Former dementia specialist nurse. Ask me anything.

[ElmtreeMama]

Opinions are my own obviously but happy to try and help.

@TimeToBreakFree my wish would be to keep my freedom and I think lots of others think the same way.
Obviously others opinions may be different. But as a society I think we value safety too much often because we are worried about being labelled negligent.

Haha a SAHM.
Freudian slip.

Ah thanks! I hoped that's what you meant as I feel the same!

This thread is very thought provoking.

We are at the point of needing much more care for my MIL and debating between trying to get live in care (she currently lives alone, a hundred miles away, has two daily visits and the company can’t increase it) or looking at care homes. Meanwhile DH is ill and depressed and just sees disaster in whatever we try to do.

MIL always said she didn’t want to leave home but I’m wondering whether a live-in stranger that she will ‘never have seen before’ (which is what she says of her current regular carers!) is going to be any less distressing. I’d hate to walk round my house and find an ‘unexpected’ person there.

Do you think she would learn to recognise them in time?

Mum is 92 and was diagnosed with vascular dementia four years ago after a seizure. I had noticed little ‘gaps’ in her memory previous to her diagnosis, but we put it down to age. I’m just turned 65 and for the last 6 months or so I’ve been experiencing similar gaps. It’s things like forgetting the names of things - for example I was doing an internet shop recently and wanted broccoli. I could see it in my head but as hard as I tried I couldn’t remember what it was called - ended up scrolling through the supermarket website to find a picture so I could get the name from it !! I also find myself unable to name really well known TV and film characters, and occasionally get family members’ names confused. These things happen fairly regularly.

I went for a recent health check with my GP and mentioned what was happening. I thought the GP would confirm my suspicions that it was just me getting older, but to my surprise she asked me a few more questions and then made an appointment with herself for a couple of week time to do a memory assessment. She says if there are concerns with the results, she will order some blood tests and an ECG, and refer me to the local memory clinic for a full assessment. She says that while vascular dementia is not usually hereditary, the underlying conditions that cause it can be, and that mum may have a mixed form of dementia which can be inherited. She also says there are several other things which may be responsible which they will try to rule out via other tests before they do a referral to the memory clinic. I’m really worried for myself, and because I’m mums’ carer. In your experience, would you be able to say how likely you think it is that this could be the start of dementia ? Thanks.

@MagicSpring if I can digress a little. One of the reasons I loved my work was because of how thought provoking it was. I believe if we reframed dementia as brain failure and saw as it we see other conditions (I.e. heart failure, kidney failure) our expectations would be far more realistic and our compassion/patience would stretch further.

That said, in my honest opinion no I don't think she'd get used to them completely but it may be that it's the lesser of two evils allowing her to stay in her home.

@Rosscameasdoody I'm sorry. I think other causes are more likely in my experience, such as a deficiency.
However it is good to rule everything out.

If you get a diagnosis of dementia there are lots of things that can help with early diagnosis.

The best thing you can do is ensure you have as much in place as possible.

Thank you, it’s very kind of you to reply.

Thank you. It's kind of you to answer all these questions.

Can I just jump in with something from my own experience some years ago. Similar thing - a friends’ brother had registered a lasting power of attorney for their father, and after talking to her dad she wasn’t convinced he understood what it meant. She notified the Office of the Public Guardian (OPG) of her concerns and they investigated. It transpired that everything was above board in this case, but if you have concerns it’s as well to check because they will investigate all parties to the LPA and make sure nothing is amiss. I applied for an LPA for a family member and I know that the donor (your MIL) has the option to nominate a ‘person to be told’. It’s not compulsory but it’s part of the application process and MIL should have been made aware of the option. The person to be told is notified by the OPG that the LPA has been applied for, and they have a period of time to raise any concerns or objections connected to it. Might be worth checking with the sibling to see if they have been informed, and take things from there.

Thank you so much for your reply. I have a B12 deficiency (pernicious anaemia) and GP said they would have to check that out fully as well to see what B12 levels are like, but she didn’t elaborate as to whether she thought it made dementia more likely, or if it could be a stand alone cause of the symptoms. That’s a bit clearer now, thank you.

@ElmtreeMama i have a relative who is showing various symptoms of dementia, but has not gone to the doctors about it.

it is getting really bad ( now at stage of forgetting some nieces and nephews, not knowing what jobs close family members do etc)

There has been no official diagnosis, or even a visit to the GP. My relative’s closest family don’t seem to know what to do. I think they’re expecting the relative to make their own appointment.

this relative also has long term health conditions ( heart related) which may be a factor in any dementia, but despite repeated visits to specialists, no one seems to have raised this as a possibility- either with the relative or close family.

covid restrictions meant that until recently, this relative was attending hospital appts alone, but could never remember what was discussed.

my question is how do you get a diagnosis and care for an adult with dementia if they aren’t capable of making an appointment themselves? Can a relative make them go to the GP?

@Flyingsparks a relative can't make them go. But I have known relatives send a letter/email to GP outlining symptoms to them and then accompanying or recommending they go to the Dr.
Sadly beyond this all that can happen is waiting for a decline that would then lead to either hospital admission and a diagnosis there or social worker involvement if you feel that would benefit.
If they are a major risk to themselves or others then 999 of course and this can lead to diagnosis this way.

In some cases I have known GPs to invite patients in for a 'check up' if relatives have made concerns known but that was pre covid.

@Rosscameasdoody it sounds like a b12 deficiency in my experience/opinion but of course its good to get everything checked.

How much research have you done into the potential causes and alleviation of dementia and cognitive decline (eg Bredesen Protocol) outside of the generally accepted mainstream paradigms (eg genetic causes/ aging population etc)? Do you have any theories as to why we are seeing such a rise in dementia?
Thanks :)

I only know a little bit about the bredeson protocol if I'm honest from knowing patients who have used it.

Absolutely just my opinion but I think given mindfulness is a recognised tool for improving cognition then part of the problem is the fact our brains are bombarded with information and technology and fast input from birth seemingly.

I also believe inflammation plays a big part and particularly when you consider how many different types of dementia we are now seeing. So an anti inflammation protocol would be worth trying.

Of course I've heard lots of theories over the years (fluoride, chem trails, statins etc) and I'm not ignorant enough to claim I know enough to fully dispute any theories.
I've also seen lots of studies in practice trying to slow the progress of the disease and think part of the difficulty is that no two brains are the same.

Thank you.

Thank you.

the sibling definitely wasn’t informed- he asked, and was told no, the other sibling did not want a joint POA. We have had to apply to the OPA to find out what has been registered.

mil clearly understands what POA is if you explain. She can articulate that she wants both her children able to make decisions, not just one. She does not remember that her dd has sole POA, but if you ask if that is what she wants and if she would have signed to agree she is adamant she would not have signed had it been explained.

she does not have access to any ID or documentation, so cannot revoke or cancel if she chose.

@ElmtreeMama thanks for your advice

Great thread ty

@phoneissue you're welcome x

My mum has pretty severe dementia and is incontinent. She resists being changed. She has just been turned down for a place at a care home because of this. Do you think this is going to be a problem getting her into a care home? I had assumed that this was pretty common behaviour for someone with advanced dementia.

@Neolara you probably need a nursing home or a care home specifically specialising in dementia care. It is very common sadly.

It was a specialist dementia home.

Thank you OP, I believe my mother has made it clear to the nursing home that we do not want him resuscitated etc. I still hope that he will go quickly and painlessly although I know that's naive.

Neolara my father also hates being changed or washed, he thinks people are trying to attack him and gets very distressed and sometimes aggressive.
When we were looking at various nursing homes, some of them seemed really put off by this behaviour, even though we thought it would be common. It's like as though they just wanted quiet, compliant residents, which I suppose would be easier for them.
But also the other people in his current nursing home seem much more complaint and less problematic than him.

I'm not sure if it's a phase or will pass, but it's very discouraging, as you say it would seem to be normal for your mother's stage of dementia but some of the homes don't seem to treat it as such.