Dataset Information

Tailored activities to manage neuropsychiatric behaviors in persons with dementia and reduce caregiver burden: a randomized pilot study.

ABSTRACT:

Objective

To test whether the Tailored Activity Program (TAP) reduces dementia-related neuropsychiatric behaviors, promotes activity engagement, and enhances caregiver well-being.

Design

Prospective, two-group (treatment, wait-list control), randomized, controlled pilot study with 4 months as main trial endpoint. At 4 months, controls received the TAP intervention and were reassessed 4 months later.

Setting

Patients' homes.

Participants

Sixty dementia patients and family caregivers.

Intervention

The eight-session occupational therapy intervention involved neuropsychological and functional testing, selection, and customization of activities to match capabilities identified in testing, and instruction to caregivers in use of activities.

Measurements

Behavioral occurrences, activity engagement, and quality of life in dementia patients; objective and subjective burden and skill enhancement in caregivers.

Results

At 4 months, compared with controls, intervention caregivers reported reduced frequency of problem behaviors, and specifically for shadowing and repetitive questioning, and greater activity engagement including the ability to keep busy. Fewer intervention caregivers reported agitation or argumentation. Caregiver benefits included fewer hours doing things and being on duty, greater mastery, self-efficacy, and skill enhancement. Wait-list control participants following intervention showed similar benefits for reductions in behavioral frequency and caregiver hours doing things for the patient and mastery. Caregivers with depressed symptoms derived treatment benefits similar to nondepressed caregivers.

Conclusions

Tailoring activities to the capabilities of dementia patients and training families in activity use resulted in clinically relevant benefits for patients and caregivers. Treatment minimized trigger behaviors for nursing home placement and reduced objective caregiver burden. Noteworthy is that depressed caregivers effectively engaged in and benefited from the intervention.

SUBMITTER: Gitlin LN

PROVIDER: S-EPMC2803044 | biostudies-literature | 2008 Mar

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Tailored activities to manage neuropsychiatric behaviors in persons with dementia and reduce caregiver burden: a randomized pilot study.

Gitlin Laura N LN Winter Laraine L Burke Janice J Chernett Nancy N Dennis Marie P MP Hauck Walter W WW

The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry 20080301 3

<h4>Objective</h4>To test whether the Tailored Activity Program (TAP) reduces dementia-related neuropsychiatric behaviors, promotes activity engagement, and enhances caregiver well-being.<h4>Design</h4>Prospective, two-group (treatment, wait-list control), randomized, controlled pilot study with 4 months as main trial endpoint. At 4 months, controls received the TAP intervention and were reassessed 4 months later.<h4>Setting</h4>Patients' homes.<h4>Participants</h4>Sixty dementia patients and fa ...[more]

PMID: 18310553

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Project description:ImportanceNeuropsychiatric 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.ObjectiveThis 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.DesignThis 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 measuresPrimary 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.ResultsAfter 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 relevanceThis 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 addsOccupational 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:Background and objectivesCaregivers of persons with dementia report worse sleep when compared to the general population. The objective of this review was to synthesize evidence regarding the link between caregiver burden and dementia caregivers' sleep.Research design and methodsWe conducted a scoping review using a systematic search for pertinent literature in PubMed, CINAHL, and Web of Science through March 2022. Keywords included content areas of dementia, caregiver burden, and sleep. Inclusion criteria were informal caregivers of persons living with dementia, a measured relationship between informal dementia caregiver sleep and subjective caregiver burden variables, and original research. Non-English studies were excluded. Extracted data were organized in tables, compared, and synthesized.ResultsThe search yielded 540 nonduplicate articles screened by title and abstract; 118 full-text articles were reviewed; 24 were included. Most studies were cross-sectional, with variable sample sizes. Dementia caregivers had significantly poorer overall perceived sleep than noncaregivers across 4 studies that examined self-reported sleep measures. Eighteen studies investigated the association between caregiver burden and self-reported sleep quality, with 14 reporting a significant positive association between caregiver burden and self-reported sleep quality, and 4 finding null results. Only 2 of the 4 studies reporting the association between caregiver burden and objective sleep parameters (ie, actigraphy and polysomnography) reported a significant positive association for at least one sleep subdomain.Discussion and implicationsAlthough subjective sleep quality is commonly affected by dementia caregiving burden, there is a lack of corresponding evidence on the relationship between burden and objective sleep metrics. Healthcare providers should consider the dementia caregiver burden's impact on sleep and regularly assess caregivers' sleep difficulties. Future studies should focus on consistently measuring caregiver burden and sleep to promote dementia caregiver health and well-being.

Project description:BackgroundStress related to Alzheimer disease and related dementias (ADRD) is common, particularly among those who care for persons with challenging behaviors and personality or mood changes. Mindfulness and self-compassion programs are efficacious for managing stress. The skills of mindfulness and self-compassion, however, must be integrated with behavioral management skills in order to effectively improve caregiver stress.ObjectiveIn this study, we aimed to describe the development of the Mindful and Self-Compassionate Care (MASC) program, the first program that combines mindfulness and self-compassion with behavioral management skills to decrease caregiver stress, and its evaluation in the Supporting Our Caregivers in ADRD Learning (SOCIAL) study.MethodsUsing the National Institutes of Health (NIH) stage model, we describe 3 phases of work encompassing NIH Stages 1A and 1B. In phase 1, we conducted 5 focus groups (N=28) of stressed individuals caring for persons with ADRD and challenging behaviors. Rapid data analysis informed the development of a 6-week online intervention. Phase 2 (NIH stage 1A) includes an open pilot (N>10) with optional exit interviews. Phase 3 (NIH stage 1B) is a feasibility randomized controlled trial of the intervention versus the Health Education Program control. Primary outcomes focus on feasibility with secondary outcomes encompassing acceptability, credibility, fidelity, and signals of preliminary efficacy. Phase 1 follows traditional recommendations for qualitative analyses (at the point of thematic saturation) which was achieved after 5 focus groups (N=28). For the phase 2 open pilot, up to 12 participants will be recruited. For the phase 3 feasibility study, recruitment of 80 caregivers will allow the assessment of feasibility benchmarks. Data for phase 1 included 5 focus groups. In phases 2 and 3, data collection will occur through REDCap (Research Electronic Data Capture; Vanderbilt University) surveys and an optional qualitative exit interview. Analyses will include hybrid inductive-deductive analyses for qualitative data and assessment of changes in our intervention targets and outcomes using t tests and correlation analyses.ResultsIn phase 1, caregivers reported interest in a brief, online stress management program. Participants held misconceptions about mindfulness and self-compassion, but after detailed explanation thoughts, these skills could be helpful when directly linked to implementation during caregiving routines. Phases 2 and 3 will be completed by the end of 2025.ConclusionsWe describe the protocol for the Supporting Our Caregivers in ADRD Learning study, as well as the development and feasibility testing of the Mindful and Self-Compassionate Care intervention. Future work will include a fully powered efficacy-effectiveness randomized controlled trial.Trial registrationClinicalTrials NCT05847153; https://clinicaltrials.gov/study/NCT05847153; and ClinicalTrials.gov NCT06276023; https://clinicaltrials.gov/study/NCT06276023.International registered report identifier (irrid)DERR1-10.2196/58356.

Project description:BackgroundCaregivers of persons with dementia (PWD) face high caregiving burden, distress related to responsive behaviours, and psychiatric morbidity. The present paper examines how these are associated with healthcare utilization of the PWD in Singapore.MethodsThe data of 399 caregiver-PWD dyads were extracted from a national cross-sectional survey. PWD completed the Client Service Receipt Inventory, which provided information on their healthcare utilization (i.e. emergency service use, hospital admission, length of stay in hospital, and number of outpatient visits) within a frame of 3 months. The Zarit Burden Interview (ZBI), Neuropsychiatric Inventory Questionnaire (NPI-Q), and Self Reporting Questionnaire (SRQ-20) were administered to caregivers. Information on severity of dementia, physical multimorbidity of the PWD, household composition, and caregivers' sociodemographic characteristics such as age, gender, and education were collected. Variables significantly associated with healthcare utilization in the univariate analyses were selected and included in the final regression models. Emergency service use and hospital admission were investigated using logistic regression analyses, whilst negative binomial models were utilized for length of stay in hospital and number of outpatient visits.ResultsAfter adjusting for significant correlates such as dementia severity and multimorbidity, only caregiver distress from responsive behaviours was positively associated with emergency room utilization, while caregiver burden was positively associated with length of hospital stay in the final regression model. Psychiatric morbidity was associated with healthcare utilization outcomes at the univariate level but did not reach statistical significance in final models.ConclusionThe study identifies caregiver variables associated with the healthcare utilization of PWD. Policy makers and healthcare professionals should provide interventions to ease burden and distress amongst caregivers of PWD.

Project description:ObjectiveTo assess the level of caregiver burden and factors associated with it among family caregivers of persons with dementia (PWD) living in communities of Shanghai, China.DesignCross-sectional study.SettingCommunities in Hongkou District of Shanghai, China.ParticipantsA random sample of 109 older adults with dementia and their primary family caregivers.Main outcome measureCaregiver burden measured by the Caregiver Burden Inventory (CBI), and the Caregivers' depressive symptom measured by the simplified Chinese version of Self-rating Depression Scale was the outcome variable of the study. The independent variables, including the cognitive function (measured by Montreal Cognitive Assessment (MoCA), sleep quality assessed by the Pittsburgh Sleep Quality Index, abilities of daily life assessed by the Activities of Daily Living Scale, and behavioural and psychological symptoms assessed by the Neuropsychiatric Inventory of PWDs, the community service utilisation (measured by the Community Service Utilisation Measurement), perceived social support (assessed by three questions), positive aspects of caregiving (PAC) (assessed by the PAC) of dementia caregivers, were analysed. Multivariate linear regression was employed to determine the factors related to caregiver burden.ResultsThe average level of CBI was 65.92±16.74. The score of MoCA, PAC and perceived social support of caregivers were negatively associated with caregiver burden (β=-0.84, p<0.001, β=-3.61, p=0.03 and β=-1.22, p=0.001, respectively). Community service utilisation was positively associated (β=3.46, p<0.001) with caregiver burden. Perceived social support by the caregiver moderated the relationship between caregiver burden and caregivers' depression symptoms.ConclusionDementia caregivers experienced a high level of caregiver burden. The cognitive function of PWD, PAC, social support and community service utilisation were factors associated with caregiver burden. Strengthening social support, providing more high-quality home care services, promoting PAC are imperative to reduce caregiver burden.

Dataset Information

Tailored activities to manage neuropsychiatric behaviors in persons with dementia and reduce caregiver burden: a randomized pilot study.

Objective

Design

Setting

Participants

Intervention

Measurements

Results

Conclusions

Publications

Tailored activities to manage neuropsychiatric behaviors in persons with dementia and reduce caregiver burden: a randomized pilot study.

Similar Datasets

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