Experiences of end of life amongst family carers of people with advanced dementia: longitudinal cohort study with mixed methods

Kirsten J Moore, Sarah Davis, Anna Gola, Jane Harrington, Nuriye Kupeli, Victoria Vickerstaff, Michael King, Gerard Leavey, Irwin Nazareth, Louise Jones, Elizabeth L. Sampson

    Research output: Contribution to journalArticlepeer-review

    54 Citations (Scopus)

    Abstract

    Background
    Many studies have examined the mental health of carers of people with dementia. Few have examined their experiences in the advanced stages of disease and into bereavement. We aimed to understand the experiences of carers during advanced dementia exploring the links between mental health and experiences of end of life care.

    Methods
    Mixed methods longitudinal cohort study. Thirty-five family carers of people with advanced dementia (6 at home, 29 in care homes) were recruited and assessed monthly for up to nine months or until the person with dementia died, then at two and seven months into bereavement. Assessments included: Hospital Anxiety and Depression Scale, Short Form 12 health–related quality of life, 22-item Zarit Burden Interview, Brief Coping Orientation to Problems Experienced, Inventory of Complicated Grief and Satisfaction with Care at End of Life in Dementia. Subsequently, 12 carers (34%) were bereaved and 12 undertook a qualitative interview two months after death; these data were analysed thematically. We analysed quantitative and qualitative data independently and then merged findings at the point of interpretation.

    Results
    At study entry psychological distress was high; 26% reached caseness for depression and 41% for anxiety and median complicated grief scores were 27 [IQR 22–37] indicating that on average 11 of the 16 grief symptoms occurred at least monthly. Physical health reflected population norms (mean = 50) and median burden scores were 17 [IQR 9–30]. Three qualitative themes were identified: the importance of relationships with care services, understanding of the progression of dementia, and emotional responses to advanced dementia. An overarching theme tying these together was the carer’s ability to control and influence end of life care.

    Conclusions
    While carers report high levels of psychological distress during advanced dementia, the experience of end of life care in dementia may be amenable to change with the provision of sensitive and timely information about the natural progression of dementia. Regular health status updates and end of life discussions can help families understand dementia progression and prepare for end of life. The extent to which our findings reflect practice across the UK or internationally warrants further investigation.
    Original languageEnglish
    Pages (from-to)1-13
    Number of pages13
    JournalBMC Geriatrics
    Volume17
    Issue number1
    Early online date3 Jul 2017
    DOIs
    Publication statusPublished online - 3 Jul 2017

    Data Access Statement

    The datasets generated and/or analysed during the current study are not publicly
    available as data is potentially identifiable through transcripts. Quantitative data
    are available from the corresponding author on reasonable request.

    Keywords

    • Carer
    • End of life
    • Advanced dementia
    • Anxiety
    • Burden
    • Depression
    • Grief
    • Mixed methods

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