The Housing and Dementia Research The Housing and Dementia Research ConsortiumConsortium

Sue Garwood Sue Garwood

Housing LIN Dementia LeadHousing LIN Dementia Lead

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Back to the beginning...Back to the beginning...• 2006 – Housing LIN dementia lead

• Survey into gaps in information, knowledge and skills in relation to people with dementia in own homes →

• Housing LIN Information sharing seminar in August 2007

• Housing 21/Dementia Voice – Planning and consultation forum – January 2008 →

• Formation of the HDRC

Early daysEarly days• H21, Hanover, Anchor, MHA & Thomas Pocklington

Trust, supported by Housing LIN. Sept 2010 ECCT.• Key aim: “To work towards developing robust research

on dementia care in housing with care, to influence policy and practice.” – Shape research agenda to be useful and relevant– Work together to have greater weight when applying for funding– Deliver more ambitious, large scale, multi-site, multi-provider

research– Share findings

• Inaugural meeting March 2008, launch at Dementia Congress, and invited wider membership – currently approximately 80...providers, commissioners, academics, architects etc

Some achievements but a dawning Some achievements but a dawning realisation...realisation...

• Scoping review of literature funded by JRF and Beyond Dementia publication

• September 2009 – membership event → start of a list of key research themes and questions

• Work to try and influence national dementia strategy and raise profile of housing and dementia at Dementia Congress

• But challenging to do the necessary alongside day jobs → appointment of co-ordinator funded by core members

July 2010 – April 2011July 2010 – April 2011• Nine-month tenure as co-ordinator......did a lot but not

much to show for it apart from building blocks:– Pulled together and developed priority research questions– Networked with potential research partners, sending relevant

research topics– Researched funding opportunities– PR & communications; tried to establish a website– Collaborated with Dawn Brooker on an unsuccessful bid to

LLHW re identifying and assessing wellbeing of people with dementia in Housing with Care

– Arranged meeting with researchers to identify design and built environment priorities and then worked on developing a couple of proposals which Julie followed up

– Joined the Dementia Action Alliance

New co-ordinator hits ground runningNew co-ordinator hits ground running• Julie appointed July 2011 – employed by H&C 21 on behalf of

HDRC

• Scoped up priority research themes

• Built up project teams, initiated and contributed to 5 funding bids, HDRC included as collaborator of 5 other bids

• Autumn 2011– small scale in-house research: provision for people with dementia in 7 HWC schemes → report and wish to extend

• Sorted the website, including newsletter

• PR, communication and expansion of membership and steering group

• Contributed to a housing and dementia working group set up to influence policy

• Work on a successfully funded project

Will leave it to Julie to elaborate on research bids

Changes abound: 2013 →Changes abound: 2013 →• Core group – changes in organisations and

representatives • Inviting new core members• Broadened scope to include other

accommodation and care settings• Need to find a “new home” for the consortium• Need to find better ways of involving our wider

membership and finding funding

I was asked the other day:I was asked the other day:

• What different housing-based models exist for people with dementia?

• What research is there into the ability of extra care housing to meet the needs of people with dementia?

My own assessment of where we areMy own assessment of where we are• Progress is being made but it is slow:

– Number of research projects specifically focusing on accommodation and dementia still relatively low

– Of those that exist, even fewer are multi-site, & where they are, still single provider – some findings may reflect provider’s approach rather than EC generally

– We still don’t even have an overview of who is doing what out there for people with dementia

– Continuing challenges to get funding for the areas of research that would be really valuable to housing/accommodation and care providers

• Too niche for mainstream funders?

• Complexity of the sector so need for large scale, multi-site research - expensive?

• Having to shape proposals to please the funders

• Determination and commitment are high!

My personal priorities remain to:My personal priorities remain to:• Extend the in-house work to establish a baseline of what

is out there and who is doing what• Research the pros and cons of different models of

accommodation and care for people with dementia – outcomes for people at different stages at point of entry, and once there

• Test out of commonly asserted design principles for people with dementia

But you may think differently

For more information and Strategic Overview - HDRC website

http://housingdementiaresearch.wordpress.com/

C/o EAC3rd Floor, 89 Albert EmbankmentLondonSE1 7TP

email: info@housinglin.org.uktel: 020 7820 8077website: www.housinglin.org.ukTwitter: @HousingLIN

Thank you!Thank you!

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