Housing and Dementia Research Consortium

The HDRC is the largest UK network of Housing and Care providers, commissioners and other interested parties. It brings together those that are committed to achieving timely, appropriate high quality research – focused on ‘what works’ for people with dementia lviving in different housing settings – to directly influence policy and practice on housing and care for people with dementia in the UK.

Updated:
10 February 2016
Location:
National
Sectors:
Membership Organisations, Housing Sector

1. Action Plan

1. The National Dementia Declaration lists seven outcomes that the DAA are seeking to achieve for people with dementia and their carers. How would you describe your organisation’s role in delivering better outcomes for people with dementia and their carers?

The Housing and Dementia Research Consortium (HDRC) is a membership group that has come together to achieve timely, high quality research focused on ‘what works’ in order to directly influence policy and practice in relation to Housing with Care and other forms of accommodation and care for people with dementia in the UK. The HDRC's steering group members are representatives from Anchor Trust, MHA, Housing and Care 21, Belong, Thomas Pocklington Trust, Sanctuary, the Alzheimer's Society and the Housing LIN. HWC has the potential to deliver all the outcomes listed in the Dementia Declaration, but is more likely to do so if evidence is available of what works best for people with dementia living in HWC, or making use of its facilities as compared to other forms of accomodation. Housing with care is a relatively new concept, with distinctive features, and so far, only a small amount of research has been undertaken to provide this evidence. HDRC's aims therefore are to:

  • To shape the agenda of research into housing and care to ensure its relevance and usefulness to housing and care providers, people with dementia, their families, significant others, carers and advocates.
  • To work together to have greater weight when applying for research funding.
  • To deliver ambitious, multi-provider research which provides robust, specific evidence on accommodation and care for people with dementia.
  • To ensure that housing and care providers, residents and service users are active research partners, rather than being passive recipients or research participants.
  • To influence policy, funding and practice in relation to care and housing in the UK, based on evidence.
  • To contribute to growing the evidence base, more generally, on dementia and links with housing, the built environment and housing related care and support.
  • To share findings from in-house research and evaluations from member organisations

2. What are the challenges to delivering these outcomes from the perspective of your organisation?

The main challenge for HDRC is undoubtedly funding. Some research findings from other settings are transferrable to Housing with Care, but its distinctive features necessitate specific research as well while its many variations make generalisations from small-scale, single-provider or single-unit studies difficult. Thus large scale, multi-site research is needed. HwC is an increasingly popular option for older people with support needs, and occupants with dementia deserve the best chance of the Declaration's outcomes being achieved. The challenge then for HDRC is to raise the profile of Hosuing for people with dementia as an important area of research, worthy of investment. Further challenges for the Consortium include designing research with its partners which validly answer key questions in a complex area, ensuring proper engagement of those affected by dementia; and keeping the momentum going and its membership engaged within the context of limited resources.

2. Actions

  • Four founder members

    The four founder members have contributed to a fund to employ someone part-time until the end of this financial year (end March 2010) to move the agenda forward. It is hoped that a successful research bid would include funding this role in the longer term. The core group will review the position at the beginning of 2011. The role of the research co-ordinator is to:

    develop the research agenda.make links with research partners.find funding.prepare research proposals with research partners - one bid has recently been submitted.develop a website.use opportunities to raise awareness and understanding of housing with care and the need for research, in the context of people with dementia.link with the membership, providing updates and any other information likely to be of use to them.continue to link with the Housing Learning and Improvement network.

    In any successful research bid, the HDRC will:

    identify suitable research sites.be an active partner in shaping the research methodology.ensure that researchers have a proper understanding of the housing with care setting.ensure that people with dementia and their carers are properly and ethically involved.use its networks to disseminate research findings and encourage implementation in practice.

    The long-term future of the consortium will depend on its success in fulfilling its aims and becoming self-financing.

    Status:
    Completed

    2014 - Third Quarter Update

    The HDRC has been successful in obtaining core funding (to employ a research coordinator) until Jun 2016. The current core funders are six well-established housing and care providers: Housing and Care 21, Anchor Trust, MHA Care Group, Thomas Pocklington Trust, Belong and Sanctuary Care and Support. Representatives from these housing provider sit on the HDRC steering group. The Housing Learning and Improvement Network (Housing LIN), the Alzheimer's Society and the Association for Dementia Studies (ADS) are also represented. Since September 2014 the HDRC has been hosted by the ADS at the University of Worcester.

    2012 - Third Quarter Update

    To be downloaded off website. 

    2012 – Second Quarter Update

    The membership continues to grow. The network now numbers 48 associate members (Housing with Care providers or commissioners only) and 47 partner members (other interested organisations or individuals).

    During Sept-Nov 2011 the Research Coordinator visited several Housing with Care schemes belonging to core group members in order to assess the provision for people with dementia. The case study schemes included one specialist or dedicated dementia scheme (specifically designed for people with dementia) and 6 integrated model schemes (people with dementia living alongside other tenants). This small-scale study has now been written up in a report titled: “Provision for people with dementia within Housing with Care:

    Case studies from HDRC Steering Group Providers”. In terms of dissemination, in the first instance, the report has been emailed to all members and put on the HDRC website (in the next stage of dissemination it will be published on the Housing LIN website). This report highlights some of the differences in how schemes are tailored to support people with dementia.

    and the need for more comprehensive information on how the needs of people with dementia are being met in Housing with Care. The future plan is to expand on this small-scale case study and apply the research at a larger scale across all the HWC schemes in the HDRC.

    Project title: “The impact of interaction with the outside community on the health and wellbeing of older residents in extra care and continuing care settings. Proposal submitted to The Dunhill Medical Trust. The outline proposal was successful and a full proposal has been developed and submitted for Apr 27th deadline (likely to hear if successful in Sept 2012).

    Project title: “Developing best practice in social care and support for adults with concurrent sight loss and dementia within different housing settings”. Full proposal submitted to NIHR School of Social Care Research. Final decision: mid may 2012.

    Funding bids:

    DALLAS (Delivering Assisted Living Lifestyles at Scale) competition: At the start of the final stage of the competition (Stage 3) there were 8 communities remaining, one of which included the HDRC. The final 5 communities will be made public on 23rd May 2012.

    2012 - First Quarter Update

    Having been successful in our application to the Technology Strategy Board’s DALLAS (Delivering Assisted Living Lifestyles at Scale) competition, we have continued to be successful in subsequent stages of the competition and are currently part of one of the eight shortlisted communities. The final selections will be made over the coming weeks ready for the programme to commence in Summer 2012.

    The HDRC website has been further developed and now contains, within the ‘members only’ area, descriptions of our priority research questions / ideas and a members’ newsletter, outlining the activities of the HDRC, updated monthly.

    • New members continue to be added to the membership database, which now numbers 94.

    We have brought together a team of researchers from within the HDRC membership who have submitted a proposal to the NIHR SSCR 4th Wave.

    The HDRC website has had further improvement and additions, including useful links and information on current research bids for members only.

    Call, answering the call research question: 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, or with sight loss and dementia?.

    Project title: “Developing best practice in social care and support for adults with concurrent sight loss and dementia within different housing settings”.

    Another HDRC team is working on developing a proposal for submission to the NIHR PHR programme in April, exploring the impact of interaction with the outside community on the health and wellbeing of housing with care residents, with a special focus on those with dementia.

    We have conducted a small in-house study of provision for people with dementia within HWC schemes from among the core members. This will help inform future research development.

  • Seeking further core funding for the HDRC

    To ensure the future of the HDRC and continuation of the research coordinator further core funding is required.

    Status:
    Completed

    2014 - Third Quarter Update

    Core funding (to employ a research coordinator) has been obtained for the HDRC until June 2016.

  • Review the scope and purpose of the HDRC

    The HDRC is currently reviewing it's scope and purpose to reflect the housing choices available to older people and to attract new core funders.

    Status:
    Completed

    2014 - Third Quarter Update

    The HDRC was set up in 2008 by four leading UK providers of Housing with Care in order to develop robust evidence on care, design and the environment for people with dementia in a Housing with Care setting. In Summer 2013 the research remit was broadened to include other types of accommodation and care arrangements available to people with dementia. The new remit is intended to reflect the wide range and choice of housing settings in which people with dementia live. The new remit was successful in attracting attract new members to the consoritum (including core funders) and enabling the HDRC to join more research bids.

  • Advise the BSI on the development of Dementia Standards

    The BSI is planning to develop standards in dementia care. The HDRC has been involved in the initial stages of this activity.

    Status:
    Completed

    2013 - Second Quarter Update

    The HDRC Research Coordinator attended the BSI Dementia Standards launch workshop, has further advised the BSI and has set up meetings for the BSI to chat to other stakeholders during this "proposition stage" of standards development.

  • Review the HDRC's research priorities in light of the new research remit.

    On 1st May 2014 the HDRC steering group organised a workshop for HDRC members, chaired by Jeremy Porteus (Director, Housing Learning and Improvement Network), the aims of which were to raise awareness of the HDRC, to gain an understanding of how best to engage the membership and to set the future research agenda. Key priorities were the sharing and understanding of the issues that members currently face in relation to accommodation and care for people with dementia and the development of research goals that address these issues.

    In addition to the eight steering group members and two guest speakers, 19 members of the HDRC attended, representing 17 different organisations, including: housing providers and commissioners, academics, architects and the third sector. Attendees had a broad spectrum of experience, expertise and interest relating to accommodation and care for people with dementia.

    Status:
    Completed

    2014 - Third Quarter Update

    The HDRC membership event held on 1st May 2014 was successful in producing a set of updated research priorities that reflect the concerns and interests on the consortium members. The report of the event can be found on the HDRC website at: http://housingdementiaresearch.wordpress.com/hdrc-membership-workshop/

    The issue of housing and support for people with dementia was clearly important to those HDRC members who attended the event. It appears that the primary incentive for belonging to the HDRC was that, due to a growing business need for evidence around ‘what works’ for people with dementia, organisations were looking to collaborate and learn from one another rather than carry out their own ‘in-house’ research.

  • Hold an annual HDRC learning and knowledge exchange event for members

    For those HDRC members that attended the May 2014 membership event, the most popular method for more effectively involving the broader membership in the HDRC's developing work programme would be for the steering group to hold an annual event to share learning and set research priorities. Such an event would provide member organisations with an update of the HDRC’s research and other activities and also enable those organisations to share their learning with each other, with respect to housing and support for people with dementia. Judging from the success of the May 2014 event reported in this document, such events would be well-received and useful to member organisations.

    In order to improve engagement of the broader membership, the HDRC steering group has decided to hold an annual members’ learning and best practice exchange event. Such an event would be costly for the HDRC, but should be possible if the venue were provided by one of the member organisations.

    Status:
    Planning
  • Other methods of involving the wider HDRC membership

    Receiving regular newsletters by email was also a popular means of engaging the broader membership among the event attendees at the May 2014 HDRC membership event. There is a members’ newsletter on the HDRC website, which is updated monthly; the HDRC steering group will consider sending out regular reminders to members to check the website and / or to emailing a quarterly newsletter to members.

    The steering group will also give serious consideration to other methods of involving the wider membership suggested by the events’ attendees, such articles in membership organisations’ newsletters and websites.

    Status:
    Planning
  • Consult service users to determine their research priorities

    Following the May 2014 HDRC membership event, the HDRC steering group felt that it would be useful and prudent to consult service users concerning their research priorities to determine the level of agreement with the priorities resulting from the membership workshop and whether they have any additional research themes that they would like to see addressed. Under the guidance of the Alzheimer’s Society (represented on the steering group) it may be possible to achieve this via a series of focus groups with people with dementia and their carers living in various housing settings.

    Status:
    Planning
  • Seek further core funding to enable small in-house research projects

    Once the research themes that are priorities for both the HDRC membership and the service users have been established, the steering group will then discuss how much work each key research question requires and which projects the HDRC could feasibly do itself, with help from membership organisations.

    The HDRC research coordinator position is currently funded by six well-established housing and care providers: Housing and Care 21Anchor, MHA Care GroupThomas Pocklington Trust, Belong and Sanctuary Care and Support.

    In order for small-scale in-house research projects to be carried out, extra core funding will be required. It will therefore be necessary to seek additional core funders.

    Status:
    Being implemented