Seminars in Ageing: Pre-death grief and preparation for end of life in family carers of people living with dementia

Pre-death grief and preparation for end of life in family carers of people living with dementia

Presenter: Dr Kirsten Moore, NARI

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About the presentation

Kirsten will provide an overview of findings from her Alzheimer’s Society (UK) senior fellowship exploring the relationship between pre-death grief in carers of people living with dementia and preparation for end of life. Pre-death grief in these carers can be distinguished from anticipatory grief. The losses experienced by carers as dementia progresses include loss of relationship and companionship, loss of social network and changes to self-identity and meaning in life. However, these losses may not be recognised by carers or those around them and therefore carers may not feel supported or entitled to grieve. Findings from structured interviews with 150 carers and additional qualitative interviews with a sub-sample of 16 carers will be presented. Data including grief, preparation for end of life, depression, anxiety and coping strategies will be presented along with help seeking through formal and informal supports. The presentation will also present how this work was used to co-design an animation to raise awareness of pre-death grief among family carers. Feasibility work under way, using an online intervention, will also be highlighted.

Animation can be accessed here

About the presenter

Dr Kirsten Moore is a social gerontologist and senior research fellow in the Melbourne Ageing Research Collaboration at NARI. She returned to NARI in 2020 after six years working at the Marie Curie Palliative Care Research Department at UCL in London where she focused on dementia and palliative care. In the UK she completed an Alzheimer’s Society senior fellowship on grief and preparation for end of life in family carers of people with dementia. She previously examined the Extended Aged Care at Home Dementia packages for her PhD and has also undertaken health and aged care evaluations, falls prevention research and implementation studies.

Kirsten has been involved in developing resources for implementing evidence including an animation about carer grief, a decision aid for family carers during COVID-19 and environmental audit tools to enable more suitable hospital and residential aged care environments for older people and people living with dementia.

Further information: [email protected]

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