End of Life Care for Black Caribbean Patients with Dementia.
Research type
Research Study
Full title
End of Life Care for Black Caribbean Patients with Dementia as experienced by Bereaved Caregivers.
IRAS ID
153727
Contact name
Diana Jackson
Contact email
Research summary
There are 800,000 people in the UK with dementia. The number of people with dementia is expected to double every 20 years (Alzheimers Society 2012).Evidence suggests that people with dementia receive poor quality end of life care compared to end of life care offered in other life limiting illnesses (Lawrence 2011, Sampson 2011, Crowther 2013).
Not only do inequalities exist in end of life care for dementia patients, inequalities also exist in ethnic group and end of life care (Koffman et al 2007). The Calanzani report (2013) suggests that by 2026 among Black, Asian Minority ethnic (BAME) groups, black Caribbeans will have the second highest proportion of its’ population aged 65+.
With the growing number of dementia patients and the growing proportion of black Caribbean population aged 65+ palliative care services will need to be able to meet the growing demands.
Research looking at end of life care for dementia patients from ethnic minority groups is limited especially in the UK. One US review examined the relationship between ethnic minority status and provision of end of life care for people with dementia. Differences were found in care between ethnic groups. Artificial hydration was higher and aggressive treatments continued longer in some ethnic groups. Recommendations were made for other qualitative studies in western multiethnic societies (Sampson et al 2012).
This research will therefore look at end of life care for dementia patients for one ethnic minority group in the UK. The ethnic minority group selected is black Caribbean patients. Bereaved caregivers of black Caribbean patients with dementia will rate their level of satisfaction with care of their relative using a validated dementia scale. This will be followed by an indepth semi-structured interview examining experience with end of life care with particular reference to cultural factors. Recommendations will be made from the findings.
REC name
London - South East Research Ethics Committee
REC reference
14/LO/0804
Date of REC Opinion
15 Jul 2014
REC opinion
Further Information Favourable Opinion