your help needed to educate people about dementia and memory problems

[Rachel James]

Hello everyone,

My name is Rachel and I work for Alzheimer's Society. We are writing a training course for people in the health and social care sector.

The course is about the how people who have dementia make decisions in their life and the Mental capacity Act.

I find that using what people say about their own experience is the best way to change attitudes.

I would like hear from:
- people who have dementia/memory problems
- carers
The questions are about making decisions (your name will not be disclosed in the training).

If you prefer, please ring me on 020 7423 3624 or 07715 993894.

People who have dementia/memory problems - please answer questions 1, 2 and 3.

Carers - please answer questions 3, 4 and 5

questions for people who have dementia/memory problems:
1) How does it feel when people make decisions you feel you can make for yourself?

2) Have you ever made a decision that people didn't understand or agree with? (e.g. driving)
What happened?
How did you feel?

3) The Mental Capacity Act is a new law which means that anyone supporting someone with dementia must try to help that person make decisions by themselves.
How do you feel about this law?
Do you think it is a good thing?


questions for carers
The Mental Capacity Act is a new UK law which was supported by Alzheimer's Society.

This law means people caring for or supporting someone with dementia must try to help that person make decisions by themselves. This could be any decision, including what to wear or what to eat.

The aim is to ensure people retain as much independence and dignity as possible.

4) Do you have any experience of people 'taking over' or making decisions you thought someone you care for could make for themselves?

5) What affect did this have on them?

6) How did it make you feel?

The law also ensures that any decisions made on someone's behalf involve people who care about them.

For more information about the MCA, please see factsheet 460: http://www.alzheimers.org.uk/factsheet/460

I look forward to hearing fom you. Thank you!! Please give me a ring if you would like to find out more about the course.

 

[TinaT]

Hi Rachael,

4) Do you have any experience of people 'taking over' or making decisions you thought someone you care for could make for themselves?

As my husband is not capable of understanding or making decisions, it is usually me who experiences the 'talking over'. Whilst on an 'assessment ward', although I am his sole carer, my opinions, experiences, and input into his care have been quite ignored or disreguarded.

5) What affect did this have on them?

This had an effect on me. I was afraid of making comments as these were often deleiberately misconstued and often resulted in diminished rights. ie., I asked that my husband's lunchtime medication be reinstated. The next day I was told that my visits 'off ward' with him had been restricted from 3 afternoons each week, to one. I was not consulted, I was not givwen an opportunity to ask why this decision had been made.


6) How did it make you feel?

My confidence was undermined, I was very often frustrated and upset, and felt as though our life together as a couple was over.


I think this survey would have been better if we could send our answers directly to you via an e mail address.

xxTinaT

 

[EmJ]

Hi Rachel

There are so many training courses where the most important people ie those who are living with dementia seem to be omitted. It is very good that people with dementia and carers will be able to contribute to the course.

I agree with having an email address Tina. It may allow people to write more freely.

Take care,

EmJ

 

[Skye]

4) Do you have any experience of people 'taking over' or making decisions you thought someone you care for could make for themselves?

The GP decided unilaterally not to treat my husband when he developed MRSA. My husband has no language, so could not have expressed an opinion, but is happy, and would not have agreed to this. I was not consulted, though I have welfare PoA.

5) What affect did this have on them?

The infection would have spread to other organs, and ultimately would almost certainly have been fatal.

6) How did it make you feel?

Very upset for two days, that I was going to lose my husband sooner than necessary, and that I hadn't been consulted, or even directly informed.

Then angry! I wrote a letter to the practice manager, and the decision was overturned. But I should not have been put through that agony.

 

[Margarita]

4) Do you have any experience of people 'taking over' or making decisions you thought someone you care for could make for themselves?

I suppose I could count myself lucky that people in authority doctors do listen to me when in come to my mother care needs, as they feel she cannot make her own decisions, but when if come to social services all of a sudden they saying my mother can make a decision for her care, they base that on new mental capacity test , because she still knows she living in her home , she knows her surrounding of her house so now my mother mentally capable of knowing what in her best interest to know where to live .

Even thought she cannot be left alone in her own home, but my mother has no awearness of that she think she OK, when ask about her care she says ask my daughter, but they can't ask me can they ? when they saying she can now make her own decisions we are lock in a chatch 22 .

I am sorry , but all this Metal capacity act is for is to save goverment money so not to put people in care homes even if its for they own safty , unless you can pay for it yourself .

The course is about the how people who have dementia make decisions in their life and the Mental capacity Act.

I feel when it come to dementia , they should be a different way to do an assesment on they mental capacity, when in advance stage

 

[hurell321]

4). I think It is yes the nhs said a home or with family not back to his own home. But they were called out to him early one day when he was ill.

5) The long term affects are that he is unhappy in the resulting place off residents (which is with his middle son and me.)

6)I have to admit I feel safer with him living here and he was unable to care for himself. But he was to ill to make his mind up and it would have been nice if they could have waited till he was well anoth.

I do feel that we are removed from his care when ever the cpn comes around. This is not helping him.

Hope it helps.

 

[lesmisralbles]

I think, therfore I am

Ron think's.
Please take these comment's in the way they are intended.
I call my Ron's social worker a "Chocolate Teapot".
There are people who make a lot of smoke, but they have not lit the fire.
I know we have to start somewhere.
Barb

 

[Grannie G]

Hello Rachel

4) Do you have any experience of people 'taking over' or making decisions you thought someone you care for could make for themselves?

This has not yet happend to us.

It makes me wonder if you will get a truly representative picture from this survey. Will the majority who respond be the ones who have had bad experiences?

 

[Brucie]

Will the majority who respond be the ones who have had bad experiences?

very good comment.

I suspect that for most requests for such information, it will mostly be those who were adversely affected who will respond. Mankind rarely congratulates on the good things, only steps in when things are awry.

But perhaps that is fine, because it is the bad experiences that determine how systems need to change universally. There will always be bad experiences - we are all human! - and even those who act to ensure there are good experiences can learn from occasions when things went badly because of the actions of someone else.

I was at Jan's home yesterday, a lovely sunny day. I took Jan into the garden area - I noticed it is derelict, whereas in previous years it was well kept and used by residents.

I realised the dereliction was probably because of the occasion when the home took Jan and other residents out there, and Jan was badly sunburned. I complained, and now, because they don't have staff to make 1-to-1 care on all residents to ensure they are not burned, they simply don't take them out there.

It is a loss, but better than damaging them.

Balancing risk.

 

[Skye]

4)

It makes me wonder if you will get a truly representative picture from this survey. Will the majority who respond be the ones who have had bad experiences?

Sylvia, I don't think Rachel's conducting a survey, so much as asking for examples of what can go wrong, or right. (Correct me if I'm wrong, Rachel!)

I did much the same thing a while ago, (it seems ages!) when I asked members for examples of what can go wrong when a person with dementia is admitted to a general hospital.

I got lots of bad examples, and a few good reports.

I've used my report a lot in training, anonymously of course, and it's now part of the Dementia Champions course at the local uni. (Thanks, TP)

The bad examples open peoples eyes to things they have perhaps not thought of, and I always end with a few good reports!

It's good because it's not just me moaning about John's treatment (which was good). It's impersonal, so no-one gets offended.