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Reducing neuropsychiatric symptoms in persons with dementia and associated burden in family caregivers using tailored activities: Design and methods of a randomized clinical trial.

ABSTRACT: Among over 5million people in the USA with dementia, neuropsychiatric symptoms (NPS) are almost universal, occurring across disease etiology and stage. If untreated, NPS can lead to significant morbidity and mortality including increased cost, distress, depression, and faster disease progression, as well as heightened burden on families. With few pharmacological solutions, identifying nonpharmacologic strategies is critical. We describe a randomized clinical trial, the Dementia Behavior Study, to test the efficacy of an activity program to reduce significant existing NPS and associated caregiver burden at 3 and 6months compared to a control group intervention. Occupational therapists deliver 8 in-home sessions over 3months to assess capabilities and interests of persons with dementia, home environments, and caregiver knowledge, and readiness from which activities are developed and families trained in their use. Families learn to modify activities for future declines and use strategies to address care challenges. The comparison group controls for time and attention and involves 8 in-home sessions delivered by health educators who provide dementia education, home safety recommendations, and advanced care planning. We are randomizing 250 racially diverse families (person with dementia and primary caregiver dyads) recruited from community-based social services, conferences and media announcements. The primary outcome is change in agitation/aggression at 3 and 6months. Secondary outcomes assess quality of life of persons with dementia, other behaviors, burden and confidence of caregivers, and cost and cost effectiveness. If benefits are supported, this activity intervention will provide a clinically meaningful approach to prevent, reduce, and manage NPS.

SUBMITTER: Gitlin LN

PROVIDER: S-EPMC4969112 | biostudies-literature | 2016 Jul

REPOSITORIES: biostudies-literature

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Reducing neuropsychiatric symptoms in persons with dementia and associated burden in family caregivers using tailored activities: Design and methods of a randomized clinical trial.

Gitlin Laura N LN Piersol Catherine Verrier CV Hodgson Nancy N Marx Katherine K Roth David L DL Johnston Deidre D Samus Quincy Q Pizzi Laura L Jutkowitz Eric E Lyketsos Constantine G CG

Contemporary clinical trials 20160621

Among over 5million people in the USA with dementia, neuropsychiatric symptoms (NPS) are almost universal, occurring across disease etiology and stage. If untreated, NPS can lead to significant morbidity and mortality including increased cost, distress, depression, and faster disease progression, as well as heightened burden on families. With few pharmacological solutions, identifying nonpharmacologic strategies is critical. We describe a randomized clinical trial, the Dementia Behavior Study, t ...[more]

PMID: 27339865

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Project description:IMPORTANCE:Neuropsychiatric behaviors of persons with dementia, including agitation, aggression, and rejection of care, are almost universal; occur throughout the disease process; and have negative consequences for both persons with dementia and their caregivers. Nonpharmacological approaches are now recognized as first-line treatment to address these behaviors. One promising approach is activity tailored to the person's interests, abilities, and physical and social environment. An evidence-based program, New Ways for Better Days: Tailoring Activities for Persons With Dementia and Their Caregivers (TAP), draws on occupational therapy principles (person-environment-occupation fit, activity analysis) to meaningfully engage persons with dementia. OBJECTIVE:This case report describes the TAP protocol and clinical reasoning processes underlying use of tailored activities as a therapeutic modality to address dementia-related neuropsychiatric behaviors. DESIGN:This is a case study of an African-American woman in her 60s caring for her father, age 92, who has severe dementia and multiple behaviors. OUTCOMES AND MEASURES:Primary outcomes in this case report include the person with dementia's engagement in an activity and the reported neuropsychiatric behaviors. In addition, the caregiver's confidence in using activities is reported. These and other measures from the TAP protocol are described in full. RESULTS:After working with an occupational therapist for eight sessions, the person with dementia's engagement in activity increased by 50% and his frequency of vocal disturbance decreased, and the caregiver felt more confident in using activities with her father. CONCLUSION AND RELEVANCE:This case report illustrates how occupational therapists working with families of persons with dementia can use the TAP protocol to help them manage neuropsychiatric behaviors by tailoring activities. WHAT THIS ARTICLE ADDS:Occupational therapists are uniquely qualified to systematically assess the cognitive functioning of persons with dementia, caregivers, and home environments and to integrate this information to derive and implement activities tailored to the person's capacities and context, thereby reducing neuropsychiatric behaviors and increasing engagement in meaningful activity.

Project description:BackgroundNeuropsychiatric symptoms (NPS) have been reported to be useful in predicting incident dementia among cognitively normal older persons. However, the literature has not been conclusive on the differential utilities of the various NPS in predicting the subtypes of dementia. This study compared the risks of Alzheimer's and non-Alzheimer's dementia associated with the various NPS, among cognitively normal older persons.MethodsThis cohort study included 12,452 participants from the Alzheimer's Disease Centers across USA, who were ≥ 60 years and had normal cognition at baseline. Participants completed the Neuropsychiatric Inventory-Questionnaire at baseline and were followed up almost annually for incident dementia (median follow-up = 4.7 years). Symptom clusters of NPS-as identified from exploratory and confirmatory factor-analyses-were included in the Cox regression to investigate their associations with incident dementia.ResultsThe various NPS showed independent yet differential associations with incident dementia. Although psychotic symptoms were rarely endorsed by the participants, they predicted much higher risk of dementia (HR 3.6, 95% CI 2.0-6.4) than affective symptoms (HR 1.5, 95% CI 1.2-1.8) or agitation symptoms (HR 1.6, 95% CI 1.3-2.1). Psychotic symptoms predicted all dementia subtypes, while affective and agitation symptoms differentially predicted some subtypes. Across dementia subtypes, psychotic symptoms had relatively higher risk estimates than affective or agitation symptoms, with the risk estimates being particularly high in non-Alzheimer's dementia.ConclusionsAmong cognitively normal individuals, the presence of NPS may warrant greater clinical vigilance as precursors to dementia and its subtypes. The findings highlight the need for further research to enrich our understanding on the neurobiological links between various NPS and dementia subtypes. They may also change the clinical approach in managing late-life psychotic symptoms, requiring a greater emphasis on dementia surveillance in the diagnostic criteria of late-life psychotic disorders.

Project description:ObjectivesMuch is known about the demands of caregiving for persons with dementia (PWD) and its effects on family caregivers, however sex and gender aspects have received less attention. We synthesized the evidence on sex and gender distinctions in: (1) the caregiving burden and (2) the impact of caregiving on the physical and mental health of family caregivers of PWD.DesignSystematic review.Data sourcesMedline, Embase, PsycINFO and Cumulative Index to Nursing and Allied Health Literature between January 2007 and October 2019 were searched.Eligibility criteria for selecting studiesIncluded studies met the following criteria: (1) examine experiences and/or impacts of caregiving among family caregivers of individuals with any form of dementia; (2) report sex and/or gender distribution of study population and/or report results stratified by sex and/or gender, and (3) include both male and female family caregivers.Data extraction and synthesisTwo independent reviewers extracted the data and assessed risk of bias using the Critical Appraisal Skills Program checklist and National Institutes of Health Quality Assessment Tool for Observational Cohort and Cross-sectional Studies. Data were synthesized using a narrative synthesis approach.ResultsA total of 22 studies were included. Caregiving burden was measured using various methods. A majority of studies reported higher burden among females. All studies that did not report a sex and gender difference in caregiving burden accounted for confounders. Findings on sex and gender differences on physical and mental health conditions were inconsistent with most studies failing to account for confounders in their analyses.ConclusionsCurrent evidence on sex and gender differences in caregiving burden, mental and physical health is limited. Findings suggest presence of sex and gender differences in caregiving burden. Given the variety of mental and physical health constructs that were examined, further research is required to substantiate the evidence. PROPSERO Registration Number: CRD 42018070032.

Dataset Information

Reducing neuropsychiatric symptoms in persons with dementia and associated burden in family caregivers using tailored activities: Design and methods of a randomized clinical trial.

Publications

Reducing neuropsychiatric symptoms in persons with dementia and associated burden in family caregivers using tailored activities: Design and methods of a randomized clinical trial.

Similar Datasets

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