Giving voice to the voiceless: Understanding the perceived needs of dementia family carers in Soweto, a South African township.

This qualitative study aimed to provide family caregivers with an independent platform to reflect on and identify their needs in the role of dementia caregiver. Thirty caregivers were interviewed using a semi-structured approach, and data analysis followed a reflective thematic analysis method. The study revealed that Black African caregivers in townships require sufficient information and orientation to dementia-specific services, psychoeducation on dementia as a disease and its behavioural manifestations, as well as practical skills to manage the disease process. Caregivers expressed the need for in-depth, accessible education to boost their confidence and resilience in handling the challenges of dementia caregiving. They also proposed community initiatives to raise awareness, promote knowledge, and facilitate early detection and diagnosis of dementia. Additional needs included informational and educational workshops, resources like transportation services and helplines, day care facilities, media campaigns, and collaboration with the government for funding and policy change. New caregivers were advised to seek comprehensive education, support, and services while preserving the dignity of their family members with dementia. Remarkably, the identified needs and community initiatives aligned with the priority areas outlined by ADI for a National Dementia Plan, which South Africa currently lacks. The study highlights the importance of developing a National Dementia Plan in South Africa through collaboration among stakeholders, including communities, policy-makers, and multidisciplinary healthcare teams, while ensuring that individuals and families affected by dementia have a voice.

Up-Close and Personal: Conceptualizing the Self as Dementia Caregiver: a Study in Soweto, South Africa.

The aim of this study was to understand how dementia caregivers in the township of Soweto, South Africa interpret their role in the context of caregiving through the personal constructs identified using the Self- Characterization technique. Thirty family caregivers were recruited via purposive sampling methods and completed a Self-Characterization Sketch during semi-structured interviews. Content analysis of construct pairs was thematically coded using the Classification System for Personal Constructs (CSPC) - a reliable method to analyse personal constructs that are generated by constructivist assessments. Findings revealed that caregivers' interpretations of themselves was characterized by moral, emotional and cognitive attributes. Specifically, a sense of mastery, self-efficacy, strength, selflessness and unconditional positive regard characterized the most meaningful constructs of care within caregiver narratives in response to their loved ones with dementia. These adaptive outcomes, despite the challenging, pervasive, complex nature of dementia and its manifestations, suggest psychological and emotional resilience, higher levels of adjustment and caregiver well-being. However, it is important to consider possible consequences such as physical fatigue and burnout despite adaptive outcomes. Therefore, it is recommended that approaches to psychoeducational initiatives, emotional and psychological interventions and awareness campaigns include teaching caregivers how to self-care encourage the importance of consistent exercise, rest, sleep, nutrition as well as reaching out for social support. Lastly, empowering caregivers to use their personal resources would prove valuable in support groups, and individual to facilitate self-awareness, sustained coping and mental health.

Understanding the lived experiences of family caregivers of individuals with dementia in Soweto, a South African Township.

This study was undertaken to understand South African family caregivers' lived experiences of individuals living with dementia in a predominantly Black African township. A homogenous sample of thirty family caregivers was recruited using purposeful sampling methods and interviewed using a semi-structured approach. Reflective Thematic Analysis (RTA) yielded four broad themes: Understanding Dementia, Struggles and Sacrifice, Mental Health and Protective Factors. Findings reflect how dementia is understood by family caregivers and their community, the struggles and sacrifices that they endure, the impact of caregiving on caregiver mental health and the protective factors that enable caregivers to cope, despite their difficulties. Our findings lead to new insights regarding dementia caregiving amongst family caregivers in South Africa. First, there appears to be a shift in perception - away from a cultural/spiritual paradigm - and a lack of pressure to conform to community conceptualizations of dementia among individual caregivers. Second, dementia caregiving had a negative effect on caregiver mental health and elicited stress, anxiety and grief reactions. Third, caregivers did not feel emotionally supported and expressed not receiving any assistance with their daily practical tasks. Fourth, before receiving a diagnosis, family caregivers were viewed as the perpetrators of abuse and/or neglect against their family members with dementia, instead of individuals with dementia being stigmatized by the community due to their behavioural symptoms. Additionally, help-seeking was not hindered by fear or stigma, but was motivated by caregiver distress as dementia-related behaviours began to manifest and caregivers feared being perceived as perpetrators of abuse. Psychoeducational interventions should be tailored to targeted population groups that are in need of further training to address the lack of awareness in communities, insufficient knowledge of dementia amongst healthcare professionals and the practical, emotional and psychological difficulties that family caregivers endure to facilitate mental health care and resilience.

Exploring the contextual factors that impact the dementia family caregiving experience in Soweto township, South Africa.

Townships and rural areas endure difficult circumstances such as poverty, unemployment, low educational levels, unstable income sources, socioeconomic deprivation and the lack of transportation. Furthermore, psychosocial issues such as crime, violence and substance abuse are additional contextual factors prevalent within South African townships. There has been a paucity of research focussing on the impact of contextual and socioeconomic conditions on the dementia family caregiver experience. This qualitative study aimed to address this gap. Semi-structured interviews were conducted with 30 family caregivers via purposeful sampling methods. Data analysis using Reflexive Thematic Analysis (RTA) generated four broad themes, namely - (1). Poverty, (2). Crime, Violence and Substance Abuse, (3). Practical Challenges and (4). A Sense of Normalcy. The findings of this study depict the socioeconomic conditions of family caregivers living in Soweto and its impact on dementia caregiving. The majority of the family caregivers in this study were unemployed and identified the financial aspects of caregiving as a significant strain. Beyond financial aspects, practical challenges that some family caregivers reported included spatial constraints and insufficient material resources. Caregivers raised safety concerns due to the dangers that this socioeconomic context posed. However, there was an implied sense of normalcy and a reluctance to identify challenges that caregivers endured. Recommendations for further research and its implications for public health policies and important initiatives to advocate for dementia caregivers and their family members are outlined.

Availability and utilization of support services for South African male caregivers of people with Alzheimer's disease in low-income communities.

The purpose of this study was to explore the needs of male caregivers of people with Alzheimer's disease, by ascertaining the availability and utilization of Alzheimer's disease-related resources in low-income communities in the Western Cape. Semi-structured interviews were conducted with 11 adult males who were familial caregivers of persons with Alzheimer's disease. They were recruited via purposeful sampling methods. Thematic analysis of the data generated four major themes, namely Awareness, Knowledge and Education; Caregivers who do not use services; Caregivers who use services and Service needs identified by male caregivers. Predominant findings were that male caregivers in lower income communities do not make use of formal Alzheimer's disease-related services - albeit being aware of them - because they do not perceive a need for its utilization. Instead, male caregivers prefer assistance in the form of respite care in the home environment to relieve and assist them with household needs. The role of culture may have a substantial influence on these patterns of help-seeking behavior due to the emphasis on a collective approach to caregiving using wider, informal social networks. Needs that were identified by the male caregivers in this study included the general awareness of Alzheimer's disease, access to information regarding service provision, psychoeducation and affordable services within improved care facilities for low-income communities. The findings of this study suggest a starting point for the needs that should be prioritized to facilitate culturally appropriate service use amongst male caregivers in similar settings.