HOUSING AND DEMENTIA by mikeholy

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									                                  HOUSING AND DEMENTIA

                            INFORMATION SHARING SEMINAR

                                       14TH AUGUST 2007

INTRODUCTION

This seminar was arranged to follow up a survey about the levels of knowledge,
information and skills within various aspects of service provision for people with
dementia living in their own homes. Invitations were extended to individuals and
organisations who were part of, or aware of, relevant research and projects. It
brought together professionals and experts in the fields of housing, dementia care
and research, providing an opportunity for networking, finding out who was doing
what, exploring some of the issues, and also stimulating collaborative working in
areas where gaps were identified.

PARTICIPANTS

The seminar was chaired by Steve Ongeri, an independent housing consultant.
Twenty-five people from a range of backgrounds attended. See attached list. Many
who were invited and couldn’t attend have requested to be kept in the loop.

SESSION 1: SETTING THE SCENE

Sue Garwood set the scene by outlining the role of the Housing LIN and CSIP in
promoting practice improvement and development through improving networks,
building up and disseminating information, and organising events.

She picked out a number of priorities which emerged from the survey:

        Top research priorities
            o Comparison of suitability, costs and benefits of different
                services/combinations for people with dementia at different stages of
                the condition
            o Cost and effectiveness of different models of Extra Care for people
                with dementia
        Two templates
            o A cost effectiveness template
            o An evaluation template for different models of Extra Care
        The need for an up-to-date good practice guide for housing practitioners and
         managers

Two other messages emerged from the survey:

        The perceived value of both research results and learning from others’
         practical experience
        The need for cross-fertilisation between different sectors and professionals

Sue described the one-stop Housing and Dementia web-page being developed for
the Housing LIN, and invited participants to e-mail her details of any additional
information of interest:




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        Dementia-specific research and information which may be of value to housing
         sector staff and those developing housing related services for people with
         dementia
        Information targeted at both the housing sector and those in the dementia
         field on housing-related services for people with dementia

Action: Participants to e-mail Sue details at Sue@suegarwood.co.uk

Note

The subsequent discussion sessions were based loosely on a written framework
defining the topic and giving examples of existing material and key questions. The
information imparted in each of these three sessions has been recorded under each
topic heading. However, summaries of discussions on a range of issues have been
clustered together after the write-up of the three sessions.

SESSION 2: SERVICE INITIATIVES FOR PEOPLE IN THEIR OWN HOMES
INCLUDING EXTRA CARE

Information on Initiatives and Research

PSSRU work

Philippa Hare: PSSRU is doing a major project evaluating DH-funded Extra Care
schemes. JRF is funding PSSRU to do an additional element comparing before and
after costs at a Methodist Homes Extra Care scheme, where 15 out of the 42 units
have been designated for people with dementia.

ECCT – Enriched Opportunities Programme

Dawn Brooker and Lorraine Haining: Research into the impact of the programme
across 10 housing schemes, 5 of which have staff trained to deliver the enriched
programme and five of which just have extra staffing. There are five elements:
    Specialist expertise: “Locksmiths” – In-house specialists trained to unlock the
       potential of each individual
    Individualised assessment and casework with individuals to enable living in a
       state of optimal well-being. Close liaison with MHTs
    Activity and occupation that is varied, and integrates the person into the
       community
    Staff training to ensure that all staff have the necessary skills to support the
       programme
    Management and leadership both at an organisational level and at scheme
       level

All staff have received Person Centred Care training, not only care staff.
Challenge of defining measurable outcomes (covered in Session 3)
Research element likely to be completed mid 2009.

Home Solutions 2

Sylvia Cox’s book on a number of housing-based dementia initiatives. Sylvia
commented that there appears to have been little movement over a five year period –
“something about the will and the way”. Some of the complexities around who is
responsible for what – housing, housing-related services, care etc – may be part of
the problem.


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Preventative Role of Small Agencies such as HIAs

Lisa Dale: Lisa drew attention to the valuable contribution made by small
organisations such as home improvement agencies in supporting people to continue
living independently at home. The dilemma for commissioners of focusing on the
most vulnerable rather than those who could be supported to remain independent for
a longer period remains an issue.

Newcastle Dementia Care Partnership

Rani Svanberg: An initiative developed in response to the expressed needs and
wishes of people with dementia and their carers. It combines a diverse range of
provision including: supported group housing; specialist 24 hour domiciliary care;
carers’ support groups; respite care; resource centre providing day provision,
restaurant, opportunities to meet and mix with other generations and the wider
community, advice etc. The services, now being developed as social enterprises, are
based on a profound belief of people with dementia as citizens and contributors to
society, and a commitment to people having a home for life. The PEACH philosophy
underpins the initiative – Person-led, Empowerment, Attachment, Continuity and
Hope

Strategies and Reports

Ruth Eley mentioned that the newly announced dementia strategy will not just be
about specialist services for people with dementia, but also how mainstream services
can benefit people with dementia. The national strategy for Housing in an Ageing
Society will need to take into account the multiplicity of needs of needs older people
may develop, including those deriving from dementia.

Jane Gilliard mentioned the second report from the UK Inquiry into Mental health and
Well-Being in Later Life, “Improving Services and Support for Older People with
Mental Health Problems” which contains a number of recommendations of relevance
to the housing sector.

SESSION 3: PRACTICE, POLICIES AND TRAINING FOR THOSE PROVIDING
HOUSING SERVICES TO PEOPLE WITH DEMENTIA

Examples

Training Material

Beth Noray has developed a workbook for practitioners in the housing sector. It is
designed to be worked through with a supervisor and can be supported by video
material. She is also developing an on-line course at induction level, currently aimed
at residential workers, but is interested in developing it for the housing sector.
Action: Beth to think about availability

Good practice guide for Home Improvement Agencies
Lisa Dale has developed a guide for HIAs on working with people who have
dementia. Available from Foundations.

Well-being Research

Simon Evans: The JRF has funded research into social well-being in Extra Care
Housing. The findings are due to be published on 31st August on the JRF website.


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Six main factors have been identified in supporting good practice:
     Activities and other opportunities for social interaction
     Facilities
     Built environment – both within the scheme and its interface with the wider
        environment
     Culture of care
     Engagement with the wider community?
     Encouraging family carers to maintain contact
A discussion group is meeting on the 4th October to turn the research into accessible
guidelines.

Talking Mats Research

Philippa Hare and Sylvia Cox: Talking mats are a low tech communication tool using
pictures and symbols of happy, sad and neutral faces to facilitate a conversation. It
has been tested out with people who have a range of conditions, most recently those
with dementia. Its focus thus far has been on facilitating well-being decisions. It has
proved effective in the early and moderate stages of dementia, and to a lesser
degree for those in more advanced stages.

This may be a helpful tool to aid decision-making. It can be used in any setting.
People do need training to use it. There is a training day on 7th September in York.
Action: Other training days will be included in the events section of the newly
configured Housing LIN “Housing and Dementia” web-page.

Electronic Scrapbook

Peter Lansley and Tim Adlam mentioned an EPSRC-funded multi-media gadget
comprising a small box, screen and buttons. It is based on reminiscence and has
proved very effective in helping people in care homes to converse and be
entertained. It is part of the CIRCA project.

Gaps

Good Practice Guide

General acceptance of the need for up-to-date good practice guidance for housing
sector staff working with people who have dementia, covering the range of issues
identified in the housing and dementia survey. JRF is interested in funding the
development of such a guide.

Assessment skills

Beth Noray, who trains staff in dementia care across sectors, commented on the
exceptionally poor quality of assessments undertaken; the lack of understanding of
dementia and the implications for choices and decisions. Beth is working to develop
an assessment tool to assist.

Dawn Brooker reported that Hazel May is working on a person-centred assessment
tool which is likely to be published by Jessica Kingsley in 12 months
Initiatives to encourage early diagnosis in housing schemes

Andrew Ketteringham: Recent reports have highlighted the number of people whose
dementia is not diagnosed, with significant local variations. There are many


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advantages to early diagnosis. Andrew feels housing staff are often in contact with
people who may have dementia (or other mental health problems) and may not be in
touch with their GP. It would help if housing staff encouraged residents with possible
signs and symptoms to access diagnosis.

Outcome Measures

Dementia Care Mapping tools – Sue Garwood commented that CSCI were now
using an observational tool based on DCM to assess well-being in homes they are
inspecting, and wondered whether one was available for use in a housing setting –
assessing the well-being of people with dementia is vital both to day-to-day practice
and cost-effectiveness research. Dawn Brooker updated the group on the DCM tool:
     Update completed 2005
     Person-centred empathetic observation
     Inclusive and empowering. Would not use if it upset anyone
     Designed for observation with a group, therefore can only be used when
       tenants in communal areas
     Needs to be triangulated with other outcome measures, particularly if only
       brief snapshot. That is the way the CSCI tool, SOFI, will be used.
     Danes use it as part of professional development to observe interaction
       between staff member and client
Beth Noray suggested that DCM could be combined with well-being/ill-being profiling
and forward planning

Other outcome measures being used in the Enrichment Programme include:

        Quality of Life Instrument – (D-QOL) (Brod, Stewart, Sands, & Walton, 1999)
        Barthel Index of Activities of Daily Living (BAI).
        BADLS (Bristol Activities of Daily Living Scale) (Bucks, Ashworth, Wilcock, &
         Siegfried, 1996; Byrne, Wilson, Bucks, Hughes, & Wilcock, 2000).
        Number of activities taken up in the last 4 weeks
        Residents’ rating of enjoyment of activities
        Structured interviews
        Focus groups of residents and staff
        EQ-5D – a standardised instrument for use as a measure of health outcome
         developed by the EuroQol Group.
        Case studies

Service provision for people from ethnic minorities

Rani Svanberg made a plea for services which catered for people with dementia from
BME communities.

SESSION 4: DESIGN, BUILT ENVIRONMENT AND ASSISTIVE TECHNOLOGY

Examples and Resources

Assistive Technology

Tim Adlam has been involved in developing user-friendly assistive technology for
people with dementia since 1999. They have been working to develop interfaces that
don’t look unfamiliar, and seek to intervene at an early stage. They are now
evaluating it in people’s homes in the dispersed community, and in Extra Care
settings. They have just completed a study following the impact for one person,
family and staff over a year.


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Design

Philippa Hare: Alzheimer’s Society and Stirling University sites have good reading
lists

Liz Taylor: The Suffolk Design and Management Guide Dementia Bolt-on has been
developed on the basis of learning from experience and what staff and service users
have fed back.

Peter Lansley: EPSRC has funded quite a lot of research into care home design, and
some lessons may be transferable to the housing sector. There has also been
research in other countries which is relevant.

?Syvia Cox: Oxford Brookes has developed a guide to design and management of
the outdoor environment

Sue Benson: Fold Housing Extra Care scheme, Seven Oaks is designed to prompt
local recognition and incorporates interesting walking circuits

Steve Ongeri: A book by Kelaha and Hanson on designing housing for people that
can adapt as people’s needs change

Gaps and Challenges

Assistive Technology

Tim Adlam identified a range of gaps or challenges in this context:

        Proven Impact – Outcome measures are needed to assess the impact of the
         technology. Tim is keen to work with others to evaluate the impact of
         technologies
        In one particular AT pilot project, the organisational challenges across health
         and social services are greater than the technological challenges
        Skill-set gap. Not many people know about both dementia and the
         technologies. OTs need training in the applications, and the people installing
         and providing technical support need training in dementia

Judith Whittham reported that a group is looking at developing Assistive Technology
competences. See FAST website.

Rani Svanberg: As also identified in the housing and dementia survey, if AT is to be
mainstreamed, those undertaking assessments such as social workers, need to be
educated in the technologies – and risk assessment

See Design discussion in the next section


DISCUSSION OF ISSUES FROM ALL THREE SESSIONS

Cost effectiveness

Judith Whittam made the point that with the growth in self-directed provision, not only
must the individual be informed of the range of alternatives, but also has to know the
unit cost and what is provided for that money. The personalisation agenda may help
provide incentives for breaking down unit costs.

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Sue Garwood made the point that evidence of effectiveness and costs were not only
needed for individuals. Commissioners still had to develop/commission services at a
macro level so that individuals have services to choose from. Evidence of cost
effectiveness is needed to inform those macro decisions as well.

Peter Lansley said that models for comparing costs had been developed for
comparing the cost of care packages, and could be extended to include people with
dementia.

Despite some examples of cost effectiveness studies, the consensus seemed to be
that these were patchy.

A comparison at a point in time between current costs and what these may be in
other settings, or with other services, does not give a complete picture. Ideally costs
need to be looked at over the whole span that someone has dementia and also take
into account the quality of life that the expenditure has enabled. This makes already
complex research methodology even more challenging.

Sylvia Cox made the point that the additional costs invested, for example in the
ECCT Enrichment programme, needed to be calculated, as commissioners and
users need to know. Given that a move into a care village is a lifestyle choice, people
may not be willing to pay extra for a quality service which they don’t see as relevant
to them. Stigma also plays a part.

Research

Some frustration was expressed that there was insufficient research, large enough in
scale, to enable comparisons and inform development and practice.
Some of the impediments may be:
    Expense involved in large scale research with interviews etc
    Competition amongst researchers and providers
    Complexity due to differences in models and approaches
    Defining meaningful methodology and measurable outcomes for people with
        cognitive impairment and communication problems

David Williams expressed a sense of “tinkering at the edges” and wanted to join
forces with others to do large scale multi-site research which would properly evaluate
projects across a range of providers and models.

Peter Lansley believed there was money available from, for example, the
Engineering and Physical Sciences Research Council, but proposals were not
coming forward. He believes that the Council is “crying out for these social issues to
come forward”. However, part of the problem may be that the physical environment
and its management is only a small part of the research focus needed, and it may be
necessary to secure joint funding, from - for example - the Department of Health.

He also believed that there was a lot of relevant research out there which was
relevant to housing and dementia but appreciated that it may not be readily
accessible or comprehensible. Sue Garwood asked him to point her in the right
direction so that relevant findings could be included on the Housing and Dementia
web-page.




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Dissemination of Research and Embedding it into Practice

This topic generated a lot of discussion and is clearly a major issue – one which
needs to be addressed urgently and in which CSIP and the LIN networks can play an
important part.

Peter mentioned that in the field of science research it is recognised that for every £1
spent on research £10 was needed for dissemination and £100 was needed for
implementation. He saw no reason why this would be different in the context of social
research.

Academic research papers can be difficult to read and there is a role – one that
CSIP is already doing to a degree – in “re-packaging” evidence to make it accessible.
However, it needs then not only to be made widely available, e.g. through a range of
networks, websites, newsletters etc. It needs to reach target groups who may not join
networks. Furthermore, research messages need to be embedded into practice
through presentations, training, toolkits etc.

There was also agreement that training on its own is insufficient. Staff need
management to support good practice and training needs to be backed up with
access to “bite-size” reminders.

Stigma

A range of issues arise from the stigma attached to dementia. People don’t want to
be labelled as someone with dementia, or contemplate a time when they may
possibly develop the condition. When people feel less stigmatised and become more
visible, they may make more rather than less use of resources. This, whilst improving
their well-being may be of concern to those seeking to reduce costs. Similarly,
empowering people can give rise to a different range of challenges, like dealing with
the attitudes of other residents. Judith Whittam gave the good practice example
example of a scheme in Warrington which has a resident welcoming programme and
the fact that someone has dementia is openly talked about. Beth Noray has provided
training to residents on how to support fellow-residents with dementia.

Design

Design issues prompted a lot of debate:

1   Whether a body of evidence based on research exists to inform housing design
    for people with dementia
2   Whether some minimum standards and principles for dementia design would be
    useful – and even whether they already exist or not
3   Dementia-specific vs inclusive design and related matters

Sufficient Evidence?

Some felt there was evidence, albeit that it may not be in readily usable form, or not
derived from pure research. Probably the balance of voiced opinion was that the
evidence is insufficient and patchy, and more is needed about the impact on
individuals. Jane Gilliard summarised the conclusion when she said the answer to
the question was probably “yes and no”. For example there is a very good piece of
research which correlates lighting levels with calorific intake. As Simon Evans
concluded, there are lots of little bits done on a small scale but no systematic
analysis of the results, or synthesis into guidance.


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Minimum Standards
On the issue of minimum standards, the seemed to be strong support for the need for
these, despite one or two views that these already existed. Sylvia Cox made the
point that providers are having to juggle pressures from all quarters, many of which
may not be complementary, and a set of minimum standards would help providers to
decide whether or not to go down a particular path or not. Whilst enabling individuals
to choose – for example wall-paper – is a good principle at an individual level, when
embarking on a new development, commissioners and providers have to make
fundamental decisions for the whole scheme. Liz Taylor made the point that the
regulatory environment, and the way CSCI sometimes interprets the Care Standards
Act, means that this too should be taken into account.

Designing specifically for dementia

All agreed that design needs to enhance well-being. Lorraine Haining pointed out that
buildings can impede good care, but can’t make it good. Whilst no-one demurred
from the goal of all new homes being developed to life-time home standards, Sue
Garwood made the point that if people in the more advanced stages of dementia are
compelled to move for whatever reason, the ideal design for them may be different in
some respects, for example facilities, scale and visibility. Sylvia Cox and Philippa
Hare favoured flexible designs capable of changing as needs change, for example
replacing opaque panels with glass. Steve Ongeri introduced the concept of inclusive
design, intended to meet the requirements of everybody and take a whole range of
impairments into account. Lisa Dale referred to the “elephant in the room” – existing
owner-occupied housing. With privately owned homes, however, the design is
essentially already there, you cannot tell house-owners what to do, and, in existing
homes familiarity may be more important to people with dementia than specific
design features. It seemed to make sense therefore to concentrate initially on design
for new-build. Steve Ongeri concluded that if there was a demand for housing
designed for people with dementia, builders were likely to respond.

SESSION 5: WHERE TO FROM HERE?

Consortium or Strategy for Research into Housing with Care and Dementia

Rachel Dutton summarised the position: Investment in research hasn’t been very
large, there is still much to learn and SCIE guidance makes it clear that there is little
evidence to guide commissioners in what services to develop. Dementia Voice is
keen to use its expertise in research that has maximum impact. In order to achieve
the scale of research projects needed, a collaborative approach between providers is
desirable.

It was agreed therefore that Dementia Voice, with the backing of the Joseph
Rowntree Foundation, would set up another seminar to brainstorm the actions and
mechanisms needed to make an impact on the evidence gap. This might include
defining the terms of reference for a consortium of providers, researchers,
commissioners and funders whose focus is likely to be:

        Research into housing with care for people with dementia
        Research areas addressing current fundamental issues as defined by the
         sector
        Research to be practical and reality-based so that the findings can influence
         service development at a macro level and practice at an individual level
        The process for embedding findings into practice


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Action:

        Dementia Voice to arrange a further event

Housing and Dementia Special Interest Group

The focus of the proposed consortium needs to be quite clearly defined and limited in
order to achieve its aims, but there was recognition that there were other important
agendas within the context of housing and dementia.

Those present found the exchange of perspectives very valuable and felt a regular
event to enable such discussion, perhaps annually, would be a good idea.

There was recognition that a lot more people than were present may be interested in
participating. Events might therefore need to be more frequent, or larger.

It was suggested that the names of members should be listed, and their particular
areas of interest recorded, to enable individuals within the group to contact one
another on that basis.

Those present agreed to send Sue Garwood information on any events, new
research or developments relevant to housing and dementia.

Sue G agreed to keep members on a mailing list and send an alert out to members,
no more frequently than monthly, just drawing their attention to any such events and
developments. These will still be appear in the relevant CSIP/network newsletter and
website but the alert will fulfil a filtering function for members.

The suggestion was made of using telephone conference call technology.

Action:

        Participants who wish to be members of the interest group to confirm so in e-
         mail to Sue and give a thumbnail sketch of areas of interest

        Participants to alert Sue of any new developments as they arise

        Sue to send out alerts at intervals

        Sue to ensure inclusion on the Housing and Dementia web-page of the
         initiatives mentioned at the seminar. Participants to send Sue details if she
         doesn’t already have them.

        Finally a reminder: Participants to send Sue links to any information which
         would be usefully added to the Housing and Dementia web-page as well as
         any comments on the draft




Sue Garwood
CSIP Associate
sue@suegarwood.co.uk



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        HOUSING AND DEMENTIA INFORMATION SHARING
                        SEMINAR

                            Tuesday 14th August 2007

                                        DELEGATE LIST

Name                       Organisation                       Email
Sue Benson                 Journal of Dementia Care           sue@hawkerpublications.com
Dawn Brooker               Bradford University                D.J.Brooker@Bradford.ac.uk
Sylvia Cox                 Independent                        sylvia.cox@googlemail.com
Rachael Dutton             Housing 21                         Racheal.Dutton@HOUSING21.CO.UK
Lisa Dale                  Foundations                        LDale@cel.co.uk
Simon Evans                University of the West of          simon.evans@uwe.ac.uk
                           England
Val Ellis                  Joseph Rowntree
                           Foundation
Ruth Eley                  CSIP Nat Prog Lead OPP             Ruth.Eley@dh.gsi.gov.uk
Sue Garwood                Independent – CSIP                 sue@suegarwood.co.uk
                           Associate
Jane Gilliard              CSIP                               Jane.Gilliard@dh.gsi.gov.uk
Jo Grainger                Housing with Care Manager          joanne.grainger@mha.org.uk
Lorraine Haining           Extra Care Charitable Trust        Lorraine.Haining@extracare.org.uk
Chris Ridge                Extra Care Charitable Trust        “
Philippa Hare              Joseph Rowntree                    Philippa.Hare@jrf.org.uk
                           Foundation
Jon Head                   Hanover Housing                    jon.head@hanover.org.uk
                           Association
Andrew                     Dir. External Affairs,             Andrew.Ketteringham@alzheimers.org.uk
Ketteringham               Alzheimer’s Society
Peter Lansley              Director, SPARC                    p.r.lansley@reading.ac.uk
Ann McMahon                Age Concern                        ann.mcmahon@ageconcernbd.org.uk
Beth Noray                 Independent                        beth@bethnoray.co.uk
Steve Ongeri               Independent                        steve.ongeri@dsl.pipex.com
Tim Adlam                  Bath Institute of Medical          t.d.adlam@bath.ac.uk
                           Engineering
Linda Ryan                 Anchor Trust                       linda.ryan@anchor.org.uk
Fleur Sharman              Age Concern Camden                 f.sharman@ageconcerncamden.org.uk
Rani Svanberg              Newcastle Dementia Care            pa@dementiacare.org.uk
                           Partnership
Liz Taylor                 Orbit HA                           Liz.Taylor@orbit.org.uk
David Williams             Head of Dementia Voice,            david.williams@housing21.co.uk
                           H21
Judith Whittam             CSIP                               judithwhittam@btinternet.com




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