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

BMC Geriatrics

Research Article

Gerard Leavey¹  Irwin Nazareth²  Michael King³  Jane Harrington⁴  Anna Gola⁴  Elizabeth L. Sampson⁴  Victoria Vickerstaff⁴  Nuriye Kupeli⁴  Kirsten J Moore⁴  Louise Jones⁴  Sarah Davis⁴ 

[1] Bamford Centre for Mental Health & Wellbeing, University of Ulster, Magee Campus, Derry Londonderry, UK;Department of Primary Care and Population Health, UCL Royal Free Site, London, UK;Division of Psychiatry, University College London, London, UK;Marie Curie Palliative Care Research Department, University College London, London, UK;

关键词: Carer;    End of life;    Advanced dementia;    Anxiety;    Burden;    Depression;    Grief;    Mixed methods;   

DOI  :  10.1186/s12877-017-0523-3

 received in 2017-03-02, accepted in 2017-06-15,  发布年份 2017

来源: Springer

【 摘 要 】

BackgroundMany 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.MethodsMixed 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.ResultsAt 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.ConclusionsWhile 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.

【 授权许可】

CC BY   
© The Author(s). 2017