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Research study on the experience of health support for dementia in critical situations

elicsander

New member
Oct 8, 2018
4
Hello Everyone

I am doing research in dementia and interested in the quality of care you receive for symptoms and to help you with critical situations. For example, you may feel disoriented and you may need someone to help you, this is exactly what we are interested in: what is your experience of receiving the help?

You can answer at any time you want any or all of the questions below and you do not need to specify what questions you are answering to, you only need to reply to the post if you like the idea. You can take all the time you want as far as the post is online.

Questions:

  1. Where do you find support when you need it most? How often do you receive this support? (e.g. friends, family, your GP etc)
  2. Where would you go for support in a crisis?
  3. What type of support do you find most helpful? What type of support do you find least helpful?
  4. Do you have a care plan in place? If you do, how involved do you feel in the planning and reviewing process?

I have included two links, one link to some background information about the study and about your involvement in the study, and one link to a consent form which is a document informing you about your involvement and it is for us to know that as soon as you reply to the post you agree to take part in the study. However feel free to stop taking part at any time you want.

NB This study is specifically for people with a diagnosis of dementia.
 

Attachments

Beate

Registered User
May 21, 2014
12,008
London
According to the write-up, it's for people with dementia over 50. They won't find many here but their consent form really concerns me. Apparently once you post here you have automatically agreed to take part, understand your rights regarding this research and confirm that you are over 50. Saying that to someone with dementia is absurd and reveals ignorance of the condition.

For the record, I don't have dementia, I am not over 50, and you have no permission to use what I'm saying in any context.
 

Jessbow

Registered User
Mar 1, 2013
3,041
West Hertfordshire
It strikes me as really quite peculiar. Cant get my head round it ( and although I am over 50 I am NOT diagnosed with dementia.)

The bit that is perplexing me is- a person with dementia rarely recognises crisis point, and its normally managed for them.

maybe I am right , maybe not.but If a person with dementia can recognise and deal with a crisis, it isn't really a major crisis,because their dementia isn't so far advanced that they cannot deal with it..

Maybe I dont understand 'crisis'
 

elicsander

New member
Oct 8, 2018
4
According to the write-up, it's for people with dementia over 50. They won't find many here but their consent form really concerns me. Apparently once you post here you have automatically agreed to take part, understand your rights regarding this research and confirm that you are over 50. Saying that to someone with dementia is absurd and reveals ignorance of the condition.

For the record, I don't have dementia, I am not over 50, and you have no permission to use what I'm saying in any context.
Hello Beate

I am sorry you find the post a bit concerning and i am here to support with any queries you may have. In reply to your first concern, if you reply to the post you automatically take part in the study but this does not give me the permission to use any of the posts you would write, especially if you do not want that what you say is used in research. In any cases, even when blog users decides that are willing for the research team to use quotations, I will still need to rephrase anything that is posted in here so that no one will ever know who said what.

Vbw
elicsander
 

elicsander

New member
Oct 8, 2018
4
It strikes me as really quite peculiar. Cant get my head round it ( and although I am over 50 I am NOT diagnosed with dementia.)

The bit that is perplexing me is- a person with dementia rarely recognises crisis point, and its normally managed for them.

maybe I am right , maybe not.but If a person with dementia can recognise and deal with a crisis, it isn't really a major crisis,because their dementia isn't so far advanced that they cannot deal with it..

Maybe I dont understand 'crisis'
Hello Jessbow

You are perfectly right. Some people with dementia may need support for their crisis. What I have discovered in my research so far (by talking to people with dementia and their carers) is that everyone has a different idea of what a crisis can be. This means that for someone a crisis may be so difficult to manage that the support of the carer is crucial, for some others instead, a crisis may be physical in nature like falling and not being able to stand up, however the person is still able to recognize that such experience is a crisis. In this research project we are interested in any experience of crisis from the hardest one to manage to those who require less intense support from others. Thank you for your post as I think it will open up more on the discussion.
 

Emy

New member
May 24, 2019
1
Hello Jessbow

You are perfectly right. Some people with dementia may need support for their crisis. What I have discovered in my research so far (by talking to people with dementia and their carers) is that everyone has a different idea of what a crisis can be. This means that for someone a crisis may be so difficult to manage that the support of the carer is crucial, for some others instead, a crisis may be physical in nature like falling and not being able to stand up, however the person is still able to recognize that such experience is a crisis. In this research project we are interested in any experience of crisis from the hardest one to manage to those who require less intense support from others. Thank you for your post as I think it will open up more on the discussion.
Hello Everyone

I am doing research in dementia and interested in the quality of care you receive for symptoms and to help you with critical situations. For example, you may feel disoriented and you may need someone to help you, this is exactly what we are interested in: what is your experience of receiving the help?

You can answer at any time you want any or all of the questions below and you do not need to specify what questions you are answering to, you only need to reply to the post if you like the idea. You can take all the time you want as far as the post is online.

Questions:

  1. Where do you find support when you need it most? How often do you receive this support? (e.g. friends, family, your GP etc)
  2. Where would you go for support in a crisis?
  3. What type of support do you find most helpful? What type of support do you find least helpful?
  4. Do you have a care plan in place? If you do, how involved do you feel in the planning and reviewing process?

I have included two links, one link to some background information about the study and about your involvement in the study, and one link to a consent form which is a document informing you about your involvement and it is for us to know that as soon as you reply to the post you agree to take part in the study. However feel free to stop taking part at any time you want.

NB This study is specifically for people with a diagnosis of dementia.
Thanks first of all for coming to Rushcliffe and talk about your study. Very interesting to hear and also to know that this forum exists. True not many people use these online forums but it is just because we do not know they exist and not because we have dementia.
When I need help I call my daughter and her husband who live next door. I do not really call doctors as it is my daughter's business to do so. I feel that we all need more information about dealing with crisis really. I usually feel depressed and do not want to see anyone and I can stay days without eating anything, really. When this is the case my daughter calls a team I believe and they come and help but do they ask me what I want? Not sure, perhaps they talk more with my daughter but they are all nice people do not get me wrong. I think they can sense that I prefer they talk to her rather than me. There are times when I think she knows what I need more than I do. I do not know if I have a plan I take medicines and have someone helping with the kitchen, she calls then team but for me are maid really.

Thanks for helping with the forum
 

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