Supporting family caregivers of nursing home residents with dementia in advance care planning.
Family Carer Decision Support Study (mySupport). A transnational effectiveness-implementation evaluation of an intervention developed to support family caregivers in planning for nursing home residents with dementia.
ResearchersLaura Bavelaar, MSc., PhD candidate, LUMC
Mandy Visser, MSc., PhD, senior researcher, LUMC
Jenny T. van der Steen, MSc., PhD, FGSA, associate professor, LUMC
Wilco P. Achterberg, MD, PhD, professor of Institutional Care and Elderly Care Medicine, LUMC
Pascalle Billekens, MSc., RN, nurse facilitator, LUMC
Petra Geerds, RN, nurse facilitator, LUMC
Mary Leune, expert by experience, LUMC
Marianne van Brussel, expert by experience, LUMC
Making decisions about care
When persons with dementia who live in a nursing home lose the capacity to make decisions for themselves, nursing home staff and family must decide about care and treatment. Evidence shows that family often experience uncertainty about illness progression, especially when not given an opportunity to discuss their relative's prognosis and fundamental aspects of their care.
The Family Carer Decision Support (FCDS) intervention has been developed to assist nursing home staff in supporting family caregivers when difficult decisions about end-of-life care need to be made for their relative with advanced dementia. The FCDS intervention is the focus of the mySupport study, a transnational multidisciplinary implementation study.
In previous research in Northern Ireland, the Family Carer Decision Support (FCDS) intervention was found to reduce family caregiver decision-making uncertainty on establishing goals of care at the end of life, and improve family caregiver satisfaction on fundamental choices around improving comfort and quality of care.
The main aim of the mySupport study is to translate and adapt the FCDS intervention for use in nursing homes in the Netherlands and in other countries. We implement an informational booklet for family caregivers, the 'Comfort Care Booklet', together with a question prompt list (based on the question prompt list 'Talking about the later stages of life in dementia'). The question prompt list offers example questions and can stimulate family caregivers to put their questions to the healthcare provider. In the intervention, nurse assistants, registered nurses and nurse practitioners are trained to conduct family care conferences. They are empowered to adopt a recognized and even more important role in the process of advance care planning. The family care conferences can also help prepare for future discussions with the physician about any medical questions or decisions. In this project we evaluate the implementation and effectiveness of mySupport. In addition, we investigate the costs and whether the positive impact experienced in Northern Ireland is also experienced by family caregivers in other countries.
Watch this short movie introducing the educational intervention designed to support family caregivers and mySupport study research partners, and explaining how the study is carried out.
In collaboration with
Queen's University Belfast, Northern Ireland
McMaster University, Hamilton Ontaria, Canada
University College Cork, Ireland
Center for Palliative Care Prague, Czech Republic
University of Turin, Italy
Alzheimer Society of Canada
Canadian Hospica Palliative Care Association
All Ireland Institute of Hospice and Palliative Care
EU Joint Porgramma - Neurodegenerative Disease Research (JPND)
Funding in the Netherlands: ZonMw (Memorabel)
Bavelaar L, Nicula M, Morris S, Kaasalainen S, Achterberg WP, Loucka M, Vlckova K, Thompson G, Cornally N, Hartigan I, Harding A, Preston N, Walshe C, Cousins E, Dening KH, De Vries K, Brazil K, van der Steen JT. Developing country-specific questions about end-of-life care for nursing home residents with advanced dementia using the nominal group technique with family caregivers. Patient Educ Couns. 2021 Jul 23:S0738-3991(21)00490-0. doi: 10.1016/j.pec.2021.07.031. Epub ahead of print. PMID: 34376304.
Hartigan I, Brazil K, Kaasalainen S, Sussman T, Van Der Steen J, Loucka M, Di Giulio P, Meehan E, Cornally N. (2019) mySupport: A trannational Effectiveness-Implementation Study of the Family Carer Decision Support Intervention to Improve End of Life Care in Long-Term Care. 67th Annual & Scientific Meeting of the Irish Gerontological Society, 26 - 28 September, Cork, Ireland. Age and Ageing, Volume 48, Issue Supplement_3, September 2019, Pages iii17-iii65, https://doi.org/10.1093/ageing/afz103.216
Brazil K. (2019, 23-25 October) P02.3. Implementing the Family Carer Decision Support (FCDS) Intervention to Improve end of life care in care homes: Planning an transnational effectiveness-implementation study [Poster presentation]. Alzheimer Europe Conference, The Hague, The Netherlands. https://www.alzheimer-europe.org/Conferences/The-Hague-2019/Detailed-programma-and-abstracts/PO2.-Home-and-residential-care
Bavelaar L, van der Steen J, Nicula M, Morris S, Kaasalainen S, Achterberg A, & Brazil K. (2020, Nov 4-7). Developing country-specific question prompt lists about dementia palliative care for family caregivers [Conference presentation]. GSA 2020 Annual Scientific Meeting, Online. Innovation in Ageing 2020; 4(Suppl 1): 786, https://doi.org/10.1093/geroni/igaa057.2846