scholarly journals Interventions to support family caregivers of people with advanced dementia at the end of life in nursing homes: A mixed-methods systematic review

2021 ◽  
pp. 026921632110667
Author(s):  
Silvia Gonella ◽  
Gary Mitchell ◽  
Laura Bavelaar ◽  
Alessio Conti ◽  
Mariangela Vanalli ◽  
...  
Keyword(s):  
Systematic Review ◽  
Mixed Methods ◽  
Nursing Homes ◽  
End Of Life ◽  
Family Caregivers ◽  
Cultural Context ◽  
Integrated Approach ◽  
Advanced Dementia ◽  
People With Dementia ◽  
Support Family

Background: Most people with dementia transition into nursing homes as their disease progresses. Their family caregivers often continue to be involved in their relative’s care and experience high level of strain at the end of life. Aim: To gather and synthesize information on interventions to support family caregivers of people with advanced dementia at the end of life in nursing homes and provide a set of recommendations for practice. Design: Mixed-Methods Systematic Review (PROSPERO no. CRD42020217854) with convergent integrated approach. Data sources: Five electronic databases were searched from inception in November 2020. Published qualitative, quantitative, and mixed-method studies of interventions to support family caregivers of people with advanced dementia at the end of life in nursing home were included. No language or temporal limits were applied. Results: In all, 11 studies met the inclusion criteria. Data synthesis resulted in three integrated findings: (i) healthcare professionals should engage family caregivers in ongoing dialog and provide adequate time and space for sensitive discussions; (ii) end-of-life discussions should be face-to-face and supported by written information whose timing of supply may vary according to family caregivers’ preferences and the organizational policies and cultural context; and (iii) family caregivers should be provided structured psychoeducational programs tailored to their specific needs and/or regular family meetings about dementia care at the end of life. Conclusion: The findings provide useful information on which interventions may benefit family caregivers of people with advanced dementia at the end of life and where, when, and how they should be provided.

scholarly journals What is good communication for people living with dementia? A mixed-methods systematic review

2017 ◽  
Vol 29 (11) ◽  
pp. 1785-1800 ◽  
Author(s):  
Sarah Alsawy ◽  
Warren Mansell ◽  
Phil McEvoy ◽  
Sara Tai
Keyword(s):  
Systematic Review ◽  
Mixed Methods ◽  
Family Caregivers ◽  
Interpersonal Relationships ◽  
Healthcare Professionals ◽  
Eligibility Criteria ◽  
Good Communication ◽  
Person Centered Care ◽  
People With Dementia ◽  
Centered Care

ABSTRACTBackground:Many strategies have been recommended to support caregivers in communicating with people who live with dementia. However, less is known about what makes communication a good and meaningful experience from the perspective of people with dementia. Understanding this may enhance the person with dementia's sense of connectedness, strengthen their relationships, and facilitate person-centered care. The current review aimed to evaluate research that examined experiences of communication in people living with dementia. Studies that examined reports provided by people with dementia, healthcare professionals, and family caregivers were included.Methods:A mixed-methods systematic review was conducted using PsychINFO, MEDLINE, and EMBASE databases.Results:After applying the eligibility criteria, 15 studies were included. Although eight of these recruited people with dementia, only one focused on their perspectives of communication experiences and the remaining studies focused on the perspectives of family caregivers and healthcare professionals. These studies either explored experiences without suggestions of communication methods, “open exploration,” or through examining experiences of strategies, “exploration of strategies.” A significant theme was around communication difficulties that affected interpersonal relationships and activities of daily living. Conversely, personhood strategies and a strong underlying relationship were believed to facilitate communication. The one study that examined the perspectives of people with dementia emphasized the importance of retaining valued relationships and feeling respected during communication.Conclusions:The need to involve people with dementia in research, particularly around their experiences of communication, is evident. Such research would be imperative for facilitating person-centered care, strengthening social relationships, and informing training programs.

scholarly journals 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 ◽  
2016 ◽  
Vol 18 (1) ◽  
pp. 303-322 ◽  
Author(s):  
Jean Hennings ◽  
Katherine Froggatt
Keyword(s):  
Nursing Homes ◽  
Literature Review ◽  
Family Caregivers ◽  
Systematic Approach ◽  
Current Knowledge ◽  
Community Dwelling ◽  
Advanced Dementia ◽  
People With Dementia ◽  
Narrative Literature ◽  
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. Four themes were identified: changing relationships, the need for companionship, adjusting to new roles and relationships and anticipating death/looking towards the future. Two additional themes were present only for spouses: changing identity – feeling married, being married; and alone but… The review demonstrates that some aspects of spouses’ experiences are different from those of other family caregivers. Longitudinal studies are required to better understand spouses’ motivations to continue caring in this context and to find ways of supporting them.

The experience of providing end-of-life care to a relative with advanced dementia: An integrative literature review

2012 ◽  
Vol 11 (2) ◽  
pp. 155-168 ◽  
Author(s):  
Shelley C. Peacock
Keyword(s):  
Literature Review ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Terminal Illness ◽  
Life Care ◽  
Advanced Dementia ◽  
Symptoms Of Depression ◽  
People With Dementia ◽  
End Stage

AbstractThe number of people with dementia is growing at an alarming rate. An abundance of research over the past two decades has examined the complex aspects of caring for a relative with dementia. However, far less research has been conducted specific to the experiences of family caregivers providing end-of-life care, which is perplexing, as dementia is a terminal illness. This article presents what is known and highlights the gaps in the literature relevant to the experiences of family caregivers of persons with dementia at the end of life. A thorough search of the Cumulative Index to Nursing and Allied Health Literature (CINAHL) and PubMed databases from 1960 to 2011 was conducted. Ten studies were identified that specifically addressed the experience of family caregivers providing end-of-life care to a relative with advanced dementia. Common themes of these studies included: 1) the experience of grief, 2) guilt and burden with decision making, 3) how symptoms of depression may or may not be resolved with death of the care receiver, 4) how caregivers respond to the end-stage of dementia, and 5) expressed needs of family caregivers. It is evident from this literature review that much remains to be done to conceptualize the experience of end-of-life caregiving in dementia.

scholarly journals Facilitators and barriers to implement nurse-led physical activities for people with dementia in nursing homes: a protocol for a mixed-methods systematic review

BMJ Open ◽  
2021 ◽  
Vol 11 (12) ◽  
pp. e056353
Author(s):  
Julian Hirt ◽  
Janine Vetsch ◽  
Steffen Heinrich
Keyword(s):  
Physical Activity ◽  
Systematic Review ◽  
Mixed Methods ◽  
Nursing Homes ◽  
Nursing Home Residents ◽  
Physical Activities ◽  
Physical Activity Interventions ◽  
Sustainable Implementation ◽  
People With Dementia ◽  
Facilitators And Barriers

IntroductionDementia is a major neurocognitive disorder and accounts for a great proportion of nursing home residents. Bodily symptoms such as gait, balance difficulties and muscle weakness are common in people with dementia. Physical activities are important to maintain and promote physical functioning and activities of daily living.Nurses are a prone stakeholder to deliver physical activity interventions in nursing homes. However, several barriers have been reported for implementing nurse-led physical activity programmes. Also synthesised strategies for sustainable implementation in nursing homes are lacking. We, therefore, aim to synthesise the evidence on physical activity interventions which can be led by nurses and to identify facilitators and barriers of sustainable implementation of physical activity for people with dementia.Methods and analysisWe will conduct a mixed-methods systematic review to (1) describe the characteristics of nurse-led physical activities for people with dementia living in nursing homes and to (2) determine facilitators and barriers for sustainable implementation of nurse-led physical activities for people with dementia in nursing homes. We will search four different electronic databases, do forward and backward citation tracking and will web-search additionally. We will also search through guideline databases. Two reviewers will independently screen the identified studies for their eligibility. Data extraction and critical appraisal of included studies will be performed by one reviewer and double-checked by another reviewer. We will analyse the data using an integrative mixed-method synthesis and we will summarise the findings narratively.Ethics and disseminationNo ethics approval is needed to perform this systematic review. We will publish our review results as scientific and non-scientific journal articles and we will hold an oral or a poster conference presentation. The review results will inform the development of structured and easy to understand guidance for nurses to initiate tailored physical activities for people with dementia in nursing homes.

Health Professionals’ Recommendations for a Dementia Plan for China

2021 ◽  
pp. 073346482110220
Author(s):  
Wenhong Zhao ◽  
Min-Lin Wu ◽  
Helen Petsky ◽  
Wendy Moyle
Keyword(s):  
Nursing Homes ◽  
Family Caregivers ◽  
Thematic Analysis ◽  
Health Professionals ◽  
Dementia Care ◽  
Policy Recommendations ◽  
Structured Interviews ◽  
Daycare Centers ◽  
People With Dementia ◽  
Support Family

There is no specific national dementia plan concerning people with dementia in China. The purpose of this study was to explore health professionals’ recommendations for a dementia plan for China to meet the needs of people with dementia. Semi-structured interviews were conducted with 24 doctors and nurses using purposive maximum variation sampling. Data were interpreted inductively using thematic analysis. Four themes were identified. Themes on policy recommendations emphasized a need to support people with dementia and those who care for them, including the development of community daycare centers, specialized dementia care units in hospitals, and specialized nursing homes. Improvement in dementia care in China is needed, including services across all care settings. Programs to train and support family caregivers and help health professionals to detect, diagnose and treat dementia are crucial. Further support for the families of people with dementia is required.

scholarly journals Defining end of life in dementia: A systematic review

2021 ◽  
pp. 026921632110254
Author(s):  
Bria Browne ◽  
Nuriye Kupeli ◽  
Kirsten J Moore ◽  
Elizabeth L Sampson ◽  
Nathan Davies
Keyword(s):  
Systematic Review ◽  
End Of Life ◽  
Healthcare Professionals ◽  
Functional Decline ◽  
Advanced Stage ◽  
Family Carers ◽  
Inclusion Criteria ◽  
Single Measure ◽  
People With Dementia ◽  
Limiting Condition

Background: Dementia is a life-limiting condition that affects 50 million people globally. Existing definitions of end of life do not account for the uncertain trajectory of dementia. People living with dementia may live in the advanced stage for several years, or even die before they reach the advanced stage of dementia. Aim: To identify how end of life in people with dementia is measured and conceptualised, and to identify the factors that contribute towards identifying end of life in people with dementia. Design: Systematic review and narrative synthesis. Data Sources: Electronic databases MEDLINE, EMBASE, PsychInfo and CINAHL, were searched in April 2020. Eligible studies included adults with any dementia diagnosis, family carers and healthcare professionals caring for people with dementia and a definition for end of life in dementia. Results: Thirty-three studies met the inclusion criteria. Various cut-off scores from validated tools, estimated prognoses and descriptive definitions were used to define end of life. Most studies used single measure tools which focused on cognition or function. There was no pattern across care settings in how end of life was defined. Healthcare professionals and family carers had difficulty recognising when people with dementia were approaching the end of life. Conclusion: End-of-life care and research that focuses only on cognitive and functional decline may fail to recognise the complexities and unmet needs relevant to dementia and end of life. Research and clinical practice should adopt a needs-based approach for people with dementia and not define end of life by stage of disease.

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