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OBJECTIVES: Compare the effectiveness of 2 nonpharmacologic approaches to dementia care in nursing homes on 12- and 18-month resident outcomes, which was after the emergence of COVID-19. DESIGN AND INTERVENTION: A cluster randomized pragmatic trial, which included an embedded convergent mixed-methods design. Nursing homes were randomized to a team-based (TB) or problem-based (PB) intervention arm. SETTING AND PARTICIPANTS: Residents (n = 2658 at baseline) and staff (n = 327) from 52 nursing homes in the United States. METHODS: The exploratory quantitative analysis used a difference-in-differences model to compare the change in TB arm resident outcomes between baseline, 12 months, and 18 months relative to the PB arm using the Minimum Data Set 3.0. Outcomes included antipsychotic medication use, behavioral symptoms, wandering, and rejection of care. Staff interview data were analyzed in a 3-phase team-based rapid qualitative analysis approach, after which data were integrated. RESULTS: Rejection of care decreased by 5.9 percentage points in the TB arm relative to the PB arm at 12 months (95% CI -11.7 to -0.2). Emergent results indicated that COVID-19 visitation restrictions prevented PB staff from working with families to manage rejection of care as was done before the pandemic, whereas TB staff described using collaboration strategies not hindered by the pandemic. There was no statistically significant difference between arms in antipsychotic medication use, behavioral symptoms, and wandering at either follow-up period. When integrated, qualitative data provided contradictory information on antipsychotic medication use and confirmatory information on behavioral symptoms and wandering. CONCLUSIONS AND IMPLICATIONS: The exploratory nature and mixed results of the quantitative data analysis limited the ability to determine a clear benefit of one approach over the other. Findings suggest that dementia care delivery faced complex challenges during COVID-19 and required engagement from a broad range of nursing home staff underscoring the importance of equipping all staff with foundational dementia care knowledge.
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OBJECTIVES: Nursing home dementia care initiatives have prioritized nonpharmacologic approaches to manage behavioral symptoms. This study compares the effectiveness of 2 nonpharmacologic approaches on resident outcomes. DESIGN AND INTERVENTION: Cluster randomized controlled trial using a convergent mixed methods design to compare the team-based and problem-based approaches to dementia care. The team-based arm received facility-wide training, providing a shared language and knowledge across staff. The problem-based arm received discipline-specific web-based training for certain staff. SETTING AND PARTICIPANTS: Residents living with dementia (n = 2728) in 53 nursing homes; 327 staff. METHODS: Outcomes were antipsychotic medication use, behavioral symptoms, rejection of care, and wandering captured with the Minimum Data Set. Exploratory quantitative analysis compared change in outcomes between baseline and 6-month follow-up, across arms using a difference-in-difference model. Qualitative data were collected via staff interviews. Integration of quantitative and qualitative data determined whether these sources provided confirmatory, emergent, or contradictory information on outcomes. RESULTS: Resident wandering increased 3.51 percentage points (95% CI 0.6, 6.4) in the team-based arm compared to the problem-based arm, without increase in adverse events. Data integration confirmed this finding. Staff in the team-based arm described wandering as a positive coping strategy for the resident. We found mixed results for the other 3 outcomes. There was no statistically significant difference in antipsychotic medication use across arms, but staff interviews did reveal differences. There were trends of increased behavioral symptoms in the team-based arm and increased rejection of care in the problem-based arm (neither statistically significant), which were confirmed by qualitative findings. CONCLUSIONS AND IMPLICATIONS: Integration results suggest a benefit for resident wandering in the team-based approach, compared with the problem-based approach. Although findings are exploratory, training for all nursing home staff that accounts for diverse education and training needs may influence care delivery and have benefits for residents living with dementia.
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BACKGROUND AND OBJECTIVES: Few proven dementia-care programs are integrated into community-based agencies. We report on the acceptability and effectiveness of an evidence-based program, Care of People in their Environment (COPE), delivered by community-based agency staff. RESEARCH DESIGN AND METHODS: Pretest/post-test design with 3 data points (baseline, 3-month program completion, 6-month follow-up). COPE was delivered by 6 occupational therapists and 4 social workers at 2 agency sites with people living with dementia and caregivers. Staff assessed the interests and abilities of people living with dementia, home safety, caregiver challenges, and readiness to learn strategies. Staff provided dementia education, stress reduction, and nonpharmacological techniques tailored to caregiver-identified challenges. Acceptability (3- and 6-months), included completed sessions, upset with and confidence managing care challenges, strategies used, and program satisfaction. Effectiveness (3- and 6-months) included people living with dementia's health events (falls, emergency room visits, hospitalizations, and 911 calls), rehospitalization risk and functional dependence; and caregiver well-being and readiness. Benefits by in-person (nâ =â 188) versus virtual/hybrid (nâ =â 46) delivery due to Coronavirus Disease-2019 were evaluated. RESULTS: Of 843 dyads screened, 271 (32.1%) enrolled, 246 (90.8%) completed COPE, and 234 (95.1%) completed ≥1 follow-up. Regarding acceptability, caregivers completed about 8 sessions, reported improved confidence and upset (pâ <â .001), most implemented strategies 3-months (72.8%) and 6-months (83.5%), and expressed high program satisfaction. For effectiveness, compared to baseline, odds of people living with dementia's health events were lower including rehospitalization risk, although functional dependence increased; caregiver well-being (3-, 6-months, pâ <â .001) and readiness (3-months, pâ <â .01) improved. Outcomes did not differ by delivery mode. DISCUSSION AND IMPLICATIONS: Acceptability and effectiveness were strong. COPE resulted in tangible improvements for families regardless of delivery mode.
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Cuidadores , Demencia , Humanos , Demencia/terapia , Femenino , Masculino , Anciano , Cuidadores/psicología , COVID-19 , Anciano de 80 o más Años , Aceptación de la Atención de Salud , Evaluación de Programas y Proyectos de Salud , Persona de Mediana Edad , SARS-CoV-2RESUMEN
BACKGROUND AND OBJECTIVES: Alzheimer's disease and related dementias progress over time and result in cognitive decline, loss of independence, and behavioral and psychiatric symptoms of dementia that can lead to nursing home placement. Research has focused on examining the effects of nursing home placement on the family caregiver; however, their experiences are less understood. We sought to investigate the experiences and perceptions of family caregivers of nursing home residents with dementia. The objective was to create a conceptual model that explains the complex nature of the family caregiver experience. RESEARCH DESIGN AND METHODS: This study is part of a larger randomized controlled trial. Following a grounded theory approach, we completed 30 in-depth, one-on-one interviews with family caregivers of nursing home residents with dementia. Data analysis followed an iterative process that employed open, axial, and selective coding. RESULTS: Our conceptual model depicts the interrelationship between contributing factors that interrelate and impact family caregiver satisfaction with nursing home care. Six factors contribute to family caregiver satisfaction: family caregiver interactions with nursing home staff; staff management of resident behavioral symptoms; nursing home context; family caregiver knowledge of dementia; family caregiver strain; and the resident experience. DISCUSSION AND IMPLICATIONS: Our findings revealed family caregiver experiences that are unique to the institutional nursing home setting and not reflected in prior work focusing on experiences within community-based settings. Understanding family caregiver experiences and the contributors to how satisfaction in care is perceived, may foster collaboration and teamwork among families and staff.
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Enfermedad de Alzheimer , Cuidadores , Humanos , Familia , Teoría Fundamentada , Casas de Salud , Instituciones de Cuidados Especializados de EnfermeríaRESUMEN
Background: The COVID-19 pandemic has underscored the daily challenges nursing home (NH) staff face caring for the residents living with Alzheimer's Disease and Related Dementias (ADRD). Non-pharmacological approaches are prioritized over off-label medication to manage the behavioral and psychological symptoms of ADRD. Yet, it is not clear how to best equip NH staff and families with the knowledge and strategies needed to provide non-pharmacological approaches to these residents. Methods: This clustered randomized trial will compare team- and problem-based approaches to non-pharmacological ADRD care. The team-based approach includes core training for all NH staff using a common language and strategies to support continuity and sustainability. The problem-based approach capitalizes on the expertise of the professional healthcare providers to target issues that arise. A convergent mixed methods design will be used to examine (a) comparative effectiveness of the two approaches on long-term NH resident outcomes and (b) whether either approach is protective against the negative consequences of COVID-19. The primary outcome is the percentage of ADRD residents with off-label antipsychotic medication use, which will be evaluated with an intent-to-treat approach. Staff and family caregiver perspectives will be explored using a multiple case study approach. Conclusion: This trial will be the first-ever evaluation of team- and problem-based approaches to ADRD care across multiple NHs and geographic regions. Results can provide health system leaders and policymakers with evidence on how to optimize ADRD training for staff in an effort to enhance ADRD care delivery.
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There is a need for clear strategies and procedures to operationalize stakeholder engagement in research studies. Clear guidelines that promote shared leadership among study investigators and research stakeholders are important for inclusive and sustainable partnerships. Such guidelines may take the form of a governance charter and can be a means for encouraging the participation and inclusion of stakeholders who may have little to no experience with research or are otherwise underrepresented in research. This perspective article presents the Stakeholder-Centric Engagement Charter (SCEC), one effort to operationalize a stakeholder engagement approach between researchers and an advisory committee as guided by the Patient-Centered Outcomes Research Institute's (PCORI) Research Engagement Principles (i.e., reciprocal relationships, partnerships, co-learning, transparency-honesty-trust). Building on the SCEC can help future investigators develop a study-specific, dynamic, governance document outlining advisory committee and research team preferences in areas such as role expectations, study governance, and decision-making procedures.
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Evaluación del Resultado de la Atención al Paciente , Participación de los Interesados , Humanos , Liderazgo , InvestigadoresRESUMEN
Unpaid caregivers are often expected to help family members or friends overcome activity limitations and participation restrictions to successfully age in place. Caregivers assume multiple responsibilities, such as managing their own physical and psychosocial needs and navigating a complex health care system, and many feel ill equipped to fulfill the necessary health care responsibilities for their care recipients. Underprepared caregivers may cause poor outcomes for care recipients. Federal and state policy proposals call attention to the need to better support caregivers, especially as their numbers increase. Occupational therapy practitioners are well positioned to effectively engage caregivers as they navigate the health care system. The occupational therapy process looks broadly at the functional abilities, environmental contexts, and occupational demands that play a pivotal role in successful aging in place for clients and better outcomes for their caregivers. Now is the time to define occupational therapy's distinct value to this area.
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Vida Independiente , Terapia Ocupacional , Actividades Cotidianas , Anciano , Cuidadores , Familia , Humanos , Estados UnidosRESUMEN
BACKGROUND: People living with dementia (PLWD) and caregivers are adversely impacted by lack of meaningful activity leading to worse symptoms and impaired quality-of-life. There is a critical need to develop effective and well-tolerated treatments that mitigate clinical symptoms, engage PLWD and support caregiver wellbeing. We tested whether, compared to attention control, the Tailored Activity Program (TAP) reduced clinical symptoms and health-related events, and improved caregiver wellbeing, and if TAP activities were well-tolerated. METHODS: We conducted a single-blind randomized controlled trial among 250 dyads recruited from Baltimore-Washington DC (2012-2016) with a dementia diagnosis and clinically significant agitation/aggression. Dyads were randomized to TAP (n = 124) or attention control (n = 126), and interviewed at baseline, 3 (endpoint) and 6-months (follow-up) by interviewers masked to group allocation. TAP assessed PLWD abilities/interests, instructed caregivers in using prescribed activities, and provided dementia education and stress reduction techniques. Attention controls received disease education and home safety tips. Both groups had up to 8 home visits over 3-months. The primary outcome was frequency by severity scores for agitation/aggression subscales of Neuropsychiatric Inventory-Clinician using caregiver ratings. Secondary outcomes included number of instrumental (IADL) and activities of daily living (ADL) needing assistance, caregiver wellbeing, and confidence using activities. Health-related events (PLWD death, hospitalizations, caregiver hospitalization, depression) and perceived study benefits were captured over 6 months. PLWD tolerability of prescribed activities was examined. RESULTS: Of 250 dyads, most caregivers were female (81.2 %, n = 203), non-spouses (54.4 %, n = 136), white (59.2 %, n = 145) or African American (36.7 %, n = 90) with mean age = 65.4 (SD = 12.6). PLWD were mostly female (63.2 %, n = 158) with mean age = 81.4 (SD = 7.9), and mean MMSE = 14.3 (SD = 7.8). At 3-months, compared to controls, TAP conferred no benefit to agitation/aggression (p = 0.43, d = 0.11), but resulted in less IADL (p = 0.02, d=-0.33), and ADL (p = 0.04, d=-0.30) assistance, improved caregiver wellbeing (p = 0.01, d = 0.39), and confidence using activities (p = 0.02, d = 0.32). By 6-months, 15 PLWD in TAP had ≥ 1 health-related event versus 28 PLWD in control, demonstrating 48.8 % improvement in TAP (p = 0.03). TAP caregivers were more likely to perceive study benefits. Prescribed activities were well-tolerated. CONCLUSIONS: Although TAP did not benefit agitation/aggression, it impacted important outcomes that matter to families warranting its use in dementia care. CLINICAL TRIAL REGISTRATION: Clinicaltrials.gov # NCT01892579 at https://clinicaltrials.gov/ ; Date of clinical trial registration: 04/07/2013; Date first dyad enrolled: 15/11/2013.
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Cuidadores , Demencia , Actividades Cotidianas , Anciano , Anciano de 80 o más Años , Demencia/diagnóstico , Demencia/terapia , Femenino , Humanos , Masculino , Calidad de Vida , Método Simple CiegoRESUMEN
BACKGROUND: Neuropsychiatric symptoms (NPS) such as aggression, apathy, agitation, and wandering may occur in up to 90%of dementia cases. International guidelines have suggested that non-pharmacological interventions are as effective as pharmacological treatments, however without the side effects and risks of medications. An occupational therapy method, called Tailored Activity Program (TAP), was developed with the objective to treat NPS in the elderly with dementia and has been shown to be effective. OBJECTIVE: Evaluate the efficacy of the TAP method (outpatient version) in the treatment of NPS in individuals with dementia and in the burden reduction of their caregivers. METHODS: This is a randomized, double-blind, controlled clinical trial for the treatment of NPS in dementia. Outcome measures consisted of assessing the NPS of individuals with dementia, through the Neuropsychiatric Inventory-Clinician rating scale (NPI-C), and assessing the burden on their caregivers, using the Zarit Scale. All the participants were evaluated pre-and post-intervention. RESULTS: 54 individuals with dementia and caregivers were allocated to the experimental (nâ=â28) and control (nâ=â26) groups. There was improvement of the following NPS in the experimental group: delusions, agitation, aggressiveness, depression, anxiety, euphoria, apathy, disinhibition, irritability, motor disturbance, and aberrant vocalization. No improvement was observed in hallucinations, sleep disturbances, and appetite disorders. The TAP method for outpatient settings was also clinically effective in reducing burden between caregivers of the experimental group. CONCLUSION: The use of personalized prescribed activities, coupled with the caregiver training, may be a clinically effective approach to reduce NPS and caregiver burden of individuals with dementia.
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Demencia/terapia , Terapia Ocupacional , Pacientes Ambulatorios/estadística & datos numéricos , Problema de Conducta , Anciano , Agresión/fisiología , Apatía/fisiología , Cuidadores/psicología , Demencia/psicología , Femenino , Humanos , Masculino , Evaluación de Resultado en la Atención de Salud , Problema de Conducta/psicología , Agitación Psicomotora/psicología , Índice de Severidad de la EnfermedadRESUMEN
Older adults may benefit from interventions to successfully age in place. Research has an opportunity to test interventions and implementation strategies to fulfill the needs of older adults through collective evidence building. The purpose of this article is to describe the proceedings of the American Occupational Therapy Foundation (AOTF) 2019 Planning Grant Collective and describe the areas of research that were identified as critical. The AOTF convened scientists with expertise in the area of aging in place to catalyze research on aging in place for older adults. Four priority areas in the aging in place literature were highlighted: (a) identification of factors that support aging in place, (b) classification of processes by which family members and care partners are included in aging in place efforts, (c) categorization of technology supporting older adults to age in place, and (d) development of science that clarifies implementation of evidence-based practice.
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Vida Independiente , Terapia Ocupacional , Anciano , Familia , Humanos , Estados UnidosRESUMEN
Evaluating engagement in a research partnership can capture the success and impact of the research team-stakeholder partnerships. This article describes the Stakeholder-Centric Instrumentation Process (SCIP), an iterative method to develop an evaluation that reflects research team-stakeholder collective values, language, and priorities. We describe our implementation of the SCIP and provide the Stakeholder-Centric Engagement Evaluation, an evaluation developed in collaboration with our advisory committee. Mean scores across three administrations of the tool remained constant. We monitored responses received from our advisory committee during each administration for changes in scores that guided refinements to our stakeholder engagement strategy. Face validity and acceptability questions showed high satisfaction for the tool's time required to complete, (M = 4.50, SD = 0.86), clarity (M = 4.56, SD = 0.78), and relevance (M = 4.67, SD = 0.49) (maximum score = 5). The SCIP methodology and the Stakeholder-Centric Engagement Tool can be used during study planning and data collection to capture research team-stakeholder collaborations that reflect stakeholder priorities.
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Proyectos de Investigación , Participación de los Interesados , HumanosRESUMEN
OBJECTIVE: To determine the willingness-to-pay (WTP) of family caregivers to learn care strategies for persons living with dementia (PLwD). DESIGN: Randomized clinical trial. SETTING: Community-dwelling PLwD and their caregivers (dyads) in Maryland and Washington, DC. PARTICIPANTS: 250 dyads. INTERVENTION: Tailored Activity Program (TAP) compared to attention control. TAP provides activities tailored to the PLwD and instructs caregivers in their use. MEASUREMENT: At baseline, 3 and 6 months, caregivers were asked their WTP per session for an 8-session 3-month in-home nonpharmacologic intervention to address behavioral symptoms and functional dependence. RESULTS: At baseline, 3 and 6 months, caregivers assigned to TAP were willing to pay $26.10/session (95%CI:$20.42, $33.00), $28.70 (95%CI:$19.73, $39.30), and $22.79 (95%CI: $16.64, $30.09), respectively; attention control caregivers were willing to pay $37.90/session (95%CI: $27.10, $52.02), $30.92 (95%CI: $23.44, $40.94), $27.44 (95%CI: $20.82, $35.34), respectively. The difference in baseline to 3 and 6 months change in WTP between TAP and the attention control was $9.58 (95%CI: -$5.00, $25.47) and $7.15 (95%CI: -$5.72, $21.81). The difference between TAP and attention control in change in the proportion of caregivers willing to pay something from baseline to 3 and 6 months was -12% (95%CI: -28%, -5%) and -7% (95%CI:-25%, -11%), respectively. The difference in change in WTP, among caregivers willing to pay something, between TAP and attention control from baseline to 3 and 6 months was $17.93 (95%CI: $0.22, $38.30) and $11.81 (95%CI: -$2.57, $28.17). CONCLUSIONS: Family caregivers are willing to pay more for an intervention immediately following participation in a program similar to which they were asked to value.
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Cuidadores/economía , Cuidadores/psicología , Demencia/economía , Demencia/terapia , Salud de la Familia/economía , Anciano de 80 o más Años , Síntomas Conductuales , District of Columbia , Femenino , Humanos , Vida Independiente/economía , Estudios Longitudinales , Masculino , Maryland , Persona de Mediana EdadRESUMEN
Workplace aggression (WPA) among healthcare workers is a pervasive and serious problem in the healthcare industry, yet there is a poor understanding of WPA in the profession of occupational therapy (OT). The authors employed a mixed method design using a Likert scale survey and focus groups from two different settings and locations to explore WPA experiences of OT practitioners working in healthcare settings. Participants for the focus groups totaled 14 and 109 surveys were returned. The findings revealed that 100% of the focus group participants and 67% of the survey respondents report exposure to specific types of WPA. Key underlying causes relate to the challenges occupational therapy practitioner's face in advocating their professional role and values in a predominant biomedical setting. These findings are important not only to increase awareness among practitioners, leaders, and educators but to further examine how occupational therapy's unique role in healthcare can be fully recognized.
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Agresión , Terapeutas Ocupacionales/psicología , Cultura Organizacional , Lugar de Trabajo , Adulto , Femenino , Grupos Focales , Humanos , Masculino , Encuestas y CuestionariosRESUMEN
BACKGROUND AND OBJECTIVES: In the absence of effective pharmacotherapy, there is an urgent need to test evidence-based dementia care interventions using pragmatic trial approaches. We present results from a study in which an evidence-based, nonpharmacologic intervention for persons living with Alzheimer's disease and related dementia (ADRD) and their informal caregivers, Care of Persons with Dementia in their Environments (COPE), was tested in a Medicaid and state revenue-funded home and community-based service (HCBS) program. RESEARCH DESIGN AND METHODS: Using pragmatic trial design strategies, persons living with ADRD and their caregivers were randomly assigned as dyads to receive COPE plus usual HCBS (COPE; n = 145 dyads) or usual HCBS only (Usual Care or UC; n = 146 dyads). Outcomes were measured prerandomization, and 4 and 12 months postrandomization. Outcomes for persons living with ADRD included functional independence, activity engagement, self-reported quality of life, and behavioral and psychological symptoms. Caregiver outcomes included perceived well-being, confidence using dementia management strategies, and degree of distress caused by behavioral and psychological symptoms. RESULTS: After 4 months, caregivers receiving COPE reported greater perceived well-being (least squares mean = 3.2; 95% CI: 3.1-3.3) than caregivers receiving UC (3.0; 2.9-3.0; p < .001), and persons living with ADRD receiving COPE, compared to those receiving UC, showed a strong trend toward experiencing less frequent and less severe behavioral and psychological symptoms (9.7; 5.2-14.2 vs 12.7; 8.3-17.1; p = .07). After 12 months, persons living with ADRD receiving COPE were more engaged in meaningful activities (2.1; 2.0-2.1 vs 1.9; 1.9-2.0; p = .02) than those receiving UC. DISCUSSION AND IMPLICATIONS: Embedding COPE in a publicly funded HCBS program yielded positive immediate effects on caregivers' well-being, marginal positive immediate effects on behavioral and psychological symptoms, and long-term effects on meaningful activity engagement among persons living with ADRD. Findings suggest that COPE can be effectively integrated into this service system, an important step towards widespread adoption. CLINICAL TRIALS REGISTRATION NUMBER: NCT02365051.
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BACKGROUND/OBJECTIVES: Improving glycemic control in older African Americans with diabetes and mild cognitive impairment (MCI) is important as the population ages and becomes more racially diverse. DESIGN: Randomized controlled trial. SETTING: Recruitment from primary care practices of an urban academic medical center. Community-based treatment delivery. PARTICIPANTS: Older African Americans with MCI, low medication adherence, and poor glycemic control (N = 101). INTERVENTIONS: Occupational therapy (OT) behavioral intervention and diabetes self-management education. MEASUREMENTS: The primary outcome was a reduction in hemoglobin A1c level of at least 0.5% at 6 months, with maintenance effects assessed at 12 months. RESULTS: At 6 months, 25 of 41 (61.0%) OT participants and 22 of 46 (48.2%) diabetes self-management education participants had a reduction in hemoglobin A1c level of at least 0.5%. The model-estimated rates were 58% (95% confidence interval [CI] = 45%-75%) and 48% (95% CI = 36%-64%), respectively (relative risk [RR] = 1.21; 95% CI = 0.84-1.75; P = .31). At 12 months, the respective rates were 21 of 39 (53.8%) OT participants and 24 of 49 (49.0%) diabetes self-management education participants. The model-estimated rates were 50% (95% CI = 37%-68%) and 48% (95% CI = 36%-64%), respectively (RR = 1.05; 95% CI = 0.70-1.57; P = .81). CONCLUSION: Both interventions improved glycemic control in older African Americans with MCI and poor glycemic control. This result reinforces the American Diabetes Association's recommendation to assess cognition in older persons with diabetes and demonstrates the potential to improve glycemic control in this high-risk population. J Am Geriatr Soc 68:1015-1022, 2020.
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Terapia Conductista/métodos , Diabetes Mellitus Tipo 2/terapia , Cumplimiento de la Medicación/estadística & datos numéricos , Terapia Ocupacional/métodos , Automanejo/métodos , Negro o Afroamericano/estadística & datos numéricos , Anciano , Anciano de 80 o más Años , Disfunción Cognitiva/complicaciones , Diabetes Mellitus Tipo 2/complicaciones , Femenino , Hemoglobina Glucada/metabolismo , Control Glucémico/métodos , Humanos , Masculino , Persona de Mediana Edad , Método Simple CiegoRESUMEN
Aim: Evaluating stakeholder engagement can capture what meaningful engagement in research entails, how it develops, and how it is experienced by all collaborators. We conducted a scoping review of recent approaches for evaluating engagement in research and present a descriptive overview of our findings. Methods: We searched peer-reviewed journal articles published worldwide in English between January 2013 and June 2018. Results: Our final sample consisted of 17 articles. Various approaches for evaluating stakeholder engagement were identified including qualitative approaches, surveys and engagement logs. Discussion & conclusion: We identified evaluation approaches that varied in quality, detail and methods. Valid, systematic and inclusive approaches that are developed with research partners and are inclusive of diverse perspectives are an important area for future research.
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Investigación/organización & administración , Participación de los Interesados , Humanos , Evaluación de Programas y Proyectos de Salud , Reproducibilidad de los ResultadosRESUMEN
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.
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Actividades Cotidianas/psicología , Cuidadores/psicología , Demencia/terapia , Terapia Ocupacional/métodos , Calidad de Vida/psicología , Anciano de 80 o más Años , Síntomas Conductuales/diagnóstico , Síntomas Conductuales/etiología , Síntomas Conductuales/terapia , Cuidadores/educación , Demencia/enfermería , Demencia/psicología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Evaluación de Resultado en la Atención de SaludRESUMEN
OBJECTIVES: Our objective was to determine whether family caregivers of people with dementia (PwD) are willing to pay for an in-home intervention that provides strategies to manage behavioral symptoms and caregiver stress and to identify predictors of willingness-to-pay (WTP). METHODS: During baseline interviews of a randomized trial and before treatment assignment, caregivers were asked how much they were willing to pay per session for an eight-session program over 3 months. We stratified the sample into those who refused to provide a WTP, those willing to pay $US0, and those willing to pay > $US0. We used a two-part model, controlling for demographic characteristics, to predict adjusted mean WTP and to examine associations between WTP, clinical features (cognition, function, behavioral symptoms), and time spent assisting PwD with daily activities. First, we used logistic regression to model the probability a caregiver was willing to pay > $US0. Second, we used a generalized linear model (log link and Gamma distribution) to estimate the amount caregivers were willing to pay conditional on WTP > $US0. RESULTS: Of 250 dyads enrolled, 226 (90%) had complete data and were included in our analyses. Of 226 dyads, 26 (11%) refused to provide a WTP value, 72 (32%) were willing to pay $US0, and 128 (57%) were willing to pay > $US0. In the combined model, mean adjusted WTP was $US36.00 (95% confidence interval [CI] 26.72-45.27) per session. Clinical features were not significantly associated with WTP. One additional hour providing PwD assistance was associated with a $US1.64 (95% CI 0.23-3.04) increase in WTP per session. CONCLUSION: As caregivers spend more time assisting with daily activities, they are willing to pay more for a supportive program. CLINICAL TRIAL REGISTRATION NUMBER: NCT01892579.
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Síntomas Conductuales/prevención & control , Cuidadores/economía , Cuidadores/psicología , Demencia/terapia , Familia , Estrés Psicológico/prevención & control , Actividades Cotidianas , Anciano , Anciano de 80 o más Años , Femenino , Costos de la Atención en Salud , Humanos , Masculino , Persona de Mediana EdadRESUMEN
OBJECTIVE: To evaluate the efficacy of the tailored activity program-outpatient version (TAP-O) and to reduce neuropsychiatric symptoms (NPS) in patients with dementia and caregiver burden compared with a control group (psychoeducation intervention). METHODS: Twenty-one persons with dementia and their caregivers were recruited and randomized. The intervention group received TAP-O, designed for outpatients with dementia and their caregivers. TAP-O consisted of eight sessions in which an occupational therapist assessed the patient's abilities and interests; prescribed tailored activities; and educated caregivers about dementia, NPS, and how to implement meaningful activities in the daily routine. The control group received eight sessions of a psychoeducation intervention about dementia and NPS. RESULTS: Compared with controls, patients receiving TAP-O had a significant decrease in hallucination (P = 0.04), agitation (P = 0.03), anxiety (P = 0.02), aggression (P = 0.01), sleep disorder (P = 0.02), aberrant motor behavior (P = 0.02), and in caregiver burden (P = 0.003). CONCLUSIONS: Findings suggest that TAP-O may be an effective nonpharmacological strategy to reduce NPS of outpatients with dementia and to minimize caregiver burden.
Asunto(s)
Cuidadores/psicología , Demencia/psicología , Demencia/terapia , Actividades Recreativas/psicología , Terapia Ocupacional/métodos , Estrés Psicológico/prevención & control , Adaptación Psicológica , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Masculino , Persona de Mediana Edad , Educación del Paciente como Asunto/métodosRESUMEN
Evidence Connection articles provide a clinical application of systematic reviews developed in conjunction with the American Occupational Therapy Association's (AOTA's) Evidence-Based Practice Project. In this Evidence Connection article, we describe a case report of a person with Alzheimer's disease. The occupational therapy assessment and intervention process in the home setting is described. Findings from the systematic reviews on this topic were published in the November/December 2017 issue of the American Journal of Occupational Therapy and in AOTA's Occupational Therapy Practice Guidelines for Adults With Alzheimer's Disease and Related Major Neurocognitive Disorders. Each article in this series summarizes the evidence from the published reviews on a given topic and presents an application of the evidence to a related clinical case. Evidence Connection articles illustrate how the research evidence from the reviews can be used to inform and guide clinical reasoning.