Home-dwelling persons with dementia's perception on care support: Qualitative study

Stein Erik Fæø, Frøydis Kristine Bruvik, Oscar Tranvåg, Bettina S Husebo, Stein Erik Fæø, Frøydis Kristine Bruvik, Oscar Tranvåg, Bettina S Husebo

Abstract

Background: Over the last years, there has been a growth in care solutions aiming to support home-dwelling persons with dementia. Assistive technology and voluntarism have emerged as supplements to traditional homecare and daycare centers. However, patient participation is often lacking in decision-making processes, undermining ethical principles and basic human rights.

Research objective: This study explores the perceptions of persons with dementia toward assistive technology, volunteer support, homecare services, and daycare centers.

Research design: A hermeneutical approach was chosen for this study, using a semi-structured interview guide to allow for interviews in the form of open conversations.

Participants and research context: Twelve home-dwelling persons with dementia participated in the study. The participants were recruited through municipal daycare centers.

Ethical considerations: Interviews were facilitated within a safe environment, carefully conducted to safeguard the participants' integrity. The Regional Committee for Medical and Health Research Ethics, Western Norway (Project number 2016/1630) approved the study.

Findings: The participants shared a well of reflections on experience and attitudes toward the aspects explored. They described assistive technology as possibly beneficial, but pointed to several non-beneficial side effects. Likewise, they were hesitant toward volunteer support, depending on how this might fit their individual preferences. Homecare services were perceived as a necessary means of care, its benefits ascribed to a variety of aspects. Similarly, the participants' assessments of daycare centers relied on specific aspects, with high individual variety.

Discussion and conclusion: The study indicates that the margins between whether these specific care interventions were perceived as supportive or infringing may be small and details may have great effect on the persons' everyday life. This indicates that patient participation in decision-making processes for this group is-in addition to be a judicial and ethical requirement-crucial to ensure adequate care and support.

Keywords: Assistive technology; care support; decision making; dementia; ethics; hermeneutics; patient participation; volunteer support.

Conflict of interest statement

Conflict of interest: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

References

    1. Livingston G, Sommerlad A, Orgeta V, et al. Dementia prevention, intervention, and care. The Lancet 2017; 390: 2673–2734.
    1. World Health Organization. Dementia: a public health priority. Geneva: World Health Organization, 2012.
    1. Ministry of Health and Care Services. Demensplan 2020. Et mer demensvennlig samfunn [Dementia plan 2020. A more dementia-friendly society] (ed. Helse- og omsorgsdepartementet). Oslo: Departementenes sikkerhets- og serviceorganisasjon, 2015.
    1. Dementia Policy Team. Prime minister’s challenge on dementia 2020—implementation plan. Department of Health, 2016,
    1. D’Onofrio G, Sancarlo D, Ricciardi F, et al. Information and communication technologies for the activities of daily living in older patients with dementia: a systematic review. J Alzheimers Dis 2017; 57(3): 927–935.
    1. Karlsen C, Ludvigsen MS, Moe CE, et al. Experiences of community-dwelling older adults with the use of telecare in home care services: a qualitative systematic review. JBI Database System Rev Implement Rep 2017; 15(12): 2913–2980.
    1. Van der Roest HG, Wenborn J, Pastink C, et al. Assistive technology for memory support in dementia. Cochrane Database Syst Rev 2017; 6: CD009627.
    1. Greenwood DE, Gordon C, Pavlou C, et al. Paradoxical and powerful: volunteers’ experiences of befriending people with dementia. Dementia 2018; 17(7): 821–839.
    1. Herron RV, Rosenberg MW, Skinner MW. The dynamics of voluntarism in rural dementia care. Health Place 2016; 41: 34–41.
    1. Von Kutzleben M, Schmid W, Halek M, et al. 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 Ment Health 2012; 16(3): 378–390.
    1. Rokstad AM, Engedal K, Kirkevold O, et al. The association between attending specialized day care centers and the quality of life of people with dementia. Int Psychogeriatr 2017; 29(4): 627–636.
    1. Strandenæs MG, Lund A, Rokstad AMM. Experiences of attending day care services designed for people with dementia—a qualitative study with individual interviews. Aging Ment Health 2018; 22(6): 764–772.
    1. Soderhamn U, Aasgaard L, Landmark B. Attending an activity center: positive experiences of a group of home-dwelling persons with early-stage dementia. Clin Interv Aging 2014; 9: 1923–1931.
    1. Dawson A, Bowes A, Kelly F, et al. Evidence of what works to support and sustain care at home for people with dementia: a literature review with a systematic approach. BMC Geriatr 2015; 15: 59.
    1. Fazio S, Pace D, Flinner J, et al. The fundamentals of person-centered care for individuals with dementia. Gerontologist 2018; 58(Suppl. 1): S10–S19.
    1. Taghizadeh Larsson A, Osterholm JH. How are decisions on care services for people with dementia made and experienced? A systematic review and qualitative synthesis of recent empirical findings. Int Psychogeriatr 2014; 26(11): 1849–1862.
    1. Smebye KL, Kirkevold M, Engedal K. How do persons with dementia participate in decision making related to health and daily care? A multi-case study. BMC Health Serv Res 2012; 12: 241.
    1. Elliott BA, Gessert CE, Peden-McAlpine C. Family decision-making in advanced dementia: narrative and ethics. Scand J Caring Sci 2009; 23(2): 251–258.
    1. Moe A, Hellzen O, Enmarker I. The meaning of receiving help from home nursing care. Nurs Ethics 2013; 20(7): 737–747.
    1. Fetherstonhaugh D, Tarzia L, Nay R. Being central to decision making means I am still here! The essence of decision making for people with dementia. J Aging Stud 2013; 27(2): 143–150.
    1. Cahill S. Dementia and human rights. Bristol: Policy Press, 2018.
    1. Office for the High Commissioner for Human Rights (OHCHR). UN Committee on the Rights of Persons with Disabilities, general comment no. 1, article 12: equal recognition before the law (adopted at the 11th session, April 2014). UN Doc. No. CRPD/C/GC/1,
    1. World Health Organization. ICD-10—The ICD-10 classification of mental and behavioural disorders. Geneva: World Health Organization.
    1. Ministry of Health and Care Services. Lov om pasient- og brukerrettigheter (pasient- og brukerrettighetsloven). [Act relating to patients’ rights (Patients’ Rights Act)], 1999,
    1. World Medical Association. World Medical Association Declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA 2013; 310(20): 2191–2194.
    1. Gadamer H-G. Truth and method. London: Bloomsbury, 2013.
    1. Normann HK. Hjemmeopplevelse hos personer med demenssykdom. [Experience of home in persons with dementia] In: Hauge S, Jacobsen FF. (eds) Hjem—Eldre og hjemlighet. [Home—older people and home life]. Oslo: Cappelen Damm AS, 2008, pp. 147–160.
    1. Fæø SE, Husebo BS, Bruvik FK, et al. “We live as good a life as we can, in the situation we’re in”—the significance of the home as perceived by persons with dementia. BMC Geriatr 2019; 19(1): 158.
    1. Heggestad AKT, Nortvedt P, Slettebo A. The importance of moral sensitivity when including persons with dementia in qualitative research. Nurs Ethics 2013; 20(1): 30–40.
    1. O’Rourke HM, Duggleby W, Fraser KD, et al. Factors that affect quality of life from the perspective of people with dementia: a metasynthesis. J Am Geriatr Soc 2015; 63(1): 24–38.
    1. Tranvag O, Petersen KA, Naden D. Crucial dimensions constituting dignity experience in persons living with dementia. Dementia 2016; 15(4): 578–595.
    1. Hedman R, Hansebo G, Ternestedt BM, et al. Expressed sense of self by people with Alzheimer’s disease in a support group interpreted in terms of agency and communion. J Appl Gerontol 2016; 35(4): 421–443.
    1. Hawley-Hague H, Boulton E, Hall A, et al. Older adults’ perceptions of technologies aimed at falls prevention, detection or monitoring: a systematic review. Int J Med Inform 2014; 83: 416–426.
    1. Han A, Radel J, McDowd JM, et al. Perspectives of people with dementia about meaningful activities: a synthesis. Am J Alzheimers Dis Other Demen 2016; 31(2): 115–123.
    1. Martinsen K. Care and vulnerability. Oslo: Akribe, 2006, p. 186.
    1. Nygård L. The stove timer as a device for older adults with cognitive impairment or dementia: different professionals’ reasoning and actions. Technol Disabil 2009; 21: 53–66.
    1. Kitwood T. Dementia reconsidered: the person comes first. Buckingham: Open University Press, 1997.
    1. Eriksen S, Helvik AS, Juvet LK, et al. The experience of relations in persons with dementia: a systematic meta-synthesis. Dement Geriatr Cogn Disord 2016; 42(5–6): 342–368.
    1. Pennington C, Davey K, Ter Meulen R, et al. Tools for testing decision-making capacity in dementia. Age Ageing 2018; 47(6): 778–784.
    1. Tranvag O, Petersen KA, Naden D. Dignity-preserving dementia care: a metasynthesis. Nurs Ethics 2013; 20(8): 861–880.
    1. Lincoln YS, Guba EG. Naturalistic inquiry. Newbury Park, CA: SAGE, 1985.

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