The needs and experiences of caregivers of persons with Alzheimer's disease living in black rural communities in Mpumalanga

Abstract

The worldwide ageing of the population, with an increase in associated chronic diseases, will inevitably escalate the demand for social work services at individual, group and community level. Alzheimer’s disease is one of the conditions associated with a population that is growing older. The disease was first described by Alois Alzheimer in 1906 and is characterised by progressive declines in cognitive and body functions, eventually resulting in death. It is estimated that 25 to 30 million people worldwide suffer from Alzheimer’s disease and that in 2050, 106.2 million people will be living with the disease, causing a looming global epidemic of Alzheimer’s disease (Brookmeyer, Johnson, Ziegler-Graham & Arrighi, 2007:186).

At some stage in the disease’s process, most, if not all people with Alzheimer’s, require some form of care. This care is generally provided by informal (family) caregivers in the community. Providing care to an older person with Alzheimer’s disease present multiple challenges with many factors influencing the caregiving experience. When the needs of caregivers are not met, caregiver burden may result. For the many families living in rural and impoverished areas, this additional responsibility may come as an extraordinary burden and cause unwarranted stress.

The goal of the study was to explore the needs and experiences of caregivers of persons with Alzheimer’s disease living in black rural communities in Mpumalanga. The guiding research question was: What are the needs and experiences of caregivers of persons with Alzheimer’s disease living in black rural communities in Mpumalanga?

A qualitative research approach was followed with a collective case study research design. The population for this study was caregivers providing care to persons diagnosed with Alzheimer’s disease living within the Ehlanzeni and Nkangala Rural Districts Municipalities of Mpumalanga. Non-probability purposive sampling was utilised to generate a sample.

Eleven participants who were caregivers of persons with Alzheimer’s disease living in communities within the above-mentioned municipalities were selected. Semi-structured individual interviews were conducted with participants. Interviews were voice recorded with the permission of the participants, and were transcribed by a contracted transcriber. The data gathered were analysed by the researcher and themes and sub-themes were identified. The research findings were presented by providing a profile of research participants followed by a thematic analysis of the themes and sub-themes from the transcriptions. Literature control and verbatim quotes were used to support the findings. The themes include the following: Theme One – The Alzheimer’s disease caregiver; Theme Two – Indigenous issues with regards to Alzheimer’s disease; Theme Three – Caregivers’ understanding of Alzheimer’s disease; Theme Four – The impact of Alzheimer’s disease on the caregiver and Theme Five – Support services in the community.

The conclusions of this study reflect that caregivers in black rural communities in Mpumalanga have a number of needs and challenges in providing care to a person with Alzheimer’s disease. Some of the challenges include the absence of caregiving training, stigmatisation due to indigenous beliefs, traditional healers’ diagnosis and treatment of Alzheimer’s disease, limited knowledge of caregivers about Alzheimer’s disease, adverse physical, social and psychological outcomes associated with caregiving, negative experiences with the public health care system, and the limited availability and accessibility of support services in the community.

The recommendations offered by this study can be used by professionals working in the field of gerontology to understand the needs and experiences of Alzheimer’s caregivers. Social workers can use the recommendations to find ways to make their services known to the communities, and improve their intervention and support to these caregivers.