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Articles

Family Members’ Perspectives on the Unmet Care Needs of People Living With Dementia in Nursing Homes

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References

  • Act on Supporting the Functional Capacity of the Older Population and on Social and Health Care Services for Older Persons. (980/2012). Ministry of Social Affairs and Health, Finland. https://www.finlex.fi/fi/laki/ajantasa/2012/20120980#L3P18
  • Act on changing the Act on Supporting the Functional Capacity of the Older Population and on Social and Health Care Services for Older Persons. (604/2022). Ministry of Social Affairs and Health, Finland.
  • Alzheimer Europe. (2019). Dementia in Europe Yearbook 2019. Estimating the prevalence of dementia in Europe. Available at: https://www.alzheimer-europe.org/sites/default/files/alzheimer_europe_dementia_in_europe_yearbook_2019.pdf
  • Anttonen, A., & Karsio, O. (2017). Marketization from within: Changing governance of care services. In F. Martinelli, A. Anttonen & M. Mätzke (Eds.), Social services disrupted changes, challenges and policy implications for Europe in times of austerity. New Horizons in Social Policy. Elgar Online.
  • Arons, A. M., Krabbe, P. F., Schölzel-Dorenbos, C. J., van der Wilt, G. J., & Olde Rikkert, M. G. M. (2013). Quality of life in dementia: A study on proxy bias. BMC Medical Research Methodology, 13, 110. https://doi.org/10.1186/1471-2288-13-110
  • Benzinger, P., Wahl, H. W., Bauer, J. M., Keilhauer, A., Dutzi, I., Maier, S., Hölzer, N., Achterberg, W. P., & Denninger, N.-E. (2023). Consequences of contact restrictions for long-term care residents during the first months of COVID-19 pandemic: A scoping review. European Journal of Ageing, 20(1), 39. article number 39. https://doi.org/10.1007/s10433-023-00787-6
  • Boström, M., Ernsth Bravell, M., Björklund, A., & Sandberg, J. (2017). How older people perceive and experience sense of security when moving into and living in a nursing home: A case study. European Journal of Social Work, 20(5), 697–710. https://doi.org/10.1080/13691457.2016.1255877
  • Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–−101. https://doi.org/10.1191/1478088706qp063oa
  • Braun, V., & Clarke, V. (2019). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589–597. https://doi.org/10.1080/2159676X.2019.1628806
  • Brimblecombe, N., Pickard, L., King, D., & Knapp, M. (2017). Perceptions of unmet needs for community social care services in England: A comparison of working carers and the people they care for. Health & Social Care in the Community, 25(2), 435–446. https://doi.org/10.1111/hsc.12323
  • Castle, N. G. (2006). Family members as proxies for satisfaction with nursing home care. Joint Commission Journal on Quality and Patient Safety, 32(8), 452–458. https://doi.org/10.1016/S1553-7250(06)32059-4
  • Chiao, C. Y., Wu, H. S., & Hsiao, C. Y. (2015). Caregiver burden for informal caregivers of patients with dementia: A systematic review. International Nursing Review, 62(3), 340–−350. https://doi.org/10.1111/inr.12194
  • Covinsky, K. E., Pierluissi, E., & Johnston, B. (2011). Hospitalization-associated disability “She was probably able to ambulate, but I’m not sure”. JAMA, 306(16), 1782–−1793. https://doi.org/10.1001/jama.2011.1556
  • Duggleby, W., Schroeder, D., & Nekolaichuk, C. (2013). Hope and connection: The experience of family caregivers of persons with dementia living in a long-term care facility. BMC Geriatrics, 13(1), 112. https://doi.org/10.1186/1471-2318-13-112
  • Duggleby, W., Williams, A., Wright, K., & Bollinger, S. (2009). Renewing everyday hope: The hope experience of family caregivers of persons with dementia. Issues in Mental Health Nursing, 30(8), 514–521. https://doi.org/10.1080/01612840802641727
  • Ekström, K., Spelmans, S., Ahlström, G., Nilsen, P., Alftberg, Å., Wallerstedt, B., & Behm, L. (2019). Next of kin’s perceptions of the meaning of participation in the care of older persons in nursing homes: A phenomenographic study. Scandinavian Journal of Caring Sciences, 33(2), 400–408. https://doi.org/10.1111/scs.12636
  • Falzarano, F., Reid, M. C., Schultz, L., Meador, L. H., & Pillemer, K. (2020). Getting along in assisted living: Quality of relationships between family members and staff. The Gerontologist, 60(8), 1445–1455. https://doi.org/10.1093/geront/gnaa057
  • Finnish Institute for Health and Welfare. (2023). Sosiaali- ja terveysalan tilastollinen vuosikirja 2023 (julkari.fi) [Statistical yearbook on social welfare and health care 2023]. Finnish Institute for Health and Welfare (THL).
  • Finnish Ministry of Social Affairs and Health. (2020). Quality recommendation to guarantee a good quality of life and improved services for older persons 2020–2023: The Aim is an Age-friendly Finland. Helsinki: Finnish Ministry of Social Affairs and Health. http://urn.fi/URN:ISBN:978-952-00-8427-1
  • Finnish National Board on Research Integrity. (2023). Hyvä tieteellinen käytäntö ja sen loukkausepäilyjen käsitteleminen Suomessa. Guidelines of the Finnish National Board on Research Integrity. Helsinki. Available at: https://tenk.fi/fi/hyva-tieteellinen-kaytanto-htk
  • Givens, J. L., Lopez, R. P., Mazor, K. M., & Mitchell, S. L. (2012). Sources of stress for family members of nursing home residents with advanced dementia. Alzheimer Disease and Associated Disorders, 26(3), 254–259. https://doi.org/10.1097/wad.0b013e31823899e4
  • Graneheim, U., Johansson, A., & Lindgren, B.-M. (2014). Family caregivers’ experiences of relinquishing the care of a person with dementia to a nursing home: Insights from a meta-ethnographic study. Scandinavian Journal of Caring Sciences, 28(2), 215–224. https://doi.org/10.1111/scs.12046
  • Groenvynck, L., de Boer, B., Hamers, J. P. H., van Achterberg, T., van Rossum, E., & Verbeek, H. (2021). Toward a Partnership in the Transition from Home to a Nursing Home: The TRANSCIT Model. Journal of the American Medical Directors Association, 22(2), 351–356. https://doi.org/10.1016/j.jamda.2020.09.041
  • Hoek, L. J., van Haastregt, J. C., de Vries, E., Backhaus, R., Hamers, J. P., & Verbeek, H. (2021). Partnerships in nursing homes: How do family caregivers of residents with dementia perceive collaboration with staff? Dementia (London, England), 20(5), 1631–1648. https://doi.org/10.1177/1471301220962235
  • Holmgren, J., Emami, A., Eriksson, L. E., & Eriksson, H. (2013). Being perceived as a ‘visitor’ in the nursing staff’s working arena – the involvement of relatives in daily caring activities in nursing homes in an urban community in Sweden. Scandinavian Journal of Caring Sciences, 27(3), 677–685. https://doi.org/10.1111/j.1471-6712.2012.01077.x
  • Huang, H. L., Shyu, Y. I. L., Chen, M. C., Huang, C. C., Kuo, H. C., Chen, S. T., & Hsu, W. C. (2015). Family caregivers’ role implementation at different stages of dementia. Clinical Interventions in Aging, 10, 135–146. https://doi.org/10.2147/CIA.S60574
  • Jakobsen, R., Sellevold, G. S., Egede-Nissen, V., & Sørlie, V. (2019). Ethics and quality care in nursing homes: Relatives’ experiences. Nursing Ethics, 26(3), 767–−777. https://doi.org/10.1177/0969733017727151
  • Jones, K., Schnitzler, K., & Borgstrom, E. (2022). The implications of COVID-19 on health and social care personnel in long-term care facilities for older people: An international scoping review. Health & Social Care in the Community, 30(6), e3493–e3506. https://doi.org/10.1111/hsc.13969
  • Kröger, T. (2022). Care poverty. When older people’s needs remain unmet. Springer Nature e-book. Palgrave MacMillan. https://doi.org/10.1007/978-3-030-97243-1
  • Lethin, C., Leino-Kilpi, H., Roe, B., Soto, M. M., Saks, K., Stephan, A., Zwakhalen, S., Zabalegui, A., & Karlsson, S. (2016). Formal support for informal caregivers to older persons with dementia through the course of the disease: An exploratory, cross-sectional study. BMC Geriatrics, 16(1), 32. https://doi.org/10.1186/s12877-016-0210-9
  • Lima, J. C., & Allen, S. M. (2001). Targeting risk for unmet need: Not enough help versus no help at all. The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 56(5), S302–S310. https://doi.org/10.1093/geronb/56.5.s302
  • Lindeza, P., Rodrigues, M., Costa, J., Guerreiro, M., & Rosa, M. M. (2020). Impact of dementia on informal care: A systematic review of family caregivers’ perceptions. BMJ Supportive & Palliative Care, 20, 304. https://doi.org/10.1136/bmjspcare-2020-002242
  • Lindt, N., van Berkel, J., & Mulder, B. C. (2020). Determinants of overburdening among informal carers: A systematic review. BMC Geriatrics, 20(1), 304. https://doi.org/10.1186/s12877-020-01708-3
  • Ministry of Social Affairs and Health. (2019). Development of informal care and family care in 2015–2018. Conclusions and recommendations for further measures. http://urn.fi/URN:ISBN:978-952-00-4022-2
  • National Institute for Health and Welfare. (2024). Memory disorders - THL. Finnish Institute for Health and Welfare (THL).
  • OECD/European Union. (2018). Dementia prevalence. In Health at a glance: Europe 2018: State of health in the EU cycle. OECD Publishing. https://doi.org/10.1787/health_glance_eur-2018-19-en
  • O’Neill, M., Ryan, A., Tracey, A., & Laird, L. (2020). “You’re at their mercy”: Older peoples’ experiences of moving from home to a care home: A grounded theory study. International Journal of Older People Nursing, 15(2), e12305. https://doi.org/10.1111/opn.12305
  • Paananen, J., Rannikko, J., Harju, M., & Pirhonen, J. (2021). The impact of Covid-19-related distancing on the well-being of nursing home residents and their family members: A qualitative study. International Journal of Nursing Studies Advances, 3, 100031. https://doi.org/10.1016/j.ijnsa.2021.100031
  • Petrovic, A., & Konnert, C. A. (2017). How do family members deal with conflict in long-term care? Application of conflict theory. Innovation in Aging, 1(suppl_1), 853–853. https://doi.org/10.1093/geroni/igx004.3071
  • Pirhonen, J., Forma, L., & Pietilä, I. (2022). COVID-19 related visiting ban in nursing homes as a source of concern for residents’ family members: A cross sectional study. BMC Nursing, 21(1), 255. Open Access: https://rdcu.be/cVBU5 https://doi.org/10.1186/s12912-022-01036-4
  • Pirhonen, J., Vähäkangas, A., & Saarelainen, S. (2023). Religious bodies: Lutheran chaplains interpreting and asserting religiousness of people with severe dementia in Finnish nursing homes. Journal of Ageing and Longevity, 3(1), 92–106. https://www.mdpi.com/2673-9259/3/1/8 https://doi.org/10.3390/jal3010008
  • Powell, C., Blighe, A., Froggatt, K., McCormack, B., Woodward-Carlton, B., Young, J., Robinson, L., & Downs, M. (2018). Family involvement in timely detection of changes in health of nursing homes residents: A qualitative exploratory study. Journal of Clinical Nursing, 27(1-2), 317–327. https://doi.org/10.1111/jocn.13906
  • Puthenparambil, J. M., & Kröger, T. (2016). Using private social care services in Finland: Free or forced choices for older people? Journal of Social Service Research, 42(2), 167–−179. https://doi.org/10.1080/01488376.2015.1137534
  • Roberts, A. R., & Ishler, K. J. (2018). Family involvement in the nursing home and perceived resident quality of life. The Gerontologist, 58(6), 1033–1043. https://doi.org/10.1093/geront/gnx108
  • Sabat, S. R. (2006). Mind, meaning, and personhood in dementia: The effects of positioning. In Julian C. Hughes, Stephen J. Louw & Steven R. Sabat (eds.), Dementia: Mind, meaning and the person., 287–302. Oxford University Press.
  • Sury, L., Burns, K., & Brodaty, H. (2013). Moving in: Adjustment of people living with dementia going into a nursing home and their families. International Psychogeriatrics, 25(6), 867–−876. https://doi.org/10.1017/s1041610213000057
  • Szebehely, M., & Meagher, G. (2018). Nordic eldercare – Weak universalism becoming weaker? Journal of European Social Policy, 28(3), 294–−308. https://doi.org/10.1177/0958928717735062
  • Teahan, Á., Lafferty, A., Cullinan, J., Fealy, G., & O’Shea, E. (2021). An analysis of carer burden among family carers of people with and without dementia in Ireland. International Psychogeriatrics, 33(4), 347–−358. https://doi.org/10.1017/S1041610220000769
  • Tjia, J., Lemay, C. A., Bonner, A., Compher, C., Paice, K., Field, T., Mazor, K., Hunnicutt, J. N., Lapane, K. L., & Gurwitz, J. (2017). Informed family member involvement to improve the quality of dementia care in nursing homes. Journal of the American Geriatrics Society, 65(1), 59–−65. https://doi.org/10.1111/jgs.14299
  • Van Aerschot, L., Puthenparambil, J. M., Olakivi, A., & Kröger, T. (2022). Psychophysical burden and lack of support: Reasons for care workers’ intentions to leave their work in the Nordic countries. International Journal of Social Welfare, 31(3), 333–−346. https://doi.org/10.1111/ijsw.12520
  • Verbeek, H. (2017). Inclusion and Support of Family Members in Nursing Homes. In: Schüssler, S., Lohrmann, C. (eds.) Dementia in Nursing Homes., 67–−76. Springer. https://doi.org/10.1007/978-3-319-49832-4_6
  • Voutilainen, P., Backman, K., Isola, A., & Laukkala, H. (2006). Family members’ perceptions of the quality of long-term care. Clinical Nursing Research, 15(2), 135–−149. https://doi.org/10.1177/1054773805285697