Care for people with Dementia given by Relatives at the End of life: The CADRE Study
Around two thirds of people with dementia live in the community with the majority of their care provided by friends or family. Previous evidence suggests that family carers have a variety of support needs which differ throughout the different stages of dementia. These support needs are often not met, including practical as well as emotional support.
We caught up with Dr Nathan Davies to find out more about the CADRE study, and how it aims to support the carers of people with dementia.
What are the main aims of the study?
The Internet has great potential to support carers by allowing them to access help from their own home at any time. We aim to understand the support needs of family carers of people with dementia at the end of life; their views on the use of the internet; and subsequently develop an online website to provide support for family carers at the end of life.
What does it involve for a participant?
This study will have two phases, the first phase will explore family carers’ needs and views on the use of the internet. Participants will be asked to take part in an interview which should take around one hour. This will explore their caring role and what they find particularly challenging. We will ask about the current support they receive and the support they would like to receive. We will also ask about how they use the internet and what for. However, we will also discuss with those who do not use the internet what prevents them from using the internet and discuss its perceived value.
In the second phase, we will present to groups of family carers a website we have developed and ask their views on the content and design of the website. The groups will last for up to one hour.
How long is the study for?
Each session will last around one hour and participants can take part either in just one of the phases or both phases.
What do you hope the outcomes of the study will be?
We will create a sample website that is helpful to those caring for an individual with dementia at the end of life, which could be further developed in future research. We will provide not only important information to inform the development of the website but will also develop a new approach to support carers of people with dementia.
Where is the study based?
The study is based at University College London.
Who can take part?
We are looking for family or friends over the age of 65 who are caring for someone with dementia towards the end of life or those who have previously cared for someone with dementia within the past three years.
You can see if you are eligible for this study, as well as others around the nation, by logging into your Join Dementia Research account.
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