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Preparing for the end of life: what is the impact of carer grief before death and what resources may help carers cope better?
The course of dementia over many years and the gradual loss of the relationship and uncertain life expectancy make it difficult for families and carers. Sometimes it can be hard to maintain a good relationship with a relative or friend whilst feeling you are losing the person you once knew. These losses during care have been called grief before the death and 47-71% of family members experience this. Another 20% experience complicated or long term grief after the death of the person with dementia. This three-year study aims to examine the relationship between family and friend carers’ feelings of grief before the death of a person with dementia and how well carers are prepared for that death. Findings will be used to develop a resource to assist carers prepare for end of life and cope with grief before the death. This study will be conducted over three work streams. Work stream 1 will identify the extent of grief before death that carers experience and whether those who are more prepared for end of life have lower levels of grief. Work stream 2 involves a survey of UK Memory Clinics, Admiral Nurses and care homes to examine current practice in informing carers about end of life in dementia and what supports for grief are offered. Workstream 1 and 2 will inform the development of a practical resource to support and inform carers about dementia progression and grief supports in Workstream 3.
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