Transcript Slide 1

The Social Care and Support Needs of
Adults with Dementia and Sight Loss
Karen Croucher, Research Fellow
February 2015
www.york.ac.uk/chp
About the research
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“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”
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Funded by National Institute for Health Research School
for Social Care Research
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Methods
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Qualitative interviews with people living with dementia
and sight loss living in different housing settings
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Focus groups and interviews with practitioners
www.york.ac.uk/chp
Prevalence of dementia and sight loss
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2 million people in the UK living with serious sight
loss
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1 in 10 people aged 75+ has a significant visual
impairment, rising to 1 in 3 aged 90+
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Over 100,000 people aged 75 + have concurrent
dementia and sight loss
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Sight loss experienced “differently” depending on
cause
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Sight loss and dementia experienced “differently”
depending on which condition comes first
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Living with dementia and sight loss
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Care needs exacerbated by having both
conditions as well as other co-morbidities
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Value placed on independence
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Difficulties in “learning” new skills or adapting
to change, for example, using assistive aids
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Social activities not accessible due to sight loss
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Management of finance
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Going out problematic
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Reassurance and description
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Example 1
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“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?...”
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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”.
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Services for people with dementia and
sight loss
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Both conditions tend to be under-diagnosed, and there
can be additional challenges to diagnosis if someone
already has one condition
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Current models of care and support tend to focus on
dementia and sight loss separately
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Low level of professional knowledge about conditions
(and services) beyond their expertise
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Lack of joint working in some areas
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Various aids (often quite simple) and adaptations are
used to support independence and promote safety
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Lack of joint working across services
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Level of care and support services used:
Provider of
care/service
Help provided
with
Number
receiving
Social services
(carers in the
home)
Personal care,
preparing food,
taking medications
14
Social services
(daycentre)
Social services
(respite care)
Friend or relative
(unpaid)
Meals, company,
3
help with living
All aspects of living 1
Personal care,
8
shopping,
housework, taking
medications
Volunteer (unpaid) Respite care,
4
advice and support
Private contractors Cleaning and
11
gardening
Source:
Average number
of hours/ week,
per participant
receiving
7.0
Average Who pays
cost per for it?
hour
21.0
£8.57
12.9
£4.58
Social
services
or
recipient
Social
services
Recipient
3.1
n/a
n/a
2.8
n/a
n/a
2.1
£10
Recipient
8
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£18
Interviews with people with sight loss and dementia, 2013
Facilitators to meeting needs
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Familiarity and consistency: people and place
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Living at home
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Same staff visiting to provide care
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Support from partner
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Support from family, friends, neighbours,
volunteers
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Public environments with convenient transport
and accessible toilets facilitate social participation
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Supported housing settings particularly for people
living alone
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Vignettes
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What “housing” solution would work best for case
studies?
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Staying put or moving? Aids, adaptations?
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What other services might help them?
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Current/most recent extra care scheme – how
would this work for the people described here?
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Design, care, support, social activities?
Do you know what is available locally to support
people with dementia and sight loss?
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Recommendations (1)
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Timely diagnosis for both conditions
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Assessment drawing on expertise of dementia
and sensory impairment practitioners
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Aim to preserve independence where possible
and practical
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Information and support – on-going as needs
change
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Regular, dementia-friendly eye examinations
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Simple strategies in response to sight problems:
improved lighting, the “right” glasses
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Recommendations (2)
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Better joint working and skills sharing
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Practical assistance by familiar staff
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Variety of options to meet carers’ preferences for
support
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More social and cognitive stimulation and
enjoyable activities that are accessible to people
with dementia and sight loss
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Aids and environmental adaptation introduced
early to embed in daily routines – and kept simple
where possible
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Project Team
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Karen Croucher and Mark Bevan, CHP
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Julie Barrett, Housing and Dementia Research
Consortium
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Sarah Buchanan, Thomas Pocklington Trust
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Anna Clarke, University of Cambridge
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Simon Evans and Jennifer Bray, University of
Worcester
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Anthea Innes, Samuel Nyman, and Michelle
Heward, Bournemouth University
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Disclaimer
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This presentation reports independent research
commissioned and funded by the Department of
Health’s National Institute for Health Research
School for Social Care Research.
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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
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Thanks for listening
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[email protected]
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https://www.york.ac.uk/chp/
www.york.ac.uk/chp