Dementia Assessment for Mum going nowhere - what should I do next?

[childrenofmadness]

Hi, I wonder if anyone could answer some of my questions re: a dementia assessment for my DM (84)? The back story is that for a couple of years now she has been exhibiting lots of signs, that I believe are associated with dementia, not just 'old age' as she insists it is, e.g.

• Very poor short-term memory, same questions on repeat, forgets appointments, dates etc.
  
• Muddles up events/occurrences from last few years (but can remember stuff from long ago perfectly)
  
• Finds it hard to absorb/understand new information, get stressed about quite simple things
  
• Total inability to get to keep on top of paperwork, ignores important letters from docs, banks, utilities
  
• Declining interest in personal/household hygiene (washing not happening, bins overflowing, rotting fruit/veg)
  
• Lack of judgement in the car and dangerous driving
  
• Inability to assemble a meal any more & no interest in food safety/hygiene/use-by dates
  

And so on... back in 2014 I raised this with her Doctor (we have POA), and she was visited by a memory clinic assessor, and she passed it no problems. Nothing further happened.

Fast forward to now, and I've just insisted on further investigations, and again the memory clinic person has visited, tested her, and she passed it again, albeit is showing signs of 'mild cognitive impairment', and this person has agreed with her that no further action is needed.

I don't know if some sort of adrenalin kicks in when she has this test, or whether it's not actually testing the part of the brain that is affected, but I am convinced, that the change in her is not just an 'ageing brain' or 'mild cognitive impairment', due to the list of symptoms listed above. She often seems very spaced out and not herself, too.

My DM is completely resistant to any help, seeing it as 'interference' and is in denial about all that my siblings and I do to ensure complete chaos doesn't break out with regard to her staying on top of things (e.g. the electricity about to be cut off, bank fraud was happening, always loads of gone-off food in the house, light bulbs out everywhere, no oil booked for winter, car left un-taxed etc. etc.) - mainly because she can't remember us doing any of it!

In all other respects, she is in rude health, and my siblings therefore think we should just leave her to it, and be grateful she's not worse, and accept the memory clinic's word.

I don't agree. Especially as she is also my DF's carer, and they live very remotely in the middle of nowhere, with no family or friends close by.

Can anyone tell me, then, any of the following:

• Why is a dementia assessment important? Can some types be slowed down with drugs?
  
• Is the memory test failsafe for all types of dementia?
  
• What should I insist upon with her doctor next? Blood tests? Brain scan? And is it reasonable for me to do so?
  
• Is there some sort of help we can access if she is diagnosed? i.e. a carer popping in a couple of times a week? And financial assistance?
  

Sorry, it's a long list, but I'd love to hear from anyone who's been through this or similar.

[Miffer]

Why is a dementia assessment important?

The only sure fire way to determine what type of dementia somebody has is an autopsy. Scan results, background and other conditions can be pretty good indicators though.

Can some types be slowed down with drugs?

It's debatable but ever changing.

Is the memory test failsafe for all types of dementia?

I am not sure about this, memory tests (ie MOCA, MMSE etc) are usually a starting point. The memory clinic nurse will have (should have) used more information than this. For instance picking up on word finding difficulty in conversation, generally appearance, carers information etc. I, personally, have never come across anybody who does well in a memory test but has a problematic cognitive impairment.

What should I insist upon with her doctor next? Blood tests? Brain scan? And is it reasonable for me to do so?

It's not legal for you to do so. POA or not if your mother has mental capacity you have no right at all to demand anything. If the GP referred her to memory clinic without her consent they may have acted illegally. This is probably the barrier you are facing here. If your mother declines further intervention then that's the end of the story. The professionals involved in her care certainly seem to think she has capacity and therefore will take their direction from her.

Is there some sort of help we can access if she is diagnosed? i.e. a carer popping in a couple of times a week? And financial assistance?

You can get help even if she is not diagnosed. You can ask for a social care assessment (social services, again mum will have to consent) and you and any other carer are entitled to a carers assessment.
Any care services (like carer visits) will be chargeable subject to financial assessment. The exception to this is calls for medication which should be free as it is classed as health care.

I recommend contacting the Alzheimer's Society, they are brilliant at giving advice about these situations and can support you with finances, legal etc even if there is no diagnosis.

[chopchopchop]

The hygiene/lack of care and judgement thing reminds me very much of my mother, in fact every part of it does, but my mother didn't have dementia because she was very much lucid in other aspects of her life. With hindsight - my mother died last year - I think it was a kind of frontal lobe impairment. In my mother's case this was caused by alcohol, but there is also a rare, frontal lobe dementia. Might be worth looking into that, but as miffer said, if she has capacity there is nothing you can do.



Is there anythign else that might be affecting her? In my m

[Miffer]

I don't know if some sort of adrenalin kicks in when she has this test, or whether it's not actually testing the part of the brain that is affected

I meant to address this too. What time of day where the appointments? Some people with a dementia present fantastically in the morning but it's a different story in the evening. The change can be quite staggering. I'm not sure if this would effect a memory test (I don't use them) but it certainly effects the other indicators used for assessment.

[100greenbottles]

That sounds really frustrating. As I understand it, though, mild cognitive impairment IS a diagnosis. It might progress more, or not. Either way, the drugs may, or may not, hold off dementia a bit, but it may not be worth it to push for them. It may also be the case that a diagnosis would make her life worse. We were told that MCI should be notified to the DVLA, though, so you might want to check that. Were you at the test or have you spoken to the memory team? In my experience a patient saying they have 'passed' it is not necessarily an accurate record of what they were told. Totally agree about time of day too.
As others have said, the kind of help available doesn't depend on a diagnosis, so you might want to pursue that anyway - if your parents agree.

[childrenofmadness]

Thank you all so much for your replies. Miffer - I really had no idea that it was illegal for her doctor to request that she attends memory-clinic tests and so on - is that really true? Sorry to sound so stupidly naive, but I had no idea. So our only option is to comply with her wishes and let her be?

Interesting to hear your thoughts 100greenbottles - this whole assessment has at least partly been driven (excuse the pun) by our wanting her to stop driving, as she is not at all safe on the roads now, and her judgement seriously impaired, and her outright refusal to do so. Hence we went to the DVLA behind her back and they requested the doctor's appointment, which then put in motion the second memory clinic assessment this year.

We weren't at the memory test, but it was in the morning, yes, and she read me the letter she received from them afterwards with her test scores. She has good days and bad days, and yes, good times of day too, so this could be a factor I guess.

Anyway, thanks again for all your replies, they are much appreciated.

[Miffer]

Thank you all so much for your replies. Miffer - I really had no idea that it was illegal for her doctor to request that she attends memory-clinic tests and so on - is that really true? Sorry to sound so stupidly naive, but I had no idea. So our only option is to comply with her wishes and let her be?

Well imagine if a husband or wife who had LPA went to their partners GP and started making referrals to mental health/family planning/sexual health/weight loss services. Or discussing those things with the doctor against their spouses wishes.

Some medics are horrifyingly ill-educated about mental capacity. It could be that the GP made inquiries with your mother prior to discussing this with you. In my own experience (of 2 GPs) to discuss medical records for my Grandmother (she changed practice) they had to independently speak to her before they would discuss it with me.

Obviously people like yourself are doing it with the best of intentions but we have medical confidentially for a reason and people have the right to make decisions about their own treatment and assessment.

[Miffer]

Just to clarify, LPA only takes effect when the person has lost capacity to make a decision about their health and welfare (there are two types of LPA, one for health and welfare one for finances).

Mental capacity is decision specific. So a person could have capacity to make decisions about specific tests/treatments/support but not others. It's generally up to the person delivering that specific 'thing' to assess capacity.

[Miffer]

Sorry to keep posting but I keep thinking of things to add.

I mentioned carers visiting for medication earlier. That can be a really good starting point. They are 'pop in' calls (15 mins but usually less) and should be free of charge (I can expand on this if you want more information). You can take the tactic that it will appease you and you will stop 'going on' (if that will work). It's a foundation for potential future care and a piece of mind.

[childrenofmadness]

Hi Miffer - thanks for the clarification - I see your point.

And yes please, I'd love to know more about the carers pop-in calls. For my Dad as much as my DM, in fact, as he is on loads of medication, which we are all pretty sure he doesn't take very consistently...

[Miffer]

The starting point is contacting social services. You can do this directly but it may be quicker to go via any other services involved, district nurses usually have good links with social services so if they're involved that might be a good option. Explain all your concerns when you contact them, tell them about your mum and dad and all their needs and your concerns about dads medication and mums cognition (As somebody said earlier your mum does have a diagnosis). Keep pestering them if they don't come out, most social services departments are absolutely hammered.

How the assessment happens varies depending on local authority, they should have no problem with you being there and should be able to accommodate a time that is suitable for you.

Recent legislation means there is a big emphasis on prevention, providing small amounts of help early on (like you will be asking for) is textbook prevention so emphasise that this will stop things deteriorating to a point where crisis intervention is needed.

Regarding medication calls specifically. Most local authorities used to provide these as part of their regular (chargeable) services. Since the Care Act (2014) came into place it has been made clear that they cannot charge for this as it is health care. This has made it into a bit of a grey area, basically the NHS should be paying but how this is done again varies depending on local authority, in my experience the local authority arrange the care and the NHS pay for it. I believe in some areas the health service is delivering this directly, in this case social services should support you to access this.

The important thing is that you tell them that your parents need help with medication and the consequences of them not taking it. These things are true and perfectly reasonable. If they then discuss charging challenge this citing the Care Act (2014) (you don't need to know the specifics, that's their job). Where I live the local authority and neighbouring ones already have things in place but sometimes the roll out of information to front line staff can be slow.

Don't be redirected. Be insistent. Your parents are entitled to help.

www.gov.uk/government/publications/care-and-support-whats-changing/care-and-support-whats-changing

1.5 makes it clear that it is local health services that should be funding medication support. The 10 point list at the start is really important, that is the new eligibility criteria. If either of your parents are having difficulty with 2 or more of those (difficulty can be that the tasks take longer, that the tasks are only possible with equipment or that the tasks are only possible with medication) due to a mental or physical health problem then they are entitled to support.

[childrenofmadness]

Miffer - thank you so much for taking the time to give all this incredibly helpful advice. I'm so grateful and we will definitely be investigating this route .

[100greenbottles]

On the medication front, the pharmacy can put all the medication into a weekly 'dosette' pack with times on - and deliver it to the house if they don't already. You may just need to ask the pharmacy or do it via the memory service/GP - it's one of those services one doesn't know about til needed.

[Miffer]

Hi, just though I would update this thread as I heard something last week that may change some of the advice I gave.

Apparently on legal advice some local authorities are now charging for medication support. Not sure how this has happened as I thought the legislation was clear but I am not a solicitor and obviously they know better than me. Personally I think it's fishing for a test case, either way my advice around medication may get you nowhere depending on your LA. Sorry about that, it was accurate when I wrote my post.