting PoA a couple of years back and claimed Attendance Allowance last year. So at least both of those are done.

Have started thinking about if DM could live with us, but realistically it wouldn't work. My relationship with DH is hanging by a thread, so bringing DM into a tense household is a definite no no.

Oh and we've already been told that due to her asthma, medication is not an option for her.

So, am guessing it's that she (and we) just learn to live with it and see how it develops.

Echo everything said by others. Please don't worry if the diagnosis is not 100% certain - don't go chasing appointments and scans especially if your DM finds them distressing. So much of the financial and care support your DM will require will be based on her abilities and needs which in a disease like Alzheimer's can vary so much from one person to another, rather than a firm diagnosis.

Please be aware that your main source of support will move from the GP to Social Services and carers - this is something my DF found difficult to get his head around when he started caring for my DM with her dementia. So please don't be surprised if the GP doesn't come up with much - it's just not their field. Get on to Social Services - they will visit to assess your DM's needs and also yours, as her carer. Your self refer to Social Services

Take everything offered - even if you don't think you need it.

get all your DM's financial stuff together and take it to yours - wills, POA, pension details etc. So much of my Mum's stuff went missing, God knows where. If she's willing also take any valuables - my Mum lost all her jewellery, which I know would have upset her a lot as she had planned who was going to get each ring, each bracelet. And this was in the very early days when she still went out of the house by herself

make contact with local support groups - they are a wonderful source of support and information

ask friends locally what the situation is. Forewarned is forearmed.

I could write so much more but I've got to get to work

Good luck and we're here to support you when you need it

Please don't worry if the diagnosis is not 100% certain - don't go chasing appointments and scans especially if your DM finds them distressing.

I disagree with this I'm afraid if its early stages because some types of dementia are amenable to drug treatment which can significantly delay the decline. That is why I mentioned it and why it matters if you have a person who is early stages. If it's very late stage (too late to do anything) then it matters less. Given there has been a scan here it probably is ok anyway but personally I would double check if it was my loved one.

As I said, I am aware of people being told they have Alzheimers just based on a memory test (early stage) without biomarker or scans AND THEN being told no medication either - NHS cuts I fear.

Oh and we've already been told that due to her asthma, medication is not an option for her.

This is exactly what I meant. I am not a doctor so I don't know - it may very well be correct - but I would push back on this unless you have been given chapter and verse on why that is. You may have done this already and be satisfied with the answers in which case ignore this completely.

I would ask:

• exactly what medication is not suitable for her "because of her asthma" - which medication are they talking about?

Donepezil? Something else? If Donepezil, what about Memantine? Any other drugs that may help?

• exactly why is not not suitable? what is it? interacts with asthma medication? affects breathing? is it all asthmas sufferers or severe asthma? Is there a possibility of trying it and monitoring it if asthma is a contraindication (I think it maybe for Donepezil)?

Sometimes things can be prescribed with caution and monitored. Of course it maybe that it is in fact not suitable but the reason I say to inquire is that I'm aware of people having to push hard to get a prescription because of cost/funding so as long as you are polite and ask the right questions, there isn't really any harm in approaching it with a healthy dose of cynacism. If the answers is still not suitable, then that's the answer.

To be clear, I'm not encouraging you to refuse to accept medical advice or to assume it's wrong - just to satisfy yourself that there is no suitable drug treatment and that you aren't dealing with an automatic case of asthma = 'computer says no'.

Siblingo

I think this is very much a case by case situation.

For example my DM was early stages but at the Memory Clinic assessments, she became so distressed and unco-operative that to pursue an absolutely firm diagnosis would have been riding rough-shod over her clearly (loudly and some with vigor) refusal to answer questions or have a scan, and therefore breaking the principle of capacity.

People have the right to chose not to have medical interventions, even if others think it would be better for that intervention to happen.

In the final analysis is not not up to the OP to push for anything, if her DM doesn't want it, be that a firm diagnosis, treatment, carers visiting or moving to a care home.

Does your mum drive? If so I would discuss this in the meeting? this wasn’t mentioned at all.
My fil did not see a dr as his diagnosis appointment and just saw a nurse who couldn’t give out leaflets because of covid (this was Oct 21) so unlike pp we didn’t come home with anything and no mention was made of attendance allowance or anything vaguely useful. It was you’ve got dementia- go away and live your life.
please be prepared for how difficult it will be for you/ my mother in law and dh took the news very hard even though they knew he had dementia.
I would contact your local admiral nurse.
Check you are getting higher level (if appropriate) attendance allowance.
Support groups are your friend- my in laws both love attending a singing for the brain group.
Make sure you are kind to yourself- it’s hard for you too, as much as her life will change with the diagnosis, yours may do too and you need to acknowledge this.

Thanks all

Armed with a note pad and my list of questions off we went...

I think maybe I was expecting more of a this is what to expect and watch out for x,y and z

What we got was:

Your DM has hit the jackpot in having both Alzheimer's and vascular dementia.

We cannot give her any medication - due to her asthma/ diverticulitis plus her condition is quite advanced (I did not realise this) so would be if very little help.

Occupational therapist will do a home visit to see what may be required around the home.

No leaflets, but advised to contact Admiral nurses, Alzheimer's UK and other similar organisations

Can self refer to social services.

That was it really.

Mum was not impressed, said to the nurse, 'what do you expect I am nearly 90, can we go now?' You can't argue with that now can you 😂

So have been googling like crazy, downloading leaflets and guides and emailing for more info.

Your DM has hit the jackpot in having both Alzheimer's and vascular dementia.

We cannot give her any medication - due to her asthma/ diverticulitis plus her condition is quite advanced (I did not realise this) so would be if very little help.

I'm so sorry to hear this @adviceatthislatestage .It's a very tough situation when someone you love has dementia.

At this stage there probably isn't much more advice to give (beyond that given already above about LPAs etc). If you didn't realise your mother's condition is advanced and given what you said about what she said, it sounds like she is currently doing ok - which is a good thing.

Sadly, what it becomes is watching someone slowly and incrementally lose their memory, mental accuity, language, physcial ability - but it all happens in different ways for different people at different paces. & it's so odd how it happens, you look back and you think how did we go from (eg) knowing how to use the vacuum cleaner to literally having no idea how to even plug it in. The answer is slowly.

One thing I would recommend/tell you about [because I found out about if very very late despite having had lots of info from all sorts of places] is the This Is Me form from the Alzheimers Society. You can download it here:

www.alzheimers.org.uk/sites/default/files/2020-03/this_is_me_1553.pdf

As the dementia progresses, most people will have little foibles or things that are particular to them that if recorded can really help people who don't know them look after them. Say a person could be calmed down by giving them their particular cuddley toy to hold or they like to watch sport/opera/fill in the blank.

This form is really helpful - especially if you have a hospital admission for anything unrelated to the dementia - when you need to have carers or other people look after your mother

The only other things that I occur to me to say now (in addition to the points above about hearing/exercise etc):

• that routine is very helpful for people with Alzheimers so if you have the capacity and your mother is still fairly ok mentally, it's no bad thing to try to get her into a system of doing things in a routine way - I'm thinking particularly of personal hygene and getting dressed - that sort of thing.

For example, if I had my time again, I would have instituted a routine of having a shower every day and monitored it - so it became a standard practice as physically capable of having a shower (later it will become needing assistance) but the lack of routine meant it was a strange thing to be resisted. I wish I'd dealt with that differently. It's easier to keep an established routine going than deal with severe resistence.

*if you have an intention to try to keep your mother in her own home (or move her in with you) and occupational health will recommend it (or if private, you can afford it), get any necessary occupational health modifications to your home done now - so that she is familiar with them and can use them from early on as part of her routine - I'm thinking of things like a shower seat or a disabled hand rail attached to the wall to help someone stand up off the toilet. It maybe if she is 90 she has this already but if not worth looking into.