End-of-Life Care and Dementia

[emscub]

Dear Talking Point Members,

I am currently studying for the MSc in Social Work at Bristol University and am carrying out a study about end-of-life care and dementia. By carrying out the study, I hope to gain a good understanding of how the end-of-life period is experienced by both carers and by those with dementia.

The title of this study is: Experiences of End-of-Life Care and Dementia: An internet analysis.

The experiences of carers, such as yourself, are important because they shed light on a sensitive and often hidden aspect of life. I am posting here because I hope that some of you might be willing to share your experiences of this time with me. These can be from individuals with current or previous experiences and can be from those who cared for individuals in any setting during this time (at home, in a residential setting, at hospital etc.). Because of the sensitive nature of this subject, I have agreed with the Alzheimer's Society that the private message format would be the most appropriate way for carers to make contact.

Please be assured that any information you send to me will be read only by myself and that anything I read within the messages will be treated confidentially and will not be reproduced in a way which allows you to be identified. Also, I will not use any direct quotations from your messages without gaining your prior written consent and the names of all people who participate in the study will be made anonymous. I will also be willing to share the results of this study with all those who share an interest.

If you have any concerns about this project at any time you may contact my supervisor at the University (please send me a private message for contact details) or any of the moderators of the Talking Point website. Also please do not hesitate to contact me via private message or reply to this message with any queries you may have.

Kind regards,

Emma

 

[Brucie]

Hi Emma

thanks for posting this. I believe that Talking Point members are really keen to help move on all aspects of dementia care, and associated topics by helping - where this is a realistic thing for them to contribute to.

Besides formal research as made by the pharmaceutical companies and the healthcare industry generally, I believe it is very important to support research in other areas, such as part of degree courses and so on.

I hope that members who have experience in your area of interest will help you in your project.

It is important that this research is made only with information provided by people who have responded to your request for help, and this the private messaging system seems ideal for that.

The Alzheimer's Society has a fact sheet about volunteering for research. While it is primarily targeted at those who have dementia, it also has things that are relevant for others - such as carers. http://www.alzheimers.org.uk/After_diagnosis/Helping_with_research/info_volresearch.htm

I hope that you are successful in your project and will be able to give us an idea of what you have learned, afterwards.

Best wishes
Bruce

 

[BeckyJan]

I am not too sure I can help but there are many points near to my heart.

My husband has Alz butI do not think we are at the final stages yet. BUT I do think about this, knowing it is inevitable.

If I can help in any way pleased let me know.

Beckyjan

 

[emscub]

Beckyjan,

I have sent you a private message about this, as the Alzheimer's Society have asked me to communicate with anyone wishing to participate in the study in this way.

Kind regards,

Emma