scholarly journals Exploring costs, cost components, and associated factors among people with dementia approaching the end of life: A systematic review

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Javiera Leniz ◽  
Deokhee Yi ◽  
Emel Yorganci ◽  
Lesley E. Williamson ◽  
Trisha Suji ◽  
...  
Keyword(s):  
Systematic Review ◽  
End Of Life ◽  
Associated Factors ◽  
People With Dementia ◽  
Cost Components

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.

scholarly journals Palliative care for people with dementia living at home: A systematic review of interventions

2019 ◽  
Vol 33 (7) ◽  
pp. 726-742 ◽  
Author(s):  
Rose Miranda ◽  
Frances Bunn ◽  
Jennifer Lynch ◽  
Lieve Van den Block ◽  
Claire Goodman
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
European Association ◽  
Life Care ◽  
High Quality ◽  
People With Dementia ◽  
Care Outcomes ◽  
Facilitators And Barriers

Background: The European Association for Palliative Care White Paper defined optimal palliative care in dementia based on evidence and expert consensus. Yet, we know little on how to achieve this for people with dementia living and dying at home. Aims: To examine evidence on home palliative care interventions in dementia, in terms of their effectiveness on end-of-life care outcomes, factors influencing implementation, the extent to which they address the European Association for Palliative Care palliative care domains and evidence gaps. Design: A systematic review of home palliative care interventions in dementia. Data sources: The review adhered to the PRISMA guidelines and the protocol was registered with PROSPERO (CRD42018093607). We searched four electronic databases up to April 2018 (PubMed, Scopus, Cochrane library and CINAHL) and conducted lateral searches. Results: We retrieved eight relevant studies, none of which was of high quality. The evidence, albeit of generally weak quality, showed the potential benefits of the interventions in improving end-of-life care outcomes, for example, behavioural disturbances. The interventions most commonly focused on optimal symptom management, continuity of care and psychosocial support. Other European Association for Palliative Care domains identified as important in palliative care for people with dementia, for example, prognostication of dying or avoidance of burdensome interventions were under-reported. No direct evidence on facilitators and barriers to implementation was found. Conclusions: The review highlights the paucity of high-quality dementia-specific research in this area and recommends key areas for future work, for example, the need for process evaluation to identify facilitators and barriers to implementing interventions.

scholarly journals Assessment of pain in people living with dementia at the end of life: a systematic review

2021 ◽  
Vol 27 (2) ◽  
pp. 72-85
Author(s):  
Grainne McAnee ◽  
Kelly Norwood ◽  
Michael Rosato ◽  
Gerry Leavey
Keyword(s):  
Systematic Review ◽  
End Of Life ◽  
Web Of Science ◽  
Assessment Tools ◽  
Robust Approach ◽  
People With Dementia ◽  
Formal Tool ◽  
Ebsco Host ◽  
Quality Of Research

Background: People with dementia may not receive the same quality of palliative care as those with other life-limiting conditions, particularly at end of life (EoL). Aims: To understand the best way to examine pain in people with dementia. Methods: A systematic review of tools to assess pain in patients with dementia near the end of life; PubMed, Medline, Embase, EBSCO Host, CINAHL Plus, Web of Science, Psycinfo, PsycArticles and Scopus were searched. Findings: A total of 15 articles were identified, which were qualitatively synthesised. Conclusion: There are a range of pain assessment tools that are appropriate for use in people with dementia, but all 15 studies used a formal tool. A more robust approach is needed to improve the quality of research for measurement and management of pain in this population.

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 Measuring the prevalence of sleep disturbances in people with dementia living in care homes: a systematic review and meta-analysis

SLEEP ◽  
2019 ◽  
Vol 43 (4) ◽  
Author(s):  
Lucy Webster ◽  
Sergi Costafreda Gonzalez ◽  
Aisling Stringer ◽  
Amy Lineham ◽  
Jessica Budgett ◽  
...  
Keyword(s):  
Systematic Review ◽  
Sleep Disturbance ◽  
Associated Factors ◽  
Sleep Disturbances ◽  
Meta Analysis ◽  
Care Home ◽  
Care Homes ◽  
People With Dementia ◽  
Falling Asleep ◽  
Clinically Significant

Abstract Study Objectives Sleep disturbances are a feature in people living with dementia, including getting up during the night, difficulty falling asleep, and excessive daytime sleepiness and may precipitate a person with dementia moving into residential care. There are varying estimates of the frequency of sleep disturbances, and it is unknown whether they are a problem for the individual. We conducted the first systematic review and meta-analysis on the prevalence and associated factors of sleep disturbances in the care home population with dementia. Methods We searched Embase, MEDLINE, and PsycINFO (29/04/2019) for studies of the prevalence or associated factors of sleep disturbances in people with dementia living in care homes. We computed meta-analytical estimates of the prevalence of sleep disturbances and used meta-regression to investigate the effects of measurement methods, demographics, and study characteristics. Results We included 55 studies of 22,780 participants. The pooled prevalence on validated questionnaires of clinically significant sleep disturbances was 20% (95% confidence interval, CI 16% to 24%) and of any symptom of sleep disturbance was 38% (95% CI 33% to 44%). On actigraphy using a cutoff sleep efficiency of <85% prevalence was 70% (95% CI 55% to 85%). Staff distress, resident agitation, and prescription of psychotropic medications were associated with sleep disturbances. Studies with a higher percentage of males had a higher prevalence of sleep disturbance. Conclusions Clinically significant sleep disturbances are less common than those measured on actigraphy and are associated with residents and staff distress and the increased prescription of psychotropics. Actigraphy appears to offer no benefit over proxy reports in this population.

scholarly journals Gaps in Understanding the Experiences of Homecare Workers Providing Care for People with Dementia up to the End of Life: A Systematic Review

Dementia ◽  
2017 ◽  
Vol 18 (3) ◽  
pp. 970-989 ◽  
Author(s):  
Valerie D'Astous ◽  
Ruth Abrams ◽  
Tushna Vandrevala ◽  
Kritika Samsi ◽  
Jill Manthorpe
Keyword(s):  
Systematic Review ◽  
End Of Life ◽  
People With Dementia
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