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Behavioural disturbances in patients with frontotemporal lobe degeneration focusing on caregiver burden at home and in nursing homes

Aim and objective To explore the challenges faced by family caregivers of people with frontotemporal dementia and other forms of dementia affecting the frontal and temporal lobes causing behavioural disturbances through a qualitative approach with in‐depth interviews. Background Studies of different forms of dementia involving degeneration of the frontal and temporal lobes have mainly focused on the neurophysiology and physiology of the disease and on caregivers’ health.

Tue, 08/04/2020 - 14:33

Development and validation of the scale for partnership in care—for family (SPIC-F)

This study aims to develop and validate the Scale for Partnership in Care between staff and families of older adult nursing home (NH) residents—for Family (SPIC-F). The components of partnership were identified on the basis of literature reviews and focus group interviews. The content validity of 41 preliminary items was verified by 10 experts, and a pilot study was conducted. The reliability and validity of the instrument was tested on 330 families of older adult NH residents.

Tue, 07/28/2020 - 14:37

Development of a family caregiver needs-assessment scale for end-of-life care for senility at home (FADE)

Aim: This study aimed to develop a “family caregiver needs-assessment scale for end-of-life care for senility at home” (FADE) and examine its reliability and validity. Method: A draft item pool was developed based on a literature review, and simplified to 30 items in four domains. Next, the item pool was reviewed by four visiting nurses and four researchers and refined to 15 items. A cross-sectional study was then conducted using a self-reported questionnaire. Questionnaires were sent to 2703 visiting nurses.

Wed, 01/22/2020 - 16:26

Female Family Caregivers' Experiences During Nursing Home Admission: A Phenomenological Qualitative Study

The experience of nursing home (NH) admission has a significant impact on older adults and their relatives. The aim of the current study is to describe the life experiences of female family caregivers (N = 20) after long-stay NH admission of their relative. A qualitative phenomenological approach was followed with purposeful sampling. Data were collected over 18 months using unstructured interviews, letters, and diaries and were analyzed using systematic text condensation analysis.

Wed, 09/11/2019 - 13:57

Work-Related Opportunity Costs Of Providing Unpaid Family Care In 2013 And 2050

Older Americans living in the community who need help with functional limitations overwhelmingly rely on unpaid care, which is often provided by working-age family members. This study assessed the impact of unpaid family caregiving on the likelihood of working and hours worked for caregivers and calculated the related cost of forgone earnings in 2013 and 2050. The current economic cost is about $67 billion, which by midcentury will likely double to $132-$147 billion, fueled primarily by the growth of the disabled older population and the increased share of better-educated caregivers.

Wed, 09/11/2019 - 12:56

The experiences of family caregivers of people with advanced dementia living in nursing homes, with a specific focus on spouses: A narrative literature review

Dementia affects individuals, families and their relationships. While there is increasing evidence about the experiences of family caregivers of people with dementia, relatively little is known of their experiences when their relatives are living in nursing homes with dementia. This narrative literature review aimed to synthesise current knowledge about family caregivers' experience of having relatives living in nursing homes with advanced dementia, particularly focussing on community-dwelling spouses. Using a systematic approach, textual narrative synthesis was undertaken.

Tue, 06/18/2019 - 15:47

Good end-of-life care in nursing home according to the family carers’ perspective: A systematic review of qualitative findings

Background: Nursing homes are becoming a common site where delivering end-of-life care for older adults. They often represent the junction between the curative and the palliative phase. Aim: To identify the elements that nursing home residents’ family carers perceive as good end-of-life care and develop a conceptual model of good end-of-life care according to the family perspective. Design: Systematic review (PROSPERO no. 95581) with meta-aggregation method.

Fri, 06/07/2019 - 14:09

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

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.

Fri, 04/12/2019 - 15:17

Caring too much? Lack of public services to older people reduces attendance at work among their children

The need to provide care for older people can put a strain on their adult children, potentially interfering with their work attendance. We tested the hypothesis that public care for older people (nursing homes or home care services) would moderate the association between having an older parent in need of care and reduced work attendance among the adult children. The analysis used data from a survey of Norwegian employees aged 45–65 (N = 529). Institutional care for older people in need of care (i.e.

Mon, 03/11/2019 - 10:42

Shared Decision Making About Housing Transitions for Persons With Dementia: A Four-Case Care Network Perspective

Background: Persons with dementia (PWDs) and their caregivers often face difficult housing decisions, that is, decisions about their living arrangements, in which the perspectives of all members of the care network should be involved.; Objective: We performed a qualitative data analysis to assess the extent to which housing decisions for PWDs with their formal and informal caregivers correspond to an interprofessional shared decision making (IP-SDM) approach, and what light this approach sheds on their experiences with decision making.; Research Des

Thu, 01/31/2019 - 12:18