Caring for the caregivers: exploring the experiences of South Asian carers of people with dementia in Greater Manchester area: an IPA study

Sathish, Ambily (2023) Caring for the caregivers: exploring the experiences of South Asian carers of people with dementia in Greater Manchester area: an IPA study. Doctoral thesis (PhD), Manchester Metropolitan University.

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Abstract

The contribution of South Asian caregivers to dementia care has not received adequate recognition. These caregivers are significantly underrepresented in dementia services, a concern identified by the Department of Health. They often face challenges related to social dynamics, language barriers, limited education, and cultural differences when accessing community services. Given the projected exponential increase in the aging South Asian population, understanding the unique experiences of caregivers from these backgrounds has become increasingly urgent. This study aims to gain a comprehensive understanding of how South Asian caregivers in the Greater Manchester area perceive their role in caring for a family member with dementia, as well as their positive and negative caregiving experiences. Qualitative methods were employed, involving semi-structured interviews with eight caregivers from Indian and Pakistani backgrounds living in Greater Manchester, UK. The interviews generated rich accounts of their experiences in caring for someone with dementia. Interpretative Phenomenological Analysis (IPA) was utilized to analyse the interview transcripts. Key findings revealed several significant themes: "Now it's my turn to take care of you," "When it’s family, you can't say no," "It is a norm, a good norm, a very good norm to follow," "It was a constant roller coaster," and "Tell us what it is and what the best way is to deal with it." The first three themes depict caregiving as a positive experience influenced by cultural factors and strong family values. Participants demonstrated strong attachment to their families and a sense of obligation to care for older family members. The fourth theme illustrates the complexity of South Asian caregivers' experiences, which are influenced by cultural, psychosocial, and physiological factors, leading to various stressors. The final theme highlights the participants' lack of preparedness for the caregiving role and their disappointment with the support services available, including the absence of culturally tailored services and unmet basic needs. This study strongly supports existing knowledge about the challenges faced by South Asian dementia caregivers and provides a systemic understanding of how caregivers from diverse cultural and socioeconomic backgrounds are differentially affected. It highlights the importance of support for South Asian caregivers and offers insights on how healthcare services can be improved to meet their specific needs. Addressing these issues may alleviate the caregiving burden and significantly enhance the quality of life for both the patients and caregivers involved.