They are still the same—family members’ stories about their relatives with dementia disorders as residents in a nursing home
Abstract
In order to better understand the context of suffering from dementia disorders, greater efforts should be made to understand and identify what persons with such disorders experience when living in a nursing home. The aim of this qualitative study was to gain further understanding of how persons with dementia disorders experienced and coped with their changed life situation after being relocated to a nursing home as described by their family members' perceptions. Qualitative data were collected from ten interviews with family members and evaluated using content analysis. The main findings suggest that residents with dementia disorders largely maintained their personality intact throughout the trajectory of illness as they were able to keep their habits and interests. The local environment of the nursing home and the residents' relationships to staff were important in order to feel accepted. Four categories were discerned during the analysis: living in limbo; coming to peace; keeping old habits and relationships; and thoughts about impending death. It is reasonable to believe that old habits and interests may be preserved as the embodiment of such habits are deeply rooted and connected to a person's identity even when going through various changes and transitions in life. Therefore, to be accepted as the person you are requires care and services to specific needs, i.e. person-centeredness. Lack of understanding from staff may therefore have an adverse effect on a person's self-respect and identity. For that reason, staff needs to reflect on their attitudes and relationships as well as extending their knowledge about how to address sensitive topics such as the residents' impending death. To achieve this support from managers is pivotal. Future research should focus on support to nursing staff to further knowledge and understanding about the individual changes resident go through near the end of life.
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Transitional periods represent particularly vulnerable moments for people with dementia and their caregivers due to disruption of care continuity, communication challenges, heightened risk of adverse events, and emotional and logistical burden on caregivers navigating complex health systems.
“Transitional periods represent particularly vulnerable moments for people with dementia and their caregivers due to the disruption of care continuity, communication challenges, heightened risk of adverse events, and the emotional and logistical burden placed on caregivers navigating complex health systems (Cronfalk et al., 2018; Delgado et al., 2022; Fogg et al., 2018).”
From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Cronfalk et al., 2018
Knowledge gaps were especially prominent in end-of-life care, where staff often avoided conversations about death and dying despite their importance.
“Knowledge gaps were especially prominent in end-of-life care, where staff often avoided conversations about death and dying despite their importance (Cronfalk et al., 2018; Mogan et al., 2022).”
From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Cronfalk et al., 2018
Families often described a sense of "waiting in limbo," gradually providing more support until a crisis necessitated formal care.
“Families often described a sense of “waiting in limbo,” gradually providing more support until a crisis necessitated formal care (Cronfalk et al., 2018).”
From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Cronfalk et al., 2018
Caregivers' involvement was driven by a desire to advocate for loved ones, oversee care plans, and preserve personal routines.
“This involvement was driven by a desire to advocate for loved ones, oversee care plans, and preserve personal routines (Cottrell et al., 2020; Cronfalk et al., 2018).”
From Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers. (2026) · cites this paper as Cronfalk et al., 2018
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- Authors
- Cronfalk, B. S., Norberg, A., & Ternestedt, B.
- Affiliations
- Karolinska Institutet (SE)
- Marie Cederschiöld University (SE)
- Corresponding author
- Cronfalk, Berit Seiger
- Venue
- Scandinavian Journal of Caring Sciences
- Publisher
- Wiley
- Published
- 2017-05-02
- Volume
- 32
- Issue
- 1
- Pages
- 168-176
- ISSN
- 0283-9318 (ISSN-L)
- 1471-6712
- OpenAlex
- W2611580413
- Cited by
- 12
- References
- 29
- Citations by year
- 2025: 2 · 2022: 4 · 2021: 1 · 2020: 2 · 2019: 1 · 2017: 1
- FWCI
- 1.77
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Scandinavian Journal of Caring Sciences (publishedVersion)
- PubMed (publishedVersion)
- Funders
- AFA Försäkring
- Vetenskapsrådet
- National Institute of Neurological Disorders and Stroke
- Topics
- Health Sciences › Health Professions › General Health Professions › Geriatric Care and Nursing Homes
- Health Sciences › Medicine › Psychiatry and Mental health › Dementia and Cognitive Impairment Research
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Keywords
- dementia, nursing homes, family perceptions, person-centred care, personhood, identity, staff relationships, acceptance, impending death, end-of-life care, coping, nursing staff support
- MeSH terms
- Adaptation, Psychological, Aged, Aged, 80 and over, Dementia, Family, Female, Homes for the Aged, Humans, Male, Nursing Homes, Patients, Quality of Life, Sweden, Qualitative Research
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