Primary care as a link between diagnosis and post-diagnostic support: Dementia care in ethnic minority groups

In the UK alone, there are 850,000 people living with dementia (PwD) (Alzheimer’s Society, 2014), and an estimated 50 million people live with the condition world wide (Alzheimer’s Disease International, 2016). PwD and family carers often complain that once a diagnosis is made and delivered by the GP, they fail to receive proper support. But many people from black and minority ethnic (BAME) groups are less likely to receive a dementia diagnosis in the first place (Pham et al., 2018) or consult their GP and are seen by a memory clinic at a more advanced stage (i.e. lower cognitive functioning, everyday functioning) (Tuerk & Sauer, 2015).

Research across BAME groups has shown that people are less likely to consult their GP for memory problems due to cultural beliefs of needing to take care of the older person within the family (Mukadam et al., 2011). This is corroborated by evidence from South Asian minority groups, showing that older adults with memory problems were less likely to consult their GP about their problems because they attributed these to their fate and as part of normal ageing (Giebel et al., 2015; 2016). Therefore, ethnic and cultural background play a significant role in consulting the GP in the first place - the medical professional who is the most important access point to formal dementia care after a diagnosis, as a European-wide study has shown (Bieber et al., 2018).

This is a mixed-methods PhD, employing both quantitative and qualitative methods. The PhD student will be trained up to collect data with people with dementia, family carers, olderadults, and clinicians, and will be guided towards necessary training courses (including mental capacity assessments; good clinical practice). The student will be developing the individual PhD studies to address the research question and aim themselves, guided by the supervisory team. The PhD will comprise a systematic review of the topic area; qualitative interviews and/or focus group investigations of the topic, such as focus groups with GPs, people with dementia and family carers from BAME groups; as well as a quantitative component, such as a survey with PwD and older adults from BAME groups to better understand potential barriers to accessing their GP for memory problems and taking up immediate post-diagnostic support (relevant for PwD). It is also envisioned to include a strong emphasis on co-production as part of this PhD, with the potential of running co-production workshops towards the end of the PhD to develop strategies to address identified potential barriers, which could be implemented afterwards within ARC NWC member organisations.

Individual components of this PhD will closely utilise the networks of the ARC NWC by recruiting from ARC members such as TIDE, The Brain Charity, House of Memories, Alzheimer’s Society North West, as well as NHS Trusts (including North West Boroughs, Merseycare, Walton Centre, Cheshire and Wirral), and by utilising BAME support group networks in the region.

In addition, this PhD will be strongly underpinned by public involvement.

It is expected the successful applicant (s) must commence on or before 1st February 2021.

For any enquiries please contact Dr Clarissa Giebel on [Email Address Removed]

If you wish to apply, please send a covering letter, full CV together with names and contact details of two academic referees, stating the research proposal/s of interest to you and why you think you are suitable. Please send to Dr Clarissa Giebel on [Email Address Removed] and Professor Gabbay on [Email Address Removed]