Views and experiences of informal caregivers of older adults with dementia in Sri Lanka: a phenomenological study

Abstract

Introduction:
Dementia is a global health concern affecting an estimated 115.4 million people. Dementia has become a research priority in low-and-middle income countries (LAMIC), due to increasing prevalence associated with demographic transition and ageing population. Research on informal dementia caregivers; their cultural and traditional views and experience in LAMIC is scares.

Aim:
This study explores views and experiences of informal caregivers for older adults with dementia in Sri Lanka.

Methods:
The study was underpinned by a phenomenological approach. Twenty-six in-depth semistructured interviews were conducted with a purposive sample of informal dementia caregivers living in a semi-urban area in Colombo, Sri Lanka. Data analysis was carried out using Interpretative Phenomenological Analysis.

Results:
Overarching findings consist of three super-ordinate themes: meaning of dementia; meaning, practice and purpose of caregiving; and caregivers’ concerns, issues and challenges. Caregivers attributed diverse meanings to symptoms and causes of dementia and caregiving. A shift in their initial views of illness perceptions and causations of dementia symptoms was noted along the journey of caregiving. Dementia awareness was low among majority of caregivers. Alternative traditional healing methods were widely practised, as first-line and sole treatment for dementia or as a complementary treatment along with western medical treatments. Experience of burden was often driven by either caregiving activities with people with dementia (PwD) or the wider socio cultural context. Caregivers were concerned about the service gaps in health care system.

Conclusions and Recommendations:
Caregivers’ personal values, beliefs, attitudes and their socio-cultural and religious views largely influenced the conceptualisation of meanings of dementia and caregiving role. The findings highlight the importance of increasing dementia awareness in the study context and developing facilities and health care services to support PwD and their family caregivers. Integration of western medical care model and traditional or complementary care models will be beneficial in this particular socio-cultural context.