The social care and support needs of adults with concurrent dementia and visual impairment.
Authors: Bray, J., Heward, M., Evans, S., Nyman, S.R. and Innes, A.
Conference: UK Dementia Congress
Dates: 10-12 November 2014
Abstract:Background Over 100,000 people in the UK have concurrent visual impairment and dementia, resulting in isolation, falls and reduced independence (Whitson et al. 2007). However, current models of care and support tend to focus on each condition separately, meaning that individual needs are rarely addressed. This can lead to high levels of anxiety and distress as well as placing great demands on carers and highlighting the need for support for informal carers and separate assessment of carer’s needs. Aims and research questions This presentation reports on a new study that explored the lived experience of people with both dementia and visual impairment and the views of professionals, in order to help drive forward improvements in social care and support for the growing number of people living with both conditions. The project aimed to investigate how best to provide care and support for adults living with visual impairment and dementia in a range of housing settings, and develop evidence-based practice guidance to improve social care and support for people living with both conditions.
Methods We conducted 26 qualitative face-to-face interviews with people with dementia and sight loss, sometimes with their family carers, In addition, focus groups were held involving a total of 47 health, social care and housing professionals, using a semi-structured topic guide developed by the project team. Participants were recruited across three sites in England: the North East, the South West and the Midlands. Each interview and focus group was analysed thematically using computer assisted qualitative data analysis software. The aims and objectives for the project were used to create a framework for the analysis (see 1-5 below). Emerging themes were compared and discussed by team members in order to validate the findings.
Results [1] Social care needs: Care needs were exacerbated by having both conditions as well as comorbidities. This included struggling to remain independent and engaged in meaningful activities.
[2] Social care needs of carers: Early diagnosis of both conditions was important but often difficult to obtain. Carers were concerned about their ability to continue to afford and provide informal care.
[3] Current models of care: Care needs were being met through a range of sources, primarily help with daily tasks such as grocery shopping and respite for the carer.
[4] Barriers: Several barriers were identified, such as low awareness among professionals, inconsistency in service provision, difficulty in using assistive aids, and the expense of visual impairment aids.
[5] Facilitators: Public environments with convenient transport and toilets facilitated social participation. Appropriate housing enabled independent living, partly due to living in a familiar home environment. Discussion and conclusions Our findings were discussed at a consensus event that included people with dementia and sight loss, family carers and professionals working in housing, health and social care. This led to the development of a set of recommendations for improving social care and support for people with visual impairment and dementia. These include timely diagnosis for both conditions, and a greater focus on holistic care rather than support for one condition over the other.
Limitations This was a small scale study across three research sites within the UK. The findings are based on a self-selecting sample of people with dementia and visual impairment and professionals, who may not be representative of service users more generally. Reference Whitson, H., Cousins, S., Burchett, B., Hybels, C., Pieper, C. and Cohen, H. (2007) The Combined Effect of Visual Impairment and Cognitive Impairment on Disability in Older People, Journal of the American Geriatrics Society, 55. 6, pp 885-891
Source: Manual