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Engaging innovative and inclusive partnerships to inform dementia research: the Dementia Care Community

Lookup NU author(s): Dr Greta BrunskillORCiD, Claire BamfordORCiD, Professor Joy Adamson, Dr Lynne Corner, Dr Alison WheatleyORCiD, Professor Dame Louise Robinson


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The PriDem research programme aims to develop and evaluate components of evidence-based, person-centred, primary care led post diagnostic support to better meet the needs of people with dementia and their families. This research addresses post diagnostic dementia care as recently defined by the World Alzheimer’s Association; a ‘system of holistic, integrated continuing care in the context of declining function and increasing needs of family carers’ (2016). To ensure that this research is embedded in real life experiences and contexts, a wide, inclusive stakeholder group is being established; the Dementia Care Community (DCC). The DCC aims to bring together people with dementia and their family carers, and a wide range of professionals involved in support throughout the illness, including those employed by health and social care and key voluntary organisations. A range of approaches will be used to engage and involve the DCC throughout the research, including face to face group meetings, postal and email communication, and individual visits to people with dementia and their families. Key anticipated roles for the DCC will be in informing sampling and recruitment, developing data collection tools, contributing to data analysis, shaping intervention development, and advising on user friendly modes of dissemination. This presentation will describe the process of establishing this inclusive stakeholder group, and the early stages of working with the DCC to inform the work of PriDem, highlighting key benefits and challenges in this innovative approach to engaging the wider stakeholder community in research.

Publication metadata

Author(s): Brunskill G, Bamford C, Adamson J, Corner L, Wheatley A, Robinson L

Publication type: Conference Proceedings (inc. Abstract)

Publication status: Published

Conference Name: 13th UK Dementia Congress

Year of Conference: 2018

Online publication date: 06/11/2018

Acceptance date: 05/09/2018