Primary studies included in this systematic review

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Primary study

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Journal Disability and rehabilitation
Year 2019
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PURPOSE: To explore the feasibility of implementing the Tailored Activity Program with a cohort of people with frontotemporal dementia and their carers (dyads). METHODS: The Tailored Activity Program is an occupational therapy based intervention that involves working collaboratively with family carers and prescribes personalized activities for behavioral management in people with dementia. Twenty dyads randomized into the study (Tailored Activity Program: n = 9; Control: n = 11) were assessed at baseline and 4-months. Qualitative analyzes evaluated feasibility and acceptability of the program for the frontotemporal dementia cohort, and quantitative analyzes (linear mixed model analyzes, Spearman's rho correlations) measured the impact of the program on the dyads. RESULTS: The Tailored Activity Program was an acceptable intervention for the frontotemporal dementia dyads. Qualitative analyses identified five themes: "carer perceived benefits", "carer readiness to change", "strategies used by carer to engage person with dementia", "barriers to the Tailored Activity Program uptake/implementation", and "person with dementia engagement". Quantitative outcomes showed an overall reduction of behavioral symptoms (F<sub>18.34</sub> = 8.073, p = 0.011) and maintenance of functional performance in the person with dementia (F<sub>18.03</sub> = 0.375, p = 0.548). CONCLUSIONS: This study demonstrates the potential for using an activity-based intervention such as the Tailored Activity Program in frontotemporal dementia. Service providers should recognize that while people with frontotemporal dementia present with challenging issues, tailored therapies may support their function and reduce their behavioral symptoms. Implications for rehabilitation: The Tailored Activity Program is an occupational therapy based intervention that involves prescribing personalized activities for behavioral management in dementia. The Tailored Activity Program is an acceptable and feasible intervention approach to address some of the unique behavioral and functional impairments inherent in frontotemporal dementia.

Primary study

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Journal Journal of the American Geriatrics Society
Year 2018
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Background/OBJECTIVES: Dementia‐related behavioral symptoms and functional dependence result in poor quality of life for persons with dementia and their caregivers. The goal was to determine whether a home‐based activity program (Tailored Activity Program; TAP‐VA) would reduce behavioral symptoms and functional dependence of veterans with dementia and caregiver burden. DESIGN: Single‐blind (interviewer), parallel, randomized, controlled trial (Clinicaltrials.gov: NCT01357564). SETTING: Veteran's homes. Participants: Veterans with dementia and their family caregivers (N = 160 dyads). Intervention: Dyads in TAP‐VA underwent 8 sessions with occupational therapists to customize activities to the interests and abilities of the veterans and educate their caregivers about dementia and use of customized activity. Caregivers assigned to attention control received up to 8 telephone‐based dementia education sessions with a research team member. Measurements: Primary outcomes included number of behaviors and frequency of their occurrence multiplied by severity of occurrence; secondary outcomes were functional dependence, pain, emotional well‐being, caregiver burden (time spent caregiving, upset with behaviors) and affect at 4 (primary endpoint) and 8 months. RESULTS: Of 160 dyads (n = 76 TAP‐VA; n = 84 control), 111 completed 4‐month interviews (n = 51 TAP‐VA; n = 60 control), and 103 completed 8‐month interviews (n = 50 TAP‐VA; n = 53 control). At 4 months, compared to controls, the TAP‐VA group showed reductions in number (difference in mean change from baseline = −0.68, 95% CI = −1.23 to −0.13) and frequency by severity (−24.3, 95% CI = −45.6 to −3.1) of behavioral symptoms, number of activities needing assistance with (−0.80, 95% CI = −1.41 to −0.20), functional dependence level (4.09, 95% CI = 1.06, 7.13), and pain (−1.18, 95% CI = −2.10 to −0.26). Caregivers of veterans in TAP‐VA reported less behavior‐related distress. Benefits did not extend to 8 months. CONCLUSION: TAP‐VA had positive immediate effects and no adverse events. Because TAP‐VA reduces behavioral symptoms, slows functional dependence, and alleviates pain and caregiver distress, it is a viable treatment option for families. (PsycInfo Database Record (c) 2024 APA, all rights reserved)

Primary study

Unclassified

Journal Alzheimer disease and associated disorders
Year 2018
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OBJECTIVES: The objectives of this study were to evaluate the effects of the Tailored Activity Program—Brazilian version (TAP-BR), on behavioral symptoms and the quality of life (QOL) in persons with dementia, as well as on their caregivers, and on caregiver burden. MATERIALS AND METHODS: A 2-group randomized controlled trial with 30 dyads was conducted: the experimental group (n = 15) received TAP-BR over 4 months, and a wait-list control group (n = 15) received usual care. Dyads were recruited from the community of Santos City, Brazil. RESULTS: For persons with dementia, 50% were female individuals, the average age was 81.37 (± 7.57), and the educational level was 9.97 (±5.32) years. For caregivers, 83.33% were female, the average age was 65.97 (± 10.13), and the educational level was 12.10 (± 4.44) years. At posttest, in comparison with the wait-list control group, experimental group caregivers reported greater reductions in number (<i>P</i> &lt; 0.001; Cohen <i>d</i> = 0.93), frequency (<i>P</i> &lt; 0.001; Cohen <i>d</i> = 1.12), and intensity (<i>P</i> &lt; 0.001; Cohen <i>d</i> = 0.77) of the behavioral psychological symptoms of dementia, and caregiver distress (<i>P</i> &lt; 0.001; Cohen <i>d</i> = 0.87). Caregivers also reported improvement in their own QOL (<i>P</i> &lt; 0.05; Cohen <i>d</i> = 0.57) and that of the person with dementia (<i>P</i> &lt; 0.01; Cohen <i>d</i> = 0.56); no differences were found in the ratings of QOL by the person with dementia themselves. CONCLUSIONS: The results provide compelling evidence that the TAP-BR is an effective strategy to support dementia caregivers in other cultures (cross-validation). (PsycInfo Database Record (c) 2022 APA, all rights reserved)

Primary study

Unclassified

Journal Annals of internal medicine
Year 2017
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<b>BACKGROUND: </b>Alzheimer disease results in progressive functional decline, leading to loss of independence.<b>OBJECTIVE: </b>To determine whether collaborative care plus 2 years of home-based occupational therapy delays functional decline.<b>DESIGN: </b>Randomized, controlled clinical trial. (ClinicalTrials.gov: NCT01314950).<b>SETTING: </b>Urban public health system.<b>PATIENTS: </b>180 community-dwelling participants with Alzheimer disease and their informal caregivers.<b>Intervention: </b>All participants received collaborative care for dementia. Patients in the intervention group also received in-home occupational therapy delivered in 24 sessions over 2 years.<b>Measurements: </b>The primary outcome measure was the Alzheimer's Disease Cooperative Study Group Activities of Daily Living Scale (ADCS ADL); performance-based measures included the Short Physical Performance Battery (SPPB) and Short Portable Sarcopenia Measure (SPSM).<b>RESULTS: </b>At baseline, clinical characteristics did not differ significantly between groups; the mean Mini-Mental State Examination score for both groups was 19 (SD, 7). The intervention group received a median of 18 home visits from the study occupational therapists. In both groups, ADCS ADL scores declined over 24 months. At the primary end point of 24 months, ADCS ADL scores did not differ between groups (mean difference, 2.34 [95% CI, -5.27 to 9.96]). We also could not definitively demonstrate between-group differences in mean SPPB or SPSM values.<b>Limitation: </b>The results of this trial are indeterminate and do not rule out potential clinically important effects of the intervention.<b>CONCLUSION: </b>The authors could not definitively demonstrate whether the addition of 2 years of in-home occupational therapy to a collaborative care management model slowed the rate of functional decline among persons with Alzheimer disease. This trial underscores the burden undertaken by caregivers as they provide care for family members with Alzheimer disease and the difficulty in slowing functional decline.<b>Primary Funding Source: </b>National Institute on Aging.

Primary study

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Authors Gerner A.
Journal [PhD thesis. Dresden: Dresden University of Technology,
Year 2013
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Primary study

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OBJECTIVE: To compare the benefits and harms of a Dutch 10-session Community Occupational Therapy programme for patients with Alzheimer's disease with the impact of a one session consultation at home in German routine healthcare. DESIGN: A seven-centre, parallel group, active controlled randomised controlled trial. Patients and carers were not masked. Assessors were fully blind for treatment allocation for one of two primary-outcome measurements. SETTING: Patients' homes. PARTICIPANTS: Patients with mild to moderate Alzheimer's disease (Mini-Mental State Examination 14-24), living in the community with primary carer available and without severe depression or behavioural symptoms, were eligible. INTERVENTIONS: Experimental 10 home visits within 5 weeks by an occupational therapist, educating patients in the performance of simplified daily activities and in the use of aids to compensate for cognitive decline; and educating carers in coping with behaviour of the patient and in giving supervision to the patient. Control one home visit including individual counselling of patient and carer and explanation of a leaflet on coping with dementia in daily life. OUTCOME MEASURES: The primary outcome was the patient's daily functioning measured with the Interview of Deterioration in Daily activities in Dementia and the Perceive, Recall, Plan and Perform System of Task Analysis. Assessments were at baseline, 6, 16 and 26 weeks, with a postal assessment at 52 weeks. RESULTS: 141 patients were 1:1 randomised to the experimental (N=71) and control group (N=70). Data for 54 and 50 participants were analysed. Patients' daily functioning did not differ significantly between the experimental and control group at week 6, 16, 26 or 52 and remained stable over 26 weeks in both groups. No adverse events were associated with the interventions. CONCLUSIONS: In German healthcare, a Dutch 10-session community occupational therapy was not better than a one-session consultation for the daily functioning of patients with Alzheimer's disease. Further research on the transfer of complex psychosocial is needed. International Clinical Trials Registry Platform DRKS00000053; Funded by the German Federal Ministry of Health.

Primary study

Unclassified

Journal JAMA : the journal of the American Medical Association
Year 2010
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CONTEXT: Optimal treatment to postpone functional decline in patients with dementia is not established. OBJECTIVE: To test a nonpharmacologic intervention realigning environmental demands with patient capabilities. Design, Setting, and Participants: Prospective 2-group randomized trial (Care of Persons with Dementia in their Environments [COPE]) involving patients with dementia and family caregivers (community-living dyads) recruited from March 2006 through June 2008 in Pennsylvania. INTERVENTIONS: Up to 12 home or telephone contacts over 4 months by health professionals who assessed patient capabilities and deficits; obtained blood and urine samples; and trained families in home safety, simplifying tasks, and stress reduction. Control group caregivers received 3 telephone calls and educational materials. MAIN OUTCOME MEASURES: Functional dependence, quality of life, frequency of agitated behaviors, and engagement for patients and well-being, confidence using activities, and perceived benefits for caregivers at 4 months. RESULTS: Of 284 dyads screened, 270 (95%) were eligible and 237 (88%) randomized. Data were collected from 209 dyads (88%) at 4 months and 173 (73%) at 9 months. At 4 months, compared with controls, COPE patients had less functional dependence (adjusted mean difference, 0.24; 95% CI, 0.03-0.44; <i>P</i> = .02; Cohen <i>d</i> = 0.21) and less dependence in instrumental activities of daily living (adjusted mean difference, 0.32; 95% CI, 0.09-0.55; <i>P</i> = .007; Cohen <i>d</i> = 0.43), measured by a 15-item scale modeled after the Functional Independence Measure; COPE patients also had improved engagement (adjusted mean difference, 0.12; 95% CI, 0.07-0.22; <i>P</i> = .03; Cohen <i>d</i> = 0.26), measured by a 5-item scale. COPE caregivers improved in their well-being (adjusted mean difference in Perceived Change Index, 0.22; 95% CI, 0.08-0.36; <i>P</i> = .002; Cohen <i>d</i> = 0.30) and confidence using activities (adjusted mean difference, 0.81; 95% CI, 0.30-1.32; <i>P</i> = .002; Cohen <i>d</i> = 0.54), measured by a 5-item scale. By 4 months, 64 COPE dyads (62.7%) vs 48 control group dyads (44.9%) eliminated 1 or more caregiver-identified problems (χ²₁ = 6.72, <i>P</i> = <i>.</i> 01). CONCLUSION: Among community-living dyads, a nonpharmacologic biobehavioral environmental intervention compared with control resulted in better outcomes for COPE dyads at 4 months. Although no group differences were observed at 9 months for patients, COPE caregivers perceived greater benefits. (PsycInfo Database Record (c) 2024 APA, all rights reserved)

Primary study

Unclassified

Authors Lam LC , Lee JS , Chung JC , Lau A , Woo J , Kwok TC
Journal International journal of geriatric psychiatry
Year 2010
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OBJECTIVE: To evaluate a case management (CM) model for people with mild dementia, whereby resources within the family and in the community were mobilized and optimally used. METHOD: Community dwelling psychiatric and geriatrics outpatients with mild dementia were randomized to receive CM by a trained occupational therapist for 4 months (CM group, <i>N</i>=59) or usual care only (control group, <i>N</i>=43). Primary outcome indicators included the Zarit Burden Scale (ZBI), General Health Questionnaire (GHQ), and Personal Well-Being Index for Adult (PWI-A) of the family caregivers. Secondary outcome indicators included the Mini-Mental State Examination (MMSE), Neuropsychiatric Inventory (NPI), Cornell Scale for Depression in Dementia (CSDD), and Personal Well-Being Index for Intellectually Disabled (PWI-ID) of the demented subjects as measured at fourth and twelfth months. Result: CSDD is reduced in the CM group at fourth month, but not at twelfth month. The changes in outcome variables of persons with dementia did not differ between the groups (Mann-Whitney <i>U</i>-test, <i>p</i>&gt;0.05). At follow-up, CM group used more day care and domestic helpers than control group (χ², <i>p</i>&gt;0.05). CONCLUSION: Case management for Chinese persons with mild dementia outpatients did not show significant effects in reducing caregiver burden, but encouraged family caregivers to seek external support. (PsycInfo Database Record (c) 2024 APA, all rights reserved)

Primary study

Unclassified

Journal The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry
Year 2010
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OBJECTIVES: To provide evidence regarding the clinical efficacy of cognitive rehabilitation (CR) in early-stage Alzheimer disease (AD). DESIGN: Single-blind randomized controlled trial comparing CR with relaxation therapy and no treatment. SETTING: Outpatient, community-based setting. Participants: Sixty-nine individuals (41 women, 28 men; mean age 77.78 years, standard deviation 6.32, range = 56–89) with a diagnosis of AD or mixed AD and vascular dementia and a Mini-Mental State Examination score of 18 or above, and receiving a stable dose of acetylcholinesterase-inhibiting medication. Forty-four family carers also contributed. Intervention: Eight weekly individual sessions of CR consisting of personalized interventions to address individually relevant goals supported by components addressing practical aids and strategies, techniques for learning new information, practice in maintaining attention and concentration, and techniques for stress management. Measurements: The primary outcomes were goal performance and satisfaction, assessed using the Canadian Occupational Performance Measure. Questionnaires assessing mood, quality of life and carer strain, and a brief neuropsychological test battery were also administered. A subset of participants underwent functional magnetic resonance imaging (fMRI). RESULTS: CR produced significant improvement in ratings of goal performance and satisfaction, whereas scores in the other two groups did not change. Behavioral changes in the CR group were supported by fMRI data for a subset of participants. CONCLUSIONS: The findings support the clinical efficacy of CR in early-stage AD. CR offers a means of assisting people with early-stage AD and their families in managing the effects of the condition. (PsycInfo Database Record (c) 2024 APA, all rights reserved)

Primary study

Unclassified

Journal Journal of the American Geriatrics Society
Year 2010
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OBJECTIVES: To test the effects of an intervention that helps families manage distressing behaviors in family members with dementia. DESIGN: Two-group randomized trial. SETTING: In home. Participants: Two hundred seventy-two caregivers and people with dementia. Intervention: Up to 11 home and telephone contacts over 16 weeks by health professionals who identified potential triggers of patient behaviors, including communication and environmental factors and patient undiagnosed medical conditions (by obtaining blood and urine samples) and trained caregivers in strategies to modify triggers and reduce their upset. Between 16 and 24 weeks, three telephone contacts reinforced strategy use. Measurements: Primary outcomes were frequency of targeted problem behavior and caregiver upset with and confidence managing it at 16 weeks. Secondary outcomes were caregiver well-being and management skills at 16 and 24 weeks and caregiver perceived benefits. Prevalence of medical conditions for intervention patients were also examined. RESULTS: At 16 weeks, 67.5% of intervention caregivers reported improvement in targeted problem behavior, compared with 45.8% of caregivers in a no-treatment control group (<i>P</i> = .002), and reduced upset with (<i>P</i> = .03) and enhanced confidence managing (<i>P</i> = .01) the behavior. Additionally, intervention caregivers reported less upset with all problem behaviors (<i>P</i> = .001), less negative communication (<i>P</i>=.02), less burden (<i>P</i> = .05), and better well-being (<i>P</i> = .001) than controls. Fewer intervention caregivers had depressive symptoms (53.0%) than control group caregivers (67.8%, <i>P</i>=.02). Similar caregiver outcomes occurred at 24 weeks. Intervention caregivers perceived more study benefits (<i>P</i> &lt; .05), including ability to keep family members home, than controls. Blood and urine samples of intervention patients with dementia showed that 40 (34.1%) had undiagnosed illnesses requiring physician follow-up. CONCLUSION: Targeting behaviors upsetting to caregivers and modifying potential triggers improves symptomatology in people with dementia and caregiver well-being and skills. (PsycInfo Database Record (c) 2024 APA, all rights reserved)