Connecting Communities Making Girvan and South Carrick Safer

Connecting Communities: Making Girvan and South Carrick Safer and Friendlier for Everyone Melody M Terras, Gillian Hendry, Dominic Jarrett and Roddy Mac. Donald Research Context Methodology • People with a learning disability experience high levels of community exclusion 1 and also evidence increased prevalence of dementia and a greater risk of early onset dementia compared to the general population 2. • 13 interviews and 2 focus groups were conducted with people with a learning disability or dementia; carers, and community members. • Although communities recognise the needs of aging populations, the community challenges which dementia presents for maintaining involvement have particular resonance for people with a learning disability. • If community development work is to be fully inclusive, then the needs, preferences and expectations of people with a learning disability and/ or dementia, and their carers, must be considered 3. Project Aims • This project reflects a novel partnership between the University of the West of Scotland, a community group (Girvan Town Team), and others, which focused on exploring the views of people with a learning disability, dementia, their carers and a range of community stakeholders, in order to inform the development of Girvan as a safer and friendlier community through asking the following questions: Ø What are the key issues that people with a learning disability and/ or dementia, and their carers, face in community settings? Ø How do community members perceive the needs of people with a learning disability and/ or dementia? Ø What support is required to accommodate the needs of individuals with a learning disability and dementia within the safer and friendlier community initiative? • Discussions were audio-recorded, transcribed and thematically analysed using a framework approach 4. Findings • Three themes were identified, as detailed below: (1) Barriers Sub-themes: Stigma and prejudice, Limited Access to transport and information, low self-worth • “For the general population there’s a bit about… breaking down stereotypes and stigmas and sort of misconceptions about people with learning disability and a bit of learning” • “we’re very rural… and there are issues with transport which make it difficult to access the services that they need” (2) Inclusion Sub-themes: Awareness, Opportunities, Choice, Importance of community participation • “As an area we need to maybe raise a bit more awareness among young people” • “Some people don’t want to go to a ‘special’ thing, some people just want to go to what everybody else goes” (3) Support Sub-themes: Reliance on Support, Carer burden, Importance of carer support • “the supports are hugely important for people who’ve got them, and I totally agree: without support, our client group would be very, very isolated” • “there needs to be somewhere or some kind of group that carers can go and access information, access where they can get help” Planning For The Future • Community participation was limited by practical and attitudinal barriers e. g. negative community perceptions and the poor self-perceptions with people with a learning disability who do not feel valued members in their community which in turn limits their participation 5. • Many individuals rely heavily on carers who already experience a high burden, so support for carers is essential 6. • Findings are consistent with the existing literature and indicate that individuals with dementia and learning disability may be doubly disadvantaged with respect to community involvement 7. • This project has informed a Community Action Plan focusing on four main areas for community development: (1) Education and awareness raising concerning the needs of people with learning disabilities and/ or dementia, (2) A (realistic) focus on transport issues, (3) Acknowledging the needs of carers and (4) The future-proofing of all initiatives. These areas will further explored in a community conference. References 1. Amado et al. (2013). Social inclusion and community participation of individuals with intellectual/developmental disabilities. Intellectual and developmental disabilities, 51(5), 360 -375. 2. Zigman et al. (1996). Prevalence of dementia in adults with and without Down’s syndrome. Am. J. Ment. Retard, 100, 403– 412. 3. Walker, C. (2015). Ageing and people with learning disabilities: in search of evidence. British Journal of Learning Disabilities, 43(4), 246 -253. 4. Gale, N. K. , et al. (2013). Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Medical Research Methodology, 13(1), 117. 5. Craig, D. , & Bigby, C. (2015). “She's been involved in everything as far as I can see”: Supporting the active participation of people with intellectual disability in community groups. Journal of Intellectual and Developmental Disability, 40(1), 12 -25. 6. Cleary, J. , & Doody, O. (2017). Professional carers’ experiences of caring for individuals with intellectual disability and dementia: A review of the literature. Journal of Intellectual Disabilities, 21(1), 68 -86. 7. Innes, A. , Page, S. J. , & Cutler, C. (2016). Barriers to leisure participation for people with dementia and their carers: An exploratory analysis of carer and people with dementia’s experiences. Dementia, 15(6), 1643 -1665. Acknowledgement: This work is supported by the RS Mac. Donald Charitable Trust (seedcorn grant) and distributed through host organization Alzheimer Scotland Centre for Policy and Practice, University of the West of Scotland. . For more information contact: melody. terras@uws. ac. uk