RESUMO
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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Avaliação de Resultados da Assistência ao Paciente , Participação dos Interessados , Humanos , Liderança , PesquisadoresRESUMO
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/economia , Cuidadores/psicologia , Demência/economia , Demência/terapia , Saúde da Família/economia , Idoso de 80 Anos ou mais , Sintomas Comportamentais , District of Columbia , Feminino , Humanos , Vida Independente/economia , Estudos Longitudinais , Masculino , Maryland , Pessoa de Meia-IdadeRESUMO
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 , Demência , Atividades Cotidianas , Idoso , Idoso de 80 Anos ou mais , Demência/diagnóstico , Demência/terapia , Feminino , Humanos , Masculino , Qualidade de Vida , Método Simples-CegoRESUMO
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 Independente , Terapia Ocupacional , Atividades Cotidianas , Idoso , Cuidadores , Família , Humanos , Estados UnidosRESUMO
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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Agressão , Terapeutas Ocupacionais/psicologia , Cultura Organizacional , Local de Trabalho , Adulto , Feminino , Grupos Focais , Humanos , Masculino , Inquéritos e QuestionáriosRESUMO
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.
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Cuidadores/psicologia , Demência/psicologia , Demência/terapia , Atividades de Lazer/psicologia , Terapia Ocupacional/métodos , Estresse Psicológico/prevenção & controle , Adaptação Psicológica , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Educação de Pacientes como Assunto/métodosRESUMO
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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Atividades Cotidianas/psicologia , Cuidadores/psicologia , Demência/terapia , Terapia Ocupacional/métodos , Qualidade de Vida/psicologia , Idoso de 80 Anos ou mais , Sintomas Comportamentais/diagnóstico , Sintomas Comportamentais/etiologia , Sintomas Comportamentais/terapia , Cuidadores/educação , Demência/enfermagem , Demência/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação de Resultados em Cuidados de SaúdeRESUMO
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 (P<0.001; Cohen d=0.93), frequency (P<0.001; Cohen d=1.12), and intensity (P<0.001; Cohen d=0.77) of the behavioral psychological symptoms of dementia, and caregiver distress (P<0.001; Cohen d=0.87). Caregivers also reported improvement in their own QOL (P<0.05; Cohen d=0.57) and that of the person with dementia (P<0.01; Cohen d=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).
Assuntos
Adaptação Psicológica , Sintomas Comportamentais/psicologia , Cuidadores/psicologia , Demência/terapia , Qualidade de Vida/psicologia , Idoso de 80 Anos ou mais , Feminino , Humanos , MasculinoRESUMO
BACKGROUND: There are effective non-pharmacological treatment programs that reduce functional disability and changed behaviours in people with dementia. However, these programs (such as the Care of People with dementia in their Environments (COPE) program) are not widely available. The primary aim of this study is to determine the strategies and processes that enable the COPE program to be implemented into existing dementia care services in Australia. METHODS: This study uses a mixed methods approach to test an implementation strategy. The COPE intervention (up to ten consultations with an occupational therapist and up to two consultations with a nurse) will be implemented using a number of strategies including planning (such as developing and building relationships with dementia care community service providers), educating (training nurses and occupational therapists in how to apply the intervention), restructuring (organisations establishing referral systems; therapist commitment to provide COPE to five clients following training) and quality management (coaching, support, reminders and fidelity checks). Qualitative and quantitative data will contribute to understanding how COPE is adopted and implemented. Feasibility, fidelity, acceptability, uptake and service delivery contexts will be explored and a cost/benefit evaluation conducted. Client outcomes of activity engagement and caregiver wellbeing will be assessed in a pragmatic pre-post evaluation. DISCUSSION: While interventions that promote independence and wellbeing are effective and highly valued by people with dementia and their carers, access to such programs is limited. Barriers to translation that have been previously identified are addressed in this study, including limited training opportunities and a lack of confidence in clinicians working with complex symptoms of dementia. A strength of the study is that it involves implementation within different types of existing services, such as government and private providers, so the study will provide useful guidance for further future rollout. TRIAL REGISTRATION: 16 February 2017; ACTRN12617000238370 .
Assuntos
Cuidadores/psicologia , Análise Custo-Benefício/métodos , Atenção à Saúde/métodos , Demência/psicologia , Demência/terapia , Medicina Baseada em Evidências/métodos , Austrália/epidemiologia , Cuidadores/economia , Comunicação , Atenção à Saúde/economia , Demência/economia , Demência/epidemiologia , Feminino , Pessoal de Saúde/economia , Humanos , Vida Independente/psicologia , MasculinoRESUMO
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.
Assuntos
Doença de Alzheimer/reabilitação , Terapia Ocupacional , Medicina Baseada em Evidências , HumanosRESUMO
OBJECTIVE: The goal of the evidence review was to evaluate the effectiveness of interventions for caregivers of people with Alzheimer's disease and related major neurocognitive disorders that facilitate the ability to maintain participation in the caregiver role. METHOD: Scientific literature published in English between January 2006 and April 2014 was reviewed. Databases included MEDLINE, PsycINFO, CINAHL, OTseeker, and the Cochrane Database of Systematic Reviews. RESULTS: Of 2,476 records screened, 43 studies met inclusion criteria. Strong evidence shows that multicomponent psychoeducational interventions improve caregiver quality of life (QOL), confidence, and self-efficacy and reduce burden; cognitive reframing reduces caregiver anxiety, depression, and stress; communication skills training improves caregiver skill and QOL in persons with dementia; mindfulness-based training improves caregiver mental health and reduces stress and burden; and professionally led support groups enhance caregiver QOL. CONCLUSION: Strong evidence exists for a spectrum of caregiver interventions. Translation of effective interventions into practice and evaluation of sustainability is necessary.
Assuntos
Doença de Alzheimer/enfermagem , Ansiedade/reabilitação , Cuidadores/psicologia , Depressão/reabilitação , Terapia Ocupacional/métodos , Qualidade de Vida , Autoeficácia , Estresse Psicológico/reabilitação , Terapia Cognitivo-Comportamental , Humanos , Transtornos Neurocognitivos/reabilitação , Grupos de Autoajuda , Resultado do TratamentoRESUMO
OBJECTIVE: Traumatic brain injury (TBI) often undermines community re-integration, impairs functioning and produces other symptoms. This study tested an innovative programme for veterans with TBI, the Veterans' In-home Programme (VIP), delivered in veterans' homes, involving a family member and targeting the environment (social and physical) to promote community re-integration, mitigate difficulty with the most troubling TBI symptoms and facilitate daily functioning. SETTING: Interviews and intervention sessions were conducted in homes or by telephone. PARTICIPANTS: Eighty-one veterans with TBI at a VA polytrauma programme and a key family member. DESIGN: This was a 2-group randomized controlled trial. Control-group participants received usual-care enhanced by two attention-control telephone calls. Follow-up interviews occurred up to 4 months after baseline interview. MAIN MEASURES: VIP's efficacy was evaluated using measures of community re-integration, target outcomes reflecting veterans' self-identified problems and self-rated functional competence. RESULTS: At follow-up, VIP participants had significantly higher community re-integration scores and less difficulty managing targeted outcomes, compared to controls. Self-rated functional competence did not differ between groups. In addition, VIP's acceptability was high. CONCLUSION: A home-based, family-inclusive service for veterans with TBI shows promise for improving meaningful outcomes and warrants further research and clinical application.
Assuntos
Lesões Encefálicas Traumáticas/psicologia , Lesões Encefálicas Traumáticas/reabilitação , Integração Comunitária , Família/psicologia , Modalidades de Fisioterapia , Veteranos/estatística & dados numéricos , Adulto , Estudos de Coortes , Feminino , Humanos , Internet , Masculino , Pessoa de Meia-Idade , Cooperação do Paciente , Recuperação de Função FisiológicaRESUMO
BACKGROUND: Community reintegration (CR) poses a major problem for military veterans who have experienced a traumatic brain injury (TBI). Factors contributing to CR after TBI are poorly understood. OBJECTIVE: To address the gap in knowledge, an ecological framework was used to explore individual and family factors related to CR. DESIGN: Baseline data from an intervention study with 83 veterans with primarily mild to moderate TBI were analyzed. Instruments measured CR, depressive symptoms, physical health, quality of the relationship with the family member, and sociodemographics. Posttraumatic stress disorder and TBI characteristics were determined through record review. RESULTS: Five variables that exhibited significant bivariate relationships with CR (veteran rating of quality of relationship, physical functioning, bodily pain, posttraumatic stress disorder diagnosis, and depressive symptoms) were entered into hierarchical regression analysis. In the final analysis, the five variables together accounted for 35% of the variance, but only depression was a significant predictor of CR, with more depressed veterans exhibiting lower CR. CONCLUSIONS: Efforts to support CR of Veterans with TBI should carefully assess and target depression, a modifiable factor.
Assuntos
Lesões Encefálicas/psicologia , Família/psicologia , Relações Interpessoais , Transtornos Mentais/psicologia , Características de Residência , Veteranos/psicologia , Adulto , Idoso , Lesões Encefálicas/epidemiologia , Comorbidade , Transtorno Depressivo/epidemiologia , Transtorno Depressivo/psicologia , Feminino , Humanos , Masculino , Transtornos Mentais/epidemiologia , Pessoa de Meia-Idade , Philadelphia , Apoio Social , Fatores Socioeconômicos , Transtornos de Estresse Pós-Traumáticos/epidemiologia , Transtornos de Estresse Pós-Traumáticos/psicologia , Veteranos/estatística & dados numéricos , Adulto JovemRESUMO
A scholarship of practice approach sets the stage for collaborative partnerships across academic and clinical practice settings that result in positive gains for all stakeholders. These gains include an enhanced ability to generate and apply relevant evidence in practice, disseminate knowledge and innovation, and ensure best practice is relevant to and effective for, people receiving services and their caregivers. This paper discusses national and international examples of collaborative, research-based practice initiatives that have implemented a scholarship of practice approach. The exemplars described here are framed within the Model of Human Occupation, which addresses the importance of volition, habits, roles, environment, and performance capacities in facilitating engagement in occupation for people with dementia. Research that focuses on how therapists adopt and use evidence in practice, as well as the opportunities and challenges for supporting therapists and their use of theory and evidence are discussed.
Assuntos
Comportamento Cooperativo , Atenção à Saúde , Demência/terapia , Pesquisa sobre Serviços de Saúde , Serviços de Saúde , Terapia Ocupacional , Pesquisa Translacional Biomédica , Idoso , Cuidadores , Serviços de Saúde para Idosos , Humanos , Guias de Prática Clínica como AssuntoRESUMO
OBJECTIVES: To examine prevalence of modifiable risk factors and their contribution to patient quality of life (QoL) as rated by dementia patients and family caregivers. DESIGN: Cross-sectional. SETTING: Home environment. PARTICIPANTS: 88 patients and their caregivers. MEASUREMENTS: Modifiable characteristics of home environments, patients, and caregivers were observed or obtained through interview. Demographics and ratings of patients' QoL were obtained from patients and caregivers. RESULTS: Patients had mean Mini-mental Status Examination (MMSE) score = 17.7 ± 4.6, (range: 10-28) on an average 7.7 ± 2.4 neuropsychiatric behaviors, 6.0 ± 3.1 health conditions and moderate functional challenges; 70.7% (N = 58) had fall risk; 60.5% (N = 52) had sleep problems at least once weekly; and 42.5% (N = 37) had pain. An average of 8.1 ± 5.2 home hazards and 5.4 ± 4.1 adaptations were observed; 51.7% had unmet device/navigation needs. Patients' and caregivers' QoL ratings were unrelated to MMSE; and patients' self-rated QoL was higher than rated by caregivers. Number of health conditions and unmet device/navigation needs were inversely associated with patient self-rated QoL, and number of health conditions, frequency of behaviors, and level of negative communications were inversely associated with caregiver's assessment of patient QoL. Positive endorsement of caregiving was positively associated with caregiver's appraisal of patient QoL. Other factors were unrelated. CONCLUSIONS: Most patients lived at home with high fall risk, unmanaged behavioral symptoms, pain, sleep disturbances, environmental challenges, and multiple hazards. Except for health, factors associated with lower QoL differed for patients and caregivers. Results suggest need to improve QoL by addressing modifiable risk factors and tailoring interventions to patient and caregiver perspectives.
Assuntos
Cuidadores , Demência/psicologia , Assistência Domiciliar/psicologia , Qualidade de Vida , Atividades Cotidianas/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Demência/terapia , Feminino , Assistência Domiciliar/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Testes Neuropsicológicos , Prevalência , Qualidade de Vida/psicologia , Fatores de Risco , Inquéritos e QuestionáriosRESUMO
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.
Assuntos
Doença de Alzheimer , Cuidadores , Humanos , Família , Teoria Fundamentada , Casas de Saúde , Instituições de Cuidados Especializados de EnfermagemRESUMO
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 , Demência , Humanos , Demência/terapia , Feminino , Masculino , Idoso , Cuidadores/psicologia , COVID-19 , Idoso de 80 Anos ou mais , Aceitação pelo Paciente de Cuidados de Saúde , Avaliação de Programas e Projetos de Saúde , Pessoa de Meia-Idade , SARS-CoV-2RESUMO
BACKGROUND AND OBJECTIVES: Nonpharmacologic interventions have demonstrated benefits for people living with dementia and their caregivers. Few studies have evaluated their implementation in real-world settings. Using normalization process theory (NPT), an implementation science framework, this study evaluated the acceptability of the care of persons with dementia in their environments (COPE) intervention by care managers and interventionists implemented in a Medicaid and state-revenue funded home and community-based services (HCBS) program. RESEARCH DESIGN AND METHODS: NPT and data from 9 care manager focus groups (n = 61) and 2 interventionist focus groups (n = 8) were utilized to understand COPE acceptability to program care managers and interventionists. NPT's 4 criteria, coherence, cognitive participation, collective action, and reflexive monitoring, framed the research questions used to evaluate the intervention's implementation. RESULTS: Care managers and interventionists demonstrated a shared understanding of COPE aims and the value of practices implemented (coherence). Training by national experts facilitated program buy-in to meet COPE goals and was demonstrated by care managers and interventionists as they used the training to broaden their program involvement (cognitive participation). Operational work done by care managers and interventionists to implement the intervention (collective action) and their shared perceptions of program benefits (reflexive monitoring) contributed to program implementation, families' positive responses to COPE and enhanced sustainability. DISCUSSION AND IMPLICATIONS: Introducing evidence-based dementia care interventions into HCBS programs strongly depends upon building shared understandings between care managers and interventionists and valuing the contributions of all stakeholders involved in delivering care innovations to people living with dementia and their caregivers.
Assuntos
Gerentes de Casos , Demência , Humanos , Cuidadores/psicologia , Grupos Focais , Demência/terapia , Demência/psicologiaRESUMO
We investigated costs of delivering the Tailored Activity Program (TAP) and cost savings from two perspectives (health sector and societal) for people living with dementia (PLWD) and their caregivers (dyads) compared to attention control (AC) using data from a randomized controlled trial. The evaluation assessed intervention delivery costs and caregiver reported health care utilization. The total intervention cost of TAP was $1707/dyad versus $864/dyad for AC, and total costs over 6 months for TAP dyads as compared to AC were $1299 (CI: -$10,496, $7898) less from the healthcare perspective, and $761 (CI: -$10,133, $8611) less from the societal perspective. TAP cost savings are driven by lower use of healthcare services among participating dyads, but further analyses with larger samples is warranted to confirm its financial impact.
Assuntos
Demência , Qualidade de Vida , Humanos , Cuidadores , Custos de Cuidados de Saúde , Aceitação pelo Paciente de Cuidados de Saúde , Demência/terapiaRESUMO
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.