Background Place of death is important in end of life care and it is reported that given the right support, most people would choose to die at home. A very small minority of people with dementia die at home and knowledge gaps remain on how best to support end of life care at home for people with dementia.
Aim This systematic review synthesised qualitative and quantitative studies to explore the challenges and facilitators of providing end of life care at home for people with dementia.
Methods A narrative approach was adopted to provide a comprehensive synthesis of previously published literature in the area. A systematic literature search was conducted across six electronic databases (AMED, BNI, CINAHL, EMBASE, MEDLINE, and PsychInfo) and reference lists of key journals were searched up to November 2016. Included studies were appraised for quality and data thematically synthesised.
Results Searches returned 1949 unique titles, of which seven studies met all eligibility criteria (four quantitative, three qualitative). All studies were rated for quality and six key themes identified – four facilitators and two challenges. Facilitators included ‘support from health care professionals’, ‘informal caregiver resilience’, ‘medications and symptom management’ and ‘appropriate equipment and home adaptations’. Challenges included ‘worsening of physical or mental health’ and ‘issues with formal services’.
Conclusions People with dementia may not always require specialist palliative care at the end of life and many clinicians, services and charities support people with dementia to die well at home. Informal caregivers also provide a significant amount of this care to people. Further research is required to establish how clinicians, statutory services, voluntary agencies and volunteers can support families to allow a greater number of people with dementia to die at home and to determine what services are required to facilitate home death for people with dementia.