Do you think that people with Dementia should be involved with decision making ?

[wendyd]

I gave up my job and looked after my Partner who had Lewy body Dementia till he finally died at home. It was a very difficult process.
I have also just come back from Spain where my long term friend has had Parkinson's and now has Dementia, everything is done to her and she does not have a say in anything although she knows exactly what is going on.
I went on a course when my Partner was ill that advocated not letting Dementia sufferers make choices advocated by the book (Contented Dementia).
I disagree with this and I felt my Partner had more fullfillment in life by making choices till the very end.
Although he sometimes could not find the right words we found other ways of getting him to decide on holidays, what to wear, what to eat etc.
He was also totally involved in all meetings pertaining to him.
I was just wondering what people out there felt as to allowing Dementia sufferers make choices or not

 

[Sue J]

I want and need choices, I as yet still have no diagnosis getting one is not easy and it's not one I really want but I know what's what even if I appear not to at some times. If people, authorities want to take away choices I know this will make me worse.

Everyone is different though and I think carers and proffessionals should listen carefully to friends and close relatives (of the person's choice) in making decisions of what is best for someone), if someone is able to make a choice they should be allowed to.

 

[Izzy]

I try my best to make sure my husband has choices. I'll carry on trying to find ways to make this possible.

 

[stanleypj]

I think you're quite right Wendy and you were obviously able to follow the Alzheimer's Society advice:

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=84

Obviously there will be some circumstances where it's no longer possible but this advice from the factsheet is key:

Make sure that, whenever possible, you inform and consult the person about matters that concern them. Give them every opportunity to make their own choices.

Hard to disagree with, I would have thought. It's always useful to check the factsheets. The advice is very sound.

 

[sistermillicent]

Basically I think everyone should be allowed to make choices. However I have found when mum was still capable of making some kind of a choice that it helped enormously to limit the choices available to something reasonably sensible, by which I mean that I could present her with a choice of two cardigans rather than a wardrobe full. It reduced the confusion a bit.
Sometimes I must say that both cardigans would be thrown at me and a dressing gown put on instead, but I never really thought that mattered much.
If you are talking about major choices, well, to have allowed mum to choose to give hundreds of pounds to the RSPCA every month would have been where we drew the line, or to let her drive when she chose not to wear her glasses and couldn't see.....

Even now when she is barely able to communicate we always ask if she would like a cup of tea. She always says no and we always give her a cup and she always drinks it.

 

[malc]

i let my wife make choices and treat her normally,at the end of the day she's ill not an idiot!!

 

[Sue J]

i let my wife make choices and treat her normally,at the end of the day she's ill not an idiot!!

my sentiments entirely Malc

 

[malomm]

i let my wife make choices and treat her normally,at the end of the day she's ill not an idiot!!

No well I'm sorry, but I have to disagree. My wife is ill too with this awful disease. Unfortunately therefore she sometimes makes idiotic choices, and you can't always pretend that all's well in the kingdom. Many choices have to be made by the carer, and not by the patient.
keep smiling,
malomm

 

[LYN T]

I really would love to be able to let my Husband make choices; for so many years now that hasn't been possible. He has receptive and expressive dysphasia and is unable to understand or express language.

 

[Sue J]

No well I'm sorry, but I have to disagree. My wife is ill too with this awful disease. Unfortunately therefore she sometimes makes idiotic choices, and you can't always pretend that all's well in the kingdom. Many choices have to be made by the carer, and not by the patient.
keep smiling,
malomm

I don't really see that as a disagreement malomm, I would hope that those close to me would stop me making 'idiotic' choices, but it's the right to choose.

 

[Nanak]

Once my Mum was diagnosed my Stepfather made choices for her. Even when she could make choices herself. It was sad to see.
I feel if the person concerned is able to make a choice regardless of how they convey that then it is a little bit of control they still have.

Kim

 

[malc]

malomm,that's up to you if you want to disagree,your entitled to your opinion,at the end of the day i'm a strong believer in civil liberty and lets face it another way of looking at it is i aint got alzheimer's and i've made loads of idiotic choices in my life.

 

[Rathbone]

Always informed choices, without doubt, for everyone. I will always fight to reserve that right for my OH. X

 

[Feline]

I gave up my job and looked after my Partner who had Lewy body Dementia till he finally died at home. It was a very difficult process.
I have also just come back from Spain where my long term friend has had Parkinson's and now has Dementia, everything is done to her and she does not have a say in anything although she knows exactly what is going on.
I went on a course when my Partner was ill that advocated not letting Dementia sufferers make choices advocated by the book (Contented Dementia).
I disagree with this and I felt my Partner had more fullfillment in life by making choices till the very end.
Although he sometimes could not find the right words we found other ways of getting him to decide on holidays, what to wear, what to eat etc.
He was also totally involved in all meetings pertaining to him.
I was just wondering what people out there felt as to allowing Dementia sufferers make choices or not

Hi wendyd

I agree to including Dementia sufferers with making choices as long as they are able,however Dementia presents itself in so many different ways, it becomes a very individual thing and as the disease progresses some are not able to make a choice for themselves.

 

[jawuk]

My husband has lost the understanding to make any choices. He can't choose whether or not he would like a drink and is happier and calmer if I just present him with my decision, whether it's having a drink or buying a car.

To choose means having awareness of options and understanding them, of being able to make and to express a choice. Once that is gone then being asked to make a choice is not only pointless but imho unkind.

 

[stanleypj]

Once that is gone then being asked to make a choice is not only pointless but imho unkind.

I don't see anyone arguing with that.

Likewise it would, imho, be worse than unkind to make decisions for someone without at the very least trying to get them involved.

 

[Jo1958]

On a CQC visit to hubby's then EMI unit last year the question was put to him 'do you get a choice at mealtimes?' He answered by nodding 'yes' so the chappy ticked his box on the sheet in front of him and carried on with the questions. I said 'wait a minute please' .....

Hubby eventually said, quite clearly but it took a while 'take it or leave it'.

Choice is so very important and so is free speak but with dementia it takes a long time and sometimes that time isn't available, or given, or respected and we can all get it wrong while trying to do the right thing.

As usual there are no easy answers, all we can do is our best.
With slow wishes from Jo

 

[stanleypj]

There's another very helpful and relevant AS statement here:

http://alzheimers.org.uk/site/scripts/documents_info.php?documentID=1087

 

[garnuft]

Deleted post, to fed-up to get involved.

 

[lin1]

I believe that just because a person has Dementia doesn't mean that they are not able to make choices or decisions .
And that for as long as possible they should not only be allowed to but encouraged to make them.
Of course their may/can come the time when We carers may have to limit choices and make decisions . In my experience gentle guiding for important things came before taking over.