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The key factors for the engagement of primary stakeholders in decision-making for the future care of people with dementia living in the community: a systematic integrative review

  • Michelle Lai (a1), Yun-Hee Jeon (a1) and Heather McKenzie (a1)



Engagement of people with dementia who are living in the community, their family or carers, and healthcare professionals in decision-making related to their future care is an area yet to be explored in the literature. In particular, little is known about the factors most likely to underpin their engagement.


To identify key factors for the engagement of the person with dementia living in the community, as well as their family or carer and their healthcare professionals in decision-making processes related to future care.


This is an integrative review guided by the PRISMA guidelines; the Mixed Methods Appraisal Tool was used to assess study quality. MEDLINE, PubMed, CINAHL, PsycINFO and Embase databases were searched for articles published from 2012 to 2018 that focused on people with dementia who live in the community, their family or carers, and community-based healthcare professionals.


Twenty articles were included in the review, and six key factors were identified through thematic analysis: knowledge and understanding of dementia and decision-making for the future, valuing decision-making for the future, healthcare professionals’ communication skills, timing of initiating conversations, relationship quality, and orientation to the future.


This review identifies the six key factors required for the engagement of the three primary key stakeholders in decision-making about the future care of people with dementia. It also situates the factors within the complex context in which people with dementia, their family or carers, and healthcare professionals typically find themselves.


Corresponding author

Correspondence should be addressed to: Michelle Lai, Susan Wakil School of Nursing and Midwifery, Faculty of Medicine and Health, The University of Sydney, 88 Mallett Street, Camperdown, New South Wales 2050, Australia. Phone: +61 2 8627 5653; Fax: +61 2 8627 1500. Email:


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Abdul-Razzak, A., You, J., Sherifali, D., Simon, J. and Brazil, K. (2014). ‘Conditional candour’ and ‘knowing me’: an interpretive description study on patient preferences for physician behaviours during end-of-life communication. BMJ Open, 4, e005653.
Ampe, S., Sevenants, A., Smets, T., Declercq, A. and Van Audenhove, C. (2017). Advance care planning for nursing home residents with dementia: influence of ‘we DECide’ on policy and practice. Patient Education and Counselling, 100, 139146.
Australian Commission on Safety and Quality in Healthcare. (2018). Shared Decision Making [Online]. Available at:; last accessed 29 April 2018.
Beernaert, K. et al. (2014). Early identification of palliative care needs by family physicians: a qualitative study of barriers and facilitators from the perspective of family physicians, community nurses, and patients. Palliative Medicine, 28, 480490.
Brazil, K., Carter, G., Galway, K., Watson, M. and Van Der Steen, J. T. (2015). General practitioners perceptions on advance care planning for patients living with dementia. BMC Palliative Care, 14, 14.
Bronner, K., Perneczky, R., Mccabe, R., Kurz, A. and Hamann, J. (2016). Which medical and social decision topics are important after early diagnosis of Alzheimer’s disease from the perspectives of people with Alzheimer’s disease, spouses and professionals? BMC Research Notes, 9, 149.
Broom, A. (2015). Dying: A Social Perspective on the End of Life. Surrey, UK: Ashgate Publishing Limited.
Bunn, F. et al. (2012). Psychosocial factors that shape patient and carer experiences of dementia diagnosis and treatment: a systematic review of qualitative studies. PLoS Medicine, 9, e1001331.
Campbell, S. et al. (2016). Living with uncertainty: mapping the transition from pre-diagnosis to a diagnosis of dementia. Journal of Aging Studies, 37, 4047.
Carter, G., Van Der Steen, J. T., Galway, K. and Brazil, K. (2017). General practitioners’ perceptions of the barriers and solutions to good-quality palliative care in dementia. Dementia, 16, 7995.
Cheong, K., Fisher, P., Goh, J., Ng, L., Koh, H. M. and Yap, P. (2015). Advance care planning in people with early cognitive impairment. BMJ Supportive & Palliative Care, 5, 6369.
Curtis, J. R. (2008). Palliative and end-of-life care for patients with severe COPD. European Respiratory Journal, 32, 796803.
De Boer, M. E., Dröes, R.-M., Jonker, C., Eefsting, J. A. and Hertogh, C. M. P. M. (2012). Thoughts on the future: the perspectives of elderly people with early-stage Alzheimer’s disease and the implications for advance care planning. AJOB Primary Research, 3, 1422.
De Vleminck, A. et al. (2014). Barriers to advance care planning in cancer, heart failure and dementia patients: a focus group study on general practitioners’ views and experiences. PLoS One, 9, e84905.
De Vleminck, A., Pardon, K., Beernaert, K., Houttekier, D., Vander Stichele, R. and Deliens, L. (2016). How do general practitioners conceptualise advance care planning in their practice? A qualitative study. PLoS One, 11, e0153747.
Dening, K. H., Jones, L. and Sampson, E. L. (2013). Preferences for end-of-life care: a nominal group study of people with dementia and their family carers. Palliative Medicine, 27, 409417.
Dening, K. H., King, M., Jones, L. and Sampson, E. L. (2017). Healthcare decision-making: past present and future, in light of a diagnosis of dementia. International Journal of Palliative Nursing, 23, 411.
Department of Health. (2017). Palliative Care - Advance Care Planning [Online]. Available at:; last accessed 7 June 2017.
Dickinson, C., Bamford, C., Exley, C., Emmett, C., Hughes, J. and Robinson, L. (2013). Planning for tomorrow whilst living for today: the views of people with dementia and their families on advance care planning. International Psychogeriatrics, 25, 20112021.
Drummond, C. and Simpson, A. (2017). ‘Who’s actually gonna read this?’ An evaluation of staff experiences of the value of information contained in written care plans in supporting care in three different dementia care settings. Journal of Psychiatric and Mental Health Nursing, 24, 377386.
Elwyn, G. et al. (2012). Shared decision making: a model for clinical practice. Journal of General Internal Medicine, 27, 13611367.
Eriksen, S., Helvik, A. S., Juvet, L. K., Skovdahl, K., Førsund, L. H. and Grov, E. K. (2016). The experience of relations in persons with dementia: a systematic meta-synthesis. Dementia and Geriatric Cognitive Disorders, 42, 342368.
Fetherstonhaugh, D., Tarzia, L. and Nay, R. (2013). Being central to decision making means I am still here!: the essence of decision making for people with dementia. Journal of Aging Studies, 27, 143150.
Garand, L., Dew, M. A., Lingler, J. H. and Dekosky, S. T. (2011). Incidence and predictors of advance care planning among persons with cognitive impairment. The American Journal of Geriatric Psychiatry, 19, 712720.
Gilissen, J. et al. (2017). Preconditions for successful advance care planning in nursing homes: a systematic review. International Journal of Nursing Studies, 66, 4759.
Gorska, S., Forsyth, K. and Maciver, D. (2018). Living with dementia: a meta-synthesis of qualitative research on the lived experience. Gerontologist, 58, e180e196.
Groen-van de Ven, L. et al. (2018). The challenges of shared decision making in dementia care networks. International Psychogeriatrics, 30, 843857.
Hilgeman, M. M., Allen, R. S., Snow, A. L., Durkin, D. W., Decoster, J. and Burgio, L. D. (2014). Preserving Identity and Planning for Advance Care (PIPAC): preliminary outcomes from a patient-centered intervention for individuals with mild dementia. Aging & Mental Health, 18, 411424.
Hill, S. R., Mason, H., Poole, M., Vale, L. and Robinson, L. (2017). What is important at the end of life for people with dementia? The views of people with dementia and their carers. International Journal of Geriatric Psychiatry, 32, 10371045.
Hirschman, K. B., Kapo, J. M. and Karlawish, J. H. (2008). Identifying the factors that facilitate or hinder advance planning by persons with dementia. Alzheimer Disease and Associated Disorders, 22, 293–8.
Hoffmann, T. C. et al. (2014). Shared decision making: what do clinicians need to know and why should they bother? Medical Journal of Australia, 201, 3539.
Huang, H. L., Shyu, Y. L., Weng, L. C., Chen, K. H. and Hsu, W. C. (2018). Predictors of advance directives among nursing home residents with dementia. International Psychogeriatrics, 30, 341353.
Johnson, S., Butow, P., Kerridge, I. and Tattersall, M. (2016). Advance care planning for cancer patients: a systematic review of perceptions and experiences of patients, families, and healthcare providers. Psycho-Oncology, 25, 362386.
La Fontaine, J. and Oyebode, J. R. (2013). Family relationships and dementia: a synthesis of qualitative research including the person with dementia. Ageing & Society, 34, 12431272.
Lewis, M., Rand, E., Mullaly, E., Mellor, D. and Macfarlane, S. (2015). Uptake of a newly implemented advance care planning program in a dementia diagnostic service. Age & Ageing, 44, 10451049.
Mazaheri, M., Eriksson, L. E., Heikkila, K., Nasrabadi, A. N., Ekman, S. L. and Sunvisson, H. (2013). Experiences of living with dementia: qualitative content analysis of semi-structured interviews. Journal of Clinical Nursing, 22, 3032–41.
Miller, L. M., Whitlatch, C. J. and Lyons, K. S. (2016). Shared decision-making in dementia: a review of patient and family carer involvement. Dementia, 15, 11411157.
Moher, D., Liberati, A., Tetzlaff, J. and Altman, D. G. (2009). Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Medicine, 6, e1000097.
O’Kelly, A., Howarth, G., Richards, G. and Butcher, T. (2015). Advance planning for end of life care. Journal of Dementia Care, 23, 3033.
Patton, M. Q. (2015). Qualitative Research & Evaluation Methods: Integrating Theory and Practice, 4th ed. Thousand Oaks, CA: SAGE Publications, Inc.
Pesonen, H.-M., Remes, A. M. and Isola, A. (2014). Managing life-altering situations: a qualitative longitudinal study of the experiences of people with memory disorders and their family caregivers. Journal of Nursing Education and Practice, 4, 6073.
Pluye, P. et al. (2011). Proposal: A mixed methods appraisal tool for systematic mixed studies reviews [Online]. Montreal, Canada: Department of Family Medicine, McGill University.
Poole, M. et al. (2018). End-of-life care: a qualitative study comparing the views of people with dementia and family carers. Palliative Medicine, 32, 631642.
Poppe, M., Burleigh, S. and Banerjee, S. (2013). Qualitative evaluation of advanced care planning in early dementia (ACP-ED). PLoS One, 8, e60412.
Quinn, C., Clare, L., Pearce, A. and Van Dijkhuizen, M. (2008). The experience of providing care in the early stages of dementia: an interpretative phenomenological analysis. Aging & Mental Health, 12, 769778.
Read, S. T., Toye, C. and Wynaden, D. (2017). Experiences and expectations of living with dementia: a qualitative study. Collegian, 24, 427432.
Robinson, L., Dickinson, C., Bamford, C., Clark, A., Hughes, J. and Exley, C. (2013). A qualitative study: professionals’ experiences of advance care planning in dementia and palliative care, ‘a good idea in theory but…’. Palliative Medicine, 27, 401408.
Ryan, T., Amen, K. M. and Mckeown, J. (2017). The advance care planning experiences of people with dementia, family caregivers and professionals: a synthesis of the qualitative literature. Annals of Palliative Medicine, 6, 380389.
Ryan, T., Gardiner, C., Bellamy, G., Gott, M. and Ingleton, C. (2012). Barriers and facilitators to the receipt of palliative care for people with dementia: the views of medical and nursing staff. Palliative Medicine, 26, 879886.
Sampson, E. L. et al. (2011). Palliative assessment and advance care planning in severe dementia: an exploratory randomized controlled trial of a complex intervention. Palliative Medicine, 25, 197209.
Sampson, E. L. et al. (2018). Living and dying with advanced dementia: a prospective cohort study of symptoms, service use and care at the end of life. Palliative Medicine, 32, 668681.
Scott, I. A., Mitchell, G. K., Reymond, E. J. and Daly, M. P. (2013). Difficult but necessary conversations--the case for advance care planning. Medical Journal of Australia, 199, 662666.
Sinclair, C. et al. (2018). How couples with dementia experience healthcare, lifestyle, and everyday decision-making. International Psychogeriatrics, 30, 16391647.
Stephan, A., Möhler, R., Renom-Guiteras, A. and Meyer, G. (2015). Successful collaboration in dementia care from the perspectives of healthcare professionals and informal carers in Germany: results from a focus group study. BMC Health Services Research, 15, 208.
Tay, S. Y., Davison, J., Jin, N. C. andYap, P. L. (2015). Education and executive function mediate engagement in advance care planning in early cognitive impairment. Journal of the American Medical Directors Association, 16, 957962.
Van Der Steen, J. T. et al. (2014). Factors associated with initiation of advance care planning in dementia: a systematic review. Journal of Alzheimers Disease, 40, 743757.
Vandervoort, A., Houttekier, D., Vander Stichele, R., Van Der Steen, J. T. and Van Den Block, L. (2014). Quality of dying in nursing home residents dying with dementia: does advanced care planning matter? A nationwide postmortem study. PLoS One, 9, e91130.
Von Kutzleben, M., Schmid, W., Halek, M., Holle, B. and Bartholomeyczik, S. (2012). Community-dwelling persons with dementia: what do they need? What do they demand? What do they do? A systematic review on the subjective experiences of persons with dementia. Aging & Mental Health, 16, 378390.
Whittemore, R. and Knafl, K. (2005). The integrative review: updated methodology. Journal of Advanced Nursing, 52, 546553.



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