About the project
Informal carers play an invaluable role in supporting people living with Alzheimer’s disease (PLWA), which is the most common form of dementia worldwide. Caring for a PLWA can be a rewarding role, however it can also come with significant challenges, which were only exacerbated by the COVID-19 pandemic. Our project therefore aims to build a more in-depth understanding of the experiences of caregivers during and beyond the pandemic, comparing experiences of accessing support in countries with differing health and social care systems, as a means of finding common and local solutions to supporting carers. To do this, we are working across four very different countries – the UK, US, Brazil and South Africa – with Alzheimer’s Disease International (ADI) and regional partners.
We are using a mixed methods approach to understand caregivers support needs and experiences, with a survey alongside in-depth interviews in each country to provide a deeper, more nuanced account of carers lived experiences. The interviews use photo-elicitation where respondent generated photographs or other visual images are used within the interview to reveal hidden contexts and deeper narratives that might usually go untold. Working with our international partners and other collaborators, we are working to translate our findings into guidelines and resources that will help charities and policy makers better tailor support to individual carers needs globally. More information about the study, its findings and impact can be found here.
Funding body
Roche provided funding and, alongside ADI, has contributed to the development and design of the study. Additional funding to develop the project was received from UKRI and RCIF.
Investigators
- Tina Cartwright (Principal Investigator)
- Fauzia Knight
- Damien Ridge
- Catherine Loveday