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Patient and Public Involvement

Dementia Care Community (DCC)

The Dementia Care Community (DCC) is a mixed stakeholder group established to inform and advise PriDem. The group includes people living with dementia, family carers, and professionals working in organisations involved in dementia care. The DCC plays an important role by making sure our work is informed by real life experiences of dementia. We use number of approaches to hear the views of the DCC including meetings, email and telephone contacts, and visits to groups for people living with dementia and carers. We work with the DCC 4-5 times over the year, depending on the needs of the research. Our bi-monthly newsletter helps us to stay in touch.

The DCC will help with issues relevant across the programme including:

  • Developing user friendly and effective ways of sharing information about the programme and disseminating the outcomes
  • Raising the awareness of programme staff through sharing experiences of living with dementia and/or delivering relevant services
  • Helping us to resolve any problems encountered in delivering the programme


The Patient/Public Programme Advisory Board (PPAB) acts as an external monitor for the study. It will meet once a year to oversee progress in terms of milestones and deliverables, and act as critical ‘friends’ to the DCC.  All members of the PPAB have personal experience of caring for relatives with dementia. The PPAB is chaired by the programme lead, Louise Robinson, and PPI representative, Sue Tucker.

Join our Member's area

Dementia Innovation Hub
Newcastle University
Campus for Ageing and Vitality
Newcastle upon Tyne
Tyne and Wear

Tel: 0191 2081130


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