Beyond the Margins Phase 2

• Research type

  Research Study

• Full title

  Beyond the Margins: Developing Personalised Post-Diagnostic support for people living with dementia (Phase 2)

• IRAS ID

  270359

• Contact name

  Charlotte Clarke

• Contact email

  charlotte.clarke@durham.ac.uk

• Sponsor organisation

  Durham University

• Duration of Study in the UK

  1 years, 4 months, 31 days

• Research summary

  Dementia is recognised as one of our greatest public health challenges. UK government policy emphasises the importance of early diagnosis and alongside this is a drive to develop post-diagnostic support which supports people newly diagnosed to live full lives, and equip them for the journey that lies ahead. Beyond the Margins is an action research project funded by the Alzheimer’s Society. Its aim is to develop, implement and evaluate the processes and outcomes of a 7 week post-diagnostic support programme for people diagnosed with dementia and their care partners where applicable.

  In Phase 1 of this project the research team worked closely with people affected by dementia in local community groups who advised on the content of the 7 week course, approaches to facilitation, values and principles and the best ways of engaging people with post-diagnostic support. Interviews with workers from the voluntary and statutory sectors, including the NHS, about their views and experiences of post-diagnostic support and their thoughts on the proposed programme also took place (IRAS Project ID 260490). Phase 1 showed the limits of a ‘one size fits all’ approach and the need for flexibility in the content of the course, both in terms of different geographical areas, and in relation to the unique life circumstances of individuals taking part.
  The aim of this next Phase, for which ethical approval is now being sought, is as follows:

  • To run a 7 week post-diagnostic support programme, 4 times with 4 different groups of people with dementia. This will be facilitated by experienced Link Workers employed by Innovation in Dementia (http://www.innovationsindementia.org.uk/)
  • To undertake a process and outcome evaluation and further refinement of the programme
  • To understand the organisational pathways of engaging participants in the programme
  • To understand the organisational and resource requirements necessary to sustain the programme

  NB* People affected by dementia is a term widely recognised as including those with a diagnosis and their carers

• REC name

  South Central - Oxford C Research Ethics Committee

• REC reference

  20/SC/0023

• Date of REC Opinion

  17 Feb 2020

• REC opinion

  Favourable Opinion