Project Title

Promoting informed decision making and effective communication through advance care planning for people living with dementia and their family carers

Research Focus:

Chronic Illness and Palliative care

Funder & Dates

The Atlantic Philanthropies and HSC Public Health, 2014-2017

Principal Investigator or Primary Supervisor (if PhD project)

Kevin Brazil

Co-Investigators or additional supervisors

Clarke M, Froggatt K, Hudson P, Kernohan G, McLaughlin D, Passmore P

Research Fellow(s) or PhD Student

Carter G

Name & Institution of Collaborators

Name of External Partner Organisations

University of Ulster, Lancaster University

Description of Project:

Aim; Methods; Expected Outcomes

Background: In dementia care, a large number of treatment decisions are made by family carers on behalf of their family member who lacks decisional capacity; advance care planning can support such carers in the decision-making of care goals. However, given the relative importance of advance care planning in dementia care, the prevalence of advance care planning in dementia care is poor.

Aim: To evaluate the effectiveness of advance care planning with family carers in dementia care homes.

Design: Paired cluster randomized controlled trial. The intervention comprised a trained facilitator, family education, family meetings, documentation of advance care planning decisions and intervention orientation for general practitioners and nursing home staff.

Setting/participants: A total of 24 nursing homes with a dementia nursing category located in Northern Ireland, United Kingdom. Family carers of nursing home residents classified as having dementia and judged as not having decisional capacity to participate in advance care planning discussions.

Results: The primary outcome was family carer uncertainty in decision-making about the care of the resident (Decisional Conflict Scale). There was evidence of a reduction in total Decisional Conflict Scale score in the intervention group compared with the usual care group (−10.5, 95% confidence interval: −16.4 to −4.7; p < 0.001).

Conclusion: Advance care planning was effective in reducing family carer uncertainty in decision-making concerning the care of their family member and improving perceptions of quality of care in nursing homes. Given the global significance of dementia, the implications for clinicians and policy makers include them recognizing the importance of family carer education and improving communication

between family carers and formal care providers

Add links/URLs to external pages, e.g., study webpage, reports, publications etc.

PICK Project

Brazil K, Carter G, Cardwell C, Clarke M, Hudson P, Froggatt K, McLaughlin D, Passmore P, Kernohan WG. Effectiveness of advance care planning with family carers in dementia nursing homes: A paired cluster randomized controlled trial. Palliative Medicine. 2017 July 1:269216317722413. doi: 10.1177/0269216317722413. [Epub ahead of print]

Any other relevant information