Skip to main content
Top
Published in: BMC Geriatrics 1/2019

Open Access 01-12-2019 | Care | Research article

“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

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

Published in: BMC Geriatrics | Issue 1/2019

Login to get access

Abstract

Background

The coming years will see more persons with dementia living longer at home. However, “the home” is a complex concept with a multitude of meanings, varying among individuals and raising ethical and practical dilemmas in the support provided for this group. This study aims to increase the understanding of experiences and attitudes among persons with dementia related to living at home.

Methods

Qualitative interviews were conducted with 12 persons, 69 to 89 years old, with a dementia diagnosis and living at home. Using a hermeneutical approach, the interviews were analysed as single texts, as parts of a set of texts and as a whole single text. The writings of care philosopher Kari Martinsen on “The home” were chosen as a framework for the theoretical interpretation of the findings.

Results

The participants experienced a vital interconnectedness between the home and their lives, placing their home as a core foundation for life. Through stories of persisting love, they illuminated how their lived lives functioned as a foundation for their homes. Further, they described how progressing dementia disturbed rhythms of life at home, forcing them to adapt and change their routines and rhythms in life. Finally, in the hope of an enhanced future home the participants showed an acceptance of, but also a reluctance to, the prospect of having to move out of their homes at some future point.

Conclusion

The study suggests that the participants’ home generated existential meaning for the participating persons with dementia. Their experience of being at home was based on a variety of individual factors working together in various ways. These findings imply a need to understand what factors are important for the individual, as well as how these factors interact in order to provide support for this group of people.
Literature
1.
go back to reference Livingston G, Sommerlad A, Orgeta V, Costafreda SG, Huntley J, Ames D, Ballard C, Banerjee S, Burns A, Cohen-Mansfield J, et al. Dementia prevention, intervention, and care. Lancet. 2017;390(10113):2673–734.CrossRef Livingston G, Sommerlad A, Orgeta V, Costafreda SG, Huntley J, Ames D, Ballard C, Banerjee S, Burns A, Cohen-Mansfield J, et al. Dementia prevention, intervention, and care. Lancet. 2017;390(10113):2673–734.CrossRef
2.
go back to reference World Health Organization: dementia - a public health priority. United Kingdom: World Health Organisation; 2012. World Health Organization: dementia - a public health priority. United Kingdom: World Health Organisation; 2012.
3.
go back to reference Alzheimer's Society. Support. Stay. Save - care and support of people with dementia in their own homes. London: Alzheimer's. Society. 2011. Alzheimer's Society. Support. Stay. Save - care and support of people with dementia in their own homes. London: Alzheimer's. Society. 2011.
4.
go back to reference Gaugler JE, Yu F, Krichbaum K, Wyman JF. Predictors of nursing home admission for persons with dementia. Med Care. 2009;47(2):191–8.CrossRef Gaugler JE, Yu F, Krichbaum K, Wyman JF. Predictors of nursing home admission for persons with dementia. Med Care. 2009;47(2):191–8.CrossRef
5.
go back to reference Smebye KL, Kirkevold M, Engedal K. Ethical dilemmas concerning autonomy when persons with dementia wish to live at home: a qualitative, hermeneutic study. BMC Health Serv Res. 2016;16:21.CrossRef Smebye KL, Kirkevold M, Engedal K. Ethical dilemmas concerning autonomy when persons with dementia wish to live at home: a qualitative, hermeneutic study. BMC Health Serv Res. 2016;16:21.CrossRef
6.
go back to reference Forsund LH, Grov EK, Helvik AS, Juvet LK, Skovdahl K, Eriksen S. The experience of lived space in persons with dementia: a systematic meta-synthesis. BMC Geriatr. 2018;18(1):33.CrossRef Forsund LH, Grov EK, Helvik AS, Juvet LK, Skovdahl K, Eriksen S. The experience of lived space in persons with dementia: a systematic meta-synthesis. BMC Geriatr. 2018;18(1):33.CrossRef
7.
go back to reference Normann HK. Hjemmeopplevelse hos personer med demenssykdom. In: Hauge S, Jacobsen FF, editors. Hjem - Eldre og hjemlighet. Oslo: Cappelen Damm AS; 2008. p. 147–60. Normann HK. Hjemmeopplevelse hos personer med demenssykdom. In: Hauge S, Jacobsen FF, editors. Hjem - Eldre og hjemlighet. Oslo: Cappelen Damm AS; 2008. p. 147–60.
8.
go back to reference Aminzadeh F, Dalziel WB, Molnar FJ, Garcia LJ. Meanings, functions, and experiences of living at home for individuals with dementia at the critical point of relocation. J Gerontol Nurs. 2010;36(6):28–35.CrossRef Aminzadeh F, Dalziel WB, Molnar FJ, Garcia LJ. Meanings, functions, and experiences of living at home for individuals with dementia at the critical point of relocation. J Gerontol Nurs. 2010;36(6):28–35.CrossRef
9.
go back to reference de Witt L, Ploeg J, Black M. Living alone with dementia: an interpretive phenomenological study with older women. J Adv Nurs. 2010;66(8):1698–707.CrossRef de Witt L, Ploeg J, Black M. Living alone with dementia: an interpretive phenomenological study with older women. J Adv Nurs. 2010;66(8):1698–707.CrossRef
10.
go back to reference Svanstrom R, Sundler AJ. Gradually losing one's foothold--a fragmented existence when living alone with dementia. Dementia. 2015;14(2):145–63.CrossRef Svanstrom R, Sundler AJ. Gradually losing one's foothold--a fragmented existence when living alone with dementia. Dementia. 2015;14(2):145–63.CrossRef
11.
go back to reference O'Rourke HM, Duggleby W, Fraser KD, Jerke L. Factors that affect quality of life from the perspective of people with dementia: a metasynthesis. J Am Geriatr Soc. 2015;63(1):24–38.CrossRef O'Rourke HM, Duggleby W, Fraser KD, Jerke L. Factors that affect quality of life from the perspective of people with dementia: a metasynthesis. J Am Geriatr Soc. 2015;63(1):24–38.CrossRef
12.
go back to reference Zingmark K, Nordberg A, Sandman P-O. Experience of at-homeness and homesickness in patients with Alzheimer's disease. Am J Alzheimers Dis. 1993;8(3):10–6. Zingmark K, Nordberg A, Sandman P-O. Experience of at-homeness and homesickness in patients with Alzheimer's disease. Am J Alzheimers Dis. 1993;8(3):10–6.
14.
go back to reference Sixsmith J. The meaning of home: an exploratory study of environmental experience. J Environ Psychol. 1986;6(4):281–98.CrossRef Sixsmith J. The meaning of home: an exploratory study of environmental experience. J Environ Psychol. 1986;6(4):281–98.CrossRef
15.
go back to reference Molony SL. The meaning of home: a qualitative meta-synthesis. Res Gerontol Nurs. 2010;3(4):291–307.CrossRef Molony SL. The meaning of home: a qualitative meta-synthesis. Res Gerontol Nurs. 2010;3(4):291–307.CrossRef
16.
go back to reference Zingmark K, Norberg A, Sandman P-O. The experience of being at home throughout the life span. Investigation of persons aged from 2 to 102. Int J Aging Hum Dev. 1995;41(1):47–62.CrossRef Zingmark K, Norberg A, Sandman P-O. The experience of being at home throughout the life span. Investigation of persons aged from 2 to 102. Int J Aging Hum Dev. 1995;41(1):47–62.CrossRef
17.
go back to reference Ohlen J, Ekman I, Zingmark K, Bolmsjo I, Benzein E. Conceptual development of "at-homeness" despite illness and disease: a review. Int J Qual Stud Health. 2014;9:23677.CrossRef Ohlen J, Ekman I, Zingmark K, Bolmsjo I, Benzein E. Conceptual development of "at-homeness" despite illness and disease: a review. Int J Qual Stud Health. 2014;9:23677.CrossRef
18.
go back to reference Martinsen K. Care and vulnerability. Oslo: Akribe As; 2006. Martinsen K. Care and vulnerability. Oslo: Akribe As; 2006.
19.
go back to reference Gadamer H-G. Truth and method. London: Bloomsbury; 2013. Gadamer H-G. Truth and method. London: Bloomsbury; 2013.
20.
go back to reference Ministry of Health and Care Services N: Lov om pasient- og brukerrettigheter (Pasient- og brukerrettighetsloven) [Act relating to patients' rights (Patients' Rights Act)]. 1999. Ministry of Health and Care Services N: Lov om pasient- og brukerrettigheter (Pasient- og brukerrettighetsloven) [Act relating to patients' rights (Patients' Rights Act)]. 1999.
21.
go back to reference 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.CrossRef 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.CrossRef
22.
go back to reference Tranvag O, Petersen KA, Naden D. Dignity-preserving dementia care: a metasynthesis. Nurs Ethics. 2013;20(8):861–80.CrossRef Tranvag O, Petersen KA, Naden D. Dignity-preserving dementia care: a metasynthesis. Nurs Ethics. 2013;20(8):861–80.CrossRef
23.
go back to reference Han A, Radel J, McDowd JM, Sabata D. Perspectives of people with dementia about meaningful activities: a synthesis. Am J Alzheimers Dis. 2016;31(2):115–23.CrossRef Han A, Radel J, McDowd JM, Sabata D. Perspectives of people with dementia about meaningful activities: a synthesis. Am J Alzheimers Dis. 2016;31(2):115–23.CrossRef
24.
go back to reference Eriksen S, Helvik AS, Juvet LK, Skovdahl K, Forsund LH, Grov EK. The experience of relations in persons with dementia: a systematic meta-synthesis. Dement Geriatr Cogn Dis Extra. 2016;42(5–6):342–68.CrossRef Eriksen S, Helvik AS, Juvet LK, Skovdahl K, Forsund LH, Grov EK. The experience of relations in persons with dementia: a systematic meta-synthesis. Dement Geriatr Cogn Dis Extra. 2016;42(5–6):342–68.CrossRef
25.
go back to reference Aasmul I, Husebo BS, Flo E. Description of an advance care planning intervention in nursing homes: outcomes of the process evaluation. BMC Geriatr. 2018;18(1):26.CrossRef Aasmul I, Husebo BS, Flo E. Description of an advance care planning intervention in nursing homes: outcomes of the process evaluation. BMC Geriatr. 2018;18(1):26.CrossRef
26.
go back to reference Kitwood T. Dementia reconsidered: the person comes first. Buckingham: Open University Press; 1997. Kitwood T. Dementia reconsidered: the person comes first. Buckingham: Open University Press; 1997.
Metadata
Title
“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
Authors
Stein Erik Fæø
Bettina S. Husebo
Frøydis Kristine Bruvik
Oscar Tranvåg
Publication date
01-12-2019
Publisher
BioMed Central
Published in
BMC Geriatrics / Issue 1/2019
Electronic ISSN: 1471-2318
DOI
https://doi.org/10.1186/s12877-019-1171-6

Other articles of this Issue 1/2019

BMC Geriatrics 1/2019 Go to the issue