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Funded by: The R&D Division of the Public Health Agency and Atlantic Philanthropies (Dementia Call) (£320,000)

About the Project

One third of people over 65 will live out their lives with dementia.

These numbers will double by 2040, accompanied by a tripling of dementia care costs. We require imaginative ways of living with and managing dementia care so that people with dementia can lead full and meaningful lives. Ideally, people living with dementia should determine the appropriate services and when and how these are provided. Currently, this is not the case for many people. When dementia is accompanied by multiple and complex health problems, care and treatment is often experienced as disjointed and compartmentalised, and lacking consultation.

The Northern Ireland Public Health Agency in partnership with the Royal College of General Practitioners and a consortium of voluntary sector organisations and service users have collaboratively developed a Healthcare Passport to assist communication for people with long-term health problems. It is designed to allow continuous updating by family and health professionals, acting as a ‘live’ synchronised record of changing need, service contact and information provision.

Project Aims

Our aims in this study are two-fold. First, to contribute to the evidence base on the use of services, communication needs and decision-making processes of people with dementia and their family caregivers as these unfold over time. Secondly, to clarify the acceptability and usage of communication tools for people living with dementia and how such tools may be improved. Undertaking a realist review and a longitudinal qualitative study (QLR), we will address the following questions:

  • Is a Healthcare passport acceptable and usable for people with dementia, their family caregivers and health professionals?
  • Is a sense of ‘personhood’ in the midst of dementia conveyed by the use of Healthcare passport?
  • Will the use of a Healthcare passport help overcome problems of communication between people with dementia and health and care services?
  • Will a Healthcare passport empower and support the autonomy and decision-making of people with dementia and family carers?
  • What is the level and quality of engagement with such a passport by health and social care professionals?
  • How do the needs of people with dementia and their family carers, with regard to service contacts and communication, evolve over time?

Investigators

  • Professor Gerard Leavey (Principal Investigator, The Bamford Centre)
  • Dr Dagmar Corry, Dr Emma Curran, and Dr Bethany Waterhouse-Bradley (Research Associates, Ulster University)
  • Professor Vivien Coates (School of Nursing, Ulster University and Western Health and Social Care Trust)
  • Professor Brendan McCormack (School of Health Science, Queen Margaret University)
  • Dr Aine Abbott (Altnagelvin Area Hospital, Western Health and Social Care Trust)
  • Dr Stephen Todd (Altnagelvin Area Hospital, Western Health and Social Care Trust)
  • Professor Max Watson (Director, Northern Ireland Hospice and Palliative Care)
  • Professor Sonja McIlfatrick (School of Nursing, Ulster University and All Ireland Institute for Hospice and Palliative Care)
  • Bernadine McCrory (Director), Beverly Todd, and Lorna McManus (Alzheimer’s Society)
  • Allison McCallion (Memory Clinic and Western Health and Social Care Trust)

Publications