A new innovative study from the University of Westminster, carried out in partnership with Alzheimer’s Disease International (ADI) and Roche, has identified four cross-cultural approaches to caring for a family member with Alzheimer’s disease. The researchers call for new guidance to ensure the support different types of carers receive is tailored to their needs.
The research highlights the crucial role caregivers play in supporting people with Alzheimer's disease worldwide and sheds light on the universal need for inclusive and culturally sensitive support systems.
The study identified a role-needs framework of four primary ways family caregivers approach their caring role, each with distinct support needs. The four caregiving approaches are empathising, organising, non-identifying caregiving and reluctance.
Empathising caregivers focus on emotional connection and value becoming a skilled, compassionate caregiver. They can struggle to prioritise their own emotional needs so benefit from talking to friends, peers and family for support.
Organising caregivers use a problem-solving approach, advocating for the person they care for. They like to learn as much as possible about the disease, so benefit from early, structured information and professional guidance. Non-identifying caregivers do not see themselves as carers, providing support and care for their loved one without any specialist knowledge or expertise. They need help with managing daily aspects of care and disease-related tasks. Caregivers in the reluctance category often feel overwhelmed and trapped by caregiving responsibilities and prefer to rely on professionals for day-to-day care, benefiting from external support to manage the strain.
By acknowledging the variety of approaches caregivers take, the study offers a way to tailor support to help each person’s unique circumstances and aims to shape guidelines to fit the diverse and evolving needs of caregivers across the globe.
To gather their data, researchers interviewed 34 family carers from the UK and US as well as Brazil and South Africa, focusing on their experiences during and following the COVID-19 pandemic. Participants also took photographs to capture their feelings and experiences of caring, giving caregivers a creative way to express their own caregiving stories.
The study was conducted by the University of Westminster’s Dr Tina Cartwright, Dr Fauzia Knight, Professor Damien Ridge, Professor Catherine Loveday and Candida Halton, in partnership with the Director of Research and Publications at ADI, Wendy Weidner, and Global Patient Partnership Director at Roche, Jannice Roeser.
Dr Tina Cartwright, Director of the Westminster Centre for Psychological Sciences and Course Leader for the Health Psychology MSc, said: “Our caregiver typology acknowledges the different ways that family members approach caregiving, recognising that all approaches are equally valid. Importantly, it highlights the support needs of each approach enabling more targeted and person-centred support. We are now working with stakeholders and charities to develop resources to increase awareness and reduce stigma associated with caregiving. The findings are also being used to develop a questionnaire to enable organisations to better identify caregiver needs based on our typology.”
This new study directly contributes to the United Nations Sustainable Development Goal (SDG) 3: Good Health and Wellbeing. Since 2019, the University of Westminster has used the SDGs holistically to frame strategic decisions to help students and colleagues fulfil their potential and contribute to a more sustainable, equitable and healthier society.
Learn more about the Portraits of Care project and read the published article.
Find out more about studying Psychology at the University of Westminster.
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