When does forgetfulness become dementia?

[NetZeroZealot]

I've just spent a couple of weeks staying with my dear 88 year old Dad.

I'm really concerned about his memory, which has really deteriorated over the past year or so, and spending a lot of time together with just the 2 of us (Mum was away) has highlighted this.

For example - reads the Times every day but doesn't know the name of the PM. ("that little Indian man")
Gets very confused about time of day and even the month and year.
Sometimes forgets if he's had a meal.
Can't remember some grandchildren's names.
Repeatedly asks same question, e.g. what time is something happening.
Can't remember basic words/names like names of supermarkets, some types of food ...

BUT - very capable of lucid and interesting conversation and appears fully mentally engaged most of the time.

I'm not sure what I should do.

I think that it would be worth a gentle encouragement to go to the GP for some formal tests, this goes through the difference in dementia and normal age related memory changes.
In conversation, if you go off topic will he follow or is it a matter of a great conversation if you stick to his preferred subject? Did he reliably know the grandchildrens names before and sees them regularly enough in small numbers to really reinforce names or does he see a group of children where its easy to lose track a bit?

The grandchildren's names surprised me as he only has 6 and knows them all well - they are nearly all adults now. But it was in a conversation about them, they weren't present. I think if they had been in the house he would remember them.

On the other hand he can still give excellent directions on familiar car journeys (he doesn't really drive any more).

And has no trouble performing regular tasks - cooking his breakfast etc.

That link is very helpful, thank you.

For us, it was the combination of some of those kind of things ...

No longer using people's names e.g. "your husband did X for me".
Relaying stories about being in local shop & seeing people - which we knew to be untrue. But passed off to us as "news" of what was happening locally!
Lack of logic to normal things e.g. if a pen or book couldn't be found, the immediate response was that someone had broken in & stolen it.
People reported as being "unkind" and not speaking to him - but in reality it was him not paying attention to conversation.
Asking the "wrong" person the "right" question e.g. "how are your kids" asked of the relative without kids.

But then again, knowing what was happening in the news / in his local area, and stories of his youth - perfect.

I'm going back a few years now, but we just knew the time had come that the balance of good v bad days wasn't right. There was a point when we knew we had to seek formal diagnosis, to kick off the care system process.

In terms of what to do ... I think that's different for us all, depending on circumstances. Is it the GP you need, to formally diagnose perhaps dementia? That might be because you're thinking care package, possibly moving him? Or is it more that your mum needs some practical support - or does she not see this and therefore not seeing a need for support / change. Can you have an honest conversation with the both - perhaps on the back of "having read an article" about getting power of attorney sorted whilst everyone is still of sound mind etc

Sending best wishes - sadly it won't be an easy time.

Make sure you have Power of Attorney for both parents.
Good advice regardless.

how much does it bother you / them ?
what would a label do for you all ?

forgetfulness is really normal. Worth getting assessed if it’s troublesome or you would be able to access something you currently can’t.

meds for dementia aren’t really all that good overall so unless person was really keen I wouldn’t bother for that.

optimise everything - new specs and ordinary bugs hearing aids seem to have helped our relative a lot ( needs prompting / teaching re aids every day though 🤣)

we are going through this got a relative - already in care home but looks “ better “ than he is - you can have a really good chat for quite a while till it dawns that you are getting AI like politeness without any “ substance “ which is interesting. Always been watching documentaries - what about - wildlife - tell me more - well what they do - what wildlife - animals. Yknow etc 🤣

reasons why for us - already in a home but as appears “ok” doesn’t get the prompting needed and choices are encouraged that he can’t really make etc. Eg he’s sent to wash / shower but no toiletries are needing replacing after months ….
also forgets can’t walk that well … and I couldn’t drop at outpatients , go and park and expect him to be where he should be 🤣 so we are taking taxis everywhere. Need a blue badge really.

I’m a MH nurse who’s worked for Older Persons Mental Health. In general, a dementia diagnosis requires a low enough score on a cognitive test plus a brain scan (usually CT) showing changes in line with dementia. A frequently used cognitive test is the ACE III with a score of 82/100 or lower normally indicating dementia. I’ve attached a copy of the ACE III for you to have a look at, just for reference really. https://neurovascularmedicine.com/ace.pdf

what would a label do for you all ?

This is a good question, and I don't know the answer.

Got Power of Attorney sorted many years ago, luckily.

His behaviour is not really random or illogical (yet). Just forgets things. Needs to be told numerous times & have it all written down.

Mum is much stronger, and does lots for him, but she must have an idea. I don't know whether to bring it up.

I'm just popping on to check that you have both a finance AND a health PoA. They are 2 separate powers and the latter is absolutely vital when trying to establish how (un)well a parent might be.

My DM was always desperate to please the memory clinic and doctors, so would give them the answers she thought they would be pleased to hear, rather than reality.

You mention your DF "reads" the paper. I can forgive him for losing track of who might be the PM if he is "self selecting" articles to read in the paper. Could you try asking him "were you just reading about XYZ, Dad?"

I noticed that my DM (who developed quite severe dementia during lockdown and sadly died) stopped reading books and switched to quiz/talk shows in preference to drama once her memory started to fade. A few years before, the radio would be on, but she wouldn't be following it.

UTI's (prob less common with men, but could it be a prostate problem) along with struggling to sleep could make her increasingly depressed.

Your DF might be secretly terrified.

Sending a handhold

I can only say when the dreaded penny finally dropped for me. A Dsis had said she’d noticed signs when they were on holiday, but having been through it all already with FiL, I couldn’t face it again.

One day when I was visiting, however, my DM phoned her bank about something. She’d always been very clued up about money, used to check her (modest) shareholdings every Saturday in the paper.

But on this occasion, she could not remember, literally the instant she’d put the phone down, what they’d said. I don’t mind admitting that my heart sank.

Perhaps more tellingly, whereas (as a habitual worrier) she’d normally have been in a terrible tizz about such a thing, within seconds she had forgotten the incident completely.

With normally clean and tidy FiL, the first signs were failing to shave, wearing grubby clothes, and doing daft things like putting tins of soup in the freezer.

Oh no, the anti “label” brigade have moved on from being against diagnosing autism to being against diagnosing dementia?

Surely having a diagnosis vs not having a diagnosis makes a tremendous difference to the way one approaches an elderly person’s level of care and support in their final years?

Of course I accept that, for someone in their late 80s, some degree of forgetfulness and cognitive decline is “normal”. But there is a big difference between everyday forgetfulness and the degenerative aspect of dementia.

Oh no, the anti “label” brigade have moved on from being against diagnosing autism to being against diagnosing dementia? That seems a very strange conclusion to take from this conversation.

Surely having a diagnosis vs not having a diagnosis makes a tremendous difference to the way one approaches an elderly person’s level of care and support in their final years? Not in my experience, no. The care and support system is needs based not diagnosis based.

But there is a big difference between everyday forgetfulness and the degenerative aspect of dementia. Pretty well everything is degenerative in old age, not just dementia.

Having a diagnosis is beneficial because

• the medication for dementia only works in the early stages - so if you leave it until later then medication is not an option
• family can respond to the person appropriately - respect the skills they do have, work round the ones they don’t, communicate effectively (eg “look here’s John” rather than “ooh look who’s here?”)
• you can look ahead and plan for what’s coming next; the person can make their wishes for their future healthcare clear in advance; plan for future care needs; have the conversation about driving and so forth
• you can access what support is available and research financial options so you’re a step ahead.

Getting a diagnosis can take time. Yes it can be heartbreaking, but at least you know what’s what.

That seems a very strange conclusion to take from this conversation.

You think? How else are we supposed to interpret a question like “what would a label do for you all?”

The word label is always used to disparage a potential diagnosis; make it sound pointless and wholly unnecessary. It also always comes from a place of denial.

Although medication didn't work for my mum at all, I'd say having a formal diagnosis was really important. For my dad, it took the need to try and make her better out - before he would get cross as she just wasn't trying hard enough or being silly. And later when she had no filter at all, he could just tell people she had dementia (and at one point he had some little cards apologising for her behaviour and explaining) and they were much more understanding.
And though support should be needs based, not diagnosis, my colleague is struggling with social services for her mum who has post brain tumour cognitive impairment which may also be dementia around her mums placement as she doesn't have a diagnosis

Make the home safe ie. trip hazards, use of gas cooker etc.

It’s difficult and there are pros and cons.
One one hand a diagnosis can be very useful. In particular, it opens up specialist support and potential medication. Some services will only take referrals from people with a diagnosis. Also NHS continuing healthcare funding https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/ does require diagnosis/“rationalisation” of NHS support before they release any money.

On the other hand the diagnostic process itself can be distressing. The cognitive testing required is quite strenuous and designed to highlight everything that the person with dementia has been trying to hide/ignore/overcome which is upsetting in itself. Undertaking a CT scan, which is normally also needed, can also be quite tricky, especially if the person with dementia doesn’t see the need for it or think that anything is wrong.

Personally, I would say suggest that a diagnosis is usually a good idea, especially if the dementia is in the early stages. A diagnosis allows things like Power of Attorney to be put in place in advance of when they’re actually needed and will allow access to other resources in the future.

Apart from putting all one's things in order, I don't know why people need a diagnosis. My sister got a diagnosis of Alzheimers a few months ago and then two days ago was told that she doesn't have it. Fortunately she didn't do something desperate when she thought she had it

Yes that sounds like dementia I'd push for an official diagnosis or if you can afford it, a private MRI scan will tell you immediately if it's dementia ( I think)

Regarding repeating questions, what do you say when he repeats a question! Do you just keep answering on? Another thing to try could be "dad, we just had a conversation about what's for lunch didn't we? Do you remember? Do you remember what we said? Have a little think and see if you can remember."

Sometimes repeating things is just a bad habit

Agree with a diagnosis and getting the medication - it's definitely slowed progress for my step-mother.

Alzheimer's UK recommend that you never push the "do you remember?" questions as it can be really distressing to the person who can't remember.

Also, memory loss is not the same as cognitive decline, although it's obviously part of it. For example, the last time my dad visited us before he went into a home, as we have a fitted kitchen and all the doors look the same, he couldn't find the fridge. So we stuck a post it note on the door saying "fridge". He could read the note but couldn't work out that it meant that it was the fridge in there.

I think a diagnosis is useful, it opens up access to support like occupational therapy.

Having a diagnosis saves a lot of time when you are talking to new health care professionals/social workers. "Mum has alzheimer's" cuts out a lot of the explanations/discussions and we can cut straight to the current issues.

Thank you all for your messages, I am reading them all and taking it in.

He can still answer several questions on University Challenge, and does not do odd things like putting stuff away in the wrong place.

But he does forget what food he has already bought; there are about 10 packets of his favourite biscuits in the cupboard because he buys some every time he goes to the supermarket and never eats them.

I'd really encourage a GP visit. You could always email or send a letter in advance of the appointment with your concerns. And be prepared to push for them to listen...

This was rare so please don't panic, but when my Dad started to show signs of forgetfulness and a little confusion, having worked in elderly care for years I just assumed cognitive decline. Sadly for my lovely Dad, it turned out that he had liver cancer and the forgetfulness etc was actually hepatic encephalopathy. Poor Dad's brain was flooded with toxins that his liver couldn't process as it was failing. It took nearly 4 months to get this diagnosis because we couldn't get the GP past firstly long covid (he'd had it months before) and then likely dementia.

You absolutely need to know what you're dealing with - head in the sand approach never works well for anyone especially the person you love

My mum had a rare form of dementia, which started off like that. No loss of memory or skills (tasks) at first, but a loss of words, telling the time, using “thing” for household objects etc.
Diagnosis made a huge difference as social services were then involved, as were the specialists. It’s not just a label. And there is a huge difference in age related decline and dementia.

The problem the op has though is that she doesn't know if he does have dementia.

Dementia will show up in an MRI scan, and sometimes even in blood.