Identity and Alzheimer's Disease

[Jude Allen]

Hello,
I am currently working on my PhD in literary metamorphosis at Bathspa University, Bath, UK.
I am coming across a lot of issues with identity which I need to define for the purposes of my thesis. I have been considering what would happen to the idea of an enduring identity in the case of mental illness and the question of alzheimer's disease has been raised by my supervisor. May I ask if it is the belief that one's identity remains the same even with advanced alzheimer's disease? If not, at what point would it be considered that one's identity had been lost? I only have had one experience of alzeimer's disease and despite the sufferer having no apparent knowledge of her surroundings or family or anythin greally, she still remembered her father's silver topped walking cane right up until her death.
If you can help me, or point me in the right direction to find such imformation, I would be truly greatful.
Many thanks
Jude Allen

 

[RCT]

Identity

Hi Jude,

My interest in dementia is more professional, so some of the carers may have a different take on this. However, one of the writers I have found particularly useful in dementia is Tom Kitwood. In his book 'dementia reconsidered' he writes about the psychological needs of people with dementia and identity is seen as one of five needs which must be met in order to maintain well-being. The task of those working with a person with dementia is helping them to hold on to their personal narrative as their memory declines. Without this sense of a personal narrative then we can easily lose sight of the person and just see 'dementia'.

Tom Kitwood would argue that it is the point at which people stop seeing the person beneath the dementia, that the person's identity can be lost, but that this does not have to be a permanent loss. The individual still exists, it's just that we are failing to see them.

If you are interested in this idea I would definately read his book. Hope that helps.

Best wishes
Ruth

 

[Brucie]

Hello Jude

I suspect you would get many different types of reply to your questions.

My view is as follows:

Dementia is not a mental illness as such. It is a random physical deterioration of the brain.

Imagine you have a bright new car, radio, lights, heating, windows.

One day something dramatic happens - there is no fuel available anywhere, and there never will be, ever again.

Everything in the car depends on the engine working, and for that, fuel is needed.

For fuel, read brain.

So, here is the car, and if we want to use it, we need to adapt our expectations of it. Perhaps we have a horse, so we can pull the car along. for heating, we might just wrap up a lot. Instead of lights, we might use candles. Perhaps we have a portable radio, so we use that. If the window breaks, we use cling film.

... anything to make the car work in some way at all, because it is all we have.

Does the car still have its identity?

Yes, from outside it may look the same as ever, it simply can't power itself any more. From the outside it may look normal to the owner [relative], but to others it may look really strange - candles, people in blankets, cling film, portable radio, etc.

The car has its identity, but others perception of the car's identity may be lost.

It takes much love, grit, strength to see the identity, but it is only if we view the car's identity in terms of its ease of use to us, that we feel the identity is lost.

The car is still the car.

There are so many other allegories we might use, but at least in my opinion, the identity is still there. It may simply be harder for us to recognise it. That is our problem, not theirs.

... but then, my wife Jan is special to me, so I would say all that.

 

[daughter]

Hi Jude,

What is identity? Is it personality, behaviour, or is it the ability to remember things? Is it all these things, or something else?

If it is personality, I believe (through watching my Dad), that you could never say that the identity is completely lost. Dad's personality has definitely changed in lots of ways (he can be aggressive and moody, where he used to be proud and quiet) but sometimes it still shines through. A word, a certain way he smiles, his confident yet polite demeanour. He often says "Thank you" quite clearly - is this just an automated reflex, or part of his personality?

If identity is the ability to remember things, I think that a lot of Dad's memories of recent decades are lost but I don't know if all have gone. I wonder if some of them are stored in his brain but are only recollected but a chance stimulus. A bit like a library with very few books left, and those left are higgledy piggledy, with no indexing. Then suddenly one of the books is discovered again because someone, by chance or design, happened to look on the right shelf.

I'd guess it has to be a mixture of these things. Dad mostly shuffles along now, but just recently he did a little skipping dance (difficult to describe!) as he went towards the door when Mum was playing some of the old songs. It was distinctively his dance, did he remember it as part of his identity and isn't this a learned behaviour that we imagined he'd lost?

Unless Dad is lain in bed and completely still, I suspect he will continue to surprise us with little glimpses of "him" until the end - just like your story about the woman remembering her father's cane.

It's ok, I'm not looking for any answers, they are irrelevant to me with regard to Dad now anyway. I just find this all very interesting, but I've probably gone off track and am waffling. Good luck with your PhD.

 

[Lila13]

Yes, when my mother suddenly started referring to another patient as "that fat woman" (within the other patient's hearing), it certainly raised questions about which was her "real self", the adult I'd known before who would NEVER have said such a thing, or the naughty toddler she seemed to have turned into.

I think both were her real selves, perhaps identity includes multiple selves, most of which we are never aware of, and I found it quite interesting to watch and listen to the way she seemed, during those few months, to be exploring alternative selves, perhaps long-suppressed, almost deliberately.

Lila

 

[Kayla]

Identity and Vascular Dementia

My Mum has Vascular Dementia and although confused, can still hold a sensible conversation. When she was very muddled after her hip replacement operation, it seemed to me as if someone had dropped a box of CD's containing memories on the floor and she picked up a memory CD and just remembered things in a completely random way, wth no sequence or logic.
Now, she knows that she gets confused and muddled, and often seems to be in a completely different time zone, particularly the Second World War. One day she really thought she was only a young girl, who had just started work and she was waiting to hear about her older brother, who was killed in the war. She even spoke as if she was a teenager, not a mature adult and couldn't understand why people weren't telling her anything. It was three years before they heard he'd died in a Japanese POW camp.
One day she said that she felt as if she was looking down on her life from above and could enter any stage of it. She said that she started as a little girl and ended up as an old lady. I think there is an element of deliberately entering into dreaming about the past, which is very real to her. She is still the same person, but I have been privileged to see aspects of her developing personality, when she was young.
I think I probably agree with Lila, that the person with dementia is revealing various aspects of their personality, including some traits, which they would normally hide or inhibit. My Mum is basically the same as before, but older and frailer and less able to communicate.
Kayla