Lead Investigator: Dr Kirsten Moore
Institution: University College London
Grant type: Senior Fellowship
Duration: 36 months
Scientific Title: Preparing for the end of life: what is the impact of carer grief before death and what resources may help carers cope better?
Why did we fund this project?
Comments from members of our Research Network:
'I would have benefitted greatly from the results of this study. Changes as a result of findings will benefit many people.'
'This proposed project is set in the context of a wide and substantial existing body of focussed work, and is impressively embedded in real life needs.'
'A sound proposal for a study in a neglected area ... Well planned and well structured. By helping carers the person with dementia will be helped too.'
What do we already know?
The progressive nature of dementia can lead to profound changes in the relationship between the person affected and their carers and families. Some carers struggle to maintain a good relationship with the affected person due to the condition changing a person's behaviour and ability to carry out daily tasks. The loss of this relationship can lead to complex feelings of grief that occur both before and after the person with dementia passes away.
Previous research by Dr Moore and colleagues has found that there are very little resources to help carers of someone affected by dementia to cope with feelings of grief. There is also evidence that carers who know what expect in the advanced stages of dementia are more prepared for the end the person's life and may be more able to cope with feelings of grief.
What does this project involve?
Dr Moore will interview a hundred family carers to understand in more depth the extent to which they experience feelings of grief during their caring duties. She will also find out whether being prepared for the end of life helps carers to cope better with grief.
The study will also involve examining how services such as memory clinics and care homes talk to carers about the end of life in dementia and what support they offer to help with grief.
The project will then take these results and create a resource that will help to prepare carers for the end of life and aid them in grief support.
How will this benefit people with dementia?
Grief can be a complex emotion for carers of people affected by dementia and a lack of support will make it more difficult to cope with. Currently there is very little research into understanding of carer grief before or after the person with dementia passes away. This study will fill an important gap in supporting the wellbeing of carers. The resource created will help health professionals and carers to understand how to best prepare for end of life. It will also provide vital information and support to help carers through the grieving process.