BACKGROUND: the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative's future care. OBJECTIVES: to investigate whether upscaling the intervention adapted to local context and complemented by a question prompt list impacts family caregivers' uncertainty in decision-making and their satisfaction with care across six countries. Second, to investigate whether mySupport affects residents' hospitalisations and documented advance decisions. DESIGN: a pretest-posttest design. SETTING: in Canada, the Czech Republic, Ireland, Italy, the Netherlands and the UK, two nursing homes participated. PARTICIPANTS: in total, 88 family caregivers completed baseline, intervention and follow-up assessments. METHODS: family caregivers' scores on the Decisional Conflict Scale and Family Perceptions of Care Scale before and after the intervention were compared with linear mixed models. The number of documented advance decisions and residents' hospitalisations was obtained via chart review or reported by nursing home staff and compared between baseline and follow-up with McNemar tests. RESULTS: family caregivers reported less decision-making uncertainty (-9.6, 95% confidence interval: -13.3, -6.0, P < 0.001) and more positive perceptions of care (+11.4, 95% confidence interval: 7.8, 15.0; P < 0.001) after the intervention. The number of advance decisions to refuse treatment was significantly higher after the intervention (21 vs 16); the number of other advance decisions or hospitalisations was unchanged. CONCLUSIONS: the mySupport intervention may be impactful in countries beyond the original setting.

Center for Palliative Care Prague Czech Republic

Department of Primary and Community Care Radboud university medical center Nijmegen the Netherlands

Department of Public Health and Pediatrics University of Torino Turin Italy

Department of Public Health and Primary Care Leiden University Medical Center Leiden the Netherlands

International Observatory on End of Life Care Lancaster University Lancaster UK

School of Nursing and Midwifery Queen's University Belfast Belfast UK

School of Nursing and Midwifery University College Cork Cork Ireland

School of Nursing McMaster University Hamilton Canada

School of Social Work McGill University Montreal Canada

Age Ageing. 2023 Apr 1;52(4):afad048. doi: 10.1093/ageing/afad048. PubMed

Zobrazit více v PubMed

Jalbert JJ, Daiello LA, Lapane KL. Dementia of the Alzheimer type. Epidemiol Rev 2008; 30: 15–34. PubMed

Cohen LW, Zimmerman S, Reed Det al. . Dementia in relation to family caregiver involvement and burden in long-term care. J Appl Gerontol 2014; 33: 522–40. PubMed PMC

Carter G, McLaughlin D, Kernohan WGet al. . The experiences and preparedness of family carers for best interest decision-making of a relative living with advanced dementia: a qualitative study. J Adv Nurs 2018; 74: 1595–604. PubMed

Petriwskyj A, Parker D, Robinson A, Gibson A, Andrews S, Banks S. Family involvement in decision making for people with dementia in residential aged care: a systematic review of quantitative and qualitative evidence. JBI Database System Rev Implement Rep 2013; 11: 131–282. PubMed

Steen van der JT, Onwuteaka-Philipsen BD, Knol DL, Ribbe MW, Deliens L. Caregivers’ understanding of dementia predicts patients’ comfort at death: a prospective observational study. BMC Med 2013; 11: 105–16. PubMed PMC

Brazil K, Carter G, Cardwell Cet al. . Effectiveness of advance care planning with family carers in dementia nursing homes: a paired cluster randomized controlled trial. Palliat Med 2018; 32: 603–12. PubMed

Harding A, Doherty J, Bavelaar Let al. . A family carer decision support intervention for people with advance dementia residing in a nursing home: a study protocol for an international advance care planning intervention (mySupport study). BMC Geriatr 2022; 22: 822. 10.1186/s12877-022-03533-2. PubMed DOI PMC

Morley JE, Caplan G, Cesari Met al. . International survey of nursing home research priorities. J An Med Dir Assoc 2014; 15: 309–12. PubMed

Xie B, Berkley AS, Kwak J, Fleischmann KR, Dimmitt Champion J, Koltai KS. End-of-life decision making by family caregivers of persons with advanced dementia: a literature review of decision aids. SAGE Open Med 2019; 6: 1–9. PubMed PMC

Bolt SR, Meijers JMM, Steen van der JT, Schols JMGA, Zwakhalen SMG. Nursing staff needs in providing palliative care persons with dementia at home or in nursing homes: a survey. J Nurs Scholarsh 2020; 52: 164–73. PubMed PMC

Bernet AC, Willens DE, Bauer MS. Effectiveness-implementation hybrid designs: implications for quality improvement science. Implement Sci 2013; 8: S2. 10.1186/1748-5908-8-S1-S2. DOI

Glasgow RE, Harden SM, Gaglio Bet al. . RE-AIM planning and evaluation framework: adapting to new science and practice with a 20-year review. Front Public Health 2019; 7: 64. 10.3389/fpubh.2019.00064. PubMed DOI PMC

Ogrinc G, Davies L, Goodman D, Batalden P, Davidoff F, Stevens D. SQUIRE 2.0 (standards for QUality improvement reporting excellence): revised publication guidelines from a detailed consensus process. BMJ Qual Saf 2016; 25: 986–92. PubMed PMC

Hoffmann TC, Glasziou PP, Milne Ret al. . Better reporting of intervention: template for intervention description and replication (TIDieR) checklist and guide. BMJ 2014; 348: g1687. 10.1136/bmj.g1687. PubMed DOI

Steen van der JT. Developing guidance in addressing the challenges of advance care planning in dementia: an EAPC Delphi study. In: Abstracts from the 17th World Congress of the EAPC 2021. Pall Med. 2021; 35: 1, 243, 10.1177/02692163211035909. DOI

Bavelaar L, Nicula M, Morris Set al. . 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 2022; 105: 965–73. PubMed

Bavelaar L, McCann A, Cornally Net al. . Guidance for family about comfort care in dementia: a comparison of an educational booklet adopted in six jurisdictions over a 15 year timespan. BMC Palliat Care 2022; 21: 76. 10.1186/s12904-022-00962-z. PubMed DOI PMC

Arcand M, Caron C. Comfort Care at the End of Life for Persons with Alzheimer’s Disease or Other Degenerative Diseases of the Brain - a Guide for Caregivers. Sherbrooke: Centre de santé et de services sociaux - institut universitaire de gériatrie de Sherbrooke, 2005.

O’Connor AM. Validation of a decisional conflict scale. Med Decis Making 1995; 15: 25–30. PubMed

O’Connor AM. User Manual – Decisional Conflict Scale (16 Item Statement Format) [Internet]. Ottawa: Ottawa Hospital Research Institute; ©1993[updated 2010; cited 12 July 2022]. p. 16. Available from:https://decisionaid.ohri.ca/docs/develop/User_Manuals/UM_Decisional_Conflict.pdf

Vohra JU, Brazil K, Hanna S, Abelson J. Family perceptions of end-of-life care in long-term care facilities. J Palliat Care 2004; 20: 297–302. PubMed

Reisberg B, Ferris SH, Franssen E. An ordinal functional assessment tool for Alzheimer's-type dementia. Hosp Community Psychiatry 1985; 36: 593–5. PubMed

Sousa VD, Rojjanasrirat W. Translation, adaptation and validation of instruments or scales for use in cross-cultural health care research: a clear and user-friendly guideline. J Eval Clin Pract 201, 17: 268–74. PubMed

Groenwold RHH, Donders ART, Roes KCB, Harrell FE, Moons KGM. Dealing with missing outcome data in randomized trials in observational studies. Am J Epidemiol 2012; 175: 210–7. PubMed

Thabane L, Mbuagbaw L, Zhang Set al. . A tutorial on sensitivity analyses in clinical trials: the what, why, when and how. BMC Med Res Methodol 2013; 13. 10.1186/1471-2288-13-92. PubMed DOI PMC

Verreault R, Arcand M, Misson Let al. . Quasi-experimental evaluation of a multifaceted intervention to improve quality of end-of-life care and quality of dying for patients with advanced dementia in long-term care institutions. Palliat Med 2018; 32: 613–21. PubMed

Huang H-L, Lu W-R, Liu C-L, Chang H-J. Advance care planning information intervention for persons with mild dementia and their family caregivers: impact on end-of-life care decision conflicts. PLoS One 2020; 15: e0240684. 10.1371/journal.pone.0240684. PubMed DOI PMC

Schiffman IK, Werner P. Willingness of family caregivers of people with dementia to undertake advance care planning: examining an extended model of the theory of planned behavior. Dementia 2021; 20: 1044–57. PubMed

Wendrich-van Dael A, Bunn F, Lynch J, Pivodic L, Van den Block L, Goodman C. Advance care planning for people living with dementia: an umbrella review of effectiveness and experiences. Int J Nurs Stud 2020; 107: 103576. 10.1016/j.ijnurstu.2020.103576. PubMed DOI

Afonso-Argilés FJ, Meyer G, Stephan Aet al. . Emergency department and hospital admissions among people with dementia living at home or in nursing homes: results of the European RightTimePlaceCare project on their frequency, associated factors and costs. BMC Geriatr 2020; 20: 453. 10.1186/s12877-020-01835-x. PubMed DOI PMC

Grimm F, Hodgson K, Brine R, Deeny SR. Hospital admissions from care homes in England during the COVID-19 pandemic: a retrospective, cross-sectional analysis using linked administrative data. Int J Popul Data Sci 2021; 5: 07. 10.23889/ijpds.v5i4.1663. PubMed DOI PMC

Nosek BA, Hardwicke TE, Moshontz Het al. . Replicability, robustness and reproducibility in psychological science. Annu Rev Psychol 2022; 73: 719–48. PubMed

Davies N, Iliffe S, Hopwood Jet al. . The key aspects of online support that older family carers of people with dementia want at the end of life: a qualitative sudy. Aging Ment Health 2020; 24: 1654–61. PubMed

Davies K, Collerton J, Jagger Cet al. . Engaging the oldest old in research: lessons from the Newcastle 85+ study. BMC Geriatr 2010; 10: 64–72. PubMed PMC

Smaling HJA, Tilburgs B, Achterberg WP, Visser M. The impact of social distancing due to the COVID-19 pandemic on people with dementia, family carers and healthcare professionals: a qualitative study. Int J Environ Res Public Health 2022; 19: 519. 10.3390/ijerph19010519. PubMed DOI PMC

Implementation of an Advance Care Planning Intervention in Nursing Homes: An International Multiple Case Study

Consensus definition of advance care planning in dementia: A 33-country Delphi study