My dad said he would rather not know if its dementia

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hi
My dad starting with confusion, memory loss but he and my mum are saying they would rather not know if its dementia. I feel the same i think.
We have all had experience of other relatives having dementia and know what may happen long term.

Did anyone else feel like this and what are the benefits of getting a diagnosis in the early stages? I feel like it will be unnecessarily upsetting and depressing and there's no cure or help anyway?

I can only speak from wider family experience, but a family member was diagnosed and has since had access to support groups, group activity targeted at slowing symptoms/supporting memory, targeted advice and wider family support.

Some of the things to try and postpone dementia are worth doing anyway - decent amount of exercise, take up new challenges, learn new things, keep up the social life, make sure you get hearing aids if you need them. So at the very least encourage them to do that.

I didn't want to know; and then I did want to know because it affected things like whether I would send back the regular bowel cancer screening thing, get a flu jab etc.

I agree with pps. It's understandable that the person affected doesn't want to know, but sooner or later they'll have to.
My Mum was driving, working part time and travelling alone on adventure style holidays when she started.
The thing is, at early stages, the support out there is very very helpful. It isn't all doom and gloom. My Mum "joined" the memory clinic group that she was put into contact with and just considered it another part of her (extensive) social circle. She was put into medication to slow things down (apparently can give you up to a couple of years)
It doesn't just go from forgetting you've put the kettle on and letting your tea go cold to being in a home.
And the worst part is the bit you're in now imo.

Just be aware that confusion and memory problems, aggression etc can be a symptom of urine infections in older men. Don't just put things down to dementia, have each episode investigated. It could be a sign that antibiotics are needed.

There are different types of dementia that evolve differently, the benefit of knowing is that you can prepare for how it might affect that person.

My mum had vascular dementia and we were told that the average life expectancy, from diagnosis was around 4 years. And they were right. Rather than her getting gradually worse, she'd have periods where she'd get no worse, and then a big drops, where her condition got a lot worse very quickly, but we knew this as we'd been as prepared as we could be. Plus we'd been made aware of her symptoms and what she could be experiencing, which I'd never have known about, such as hallucinations etc. Plus there were also things we could do to help, such as listening to music from her younger years.

It's a horrid, horrid thing I'm sorry this is happening to you and your family

From a medical perspective as others have mentioned it could be good to know to gain access to medications that slow the advance and access to other services that could offer an improved quality of life.

From a practical perspective, you do all need to think about legal decision making e.g. access to bank accounts, end of life care decisions, power of attorney, wills etc. All of those things need to be sorted in advance of deterioration because it's a nightmare trying to navigate once someone's 'good' days are rare.

I'm truly sorry this might be happening in your family, but at the very least please consider getting the legal side of things sorted now with power of attorney and authorised access to all accounts. We had to deal with this for MIL after FIL developed dementia and it added so much stress to what was already a difficult situation.

Totally support @JustCallMeGriffin comments - some medications can really help slow the decline. Also some financial benefits- a reduction in council tax and eligibility for carers allowance (probably not called that, but it's not means tested and helpful even if not needed right now)

IME, there are gentle declines interrupted by cliff-edges of significant incidents, so something that seems completely manageable one day will not be the next, and that level of capability will never be recovered, so getting legal and financial matters in order is key, so hard once capacity is gone

And beware of the slow creep of interventions needed, they can accumulate until everyone's life is not their own because of a series of minor adjustments, especially if there is a reluctance to seek outside help. This is for you as well as your other parent/ siblings

Finally, a diagnosis whilst unwelcome is not a sentence of doom and gloom, we have had many joyful moments along the way (first with DSF and now with DM). It's a reminder to enjoy life in the moment

I'd disagree with a diagnosis being "upsetting and depressing" and also "there's no cure or help anyway" and this is brought to you by the daughter who has listened to a diagnosis this morning. It would give you access to services you didn't realise existed and for some forms of dementia there are drugs that can slow the progress. TImes have changed and it's not the condition that I remember my granny having, they can now tell you what the issue is with a brain scan.

I am sorry that this is on the horizon for you but I really don't think that knowing will make things any worse. It might allow them to find solutions that improve the quality of their life and if it is something for which the drug regime works they could be having a couple of years of a decent life.

Denial of dementia and it's consequences tore my family apart. The strain of being required to pretend it was just 'a touch of forgetfulness' and the insistence on never contradicting or refusing an elderly parent anything he desired eventually ended in a violent rage, a physical attack and finally a diagnosis, but the damage was done. Even now my family are determined to believe my dad 'wouldn't hurt a fly' despite him having the occasional uncontrollable rage.

If you don't face it, you can't manage the risks it presents, to the person with dementia, but to their loved ones too. I don't see my dad any more, because my family won't acknowledge and manage the potential risk his Alzheimer's presents. I have children, and I can't expose them to an uncontrolled situation.
Everyone has lost out.

It's better to face things and come to terms with them. Denial is an immense strain.

The problem with denial is that it can’t go on forever. Eventually something unpleasant will happen, such as a sudden violent rage, or (in my mother’s case) wandering the streets or (in my friend’s dad’s case) shoplifting something and getting stopped by a security guard. Then, it all becomes critical and rushed, causing stress to all concerned.

Sorry you’re going through this OP.

There will come a time with you and your parents need support. Having a diagnosis will actually be more helpful. Although more upsetting naturally at the time.

One of my parents has dementia. Since diagnosis we were provided with an adult care social worker, support in other medical areas when needed, assessments from adult social care for parent and family carers. Eligibility to attend dementia clubs for parent but also for the rest of us as well to attend support groups as we have to take more responsibility for parent's needs. Support from a carers charity. You or you mum may be eligible for carers allowance and your father attendance allowance.

If your dad's memory is not too bad I would seek to update Wills and make sure Lasting Power of Attorney; Health and Welfare/ Property and financial affairs are done now before it is too late. Make sure your mum does this too.

When my mum was diagnosed with vascular dementia the doctor told her. She very quickly forgot.
I always remember his words Mum has been diagnosed with dementia but it's you that's going to live with it at the time I didn't understand what he meant. Sadly it didn't take long to realise.

Seconding everyone who has said that it can be helpful to know the specific type of dementia and gain access to appropriate support.

Similar to ParkheadParadise here. My DM was told by her GP that she had Alz. but had forgotten by the time she got home maybe 15 minutes later. If we tried to remind her she just got cross, we were making it up, so we soon stopped.

The thing to remember is that typically, people with dementia can’t remember at any given point that they can’t remember anything. IMO it can be quite hard to get your head around this. So failing to believe a diagnosis is not at all uncommon. The person will typically still believe that they can manage to do this or that perfectly well - haven’t they always? - and can’t remember e.g. that 10 minutes ago they had forgotten how to make a cup of tea.

It's not fair on the person who will be caring for them to just 'not know'. It could prevent the carer from getting access to support they need for looking after someone with dementia.