Co-designing CARE-PAC for people with dementia, carers and H&CPs
Research type
Research Study
Full title
Co-design and early user testing of a novel dyadic remote monitoring system (CARE-PAC) to support people living with dementia near the end of life and their unpaid carers.
IRAS ID
362710
Contact name
Roma Maguire
Contact email
Sponsor organisation
University of Strathclyde
Duration of Study in the UK
0 years, 9 months, 30 days
Research summary
Dementia care towards the end of life lags behind care provided for other serious illnesses such as cancer. People with dementia and their families frequently experience delays in recognising changes in health, long periods without the right help, and limited access to coordinated care. Family and friends who provide care play a vital role, but often face exhaustion, stress, and financial strain.
End-of-life dementia care happens across many settings—at home, care homes, hospices and hospitals— and involves multiple people and organisations. This complexity creates challenges for communication and accessing timely support. Solutions are needed that reflect the realities of living and caring with dementia, while being accessible and acceptable for all users.
This study will refine an existing digital remote monitoring and support system used within palliative and end of life care, CARE-PAC, making it appropriate for people with dementia and their informal carers. The project will use a co-design approach, meaning the system will be shaped directly by the people it is intended to help, along with health and social care professionals who understand the context of care.
The main activity will be a series of workshops. These will involve people living with dementia, informal carers (current and bereaved) and health and care professionals who will share experiences, identify needs, and explore how CARE-PAC could help. Participants will discuss what information and resources should be included, how the system should look and feel, and what features are most important. Participants will be able to choose how many sessions they attend, recognising that energy and circumstances vary.
By grounding the design in lived experiences and professional insight, this project will ensure the adapted system genuinely reflects the needs of people with dementia and their carers, helping to deliver the right support at the right time.
REC name
East of Scotland Research Ethics Service REC 1
REC reference
25/ES/0105
Date of REC Opinion
19 Dec 2025
REC opinion
Further Information Favourable Opinion