References

• Alonzi, A. S. J. B. M. (2009). Assessing staff needs for guidance on the Mental Capacity Act 2005. Nursing Times, 105(3), 24–27.
   PubMedGoogle Scholar
• Arnstein, S. R. (1969). A ladder of citizen participation. Journal of the American Institute of Planners, 35(4), 216–224. doi: 10.1080/01944366908977225
   Web of Science ®Google Scholar
• Bamford, C., & Bruce, E. (2000). Defining the outcomes of community care: The perspectives of older people with dementia and their carers. Ageing and Society, 20(5), 543–570. doi: 10.1017/S0144686X99007898
   Google Scholar
• Bosch-Domenech, A., Nagel, R., & Sanchez-Andres, J. V. (2010). Prosocial capabilities in Alzheimer’s patients. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 65B(1), 119–128. doi: 10.1093/geronb/gbp034
   PubMedGoogle Scholar
• Boyle, G. (2013). ‘She’s usually quicker than the calculator’: Financial management and decision-making in couples living with dementia. Health & Social Care in the Community, 21(5), 554–562. doi: 10.1111/hsc.12044
   PubMed Web of Science ®Google Scholar
• Brannelly, T. (2006). Negotiating ethics in dementia care: An analysis of an ethic of care in practice. Dementia (14713012), 5(2), 197–212. doi: 10.1177/1471301206062249
   Google Scholar
• Brannelly, T. (2011). Sustaining citizenship: People with dementia and the phenomenon of social death. Nursing Ethics, 18(5), 662–671. doi: 10.1177/0969733011408049
   PubMed Web of Science ®Google Scholar
• de Waal, H. (2014). Rethinking dementia: How autonomy and control can be fostered through the development of person centred services. Working with Older People, 18(2), 82–89. doi: 10.1108/WWOP-02-2014-0006
   Google Scholar
• Dixon-Woods, M., Cavers, D., Agarwal, S., Annandale, E., Arthur, A., Harvey, J., … Sutton, A. J. (2006). Conducting a critical interpretive synthesis of the literature on access to healthcare by vulnerable groups. BMC Medical Research Methodology, 6(1). doi: 10.1186/1471-2288-6-35
   PubMedGoogle Scholar
• Feinberg, L. F., & Whitlatch, C. J. (2002). Decision-making for persons with cognitive impairment and their family caregivers. American Journal of Alzheimer’s Disease and other Dementias, 17(4), 237–244. doi: 10.1177/153331750201700406
   PubMedGoogle Scholar
• Fetherstonhaugh, D., Tarzia, L., & 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(2), 143–150. doi: 10.1016/j.jaging.2012.12.007
   PubMed Web of Science ®Google Scholar
• Forbes, D., Ward-Griffin, C., Kloseck, M., Mendelsohn, M., St-Amant, O., DeForge, R., & Clark, K. (2011). “Her world gets smaller and smaller with nothing to look forward to”: Dimensions of social inclusion and exclusion among rural dementia care networks. Online Journal of Rural Nursing & Health Care, 11(2), 27–42.
   Google Scholar
• Gill, L., White, L., & Cameron, I. D. (2011). Interaction in community-based aged healthcare: Perceptions of people with dementia. Dementia (basel, Switzerland), 10(4), 539–554.
   Google Scholar
• Hamann, J., Bronner, K., Margull, J., Mendel, R., Diehl-Schmid, J., Bühner, M., … Perneczky, R. (2011). Patient participation in medical and social decisions in Alzheimer’s disease. Journal of the American Geriatrics Society, 59(11), 2045–2052. doi: 10.1111/j.1532-5415.2011.03661.x
   PubMed Web of Science ®Google Scholar
• Helgesen, A. K., Larsson, M., & Athlin, E. (2014). Patient participation in special care units for persons with dementia: A losing principle? Nursing Ethics, 21(1), 108–118. doi: 10.1177/0969733013486796
   PubMed Web of Science ®Google Scholar
• Hertogh, C. (2004). Between autonomy and security: Ethical questions in the care of elderly persons with dementia in nursing homes. In G. M. M. Jones & B. L. Miesen (Eds.), Care-giving in Dementia V3: Research and applications (Vol. 3, pp. 369–384). London: Routledge.
   Google Scholar
• Hirschman, K. B., Joyce, C. M., James, B. D., Xie, S. X., & Karlawish, J. H. T. (2005). Do Alzheimer’s disease patients want to participate in a treatment decision, and would their caregivers let them? The Gerontologist, 45(3), 381–388. doi: 10.1093/geront/45.3.381
   PubMed Web of Science ®Google Scholar
• Horton-Deutsch, S., Twigg, P., & Evans, R. (2007). Health care decision-making of persons with dementia. Dementia (14713012), 6(1), 105–120. doi: 10.1177/1471301207075643
   Google Scholar
• Jenssen, A. G. (2009). Brukermedvirkning i sosialtjenesten: en studie av sosialarbeidernes perspektiv.
   Google Scholar
• Kuhn, D., & Moss, L. (2002). Preserving autonomy and selfhood in Alzheimer’s disease: A case study. Journal of Social Work in Long-Term Care, 1(3), 17–35. doi: 10.1300/J181v01n03_06
   Google Scholar
• Landau, R., & Werner, S. (2012). Ethical aspects of using GPS for tracking people with dementia: Recommendations for practice. International Psychogeriatrics, 24(3), 358–366. doi: 10.1017/S1041610211001888
   PubMed Web of Science ®Google Scholar
• Larsen, L. S., Normann, H. K., & Hamran, T. (2017). Processes of user participation among formal and family caregivers in home-based care for persons with dementia. Dementia (basel, Switzerland), 16(2), 158–177.
   PubMedGoogle Scholar
• Mannion, G. (2007). Going spatial, going relational: Why “listening to children” and children’s participation needs reframing. Discourse: Studies in the Cultural Politics of Education, 28(3), 405–420.
   Google Scholar
• McDonald, A. (2010). The impact of the 2005 Mental Capacity Act on social workers’ decision making and approaches to the assessment of risk. British Journal of Social Work, 40(4), 1229–1246. doi: 10.1093/bjsw/bcq021
   Web of Science ®Google Scholar
• Menne, H. L., & Whitlatch, C. J. (2007). Decision-making involvement of individuals with dementia. The Gerontologist, 47(6), 810–819. doi: 10.1093/geront/47.6.810
   PubMed Web of Science ®Google Scholar
• Moise, P., Schwarzinger, M., & Um, M.-Y. (2004). Dementia care in 9 OECD countries.
   Google Scholar
• Olsson, A., Engstrom, M., Skovdahl, K., & Lampic, C. (2012). My, your and our needs for safety and security: Relatives’ reflections on using information and communication technology in dementia care. Scandinavian Journal of Caring Sciences, 26(1), 104–112. doi: 10.1111/j.1471-6712.2011.00916.x
   PubMed Web of Science ®Google Scholar
• O’Sullivan, G., Hocking, C., & Spence, D. (2014). Action research: Changing history for people living with dementia in New Zealand. Action Research, 12(1), 19–35. doi: 10.1177/1476750313509417
   Web of Science ®Google Scholar
• Rønning, R., & Solheim, L. J. (1998). Hjelp på egne premisser?: om brukermedvirkning i velferdstjenestene. Oslo: Universitetsforlaget.
   Google Scholar
• Rothera, I., Jones, R., Harwood, R., Avery, A. J., Fisher, K., James, V., … Waite, J. (2008). An evaluation of a specialist multiagency home support service for older people with dementia using qualitative methods. International Journal of Geriatric Psychiatry, 23(1), 65–72. doi: 10.1002/gps.1841
   PubMed Web of Science ®Google Scholar
• Sabat, S. R. (2005). Capacity for decision-making in Alzheimer’s disease: Selfhood, positioning and semiotic people. Australian and New Zealand Journal of Psychiatry, 39(11–12), 1030–1035. doi: 10.1080/j.1440-1614.2005.01722.x
   PubMed Web of Science ®Google Scholar
• Seim, S., & Slettebø, T. (2007). Brukermedvirkning i barnevernet. Oslo, Universitetsforlaget [User Participation in Child Protection Services, Oslo, Universitetsforlaget].
   Google Scholar
• Sherwin, S., & Winsby, M. (2011). A relational perspective on autonomy for older adults residing in nursing homes. Health Expectations, 14(2), 182–190. doi: 10.1111/j.1369-7625.2010.00638.x
   PubMed Web of Science ®Google Scholar
• Slettebø, T. (2013). Partnership with parents of children in care: A study of collective user participation in child protection services. British Journal of Social Work, 43(3), 579–595. doi: 10.1093/bjsw/bcr188
   Web of Science ®Google Scholar
• Smebye, K. L., Kirkevold, M., & Engedal, K. (2012). How do persons with dementia participate in decision making related to health and daily care? A multi-case study. (Research article) (Report). BMC Health Services Research, 12(1). doi:10.1186/1472-6963-12-241
   PubMedGoogle Scholar
• Smebye, K. L., Kirkevold, M., & Engedal, K. (2016). Ethical dilemmas concerning autonomy when persons with dementia wish to live at home: A qualitative, hermeneutic study. BMC Health Services Research, 16(1). doi: 10.1186/s12913-015-1217-1
   PubMedGoogle Scholar
• St-Amant, O., Ward-Griffin, C., DeForge, R. T., Oudshoorn, A., McWilliam, C., Forbes, D., … Hall, J. (2012). Making care decisions in home-based dementia care: Why context matters. Canadian Journal on Aging / La Revue Canadienne du Vieillissement, 31(4), 423–434. doi: 10.1017/S0714980812000396
   PubMed Web of Science ®Google Scholar
• Stenhouse, R., Tait, J., Hardy, P., & Sumner, T. (2013). Dangling conversations: Reflections on the process of creating digital stories during a workshop with people with early-stage dementia. Journal of Psychiatric & Mental Health Nursing, 20(2), 134–141. doi: 10.1111/j.1365-2850.2012.01900.x
   PubMed Web of Science ®Google Scholar
• Tritter, J. Q. (2009). Revolution or evolution: The challenges of conceptualizing patient and public involvement in a consumerist world. Health Expectations, 12(3), 275–287. doi: 10.1111/j.1369-7625.2009.00564.x
   PubMed Web of Science ®Google Scholar
• Tyrrell, J., Genin, N., & Myslinski, M. (2006). Freedom of choice and decision-making in health and social care views of older patients with early-stage dementia and their carers. Dementia (basel, Switzerland), 5(4), 479–502.
   Google Scholar
• White, E. B., & Montgomery, P. (2014). Electronic tracking for people with dementia: An exploratory study of the ethical issues experienced by carers in making decisions about usage. Dementia: The International Journal of Social Research and Practice, 13(2), 216–232. doi: 10.1177/1471301212460445
   Web of Science ®Google Scholar
• Wolfs, C. A., de Vugt, M. E., Verkaaik, M., Verkade, P.-J., & Verhey, F. R. J. (2010). Empowered or overpowered? Service use, needs, wants and demands in elderly patients with cognitive impairments. International Journal of Geriatric Psychiatry, 25(10), 1006–1012. doi: 10.1002/gps.2451
   PubMed Web of Science ®Google Scholar