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BMC Health Serv Res. 2017 Jun 23;17(1):432. doi: 10.1186/s12913-017-2378-x.

Dignity in people with frontotemporal dementia and similar disorders - a qualitative study of the perspective of family caregivers.

Author information

1
Department of Nursing and Health Promotion, Faculty of Health Sciences, Oslo and Akershus University College, Oslo, Norway. mette.sagbakken@hioa.no.
2
The Norwegian Centre for Migration and Minority Health (NAKMI), Oslo, Norway. mette.sagbakken@hioa.no.
3
Department of Nursing and Health Promotion, Faculty of Health Sciences, Oslo and Akershus University College, Oslo, Norway.
4
Department of Psychiatry of Old Age, Oslo University Hospital, Ullevaal, Oslo & Institute of Clinical Medicine, University of Oslo, Oslo, Norway.
5
Inland Norway University of Applied Sciences, Faculty of Public Health, Institute of Health Sciences, PBox 400, N-2418, Elverum, Norway.
6
Department of Physiotherapy, Oslo and Akershus University College, Faculty of Health, Pb 4, St Olavs pl, N-0130, Oslo, Norway.

Abstract

BACKGROUND:

Frontotemporal dementia (FTD) constitutes on average 10-15% of dementia in younger persons (≤65 years old), but can also affect older people. These patients demonstrate a decline in social conduct, and/or language aphasias, apathy, and loss of insight that is gradual and progressive. Preservation of dignity seems to be highly relevant both before and after admission to different types of institutionalized care, but the research is scant. From the perspective of close relatives, this study aims to develop knowledge related to dignified or undignified care of patients with FTD and similar conditions.

METHODS:

A qualitative, descriptive, and explorative design were employed to address the aims of this study. We interviewed nine relatives of people with FTD and similar conditions living in nursing homes, and two relatives of people living at home but attending day center 5 days a week.

RESULTS:

Relatives described the transition from being a close relative to someone who had little influence or knowledge of what constituted the care and the daily life of their loved ones. According to relatives' descriptions, patients are deprived of dignity in various ways: through limited interaction with peers and close relatives, limited confirmation of identity through staff who know them well, lack of possibilities for making autonomous decisions or entertaining meaningful roles or activities. Examples provided from the day care centres show how dignity is maintained through identity-strengthening activities conducted in different places, under various kinds of supervision and care, and together with people representing different roles and functions.

CONCLUSIONS:

Maintaining a link with the world outside the institution, through closer cooperation between the institution and family members, and/or by the use of day care centres, seems to facilitate prevention of many of the factors that may threaten dignified care.

KEYWORDS:

Day care centre; Dementia; Dignity; Nursing homes; Relatives

PMID:
28645277
PMCID:
PMC5481930
DOI:
10.1186/s12913-017-2378-x
[Indexed for MEDLINE]
Free PMC Article

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