Principal Supervisor: Professor David Mosse (Department of Anthropology & Sociology, Professor of Social Anthropology, SOAS University of London)

Co-Supervisor: Tom Shakespeare (Professor of Disability Research, Population Health, Epidemiology and Population Health, LSHTM)

Project Description

The growing global challenge of dementia has prompted large investment in biogenetic and neuroscientific research aimed at understanding the causes, risks, prevention, early detection and new drug treatments. But at the heart of improved care for people with dementia and their families are mental health services adapted to their needs. This project focuses on a new approach to care that may be well adapted to some key aspects of dementia.

First, dementia is not an illness that is just within an individual person. It’s a diagnosis that affects the entire family/social network. It affects roles, responsibilities and relationships of everyone, with high demands and psychological impacts on carer families given the progressive nature of the condition. And yet current individualistic approaches to diagnosis and treatment of dementia are poorly adapted to these systemic needs.

Second, the experience of people with dementia and those in their social network is commonly characterised as serial loss with complex grieving: loss of identity, personality and sense of self, the erosion of relationships and roles. This leads to social stigma, disempowerment and isolation both for those with the diagnosis and their network (Shakespeare et al. 2017). A therapeutic approach focussed on loss of autonomy, or the ‘disappearing self’, overlooks how experiences of dementia involve new ways of sharing agency and cognitive processes, including capacities for memory, language and decision-making within collaborative networks (Klein et al. 2023).  This implies need for care focused on agency/capacity within a web of relations (among clients, family, clinicians, community), including with the material environment and technology: ‘relational’ rather than just ‘person-centred’ care (Gopinath et al. 2023).

Third, continuity of care for the person and their network is often called for. But at present services are fragmented, poorly coordinated and compartmentalised, being linked to different stages of the illness. Staff too suffer with high turnover and burnout.

This PhD research will offer new insights into the care of people with dementia through in-depth ethnographic study of Open Dialogue, an innovative approach addressing the need for a non-individualistic social network approach, care focused on agency/capacity within a web of relations, and continuity of care and cohesive teams.

Open Dialogue (OD) is being piloted as a more effective and less stigmatising approach to dementia in selected NHS services in the UK and internationally. Developed in 1980s Finland, OD has now formulated principles, codes of practice, training schemes, fidelity/adherence measures and a global community of practice. The results of a large NHS randomised controlled trial of OD are imminent, and a parallel ethnographic study details the processes and experience of OD (Mosse et al. 2023). Neither of these studies (nor any others) have addressed OD in relation to services for those with dementia.

This proposed study is both anthropological and collaborative. As an anthropological study, it is not limited to a cognitive view of the self in terms of memory or reason, and takes an embodied, social-relational view of persons well aligned to OD. As collaborative research, it is developed jointly with the Older Adult service of Central and North West London NHS Foundation Trust (CNWL). Over the past 2-3 years, this multidisciplinary Community Mental Health Team in Westminster has adopted OD for a growing proportion of service users.

Aims, Objectives and Questions

Through embedded ethnographic research, this study aims to:

• Identify the benefits and limitations of Open Dialogue for people with dementia, their families and care teams, including how OD is adapted to dementia care both as a therapeutic approach and a method for organising services ensuring continuity of care;
• Examine how OD is experienced and works in practice, focusing on microprocesses of OD care relationships involving clients, families and teams.
• Develop and pilot research methods for work in OD in dementia care settings.

Among the research questions of interest to the NHS partner are:

• How can OD practice be adapted for the unpredictable progression of dementia, fluctuating cognition, diminished capacity, and severe cognitive impairments?
• How is the network approach sustained as capacity decreases to the point when OD is primarily a carer intervention?
• How is the experience of dementia care through OD shaped by gender roles and relationships of all in the network?
• How do identities and structural processes of race and ethnicity shape OD experiences in dementia care, what factors of cultural identity, kinship and stigma around dementia arise in the diverse population of Westminster?
• What organizational challenges exist in providing continuity of care across different illness stages?
• How can OD’s peer practitioner roles develop in dementia care?
• Are legal or governance changes needed to support a dialogical approach to dementia care?

Fieldwork methodology and ethical considerations

The PhD researcher will train in OD and join the Older Adult team for 12 months. Based on an approved protocol for informed consent, they will participate as practitioner-ethnographer in the therapeutic ‘network’ meetings with clients/families/colleagues and in all team meetings/reflective practice. They will keep a journal and fieldnotes and conduct ethnographic interviews with team members and client networks. A case-study approach will follow 5-6 networks over the year, tracking change over time. The feasibility of the method and appropriateness for NHS/HRA ethical clearance has been demonstrated from Mosse’s recent ESRC anthropology of OD study. The protocol will additionally meet requirements of the Mental Capacity Act if participants in networks might lose/lack capacity.

During the pre-fieldwork year, appropriate ways will be found of taking advice and involving people living with dementia in designing and undertaking the project. This will include DEEP, the UK network of dementia voices, and support organisations like Innovations in Dementia.

The successful candidate will join the PhD programme at CAMHRA (Centre for Anthropology and Mental Health Research in Action), SOAS Anthropology Department, having the opportunity to participate in specialist doctoral training workshops co-designed with our partners at the Tavistock and Portman NHS Foundation Trust. This collaborative programme will provide the researcher with the methods, fieldwork skills and self-care for clinical ethnography and other forms of deeply embedded research practice. Through co-supervision with Prof Shakespeare at LSHTM, the PhD researcher will engage with PhD researchers in disability through the International Centre for Evidence in Disability (ICED) and in mental health via the Centre for Global Mental Health).

Significance

The study promises insights into improving services for people with dementia and families, as well as data vital to the uptake/implementation of OD after the large UCL-led RCT, advancing OD theory and protocols. The study will contribute knowledge relevant to organisational challenges of NHS dementia care and offer data for global learning on dementia (through SOAS/LSHTM).

Timescale

• Yr1: research training and preparation of IRAS ethics proposal, data management plan (etc.) for REC review (approval July 2026); induction into CNWL Team and OD training.
• Y2: fieldwork (August 2026-July 2027).
• Y3: post-fieldwork data analysis/dissemination. Full draft by Sept 2028 (Final submission 15 Sept 2029).

Outcomes/dissemination

PhD Thesis, NHS feedback seminars, draft peer-reviewed single/joint-authored articles; user-seminars/workshops. Findings will feed into debate on the ‘culture of care’ through CAMHRA’s knowledge exchange and policy networks (NHS, Public Health, Royal College of Psychiatrists etc.).

Subject Areas/Keywords:
Dementia, mental health; anthropology; ethnography; social/cultural psychiatry; Open Dialogue, family/social networks.

Key References

Gopinath, Manik; de Lappe, Joseph; Larkin, Mary and Wilson, Anthea (2023). The value and practice of relational care with older people: a research report by The Open University. The Open University. DOI: https://doi.org/10.21954/ou.ro.00015a63

Klein, Eran and Sara Goering,  2023. “Can I Hold That Thought for You? Dementia and Shared Relational Agency,” Hastings Center Report 53, no. 5: 17-29. DOI: 10.1002/hast.1485

Mosse, David et. al. 2023. “The Contribution of Anthropology to the Study of Open Dialogue: Ethnographic Research Methods and Opportunities.” Frontiers in Psychology. Frontiers Media S.A. https://doi.org/10.3389/fpsyg.2023.1111588.

Shakespeare T., Zeilig H., Mittler P. 2017. Rights in mind: thinking differently about dementia and disability, Dementia, 18 (3):  1075-1088.

Further details about the project may be obtained from:

Principal Supervisor:  Professor David Mosse – dm21@soas.ac.uk
Co-Supervisor: Professor Tom Shakespeare – tom.shakespeare@lshtm.ac.uk

Further information on applying for the PhDs scholarship

We invite applications for full-time PhD study from outstanding and highly motivated research students who have a BA and/or MA degree in Anthropology (or closely related disciplines focused on ethnographic research methods e.g., human geography, sociology), with a merit or equivalent in the Master’s Degree and a master’s dissertation grade of 65% (UK) or higher. The candidate will have excellent skills for, and prior experience of, conducting ethnographic research or be trained in ethnographic methods. Personal experience of dementia care will be an advantage, and we encourage applicants from underrepresented groups.

We welcome applicants from the UK and internationally. The scholarship includes full fees (at Home fees rate) and a stipend to cover living expenses. Candidates liable to the Overseas fees rate would have to pay the difference from Home fees themselves. International applicants should also see Doctoral School English language requirements.

How to Apply

Applicants interested in this award will need to ensure they submit an application for a PhD to the SOAS Anthropology & Sociology Department.

Further information about PhDs at SOAS university of London is available from: dsadmissions@soas.ac.uk   

There is a two-step procedure for applying for this Bloomsbury scholarship award.   

• Step 1, apply to your PhD Programme (SOAS Anthropology here) and be sure to mention that you are applying for the Bloomsbury PhD Studentship  

Guidance for applying to a Research Programme and information on makes a complete application can be found here for How to Apply.   

• Step 2, apply for the scholarship by 12:00 PM UK local time by 7 March 2025. You can access the application by clicking the following link: Online Scholarship Application Form. 

Applicants who are successfully shortlisted after the closing date will be invited to an online interview. Further details on this will be sent by the scholarships@soas.ac.uk department.

Candidate Assessment 

• Will be based on the information provided in your PhD programme and scholarship application (Research Proposal and Personal Statement)
• Confirmed and awarded by a Selection Panel.

NB: Your Research Proposal should take account of the Project Description and outline above. Please respond to the Project Description and elaborate on how you would approach the project theoretically and methodologically based on your previous academic training and experience, and indicate how you would aim to carry out the research.

In your Personal Statement, please indicate why this project interests you and in what ways you are qualified to undertake it

If you have any enquiries please contact us below  

Email: scholarships@soas.ac.uk  

Telephone: 44 (0)207 074 5090  

Closing date for applications is:         
Friday 7^th March 2025 12:00 PM (GMT)