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The University of Northampton

Hosted by the Institute of Health and Wellbeing at the University of Northampton, the Dementia Friendly Community of Practice aims to bring together like-minded individuals from across research, education, and practice who have a passion for and are willing to influence the theory and practice of dementia care across Northamptonshire to enhance the quality of care for people living with dementia and their carers.

Updated:
2 June 2017
Location:
East Midlands
Sectors:
Health, Hospitals and Hospital Trusts
Local Alliances:
Northamptonshire Dementia Action Alliance

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?

1.The National Dementia Declaration lists a number of outcomes that we 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?

Hosted by the Institute of Health and Wellbeing  at the University of Northampton, the Dementia Friendly Community of Practice undertakes research, which clearly reflects local priorities  and the national agenda. The programme of studies seeks to explore the person, social and care related experiences, and hopes and expectations of PwD and their carers.

Ongoing work focuses on early diagnosis and timely access to appropriate health and social care pathways; and the development of a community-based social interventions which has been specifically designed to promotion social connection and normalisation for people with early onset dementia and their carers.

The intention is that the knowledge gained from these projects can then be used to improve the quality of life, social and healthcare outcomes for this group of people.

All work undertaken by the Network is underpinned by the 'voices' of PwD and their carers, who are actively engaged in all aspects of research management and conduct. The membership of the group is both extensive and diverse and includes the local clinical commissioning group, general hospitals, independent hospital charity, NHS mental health trust, local Alzheimer’s Society, County Council, and Higher Education Institutions.

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

The key challenge for the dementia Research Network in delivering on its identified priorities include the availability of specific funding streams for research investigating the unique care experiences of people with early onset dementia and their carers. While not all work undertaken by the network focuses on the needs of this specialist patient population, local priorities have identified that the needs of the younger age group need to be more adequately addressed.

An additional aim of the network is to promote early diagnosis and early intervention for all people experiencing the signs and symptoms associated with dementia, but in particular those with early onset, in order to develop and deliver training for primary care practitioners. A challenge for the network has been in the recruitment of primary care practitioners on to its membership to date.

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

The main challenges are two-fold:-

1. Access to appropriate funding sources to support the work and projects undertaken by the CoP.

2. Regular committment from its members.

2. Actions

  • Invesitgating the difference and diversity of pwd and their carers within the local region

    The Institute for Health and Wellbeing at the University continues to explore the experiences of carers of people suffering from early and late onset dementia. Pre-project proposal work is currently ongoing, which is exploring  the specific care and support needs of the carers of people living with both young and late onset dementia. The aim is to use the conclusions  to inform the development and design of further research exploring the lived experience of caring for PwD. The  findings and recommendations will be used to inform the development of a specific tailor-made socially-based community interventions [in Northamptonshire and Leicestershire], which have been specifically designed to promote and support social connectedness and normalisation for carers of PwD.

    This information has already influenced the development of the QBE and Forget-me-nots Social Groups in Northamptonshire; and is informing the development of the Share and Care Group for people living with dementia and their carers in Lutterworth, South Leicestershire. This latter project has also formed the basis of an application to the Association of Dementia Studies at the University of Worcester to become a pioneer pilot site for the European-funded JPND MEETINGDEM Project.

    Status:
    Being implemented

    2015 - Third Quarter Update

    This information has already influenced the development of the QBE and Forget-me-nots Social Groups in Northamptonshire; and is informing the development of the Share and Care Group for people living with dementia and their carers in Lutterworth, South Leicestershire. This latter project has also formed the basis of an application to the Association of Dementia Studies at the University of Worcester to become a pioneer pilot site for the European-funded JPND MEETINGDEM Project.

    2015 - Third Quarter Update

    In progress

    2013 - Third Quarter Update

    In progress

    2013 - Second Quarter Update

    New member

  • Exploring lived experience, hopes and expectations from initial diagnosis through to timely referral to appropriate health and social care pathways from the perspective of pwd and their carers

     The Dementia Friendly Communiy of Practice at the University continues to support and work with both the members of QBE and the Forget-me-nots Social Group to explore opportunities to improve knowledge about the patient journey within its research, educatio, and practice community members.

    Status:
    Implementation

    2015 - Third Quarter Update

    In progress

    2013 - Fourth Quarter Update

    In progress

    2013 - Third Quarter Update

    New member

  • The Institute for Health and Wellbeing is keen to incorporate the user and carer 'voice' actively and meaningfully throughout all stages of its research and educational developments

    This action has formed the basis of all development work in the Institute to date, but remains an ongoing proirity. The Institute has supported the development of  QBE (Qualified by Experience) which is a social suport group run by and for people who have previous experience of having cared for a person living with dementia. Members of this group are also the carer representatives on the University's Dementia Friendly Community of Practice in the Institute of Health and Wellbeing.

    Status:
    Implementation

    2015 - Third Quarter Update

    The group now have their own Flyer which has been designed to advertise the group and its purpose more widely. It is also hoped that this group will attract new members through local distribution networks.

  • Exploring the impact on quality of life and life choices of initial diagnosis from the perspective of the pwd and their carer

     This activity is explored via the facilitation of the Forget-me-nots Social Group in Northamptonshire and the Share and Care Group in Lutterworth, South Leicestershire, who are keen to extend their membership to include those who have been newly diagnosed so they can provide informal post-diagnostic support.

    Status:
    Being implemented

    2015 - Third Quarter Update

    In progress

    2013 - Fourth Quarter Update

    In progress

    2013 - Third Quarter Update

    New member

  • Identify the sources of formal and informal community health care and social support networks for the pwd and their carers

     Preliminary work has been undertaken to ascertain the extent of the formal and informal support networks for PwD in Northamptonshire; however, the intention is that more advanced work currently being undertaken in South Leicestershire will inform future development work in this area across its neighbouring county.

    Status:
    Initial Scoping

    2015 - Third Quarter Update

    In progress

    2013 - Fourth Quarter Update

    In progress

    2013 - Third Quarter Update

    New member

  • Develop a community based social intervention which is deisgn to promote social connection and normalisation

    The University of Northampton has facilitated, along with the Alzheimer's Society in Northamptonshire, the development of the Forget-me-nots  social support group for younger people living with dementia and their carers in Northamptonshire. The group was launched in July 2014, with its first meeting being on the Park Campus.The group meets once a month from 5-7pm at differing venues across the county. The group is keen to extend its membership.

    Status:
    Implementation

    2015 - Third Quarter Update

    While the group has celebrated its first birthday, we are keen to attract new memebers and advertise the group more extensively.

    2013 - Fourth Quarter Update

    In progress

    2013 - Third Quarter Update

    New member

  • Promoting the integregation of policy into practice, for example in relation to dementia friendly intiatives

    In October 2014, the Dementia Research Network at the University was re-launched, after consultation with its members, as a 'Dementia Friendly Community of Practice' with the aim of bringing together like-minded individuals from across research, education, and practice to enhance the quality of care for people living with dementia and their carers across Northamptonshire and further afield.

    At the outset, the project team, led by the Chair of the group, Professor Jacqueline Parkes,  identified any existing groups or networks that were already beginning to form into the start of a community of practice. The intention was to build onto and work collaboratively with these existing structures. In addition, invitations are offered to recruit additional members to the CoP network.

    The central aim of the CoP is to engage with a range of stakeholders in a process of collective learning in the shared domain of developing an informed and effective workforce in order to provide better outcomes for people with dementia and their carers.  The function of this group is to collectively:-

    Problem solve and identify solutions

    Share information and experiences

    Reuse known assets

    Discuss and critically debate key issues and developments

    Co-ordinate and highlight synergy

    Map knowledge and identify gaps

    Visits

    Document and report

    Ultimately, it is hoped that the CoP, will collectively bring together a core group of like-minded individuals who have a passion for and are willing to influence the theory and practice of dementia care across Northamptonshire and beyond in order to improve the quality of the care experience PwD and their carers. 

    Status:
    Implementation

    2015 - Third Quarter Update

    The Dementia Friendly Community Practice has now been working together for one year since October 2014.. To date, it has hosted presentations about local developments, and formed three working parties to develop a newsletter, the advertising for QBE, and plan for a Memory Day in Northampton in May 2015 to coincide with Dementia Awareness week.

    2013 - Fourth Quarter Update

    In progress

    2013 - Third Quarter Update

    New member

  • Enhancing contemporary knowledge and understanding of the special circumstances of YOD

     The University has supported the development of the Forget-me-nots Social Group for Young Onset Dementia in Northamptonshire. The Chair, Professor Jacqueline Parkes, of the Dementia Friendly Communities of Practice is also a member of the National Steering Committee for Young Onset Dementia.

    The work of the Forget-me-nots Social Group for People living with Young Onset Dementia and their carers has recently been published in the Journal of Dementia Care (July/August 2015)

    Status:
    Implementation

    2015 - Third Quarter Update

    The work of the Forget-me-nots Social Group for People living with Young Onset Dementia and their carers has recently been published in the Journal of Dementia Care (July/August 2015)

    2013 - Fourth Quarter Update

    In progress

    2013 - Third Quarter Update

    New member