Introduction People with dementia can become confused and anxious in new environments, hospitals can be hazardous places, and transitions between settings at the end-of-life can be harmful. These reasons, together with the knowledge that most people would rather die at home, mean that there is a policy shift towards supporting people with dementia die at home.
Aim(s) and method(s) The aim was to explore family carers' views of quality end-of-life-care for people with dementia. 46 in-depth interviews were carried out with family carers who were bereaved or currently caring for someone with dementia. Interviews were analysed using thematic and narrative analysis methods.
Results Preliminary findings show families have many concerns caring for a relative in the community. The organisation of services and systems is difficult to understand and they are often left to navigate the systems alone, and become the bearer of responsibility. Some felt that having a cancer diagnosis as well as dementia increased the level of specialist services available, in particular Macmillan nurses. Families needed to trust care assistants as they may be left alone with the person with dementia and may provide intimate personal care. Finally, an individual point of contact such as a GP, social worker or admiral nurse was crucial, for information, reassurance and support, but this was often lacking.
Conclusion(s) Home care is possible but families need a lot of support. Not all palliative care services are easily accessible for people with dementia and those services available are difficult to find without guidance.
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