The social care and support needs of adults with concurrent dementia and sight loss.

Authors: Nyman, S.R., Evans, S., Innes, A., Bray, J. and Heward, M.

Conference: Alzheimer Europe conference

Dates: 20-22 October 2014


Rationale Over 100,000 people in the UK have concurrent dementia and sight loss, resulting in isolation, falls, and reduced independence. This study explored the lived experience of people with both dementia and sight loss and the views of professionals to help drive forward improvements in social care and support for the growing number of people living with both conditions.

Methods We conducted 26 qualitative face-to-face interviews with people with dementia and sight loss and their carers, and focus groups with 47 relevant health, social care, and housing professionals across three sites in the UK. Each interview and focus group was analysed thematically using NVivo.10 software. The aims and objectives for the project were used to create a framework for the analysis (see 1-5 below).

Findings [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.

Conclusion We propose several recommendations to improve social care and support, including timely diagnosis for both conditions, and a greater focus on holistic care rather than support for one condition over the other.

Source: Manual

Preferred by: Samuel Nyman