Portraits Of Care is a multi-country study exploring experiences of caring for people living with Alzheimer’s during and beyond COVID-19. Using a combination of questionnaires and interviews we explored how family caregivers felt during the pandemic, their experiences of caregiving and accessing support. The research took place in four countries across four continents: the United Kingdom, the United States, Brazil and South Africa. It was carried out by researchers at the University of Westminster (London, UK), in partnership with Alzheimer’s Disease International (ADI) and Roche. Roche provided funding and, alongside ADI, contributed to the development and design of the study.
The qualitative interviews used an innovative photo-elicitation technique to access the lived experience of caregivers – where participants took photographs that captured their feelings or experiences of being a caregiver. From our findings, we identified a framework of four cross-cultural caring approaches, which we describe as Empathising, Organising, Non-identifying, and Reluctance. This acknowledges the different ways that family members approach caregiving which has important implications for the type of support they need. While all caregivers would benefit from respite, financial and physical help, other support needs are specific to caring approach. Our caregiver typology thus offers an inclusive framework to guide charities and policy-makers to tailor support to fit individual caregivers circumstances globally. A published peer-reviewed report of this work can be found here [link to paper forthcoming].
With additional UKRI QR and RCIF funding, we have worked with stakeholders to translate our findings into a visual tool for charities and policy makers in Brazil. This was developed in partnership with FEBRAZ (federation of national Alzheimer associations). The video (with English subtitles) can be found here [Link to video]. Ongoing work in the UK is using the findings to develop and test a questionnaire to enable organisations to better identify caregiver needs based on our typology.
We have discussed the study on BBC Radio 4’s All In The Mind. We have also presented our findings at several international conferences:
- Mateus, E, Franzon, A, Dellaroza, M, Knight, F, Ridge, D, Loveday, C, Cartwright, T. "I have learned to cope’: how different caring styles can benefit from different support and resources." 36th Global Conference of Alzheimer's Disease International, Kraków, Poland, April, 2024.
- Cartwright, T, Knight, F, Ridge, D., Loveday, C, Roeser, J, Weidner, W, Halton, C. (2023). Portraits of Care: Exploring experiences of caring for people living with Alzheimer’s across four continents. 33rd Alzheimer Europe Conference (AEC), Helsinki, Finland, Oct 2023.
- Cartwright, T, Knight, F, Ridge, D., Loveday, C, Roeser, J, Weidner, W, Halton, C. (2023). Portraits of Care: Exploring experiences of caring for people living with Alzheimer’s across four continents. European Health Psychology Society Conference (EHPS), Bremen, Germany, Sept 2023.
- Cartwright, T.J., Knight, F., Ridge, D., Loveday, C., Roeser, J., Weidner, W.S. and Halton, C.C. (2023), Typologies of caregiving: Understanding support needs of carers across four continents. Alzheimer's Association International Conference 2023, Amsterdam, July, 2023. Alzheimer's Dement, 19: e082717. https://doi.org/10.1002/alz.082717
