Karen Croucher, Research Fellow February 2015 The Social Care and Support Needs of Adults with Dementia and Sight Loss Karen Croucher, Research Fellow February 2015

About the research “How can adult social care and support practice best contribute to the provision of high quality, cost effective care and support for people with sight loss and dementia” Funded by National Institute for Health Research School for Social Care Research Methods Qualitative interviews with people living with dementia and sight loss living in different housing settings Focus groups and interviews with practitioners

Prevalence of dementia and sight loss 2 million people in the UK living with serious sight loss 1 in 10 people aged 75+ has a significant visual impairment, rising to 1 in 3 aged 90+  Over 100,000 people aged 75 + have concurrent dementia and sight loss Sight loss experienced “differently” depending on cause Sight loss and dementia experienced “differently” depending on which condition comes first

Living with dementia and sight loss Care needs exacerbated by having both conditions as well as other co-morbidities Value placed on independence Difficulties in “learning” new skills or adapting to change, for example, using assistive aids Social activities not accessible due to sight loss Management of finance Going out problematic Reassurance and description

Example 1 “But with Pops you see, his sight, he hasn’t got that visual has he, that visual aid to react to his memory, to kick in that memory….With Dad, even if he had something like a switch on the wall in places like this that told him what day it was, by the time he got to the door he’d’ve forgotten, so that is another difficult thing that, you know, it’s so difficult to actually stimulate the brain and the memory, because of the lack of sight… Because we’ll be asked the same question, 2 minutes later, all through Saturday won’t we?...”

Example 2 “Now, I can listen them [talking books], and mind I fall asleep sometimes, but I can listen to them … if I, if I get really interested in it you start, you know, get going, say [husband] has gone out and I put one in, and I listen, and I get really interested in it, but, then you see, when I knock it off to have a rest from it, I've forgotten what’s there to start with and I've got to think”.

Services for people with dementia and sight loss Both conditions tend to be under-diagnosed, and there can be additional challenges to diagnosis if someone already has one condition Current models of care and support tend to focus on dementia and sight loss separately Low level of professional knowledge about conditions (and services) beyond their expertise Lack of joint working in some areas Various aids (often quite simple) and adaptations are used to support independence and promote safety Lack of joint working across services

Level of care and support services used: Provider of care/service Help provided with Number receiving Average number of hours/ week, per participant receiving Average cost per hour Who pays for it? Social services (carers in the home) Personal care, preparing food, taking medications 14 7.0 £18 Social services or recipient Social services (daycentre) Meals, company, help with living 3 21.0 £8.57 Social services Social services (respite care) All aspects of living 1 12.9 £4.58 Recipient Friend or relative (unpaid) Personal care, shopping, housework, taking medications 8 3.1 n/a Volunteer (unpaid) Respite care, advice and support 4 2.8 Private contractors Cleaning and gardening 11 2.1 £10 Source: Interviews with people with sight loss and dementia, 2013

Facilitators to meeting needs Familiarity and consistency: people and place Living at home Same staff visiting to provide care Support from partner Support from family, friends, neighbours, volunteers Public environments with convenient transport and accessible toilets facilitate social participation Supported housing settings particularly for people living alone

What “housing” solution would work best for case studies? Vignettes What “housing” solution would work best for case studies? Staying put or moving? Aids, adaptations? What other services might help them? Current/most recent extra care scheme – how would this work for the people described here? Design, care, support, social activities? Do you know what is available locally to support people with dementia and sight loss?

Recommendations (1) Timely diagnosis for both conditions Assessment drawing on expertise of dementia and sensory impairment practitioners Aim to preserve independence where possible and practical Information and support – on-going as needs change Regular, dementia-friendly eye examinations Simple strategies in response to sight problems: improved lighting, the “right” glasses

Recommendations (2) Better joint working and skills sharing Practical assistance by familiar staff Variety of options to meet carers’ preferences for support More social and cognitive stimulation and enjoyable activities that are accessible to people with dementia and sight loss Aids and environmental adaptation introduced early to embed in daily routines – and kept simple where possible

Project Team Karen Croucher and Mark Bevan, CHP Julie Barrett, Housing and Dementia Research Consortium Sarah Buchanan, Thomas Pocklington Trust Anna Clarke, University of Cambridge Simon Evans and Jennifer Bray, University of Worcester Anthea Innes, Samuel Nyman, and Michelle Heward, Bournemouth University

Disclaimer This presentation reports independent research commissioned and funded by the Department of Health’s National Institute for Health Research School for Social Care Research. The views expressed are those of the authors and not necessarily those of the NIHR School for Social Care Research, or the Department of Health, NIHR, or NHS

Thanks for listening Karen.Croucher@york.ac.uk https://www.york.ac.uk/chp/