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      Staging dementia based on caregiver reported patient symptoms: Implications from a latent class analysis

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          Abstract

          Background

          Tailoring interventions to the needs of caregivers is an important feature of successful caregiver support programs. To improve cost-effectiveness, group tailoring based on the stage of dementia could be a good alternative. However, existing staging strategies mostly depend on trained professionals.

          Objective

          This study aims to stage dementia based on caregiver reported symptoms of persons with dementia.

          Methods

          Latent class analysis was used. The classes derived were then mapped with disease duration to define the stages. Logistic regression with receiver operating characteristic curve was used to generate the optimal cut-offs.

          Results

          Latent class analysis suggested a 4-class solution, these four classes were named as early (25.9%), mild (25.2%), moderate (16.7%) and severe stage (32.3%). The stages based on the cut-offs generated achieved an overall accuracy of 90.8% compared to stages derived from latent class analysis.

          Conclusion

          The current study confirmed that caregiver reported patient symptoms could be used to classify persons with dementia into different stages. The new staging strategy is a good complement of existing dementia clinical assessment tools in terms of better supporting informal caregivers.

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          Most cited references25

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          Family caregivers of people with dementia

          Family caregivers of people with dementia, often called the invisible second patients, are critical to the quality of life of the care recipients. The effects of being a family caregiver, though sometimes positive, are generally negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship. Caregivers vulnerable to adverse effects can be identified, as can factors which ameliorate or exacerbate burden and strain. Psychosocial interventions have been demonstrated to reduce caregiver burden and depression and delay nursing home admission. Comprehensive management of the patient with dementia includes building a partnership between health professionals and family caregivers, referral to Alzheimer's Associations, and psychosocial interventions where indicated.
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            Internet-Based Interventions Aimed at Supporting Family Caregivers of People With Dementia: Systematic Review

            Background Caring for someone with dementia is one of the most challenging caring roles. The need for support for family caregivers has been recognized for some time but is often still lacking. With an aging population, demand on health and social care services is growing, and the population is increasingly looking to the internet for information and support. Objective In this review, we aimed to (1) identify the key components of existing internet-based interventions designed to support family caregivers of people with dementia, (2) develop an understanding of which components are most valued by caregivers, and (3) consider the evidence of effectiveness of internet-based interventions designed to support family caregivers of people with dementia. Methods We conducted a systematic search of online databases in April 2018. We searched reference lists and tracked citations. All study designs were included. We adopted a narrative synthesis approach with thematic analysis and tabulation as tools. Results We identified 2325 studies, of which we included 40. The interventions varied in the number and types of components, duration and dose, and outcomes used to measure effectiveness. The interventions focused on (1) contact with health or social care providers, (2) peer interaction, (3) provision of information, (4) decision support, and (5) psychological support. The overall quality of the studies was low, making interpretation and generalizability of the effectiveness findings difficult. However, most studies suggested that interventions may be beneficial to family caregiver well-being, including positive impacts on depression, anxiety, and burden. Particular benefit came from psychological support provided online, where several small randomized controlled trials suggested improvements in caregiver mental health. Provision of information online was most beneficial when tailored specifically for the individual and used as part of a multicomponent intervention. Peer support provided in online groups was appreciated by most participants and showed positive effects on stress. Finally, online contact with a professional was appreciated by caregivers, who valued easy access to personalized practical advice and emotional support, leading to a reduction in burden and strain. Conclusions Although mixed, the results indicate a positive response for the use of internet-based interventions by caregivers. More high-quality studies are required to identify the effectiveness of internet interventions aimed at supporting family caregivers, with particular focus on meeting the needs of caregivers during the different stages of dementia.
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              Systematic review of the effect of psychological interventions on family caregivers of people with dementia.

              Caregivers of people with dementia are at high risk of psychological morbidity and associated breakdown in care. Many psychologically based interventions have been designed to help caregivers of people with dementia. More work is needed to identify which, if any, are helpful for such caregivers. We conducted a systematic review of the immediate and long term efficacy of different types of psychological interventions for the psychological health of caregivers of people with dementia, using standardized criteria, to assist clinicians in implementing rational, evidence-based management recommendations. We reviewed studies examining the effects of any therapy derived from a psychological approach that satisfied pre-specified criteria. Using the Oxford Centre for Evidence-Based Medicine criteria we rated the quality of each study, extracted data and gave overall ratings to different types of intervention. We identified 244 references in our search of which 62 met our inclusion criteria. Our findings are limited by lack of good quality evidence, with only ten level 1 studies identified. We found excellent evidence for the efficacy of six or more sessions of individual behavioral management therapy centered on the care recipient's behavior in alleviating caregiver symptoms both immediately and for up to 32 months. Teaching caregivers coping strategies either individually or in a group also appeared effective in improving caregiver psychological health both immediately and for some months afterwards. Group interventions were less effective than individual interventions. Education about dementia by itself, group behavioral therapy and supportive therapy were not effective caregiver interventions.
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                Author and article information

                Contributors
                Role: ConceptualizationRole: Data curationRole: Formal analysisRole: Funding acquisitionRole: InvestigationRole: MethodologyRole: Project administrationRole: SoftwareRole: VisualizationRole: Writing – original draft
                Role: Data curationRole: InvestigationRole: Writing – review & editing
                Role: InvestigationRole: Writing – review & editing
                Role: InvestigationRole: Writing – review & editing
                Role: InvestigationRole: Writing – review & editing
                Role: Formal analysisRole: MethodologyRole: Writing – review & editing
                Role: ResourcesRole: Writing – review & editing
                Role: ResourcesRole: Writing – review & editing
                Role: ResourcesRole: Writing – review & editing
                Role: Funding acquisitionRole: ResourcesRole: SupervisionRole: Writing – review & editing
                Role: ConceptualizationRole: ResourcesRole: SupervisionRole: Writing – review & editing
                Role: Editor
                Journal
                PLoS One
                PLoS ONE
                plos
                plosone
                PLoS ONE
                Public Library of Science (San Francisco, CA USA )
                1932-6203
                15 January 2020
                2020
                : 15
                : 1
                : e0227857
                Affiliations
                [1 ] Research Division, Institute of Mental Health, Singapore
                [2 ] Department of Geriatric Psychiatry, Institute of Mental Health, Singapore
                [3 ] Department of Psychological Medicine, Changi General Hospital, Singapore
                [4 ] Neuroscience & Mental Health, Lee Kong Chian School of Medicine, Singapore
                Murcia University, Spain, SPAIN
                Author notes

                Competing Interests: The authors have declared that no competing interests exist.

                Author information
                http://orcid.org/0000-0002-5271-6954
                Article
                PONE-D-19-30761
                10.1371/journal.pone.0227857
                6961931
                31940419
                b2988685-0156-4821-a574-b096e1bb36bf
                © 2020 Yuan et al

                This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

                History
                : 5 November 2019
                : 1 January 2020
                Page count
                Figures: 1, Tables: 5, Pages: 12
                Funding
                Funded by: funder-id http://dx.doi.org/10.13039/501100001349, National Medical Research Council;
                Award ID: NMRC/CG/004/2013
                Award Recipient :
                Funded by: Institute of Mental Health Bridging Fund
                Award ID: 545-2016
                Award Recipient :
                The study is funded by the Singapore Ministry of Health’s National Medical Research Council under the Center Grant Programme (Grant No.: NMRC/CG/004/2013) and the Institute of Mental Health Bridging Fund (CRC ref No.: 545-2016). The funders had no role in study design, data collection and analysis, decision to publish or preparation of the manuscript.
                Categories
                Research Article
                Medicine and Health Sciences
                Mental Health and Psychiatry
                Dementia
                Medicine and Health Sciences
                Neurology
                Dementia
                Medicine and Health Sciences
                Health Care
                Quality of Life
                Activities of Daily Living
                Biology and Life Sciences
                Neuroscience
                Cognitive Science
                Cognition
                Memory
                Biology and Life Sciences
                Neuroscience
                Learning and Memory
                Memory
                Medicine and Health Sciences
                Mental Health and Psychiatry
                Dementia
                Alzheimer's Disease
                Medicine and Health Sciences
                Neurology
                Dementia
                Alzheimer's Disease
                Medicine and Health Sciences
                Neurology
                Neurodegenerative Diseases
                Alzheimer's Disease
                People and Places
                Geographical Locations
                Asia
                Singapore
                Medicine and Health Sciences
                Mental Health and Psychiatry
                Social Sciences
                Sociology
                Education
                Educational Attainment
                Social Sciences
                Economics
                Economic Analysis
                Cost-Effectiveness Analysis
                Custom metadata
                All individual data from this study resides with Office of Research, Institute of Mental Health. Data is not available for online access, however readers who wish to gain access to the data can write to the Clinical Research Committee, Institute of Mental Health/Woodbridge Hospital Secretariat at IMHRESEARCH@ 123456imh.com.sg . Access can be granted subject to the Institutional Review Board (IRB) and the research collaborative agreement guidelines. This is a requirement mandated for this research study by our IRB and funders.

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