• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Carers' quality of life and well-being

ntxdo1

Registered User
Jun 24, 2015
10
Nottingham, UK
Researchers at the University of Nottingham are looking for people aged 60 years old or over, who are currently providing care for a family member with dementia, to take part in a study about quality of life and well-being.

All you will be asked to do is to complete a questionnaire that will be posted to your address in a pre-paid envelope and post it back to the research team. Any information given is anonymous and confidential.

For more information, or if you wish to take part in the study, please contact Deborah Oliveira on 07463 491670 (deborah.oliveira@nottingham.ac.uk)
Thank you very much for your help! :)
 

ntxdo1

Registered User
Jun 24, 2015
10
Nottingham, UK
Dear KEVINI and LYN T, thank you very much for your messages regarding my study.
I completely understand your point and I would like to clarify that the focus of this research is to investigate the aspects related to the quality of life and well-being of "older adults" providing care for a family member with dementia, as these can be quite different from carers in younger age groups. Unfortunately we had to establish an age limit for that and we decided to consider 60 years old as the minimum age for participants. I apologize if this may be a little frustrating, but the objective is really to look more in depth and holistically in to carers' experiences, in this case according to each age group, rather than considering everyone as having the same needs. Hopefully by doing this we will be able to provide better and more focused support for carers in the future. I hope this helped to clarify your questions. Thank you very much for raising this issue. Deborah.
 

ntxdo1

Registered User
Jun 24, 2015
10
Nottingham, UK
Dear Kevini,

I appreciate that you will turn 60 in only three months' time, but due to Ethics issues in carrying out research in the UK, I am not allowed to include you in the study right now, but I am happy to send you the questionnaire as soon as you are 60 :)
Please, send me a private message if you wish to receive more information about the study or to provide me your address information if you wish to take part, so then I will be able to post it to you in the near future. Thank you very much for considering to help in my study, I really appreciate that. Best wishes, Deborah.
 

LYN T

Registered User
Aug 30, 2012
6,960
Brixham Devon
Dear KEVINI and LYN T, thank you very much for your messages regarding my study.
I completely understand your point and I would like to clarify that the focus of this research is to investigate the aspects related to the quality of life and well-being of "older adults" providing care for a family member with dementia, as these can be quite different from carers in younger age groups. Unfortunately we had to establish an age limit for that and we decided to consider 60 years old as the minimum age for participants. I apologize if this may be a little frustrating, but the objective is really to look more in depth and holistically in to carers' experiences, in this case according to each age group, rather than considering everyone as having the same needs. Hopefully by doing this we will be able to provide better and more focused support for carers in the future. I hope this helped to clarify your questions. Thank you very much for raising this issue. Deborah.
I understand what you are saying but I disagree as I found the quality of life and 'well being' problems were the same all round-it appeared to me it was the presentation of the person with Dementia not the carer's age that counted. As far as providing better and more focused support for the carer's in the future -well I was told that as I was 'young' to be looking after my Husband there were no services for a 55 year old (my age when my Husband went into care) even a bathing service to help my (then) 67 year old doubly incontinent Husband who was aggressively against personal care.

I didn't ask for much-but got nothing. It appears this study will provide nothing for relatively young carers either. Perhaps one day a study will be carried out which doesn't always assume that Dementia is an old persons disease. My OH was 58/59 when he started to become unwell and 68 when he died. If you read this Forum you will soon come to the realisation that there are many people of a younger age who are affected.

I just think this study is being approached from the wrong angle.
 
Last edited:

Sue J

Registered User
Dec 9, 2009
8,035
I have to agree with Lyn T. I am in my early 50s with EO symptoms for 6 years now. I have cared professionally but also in a personal capacity for most of my life, I still do the latter, the impact of which, without adequate support, I believe has contributed to my early onset symptoms.

Whilst any research is welcome, the needs of all carers with such a high level of need should be looked at. It would be interesting to know what percentage of carers on TP fit the criteria and what don't. Maybe a second study could be considered to make comparisons?
 

ntxdo1

Registered User
Jun 24, 2015
10
Nottingham, UK
I completely understand your situation and I am sorry to hear about such a negative experience that you had as a carer for your husband in the past, when you did not receive the support you needed and should have received. I have had the opportunity to meet many carers throughout my nursing career and during the groundwork for this study who are/were struggling with their caring role despite their age. It is known that dementia is not a disease of older people and this project does not mean to disregard the burden and struggles of the younger carers, which I believe are as relevant as older carers’ experiences. What I tried to express here was that the aspects of quality of life and well-being may be different depending on age group, but are by no means more important than relatively young carers. This project aims to look at the aged group from a more focused perspective in order to understand whether carers’ ageing process has any relation to quality of life and well-being perceptions. It is also important to clarify that this is a doctoral and non-funded research project in which I need to focus my topic of study and to be objective to be able to achieve my PhD degree. I do have an interest about investigating younger carers' quality of life and well-being on completion of my PhD - this would be another project and would hopefully allow some comparisons.

I hope I have clarified all the issues that you both raised. I more than happy to send you the participant information sheet which contains more details about this research. Thank you very much for your contribution. Best wishes, Deborah.
 

Sue J

Registered User
Dec 9, 2009
8,035
You have clarified things more Deborah, thank you and it is good that any research is done as it is where change begins and any research that affects the lives of anyone on TP or dealing with this disease can't come soon enough, as I'm sure you may well appreciate.

Wish you well with your PhD and any subsequent research too.
Sue:)
 

Lindy50

Registered User
Dec 11, 2013
5,239
Cotswolds
Just to say that while I absolutely understand the points made above, as I am over 60 :)() I will be contacting you, Deborah. My wellbeing very closely mirrors mum's and at the moment it's not a good place to be

Lindy
 

ntxdo1

Registered User
Jun 24, 2015
10
Nottingham, UK
Dear Lindy50,

Thank you very much for your interest in to help with my study and I am happy to send you more information about it, as well as your questionnaire to your address. Could you please provide me your e-mail address so then I can contact you? Or, if you prefer, you can contact me by:

Email: (deborah.oliveira@nottingham.ac.uk)
Telephone: 07463491670

Thank you very much! I look forward to hearing from you.

Best wishes,
Deborah.
 

Sammyjo1

Registered User
Jul 8, 2014
194
Just to say that I contacted Deborah today (I got a notification via Join Dementia Research on Facebook that she was looking for people to help). She is still looking for carers over 60 for her research.

I said I'd post something on this thread to see if other people might be interested. She can be contacted by phone or by email as in the previous message
 

ntxdo1

Registered User
Jun 24, 2015
10
Nottingham, UK
Just to say that I contacted Deborah today (I got a notification via Join Dementia Research on Facebook that she was looking for people to help). She is still looking for carers over 60 for her research.

I said I'd post something on this thread to see if other people might be interested. She can be contacted by phone or by email as in the previous message
Thank you very much, Sammyjo1. I look forward to receiving your questionnaire. Best wishes, Deborah.
 

jaymor

Volunteer Moderator
Jul 14, 2006
12,916
England
I looked after my husband at home for 7 years. I was 60 when I became a carer. From year 4 he had very challenging behaviour that involved the police three times. Had I been in my 80's I know I could not have coped. I am now just months off 70 and again I am sure that I would have failed my husband had this disease come into our lives now and not 10 years earlier.
 

ntxdo1

Registered User
Jun 24, 2015
10
Nottingham, UK
I looked after my husband at home for 7 years. I was 60 when I became a carer. From year 4 he had very challenging behaviour that involved the police three times. Had I been in my 80's I know I could not have coped. I am now just months off 70 and again I am sure that I would have failed my husband had this disease come into our lives now and not 10 years earlier.
Hi Jay, thank you so much for sharing your experience here. I understand what you mean and I have met many carers in advanced ages struggling to cope with their own health issues and having to face a full-time caring role at the same time. Hopefully this research will be able to identify some of these issues and help to improve older carers' quality of life in the future.

Best wishes,
Deborah.
 

Lindy50

Registered User
Dec 11, 2013
5,239
Cotswolds
Hi Deborah

I have received your questionnaire. It looks good :) I'll complete and return it, hopefully over the weekend.

Jaymor, I know what you mean as well. The arthritis clinic have just put me on the priority waiting list for a knee replacement - and all I can think of is, if I go for it, how it will affect mum .....

I'm sure there will be plenty of things to think about as I complete the questionnaire xx
 

ntxdo1

Registered User
Jun 24, 2015
10
Nottingham, UK
Hi Deborah

I have received your questionnaire. It looks good :) I'll complete and return it, hopefully over the weekend.

Jaymor, I know what you mean as well. The arthritis clinic have just put me on the priority waiting list for a knee replacement - and all I can think of is, if I go for it, how it will affect mum .....

I'm sure there will be plenty of things to think about as I complete the questionnaire xx
Hi Lindy50,

I am pleased to know that you liked it :)
I look forward to receiving your views.

Best wishes,
Deborah Oliveira.