Editor’s Pick | Free to All: Putting Me into Memory Services – The PMIMS Study and Photovoice Exhibition
Ghumra A, Reynolds J (2025) Putting Me into Memory Services – The PMIMS Study and Photovoice Exhibition. Journal of Dementia Care 33(3) 24-26.
Aqsa Ghumra and Josephine Reynolds describe a study co-produced with partner organisations representing the Chinese, South Asian and Caribbean communities of Sheffield. Participants answered researchers’ questions using photographs—the Photovoice method. These photos were displayed in an exhibition and the study celebrated with a series of community events.
The PMIMS study is co-produced with three community partner organisations, representing the Chinese, South Asian and Caribbean communities of Sheffield. Its aim is to explore cultural perspectives on ageing and dementia through family care-partner participants.
The study has four phases:
- Phase 1: Review existing research to understand the problem and things that have already been tried.
- Phase 2: Ask family carers from these communities with elderly relatives experiencing memory concerns to explain their day-to-day experiences, cultural norms, behaviours and traditions around ageing/memory loss and any barriers faced when accessing healthcare and support, through the medium of Photovoice.
- Phase 3: Hold workshops with community leaders and health practitioners to allow stakeholders to co-design the first steps towards improving access and uptake of dementia services in these communities.
- Phase 4: Share our results with the public and participants through an exhibition and celebration event.
Photovoice
They say a picture speaks a thousand words: Photovoice is an innovative method which
allows participants to explore an issue through the visual expression of photography (Wang & Burris 1997). It has three main aims:
- To enable people to record and reflect their community’s strengths and concerns.
- To promote critical dialogue and knowledge about important community issues through large and small group discussion of photographs.
- To reach policymakers.
The use of Photovoice for this study was felt to be important because using photos provides communities with ownership over the narrative of the research findings. Photos transcend different languages, enabling a more equal dynamic between the researchers and participants. Images can have a powerful impact on policymakers and the public, influencing our ways of thinking. They enable us to challenge our fixed attitudes, promoting change.
Background
People from racially minoritised communities are disproportionately impacted by dementia (Mukadam et al 2022). They are under-represented within the dementia services despite having a greater risk of the condition than the UK average (Mukadam et al 2023). If they receive a diagnosis, their symptoms are generally more advanced than the white population (Cooper et al 2010; Mukadam et al 2011).
Qualitative research on the barriers to access for these communities suggests health services currently provide a one-size-Þts-all approach to people of all ethnicities without considering their specific cultural needs (Arblaster 2021).
Research is lacking on the cultural behaviours and practices surrounding ageing and dementia particular to each community. By gaining a more nuanced understanding, we seek to reduce the structural racism built into services and improve disparities in dementia outcomes.
Left to right: Carl Case, Candice Wang, Josie Reynolds, Sahra Abdi, Sarah Ng, Nur Ali, Lungani Sibanda.
The PMIMS study asked care-partner participants to answer the following questions using photos:
- How do you and your family experience ageing and/or memory loss?
- How do you manage your relative’s symptoms of ageing and/or memory loss?
- Which cultural activities or day-to-day experiences help you ease the transition in your relative’s condition?
- What are the barriers or things which help you to access healthcare for your relative?
Community Research Link Workers
The PMIMS study team are members of the Deep End Research Alliance based at The University of Sheffield. DERA have developed and piloted the role of community research link workers (CRLWs) in primary care research settings.
This enables researchers to recruit and train community members with no prior research experience to support the study team. It has many benefits, which include:
- recruiting participants from communities which have historically been excluded from research by design
- ensuring the research is conducted in a culturally respectful way enabling authentic participation.
CRLWs act as a bridge between the community and the research team which can increase trust. Providing ownership to communities over their own narratives ensures interventions are culturally appropriate and therefore more likely to be effective.
“Reading the holy Quran in this blessed month of Ramadan”
“Four generations of family hands. Which represents the many hands that support the well-being of a loved one.”
“I eat breakfast alone every day, and I don’t know who I can talk to the rest of the time”
“Windrush Generation… Am I Not a British Born?”
Exhibition
An exhibition and celebration events took place in October 2024 to showcase the PMIMS Photovoice collection. The aims of this exhibition were to provide the audience with a deeper insight into:
- Cultural practices around ageing and dementia
- How these communities thrive in the face of ageing and cognitive decline
- The barriers faced when accessing services that are not designed to meet their cultural needs
- Experiences of structural racism.
Visitors at the exhibition, and some of the photos participants chose, are shown above.
Parallel events
Alongside the exhibition, there were parallel events taking place:
The opening launch provided individuals with an evening meal celebrating the culinary cultures of all three communities involved (Chinese, South Asian and Caribbean). This celebration allowed guests to connect around the topics of ageing, dementia, care and culture.
A wide-ranging mix of people were invited to include different communities, organisations and professionals working in dementia focused roles.
Other events included a presentation of the PMIMS study findings, a CRLW panel discussion titled ‘How can services put me, my cultural needs and my community at the heart of their work?’, and talks from Dr Hina Khan (local neurology consultant), Morva Grey (Black Elders Project, Engagement Manager from SACMHA) and Sarah Ng (Chair of the Sheffield Chinese Community Centre) relating to culture, ethnicity, brain health and dementia.
Key points
- Racially minoritised communities are underrepresented within dementia services and tend to receive delayed diagnoses.
- The PMIMS study aimed to explore cultural perspectives and practices around ageing and dementia and identify barriers to access and uptake of dementia services.
- The use of Photovoice enables a more equal dynamic between the researchers and participants and provides communities with ownership over their dementia narratives.
Over the weekend there was a ‘community take-over’ where our community partner organisations ran drop-in sessions to showcase the culturally relevant brain health and dementia-friendly activities they provide for their elders.
Author Details
Aqsa Ghumra is a medical student at the University of Sheffield.
Josephine Reynolds is Academic GP, Clinical Research Fellow, Deputy Lead of Deep End Research Alliance, University of Sheffield (Division of Population Health).
Contact: josephine.reynolds@sheffield.ac.uk
We hope you enjoyed this free article from the May/June 2025 issue of the Journal of Dementia Care.
Further highlights include:
- Reducing the risk of social isolation in care homes
- JDC Asks: What us the best way to bring the benefits of the arts to people living with dementia and family carers?
- Reflecting on resident-caregiver attachment behaviours
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