Mid Sweden University

The focus of the current study was to explore nursing home staff's understanding and how they approach family caregivers' existential life situations when caring for individuals with dementia. A qualitative interview study was conducted with 20 nursing staff in two nursing homes in northern Sweden. Face-to-face interviews were analyzed using interpretive content analysis. One overarching theme with three themes and nine subthemes comprised the findings. The themes describe how nursing staff were “in between” when they cared for individuals with dementia and encountered family caregivers' existential life situations. Nurses acted as advocates and safeguarded family caregivers via dialogues and interactions. Nurses were supporters and by “being in between” they eased family caregivers' feelings of powerlessness in relation to dying and death. “Being in between” may give nurses a deeper understanding of family caregivers' existential needs, thus increasing family caregivers' well-being.

The focus of the current study was to explore nursing home staff's understanding and how they approach family caregivers' existential life situations when caring for individuals with dementia. A qualitative interview study was conducted with 20 nursing staff in two nursing homes in northern Sweden. Face-to-face interviews were analyzed using interpretive content analysis. One overarching theme with three themes and nine subthemes comprised the findings. The themes describe how nursing staff were "in between" when they cared for individuals with dementia and encountered family caregivers' existential life situations. Nurses acted as advocates and safeguarded family caregivers via dialogues and interactions. Nurses were supporters and by"being in between"they eased family caregivers'feelings of powerlessness in relation to dying and death."Being in between" may give nurses a deeper understanding of family caregivers'existential needs, thus increasing family caregivers' well-being.

Aims and objectives: To investigate how end-of-life care was described by healthcare professionals in records of deceased persons affected by dementia who had lived in Swedish nursing homes. Background: In the final stage of dementia disease, the persons are often cared for at nursing homes and they often die there. The research concurs that a palliative approach to end-of-life care is essential but there are still some limitations regarding research about what constitutes the end-of-life care provided to persons affected by dementia in Sweden. Design: Descriptive qualitative method with a retrospective approach. Method: Nursing records (n = 50) and medical records (n = 50) were retrospectively reviewed in two nursing homes. The analysis was conducted using deductive and inductive content analysis. Three phases of The Liverpool Care Pathway; Initial assessment, Continuous assessment and Follow-up, were used deductively to first sort the text in the records, then the text in each phase was further analysed with inductive content analysis. Four categories and 11 subcategories described the content in the records. Results: The end-of-life care was described in the healthcare records based on such categories as decision-making, participation and communication, assessment and prevention of symptom and following up after the residents had died. Conclusion: Paticularly, physical symptoms were documented and, to a lesser degree, psychological or existential/spiritual needs. Relevance to clinical practice: Healthcare professionals must have a holistic view of the person affected by dementia during the end-of-life care and, according to this study, more focus must be placed on their psychosocial and existential needs in the documentation of end-of-life care.

Background:

Previous research describes spouses and adult children of people with dementia as a homogeneous group using one term: family caregivers. Recent research shows that the needs and experiences of spouses and adult children differ, therefore they cannot be studied as a homogeneous group.

Aims:

The aim of the study was to describe the shift in existential life situations of adult children of a parent with dementia relocated to nursing homes.

Design:

This is a qualitative study with an interpretive approach.

Methods:

Face-to-face interviews were held with 11 adult children aged 48-65 years. The interviews lasted 30–60 minutes and data were analysed using interpretive content analysis.

Findings:

The adult children described how they experienced their life situation before and after their parents’ relocation. Before relocation they described feelings of powerlessness, loneliness in their responsibilities, loss and guilt. After relocation they had feelings of freedom, ongoing responsibility, living with loss and having a new relationship with death.

Conclusion:

The most important finding in our study was that adult children developed a different relationship with death than before the parent became affected by dementia. It is essential that healthcare staff understand and address the adult children’s existential life situations and the suffering they are experiencing. Healthcare staff need to be conscious about adult children’s needs for support to address their existential life situations before and after their parents relocate to nursing homes.

Objectives: The aim was to describe the existential life situations of spouses who care for persons with dementia, before and after relocation to nursing homes.Method: This was a qualitative study among 11 spouses of persons with dementia, recruited via purposeful sampling. Data were collected through interviews and analysed with interpretive content analysis.Results: Before the relocation to nursing homes, the spouses' existential life situations were characterized by feelings of shame and guilt, being isolated in the home. Spouses were also exposed to psychological threats, physical violence, and had feelings of placing one's own needs last. After the relocation, spouses described feelings of guilt and freedom, living with grief and thoughts of death, feelings of loneliness in the spousal relationship, and striving for acceptance despite a lack of completion.Conclusion: The existential life situation of spouses of persons with dementia is about being in limit situations which changes when the ill person relocates to a nursing home. This is important knowledge for health care staff to bear in mind at nursing homes when encountering spouses.