Contented Dementia? Don't make me laugh

[Brucie]

What would you define as the differences between the severe stage and the last stage?

Hi, julientuareg

Never forget I'm a carer, and only familiar with my Jan's dementia, so nothing I write may replicate elsewhere!

While the progression seems to be a continuum, many people find it helpful to be able to define the major differences as time goes by. There are different models of this - 3 stages, 5 stages [that I use], 7 stages, etc.

The 5 stage model I use is based on a chart from the University of Western Sydney, Australia. The chart appears no longer to be available from links given elsewhere on TP as the Oz site is now password protected.

Broadly, the difference between severe and last stage are summarised as:

Severe stage

Sometimes forgets spouse's name
Unable to solve problems
Later will forget how to use a toilet and become incontinent
Will need full assistance to bathe; may fear a bath
Will start to have trouble walking; risk of falls
May start to have trouble eating and swallowing
Delusions may continue
May be anxious, aggressive, depressed
May pace up and down constantly
Disturbed sleep may continue

Last stage

Unable to talk, may scream
Only recognises spouse and other carers occasionally
Incontinent
Needs full assistance to eat and drink
Unable to walk, stays in a chair or bed
Resistive to care, may hit or bite
Problems swallowing
Increasing number of infections
Increasingly frail
Loses weight in spite of diet

 

[Brucie]

With early onset, is there any trigger event which could explain the start of the illness, even years ago?

I cannot believe that dementia in younger people is random.

There was no trigger event that I could ever identify in Jan, just a gradual loss of faculty. Jan was a fainter in her teens, and the main signs we had of her dementia were her faints [or fits] at first.

When we were first going out together in 1966, she suddenly went blind in one eye, though this cleared eventually after a stay at a Hospital in Paddington and there were no further problems in that respect.

It may be that she was always prone to vascular problems, leading to her mixed alzheimer's and Vascular dementias.

 

[Brucie]

Jan's words are poignant aren't they. I remember about 5 months ago we went to a garden centre and bought some wall art for the garden. I bought a peacock and Pete bought a butterfly. 'For you to remember me by in case I have to fly away and leave you'. Huge dip since then.

What emotive words. Keep them safe, they are beautiful, and impossibly valuable!

Thanks for passing this on; so touching.

 

[LYN T]

Interesting timeline.

I would say mum's dementia (she is now 96) was triggered by a very traumatic event when she was in her early 60s (being seriously over questioned when a witness in court, she had a breakdown and the barrister just kept going until the judge stopped it), in hindsight the symptoms were there.

With early onset, is there any trigger event which could explain the start of the illness, even years ago?

I cannot believe that dementia in younger people is random.

Hi Nevergiveup

Sorry to read about your Mum. That seemed to be a very traumatic moment in her life. I was speaking to Pete's SW and he said that when Pete had his severe breakdown 6 1/2 years ago (suicidal/psychotic) it could have been the start of AD. But what came first -the depression or the AD? Mix in his sister's suicide (when she was expecting her second child,(Pete was 16 at the time and never really got over it-but who would?) his mother early onset AD, and his Dad'd dementia (late 70's) it was a powder keg waiting to explode.Other members of his family have experienced depression.It could also be completely random. I'd love to have the answers.

 

[rjm]

The 5 stage model I use is based on a chart from the University of Western Sydney, Australia. The chart appears no longer to be available from links given elsewhere on TP as the Oz site is now password protected.

I contacted one of the chart's authors and was informed "The web-site is being recreated and the work will be back on the web-site soon."

 

[stressed51]

Hi Kirwante and all my path seems so similar to yours Kirwante, with OH still ok ish up until last christmas, then everything else you mention is exactly as mine has been, OH about to go in permanent CH from monday. Has been in respite for last few weeks. I also thought the relief from the caring would make me feel better but how i miss him when i get the (ever diminishing) glimpses of his previous self. Seem to cry even more these days than when I was in the midst of it all, and feel dreadful when I have to leave him and he holds my hand so tightly and is so scared of me leaving him. He was never frightened of anything.People seem to think I should be feeling better now, but i just feel bereft. My heart goes out to all you fellow carers x

 

[Brucie]

I contacted one of the chart's authors and was informed "The web-site is being recreated and the work will be back on the web-site soon."

That's helpful, thanks for taking the time.

These things do make a difference; anything where we can relate out observations and experiences.

 

[NeverGiveUp]

What started me speculating about trauma and dementia was that a number of people I knew had strokes, the common denominator was that they all had a seriously traumatic event in earlier life eg PoW in Far East, another had a terrible things happen around him in WW2 (European Jewish), another was sexually assaulted as a child. The more people I heard had a stroke , the more i asked about trauma, I would say 90% had something significant.

 

[copsham]

What an emotional thread!

Hi to everyone who has posted. I find it so helpful reading everyones experience because it keeps me in touch with my real feelings. We have to be brave, tough and strong to deal with dementia in a close relative and reading the posts here allows me to shed tears and feel it all before picking myself up again.

Looking at the timescales I am sort of lucky that my mother went from looking after herself adequately with slight memory problems in June 2012, serious infections in July-Sept 2012, to very severe vascular dementia by October 2012. She has almost no short or long term memory. BUT she is contented and I am so grateful for that. She is happy to lie and look at the wall, interupted by the offer of food or tea or other of life's necessities. She relaxes like she is sun bathing in her bed. "What a lovely view" she said of the ring road that passes the front of her house!

I finally found a nursing home that I feel happy with. In trying to discuss it with my mother it was clear that she did not realise that she is "at home" now. She will be admitted soon but it is nothing like the experience of most people on this thread. As she has become contented and her carer does not do anything to stress her, she and I are very lucky - well sort of!!

 

[Kirwante]

Trauma

Thinking about the trauma aspect and perhaps genetics, my wife's maternal aunt lost her son to cancer in his forties and the family always reckoned that was the trigger to her dementia. I can't say that my wife, Kate, had any traumatic experience, except having to live with me (!) but certainly post her retirement from a good job in the NHS in 2009 she showed little interest in doing much. Perhaps the trigger was in the genes and the retirement was more damaging than I thought.
I am certainly in agreement that the extent of early onset seems to be more prevalent and it's effects appear to be much faster. I have no research or statistics to back this up but the healthcare people in the memory clinic and the CH say much the same.

 

[NeverGiveUp]

I wonder if those who have early onset relatives or have it themselves can pin down the type of character/lifestyle and if there is a similarity anywhere.

It could be anything like heavy coffee drinker, cleans the house all the time using the latest chemicals or heavily into gardening an uses weed killer a lot. Overweight? Fast food? Meat eater or veggie?

I simply cannot believe that this is co-incidence.

 

[julientuareg]

My partner never suffered any trauma, he is not overweight, played a lot of sport, did smoke but gave up 30 years before any signs of AD, does not drink coffee, never used chemicals in his work (accounting) and wasnt into gardening. Very little fast food, ate a good range of fruit and veg. I'm afraid if they are your criteria he doesn't fit at all. Dad is still alive (almost 90) and has no AD, Mum died early 80's but no AD, one maternal aunt did have AD.

 

[NeverGiveUp]

I don't have any set criteria, just odd thoughts as to why. I just feel that there has to be some sort of common denominator when there isn't an obvious family history. I think what I have in the back of my mind is CJD and where it came from.