Dementia- what had you wished you’d known?

Things I wish I had known are (1) that there was no point in arguing with my mum, when in early stages she told me she still did all the cooking, cleaning etc

And (2) that having gone through dementia diagnosis with my mum, to realise that it presents differently in different people - so just because my dad was able to cope with doing things my mum couldn't , didn't mean that his other odd symptoms weren't dementia.

Looking back, I wish I had been kinder to my mum and understood how frightened she must have been instead of getting so frustrated with her .

Sort out Power of Attorney if you haven't and you still can - both Finance and Health and Welfare ones.

Buy things to help and make things easier - Rosebud clock, Pivotell tablet dispenser, Alexa Show, Whiteboard with calendar on, dementia puzzles etc

Any trips/treats that your parent might want to do. We left this too late and now my DDad is in a care home I often think that I wish we had done xyz

If appropriate get a carer in a couple of times a week before it's necessary, so they get used to having someone else around/helping.

Consider applying for Attendance Allowance, Council tax reduction, blue badge, access schemes for cinema/theatre etc

Look for local carers support groups. Contact your GP and ask them to register you as a carer on your NHS record (this provided earlier access to covid vaccines for example).

That balance can become affected. That nighttime waking is common and then nobody else sleeps well because they're worried about not hearing the person getting up. With the nighttime waking you can fit an alarm next to the bed that will silently alert the carer/spouse that the person with dementia has got out of bed. So they cam sleep easily the rest of the time.

That its easier to just agree with them. They went with Betty next door to the moon and they had lunch? Sure, makes total sense. Frank Sinatra came in to visit them this morning? Oh really! How is he doing these days?

I was lucky that my relative didn’t have the aggression or forgetting our faces that so often comes with dementia. She was just living in her own world. Sometimes I wished I could live in it with her. Things seemed easier there.

Just keep reminding yourself anything unkind that's said is the disease talking not them

This is so true

That self care is important, its very easy to get caught up looking after and advocating for the person with dementia and forget to take time out for yourself

My mum is, at times, unkind in her confusion. Goes straight for the jugular in terms of saying things she "knows" will hurt the most. Except she doesn't know....she has dementia. But then I doubt myself and wonder if that's how she felt or what she thought all along and she was only being polite? I wish I'd known to develop a thicker skin, sooner.

Don't sweat the small stuff. No need to correct them if they say or do something wrong that's irrelevant - you just cause them more confusion and stress. Far easier to smile and agree.

Keep things the same, they need routine. We used to take our mother away with us for days out, short breaks, even 1/2 week holidays when she first started with dementia and she managed fine, just us having to keep reminding her where we were, what we were doing etc. A couple of months ago, we took her for a 3 night short break just a couple of hours away from home and she was terrible - she kept asking where she was, was it our new house, even getting her house keys out of her handbag as we were parking up outside it, prowling around half the night looking for the loo (her room was ensuite!), refusing to eat, refusing to wash/bath/shower. It was a nightmare. Never again. Literally the moment she walked through her own front door, she was back to normal again, completely forgot about going away, couldn't remember anything about it, thought we'd just been shopping (which she's used to doing every week!) and wondered where her shopping bags were. Such a shame, we thought we were doing the right thing but she's got to the stage where she can't cope with anything different.

Look at belightcare on Instagram she’s a speach and language therapist specialising in dementi and covers lots of topics and has lots of advice and tips on supporting people with dementia.
on a personal level I agree with the pp on how therapeutic music can be. Also just go along with their thoughts acknowledge and redirect/distract this is where music really helped my granny. Find your local dementia groups and get them attending thy may hate it the first week but the socialisation is such a positive for their mental health. Get them involved in meaningful activities as much as possible they use a lot of Montessori based activities to promote/maintain independence.
medication can be very effective
problems with continence can often be down to constipation make sure they are drinking plenty and going regularly

How powerful music can be

^ calm

and we also got her out and about as much in the daytime as possible. Apparently that helps to regulate the mood.

Be aware of sundowning. It really is a thing. And you can mitigate against a lot of it. My mum would go batty after 4pm. We had lights on early and encouraged her to sit in the same place every meal time - and kept things as cal as possible.

I'm sorry OP. I'd say keep a close eye on the cleaning- my Grandmothers housekeeping went very downhill quite fast and it was a godsend arranging a cleaning service for them. She didn't seem to recognise anymore when things weren't safe to eat.
Try not to take any aggression personally I think the confusion can make the sufferer seem mean sometimes if they are scared. If they are having harmless misunderstandings we didn't use to correct them as this seemed to upset them.
If a conversation is going badly try talking about the past. My Grandmother had great memory for her early life even when her current one was all messed up in her head and talking about things from when she was young calmed her.