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

Abstract

BackgroundFrontotemporal 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.MethodsA 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.ResultsRelatives 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.ConclusionsMaintaining 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.

Dignifying and undignifying aspects of care for people with dementia: a narrative review

“…Research exemplifies the time in which residents are waiting for care as an undignifying situation (51,(56)(57)(58). When they are cared for by strangers, due to a lack of continuity in staff and a high amount of temporary workers, the ability to establish dignifying relations is limited (31,45,46,51,58). Consequently, scarcity and hastiness of professional caregivers make residents feel neglected, overlooked, forgotten or being left helplessly alone (48,54,56).…”

“…Multiple studies (N = 11) suggest that personalisation and individualisation are essential dignifying aspects of care (31,34,36,38,39,42,44,46,(50)(51)(52). Some studies refer to providing person-centred care (35,44,52), address the importance to continue the self and identity (36,43,56), or point to respect and acknowledging personhood (30,35,44,49).…”

“…This also means having respect for someone's identity and individuality including their personal choices, beliefs and wishes (35,41,52,55,57). Research suggests the importance for residents to continue enjoyable and identity-strengthening activities, associated with previous or present interest and formal or informal skills (44)(45)(46)(47)(48)(49)52,55,57). When cognitively able, storytelling can maintain identity for people with dementia (36).…”

“…Studies based on the lived experiences of people with dementia showed their wish of being met as an equal human being with equal human worth (35,42,(47)(48)(49). Dignifying care practices ensure that residents feel like an active participant and expert on their own life (34)(35)(36)42,46,48,49,58). Professionals can show respect for self-determination of residents with mild cognitive impairment by informing about individual preferences and involving them in the care process (51)(52)(53)57).…”

“…Multiple studies (N = 9) mention insecurities of people with dementia and the need to provide confirmation and encouragement (34,35,42,43,(46)(47)(48)50,54). Studies report that a dignifying professional attitude is emphatic and compassionate (31,38,39,44).…”