Dementia proof homes.

With my mum I viewed entering her world a bit like I viewed imaginary play with my children when they were young. We had such lovely tea parties where teddies visited for tea and cake and I got told off for some imaginary misdemeanour.

By entering into my mum's world in a similar way I think we were both able to enjoy the time we spent together. The hardest times were the sudden moments of clarity when she had brief but clear recall that my brother had died in tragic circumstances; out of the blue she'd be sad and say what a tragedy it was, him dying so young.

I'm actually a bit concerned I might be going the same way. I don't remember half of what I used to, from plots in TV dramas to the nitty gritty detail of conversations with friends.

I used to remember exactly what was said and by whom and when and could repeat it back verbatim to my DH when I got home. Now I'm aware I come away with a general impression rather than the forensic detail I used to remember; more the general gist and how it made me feel rather than the exact 'he said she said'.

I can't see the point of going to the GP for memory tests yet. I would probably pass at the moment, so I'm not sure anything would be gained. I am aware of a mental decline though, and being aware of it is a bit strange. I was always very sharp, though not as ultra sharp as my mother. She was ferociously independent and super-intelligent. My grandma had dementia too, and in her seventies no longer recognised my mother.

We're just coming to the end of a year of hard work renovating our house and I'm on a mission to get organised so I know where things are. I'm hoping there's enough time (years!) for me to become familiar with where everything lives before I deteriorate too much.

I've seen it happen when people "lie" to people with dementia. They might not know what day or year it is but they still know when theyre being lied to. And it can cause all kinds of problems.

Everyond is an individual though so there will be exceptions

The problem with entering a fantasy world with them is that denentia isnt a fixed state. Reality is already interwoven with the where the dementia takes them so you can end up further distressing them if you pretend to be in the reality you THINK they are in IYKWIM. Its isnt a fixed state. You cant know "where" they are and how much of reality is insterwoven in it. So joining them half way has much less potential to go wrong

David I couldn't agree more. Oliver James' book is brilliant. I found it so useful when I was caring for my aunt and uncle, both with dementia.

I have since lent it to several people and no longer know where it is (perhaps someone forgot to return it

You live and learn with dementia.
When we were very new to it, with my FiL, we blithely thought there must be an easy answer to things, like the same questions he was asking incessantly.

We actually made a laminated A4 sheet, so he could keep it with him, with very clear answers in nice big print, to the questions he kept asking (I once counted the same one 35 times in one hour).

Did that laminated sheet make the slightest difference?
It did not.

I was a lot more clued up when it came to my mother, several years later. She became obsessed with the idea that her sister had 'stolen' their mother's house.

Any efforts at logic/reason, lasted only a day or two. By that stage, even a signed and sealed assurance from the Lord Chancellor wouldn't have convinced her - he'd have been 'in league with' her sister.

I just started saying e.g., 'Dear me, that's awful - I had no idea. I'll get on to the police/a solicitor first thing tomorrow.'
Worked a treat. (Until the next time, maybe 10 mins later - rinse and repeat.)
Luckily she never saw that sister, so there were no personal attacks to deal with, thank goodness.

I can recommend strongly the book "Contented Dementia" by Oliver James. It advocates "not correcting" and has lots of other good advice.

In my experience I'd say that " meeting them halfway" often defuses problems. Forget " dragging them back to reality" and don't pretend to live in their world. Just go half way.

' I'm worried that Dad isn't home from work' ( Dad is long gone.....and is it her Dad or your Dad ?')

' Dad is a good man, isn't he'.

She happily talks about him and forgets the worry.

'I want to go home NOW'

' the bus will be along soon. It stops here' pointing to strategically-placed garden seat. Mum sits and waits. Some will sit for hours.

They are not all the same, but I always found " going half way" was the way to go.

Good post Witzend. I totally agree and found that I would just say anything to keep my mother relaxed and happy.

With the benefit of hindsight I think one of the early signs of dementia is not being able to find your way home. I have noticed this in three people. It happened to my mother and she said that a very kind man had put her on the right bus. We both laughed it off at the time.

On another occasion I came across a neighbour who was talking to a lady. I said hello and the lady told me that my neighbour had forgotten where she lives so I took her home and made sure her husband knew.

Later my best friend was in the early stages of dementia and came to see me but she was on pins and just wanted to get home. She didn't come to my house again but was always pleased to see me when I went to hers. She didn't forget me.

Spot on about not arguing or correcting - when they're going to forget whatever you say anyway, it gets you nowhere and just causes agitation or crossness.

Every time any country from Afghanistan to Zimbabwe was mentioned on TV, my mother would say she'd been there. I very soon stopped saying, 'Er, I don't think so.'

Instead I'd say, 'Oh, yes - was it nice?'

The answer was invariably, 'I can't remember.' ?

As for not 'lying' to someone with dementia, after a great deal of experience I no longer felt the slightest bit bad about it. I'd say whatever would keep my Fil or my mother happy for the moment. What did it matter, when they were going to forget so quickly anyway? Keeping them relatively contented, or at least not fretting, anxious or agitated, was IMO far more important.

Well said, monica.

Good post MOnica.

I think the whole talk of 'lying or fanasising' in situations like this is wrong. Who is to say that our reality is any better than that of those who have dementia considering the amount of self deception we all indulge in?

If giving someone with dementia much needed reassurance about a worry, in words and a context that they understand and accords with their reality then I will do it.

Reality for someone who has no memory is cruel, they grieve and become distressed, their illness is already causing pain. I prefer the approach of reassurance with a simple explanation they can understand and accept, even if it is not the actual facts.

Thats not what I meant.

I mean that you do not have to lie/role play in order to have a meaningful exchange.

Just dont shut them down.

E.g. "is that Mary over there?" (There's noone there)

You dont have to say "oo yes thats Mary "hi Mary" (wave) "

Just dont say "there is nobody there!"

Instead you can say something like "I don't know a Mary actually, can you tell me about Mary".

Not lying or fantasising, but also not correcting/scolding/shutting down IYKWIM and still engaging in their thought process while still staying in the present

Like notanan, when I was caring for an aunt and uncle, both with dementia, my rule was that it is easier for us to adjust to living in their world than for them to try and live in ours.

I remember my uncle was constantly worrying about a (supposed) meeting with his bank manager, after weeks of trying to reassure him without success, I turned round to him one day and said 'I have spoken to the manager, he knows you cannot visit at present, but the appointment can be arranged for another time.' 'Oh' replied my uncle, 'that is alright then.' and never mentioned the subject again.

@Kittylester thanks for the suggestion!

Can you link it?

You do not need to lie/enter their world to go with their train of thought. You can meet them half way, e.g.

"The boss will be back soon, better get back to work"
"Did you have a nice boss?"
"Oh I suppose he is okay, bit strict"
"How long did you work for him?:

Instead of "you're not at work youre at home!!" (Mean and distressing)

Or role playing/fantasy replies, which can just further confuse those that slip in and out of lucidness

It's great advice doodle. The suggestion is for the carer to enter their world rather than trying to drag them back to ours!

Re the phone: You could try asking your local Alzheimers Society to refer you to the adaptive technology dept of your council or try to contact them yoursekf via Social Servuces.. There is also a company called Unforgettable which has a good website

Thanks for this @Doodle. MiL has dementia and will have a look in the Times. Does anyone have any tips for a dementia friendly phone for recieving incoming calls? She is deaf too...

One of the topics mentioned was to not constantly correct the person with dementia but to go with their thought processes. That small change meant such a difference when coping with my brother. My SIL was constantly correcting him because she felt it was helping him to stay focused. However it caused him upset and confusion. When my SIL just went with the flow things were much better.