Approximately 55 million people live with dementia globally, with over 60% in low- and middle -income countries. As the ratio of older people in the population increases in nearly every country, this number is expected to rise to 78 million in 2030 and 139 million in 2050. Little is known about the prevalence of dementia or its impact on older adults living in low- and middle-income countries (LMICs), including South Africa (SA). In SA’s multicultural context, different cultures understand the expression of dementia in different ways – another stumbling block in addressing dementia in SA. Appropriate health promotion strategies and education should be conducted, and further research should be done into dementia in SA. The Voices For Hope (VFH) programme was launched by Dementia Singapore to empower persons living with dementia (PLWDs) and their carers to become self-advocates. First introduced in 2019, the VFH programme has since seen seven cohorts of participants graduate and become involved in dementia advocacy. As self-advocates, persons with dementia and their caregivers use their voices to represent themselves and the people they are caring for to express their views, needs for services, and to increase community awareness. It was evident that the peer support that PLWDs and their carers gained through joining the program was very valuable to them. They also became passionate about contributing to dementia advocacy.
Working with the support of Dementia Singapore, this pilot looks to culturally adapt and test the model of VFH with the Bessie Makatini Foundation (BMF) in Durban, SA. The aim is to amplify the voices of PLWDs and carers in SA to empower PLWDs and carers to build self-advocacy journeys, tapping on experiences to increase awareness and knowledge around dementia in SA.
To achieve that, the project includes three main phases:
1) Service design and knowledge exchange.
2) Capacity building, toolkit development.
3) Evaluation, dissemination, scaling up.
Phases involve four main activities:
a) Consultations, pre-assessment, needs assessment, service design with BMF.
b) Intervention planning, pilot VFH via a 6-10 week workshop with five pairs of PLWDs and carers, post-assessment.
c) Impact Assessment, Evaluation Report.
d) Dissemination: output of materials to be offered as open access via a website, ‘voices’ will be featured on the website as well as a call-to-action to encourage professionals to tap into resources to roll-out VFH in local communities.