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OBJECTIVES: Nearly 75% of persons living with dementia (PLWD) in the US live at home and are cared for by informal family members who have limited access to supportive and accessible services, indicating an increased need for these types of services (Alzheimer's Association, 2023). The Alzheimer's Association call centers offer free telephone care consultations, but it currently remains unclear which types of brief telephone support benefit caregivers. This study compares outcomes of participants who received traditional care consultation calls via the Alzheimer's Association National Helpline with care consultation calls from Helpline staff trained in Solution-Focused Brief Strategies (SFBS), a client-centered evidence- and resource-based approach. METHOD: Sequential callers were randomly assigned to the "traditional" or "SFBS" care consultation groups and were assessed at the time of call (baseline) and post-call (T1). The outcomes of interest were general self-efficacy (GSE), self-efficacy in managing emotions (PROMIS), caregiver mastery, therapeutic alliance, and goal setting. RESULTS: Of over 500 callers, callers receiving the SFBS scored higher on therapeutic alliance and goal-setting metrics, such as greater sense of collaboration on goals (effect size = 0.280, p = 0.0005, significant with Bonferroni correction), mutual agreement with care consultant on goals (effect size = 0.418, p < 0.0001, significant with Bonferroni correction), and believing the way the problem was resolved was correct (effect size = 0.286, p = 0.0007, significant with Bonferroni correction) than those receiving the traditional care consultation. Both groups reported improvements in the PROMIS measure, but there were no differences between groups. There were no significant differences in GSE or caregiver mastery scores between groups. CONCLUSION: This study provides evidence for the effectiveness of the integration of SFBS in dementia care consultation calls as part of telephone-based supportive services for dementia caregivers.
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The National Institute on Aging Alzheimer's Disease/Alzheimer's Disease and Related Dementias Research Implementation Milestones emphasize the need for implementation research that maximizes up-take and scale-up of evidence-based dementia care practices across settings, diverse populations, and disease trajectories. Organizational readiness for implementation is a salient consideration when planning and conducting embedded pragmatic trials, in which interventions are implemented by provider staff. The current article examines the conceptual and theoretical underpinnings of organizational readiness for implementation and the operationalization of this construct. We offer a preliminary conceptual model for explicating and measuring organizational readiness and describe the unique characteristics and demands of implementing evidence-based interventions targeting persons with dementia and/or their care partners. [Research in Gerontological Nursing, 17(3), 149-160.].
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Demencia , Humanos , Demencia/enfermería , Estados Unidos , Innovación Organizacional , Modelos Organizacionales , Ensayos Clínicos Pragmáticos como Asunto , Anciano , Práctica Clínica Basada en la EvidenciaRESUMEN
AIM: To highlight the value of utilizing the Listening Guide methodology for nursing research and provide an exemplar applying this methodology to explore a novel concept in an underrepresented group-inner strength in persons newly diagnosed with mild cognitive impairment along with their care partners. DESIGN: Methodology discussion paper. METHODS: The exemplar study used the Listening Guide methods for data elicitation and analysis. Methods included adaptations for the study population and novice qualitative researchers. RESULTS: The Listening Guide methodology with adaptations enabled the research team to centre the voices of persons living with mild cognitive impairment, highlight an abstract phenomenon and attend to the influences of the sociopolitical context. Further, this methodology helped address common challenges emerging qualitative researchers encounter, including understanding methods of application, engaging reflexively and immersing in the data. CONCLUSION: The Listening Guide is a voice-centred qualitative methodology that is well suited to foreground the experiences of groups underrepresented in research and explore emerging phenomena. IMPLICATIONS FOR NURSING: Nurses are central to striving for health equity. The Listening Guide methodology offers a valuable and accessible research tool to understand the experiences and needs of underrepresented groups and shape healthcare in response. IMPACT: The Listening Guide methodology can be broadly applied to research with persons with mild cognitive impairment, and other underrepresented groups, to explore other phenomena beyond inner strength and move the science forward in representing the perspectives of groups underrepresented by research. PATIENT OR PUBLIC CONTRIBUTION: Persons living with cognitive impairment and their care partners participated in study conceptualization, interview guide development, methods development and dissemination plans.
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Disfunción Cognitiva , Investigación en Enfermería , Investigación Cualitativa , Humanos , Disfunción Cognitiva/enfermería , Investigación en Enfermería/métodos , Femenino , Proyectos de Investigación , Masculino , Persona de Mediana Edad , Adulto , Anciano , Grupos Minoritarios/psicologíaRESUMEN
BACKGROUND: Anxiety is common in older adults and social isolation is one of the leading factors associated with their anxiety. However, what is unknown is how the relationship between social isolation and anxiety differs by cognitive status. Therefore, this study was conducted to (1) compare the level of social isolation and anxiety in older adults who developed probable dementia and mild cognitive impairment (MCI) to those who maintained normal cognitive function over 5 years; and (2) determine if cognitive impairment moderates the relationship between changes in social isolation and changes in anxiety over 5 years. METHODS: A secondary data analysis was conducted using the National Social Life, Health, and Aging Project (NSHAP): Wave 2 (2010-2011) and Wave 3 (2015-2016). The participants were categorized into three groups: Participants who developed probable dementia over 5 years (4.3%), developed probable MCI (19.1%), or maintained normal cognitive function (76.6%). Weighted linear regression analyses with a group interaction were used to examine the moderating effect of cognitive impairment on the relationship between changes in social isolation and anxiety. RESULTS: At the 5-year follow up, there were statistically significant differences in social isolation between the three groups (p = 0.043). Regression analyses showed that increased social isolation over time was related to increased anxiety over 5 years regardless of cognitive status after controlling for covariates (p = 0.017). CONCLUSIONS: The relationship between social isolation and anxiety was a universal phenomenon regardless of cognitive status. Tailored interventions targeting both people with or without cognitive impairment are needed to lessen social isolation and anxiety.
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Disfunción Cognitiva , Demencia , Humanos , Anciano , Estudios Longitudinales , Disfunción Cognitiva/diagnóstico , Disfunción Cognitiva/epidemiología , Disfunción Cognitiva/psicología , Aislamiento Social/psicología , Ansiedad/diagnóstico , Ansiedad/epidemiologíaRESUMEN
Background and Objectives: Sleep disturbances occur in >60% of persons living with cognitive impairment, affecting their quality of life (QOL). Regulating the sleep-wake cycle through engaging cognitive, physical, and sensory-based activities delivered at strategic times may reduce sleep disturbances and be a feasible nonpharmacological treatment for sleep problems. The objective of this trial was to test the efficacy of a timed-activity intervention in improving QOL and sleep disturbances in persons living with cognitive impairment. Research Design and Method: Randomized 2-group parallel design involving 209 dyads of community-residing persons living with cognitive impairment and care partners. Dyads were randomly assigned (1:1) to 1-hr home activity sessions administered weekly in the morning, afternoon, or evening over 4 weeks (the Healthy Patterns Sleep Program), or to an attention-control condition consisting of sleep hygiene training plus education on home safety and health promotion. QOL, objective and subjective sleep quality, and neuropsychiatric symptoms were assessed at baseline and 4 weeks later. Results: QOL was significantly improved in the intervention group compared to control (pâ =â .0491). There were no significant effects on objective or subjective sleep or neuropsychiatric symptoms. In a subgroup analysis, subjective sleep as measured by the PROMIS (Patient Reported Outcomes Measurement Information System) Sleep-Related Impairment survey was significantly improved in the intervention group compared to the control group for individuals with symptoms of depression (pâ =â .015) or poor observed sleep at baseline (pâ =â .005). Discussion and Implications: The Healthy Patterns Intervention may benefit QOL for persons living with cognitive impairment and those with poor subjective sleep. A longer dose may be necessary to elicit improvement in actigraphically measured sleep-wake activity. Clinical Trial Registration Number: NCT0368218 5.
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Testing interventions in real-world settings requires fidelity monitoring to ensure implementation integrity. However, strategies to enhance, monitor, and measure fidelity deployed in efficacy trials may not be feasible in pragmatic trials or sustainable in practice. This paper reviews published translational or pragmatic studies of dementia caregiver support interventions to understand how fidelity was previously treated in order to derive recommendations for future pragmatic-like trials. A search using SCOPUS, EMBASE, and Google Scholar identified 31 translational caregiver intervention studies of which 20 (64.5%) referenced fidelity. Of these 20, 11 (55.0%) reported fidelity measurement, whereas 9 (45.0%) only recognized its importance. Of the 11 studies, fidelity was assessed using investigator-developed scoring forms, audio/video recordings, evaluations from caregivers and interventionists, and by comparing outcomes with the original efficacy trial. Additionally, 7 (63.6%) of 11 studies reported fidelity results, representing only 22.5% of 31 studies reporting outcomes demonstrating the inconsistency in the field concerning the reporting outcomes of fidelity. We conclude that fidelity methods used in translational studies to date are not practical nor sustainable for ongoing monitoring of evidence-based programs in real-world settings and that only 2 aspects of fidelity, intervention and adherence, are considered. New approaches are needed to ensure fidelity integrity in pragmatic trials and which can be sustained thereafter.
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Cuidadores , Demencia , Humanos , Grabación en VideoRESUMEN
The pipeline from discovery to testing and then implementing evidence-based innovations in real-world contexts may take 2 decades or more to achieve. Implementation science innovations, such as hybrid studies that combine effectiveness and implementation research questions, may help to bridge the chasm between intervention testing and implementation in dementia care. This paper describes hybrid effectiveness studies and presents 3 examples of dementia care interventions conducted in various community-based settings. Studies that focus on outcomes and implementation processes simultaneously may result in a truncated and more efficient implementation pipeline, thereby providing older persons, their families, health care providers, and communities with the best evidence to improve quality of life and care more rapidly. We offer post-acute and long-term care researchers considerations related to study design, sampling, data collection, and analysis that they can apply to their own dementia and other chronic disease care investigations.
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Demencia , Calidad de Vida , Humanos , Anciano , Anciano de 80 o más Años , Cuidados a Largo Plazo , Enfermedad Crónica , Proyectos de Investigación , Demencia/terapiaRESUMEN
BACKGROUND: When caregivers have a high level of caregiver mastery, their care recipients with cognitive impairment have less behavioral health problems. However, the relationship between caregiver mastery and anxiety among care recipients over time is unknown. Therefore, this study was conducted to examine that better caregiver mastery is associated with less anxiety in individuals with cognitive impairment over time. METHODS: A secondary data analysis was conducted using the Healthy Patterns Clinical Trial (NCT03682185) dataset and guided by Factors Associated with Behavioral and Psychological Symptoms of Dementia conceptual framework. This study included 154 dyads of individuals with cognitive impairment and their caregivers. Multiple linear regression analyses were performed on changes in anxiety. Model 1 included variables at the level of neurodegeneration (i.e., cognitive impairment and age). Model 2 added patient factors (i.e., sleep problems and depression) with the Model 1. Finally, Model 3 included caregiver factor (i.e., caregiver mastery) with the Model 2 to examine how changes in caregiver mastery influence changes in anxiety of care recipients. RESULTS: Model 3 was statistically significant; after controlling for variables at the level of neurodegeneration associated with cognitive impairment and patient factors, improvement of caregiver mastery over time (ß =-0.230, p = 0.015) was related to decreased anxiety over time (R2 = 0.1099). CONCLUSIONS: Caregivers with high caregiver mastery may have better knowledge on how to care for their loved ones and how to manage their neuropsychiatric symptoms. Therefore, improving the level of caregiver mastery by providing psychoeducational programs and resources that family caregivers need will help reduce the frequency of anxiety in individuals with cognitive impairment.
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Introduction: This study examined the feasibility, acceptability, and preliminary efficacy of tailored music listening intervention on sleep disturbances in older adults with dementia and their caregivers. Methods: We randomly assigned 33 older adults with dementia (mean age 71.7 [SD: 7.1], 72.7% female, 81.8% African American/Black) and their caregivers (mean age 58.4 [SD: 16.7], 72.7% female, 84.8% African American/Black) to a wait-list control or intervention group (NCT04157244). Results: The music intervention was feasible as evidenced by high study measure completion and retention rates (>90%). Recruitment was stopped prematurely due to the COVID-19 pandemic. We found mixed acceptability results from the survey and qualitative interviews with the participants. Both groups improved on objective sleep outcomes of sleep latency and wake sleep after onset. We found a small effect size for sleep duration post-intervention. Discussion: The findings provide preliminary evidence for the feasibility of a tailored music intervention and identified ways to improve its acceptability.
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Demencia , Musicoterapia , Anciano , Femenino , Humanos , Masculino , Persona de Mediana Edad , Estudios de Factibilidad , Musicoterapia/métodos , Pandemias , AdultoRESUMEN
BACKGROUND: Insomnia symptoms in older adults with mild cognitive impairment represent a significant public health burden in terms of impaired quality of life, risks from untreated insomnia, and adverse effects from pharmaceutical insomnia treatment. To address current limitations in the most effective non-pharmacological treatments for insomnia in older adults with mild cognitive impairment, we are conducting a randomized pilot study to test a brief (4- week), tablet-based, personalized, multicomponent behavioral sleep intervention (MBSI) for insomnia, compared to a sleep education control, in a sample of older adults with mild cognitive impairment. METHODS: Participants will be randomized in a 1:1 ratio to intervention or control group. Both groups will complete three virtual study data collection visits: baseline, 4-week post-intervention, and 12-week post-intervention follow-up. Key components of the 4-week intervention include sleep hygiene education, stimulating meaningful activity during the day and promoting relaxation therapy at night. We will determine preliminary immediate (4-week) and sustained efficacy (12-week) of MBSI compared to sleep education on sleep related outcomes and health related quality of life. Additionally, we will explore mechanisms by which the intervention affects sleep and health related quality of life using standardized questionnaires and inflammatory biomarkers. RESULTS: (N/A). DISCUSSION: The findings of the proposed project will inform future, larger scale clinical trials and may provide a novel and innovative way for older adults with mild cognitive impairment to achieve better sleep and health-related quality of life outcomes.
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Disfunción Cognitiva , Trastornos del Inicio y del Mantenimiento del Sueño , Humanos , Anciano , Trastornos del Inicio y del Mantenimiento del Sueño/terapia , Calidad de Vida , Proyectos Piloto , Resultado del Tratamiento , Sueño , Disfunción Cognitiva/terapia , Ensayos Clínicos Controlados Aleatorios como AsuntoRESUMEN
INTRODUCTION: Although Asian international graduate students (AIGS) were at risk for mental health problems during the pandemic, little is known about the experience of international students during COVID-19. This study aimed to examine the experiences of AIGS who lived in the United States during COVID-19. METHOD: This qualitative descriptive study included 22 participants from five large universities in Philadelphia. Semi-structured interviews were conducted during September and October 2020, and a thematic analysis was used for data analyses. RESULTS: Three themes were found: (a) "We are left alone here": Being an international student; (b) "Stay busy" and "Do something": Being a graduate student; and (c) "I have a wish": Seeking for support, perceived support, and preferred counseling services as a self-advocator. DISCUSSION: Help is needed for AIGS to navigate uncertainties, provide proper coping skills, make efforts against anti-Asian racism, and provide culturally based mental health resources.
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COVID-19 , Racismo , Humanos , Estados Unidos , Pandemias , Estudiantes/psicología , AsiáticoRESUMEN
BACKGROUND: Although nonpharmacological approaches are considered first-line treatments for dementia-related behaviors, it is unclear as to their effectiveness for different racial groups. We evaluated the effects of the Tailored Activity Program (TAP) on agitated and aggressive behaviors in Black and White families. METHODS: We conducted a single-blind, two-arm randomized controlled trial involving Black (N = 90) and White (N = 145) families. TAP involved eight home sessions by occupational therapists who provided activities tailored to abilities and interests and instructed caregivers in their use over 3 months. An attention control group received eight sessions by research assistants who provided disease education and home safety tips. Measures included caregiver ratings of frequency by severity for the agitation and aggression subscales of the Neuropsychiatric Inventory-Clinician (NPI-C) at 3 months (main trial primary outcome), number of completed sessions and time spent, changes in behavioral subcomponents of the subscales (frequency, severity, caregiver distress), and percent improving/worsening. RESULTS: Black and White families completed similar numbers of treatment sessions, but White dyads averaged nearly two contact hours more than Black dyads (p = 0.008). At 3 months, an interaction effect (treatment by race) indicated significantly greater reductions in frequency by severity scores for the agitation and aggression subscales for Black TAP dyads versus White TAP dyads and White and Black attention control dyads. Also, significant interaction effects favoring TAP Black dyads were observed for select behavioral components. For TAP dyads with elevated baseline agitation/aggression levels (N = 71), 34.5% of Black versus 11.9% of White dyads improved; whereas 2.6% of Black versus 16.7% of White dyads had worsened agitation/aggression scores. CONCLUSION: Black families compared to White families derived greater behavioral benefits from TAP for PLWD at 3 months despite having less treatment exposure. Examining differential race effects may enhance precision in using nonpharmacological approaches and promote equity in dementia care for underserved populations.
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Demencia , Terapia Ocupacional , Humanos , Demencia/terapia , Demencia/psicología , Método Simple Ciego , Cuidadores/psicología , AgresiónRESUMEN
BACKGROUND: This protocol is based on home health care (HHC) best practice evidence showing the value of coupling timely post-acute care visits by registered nurses and early outpatient provider follow-up for sepsis survivors. We found that 30-day rehospitalization rates were 7 percentage points lower (a 41% relative reduction) when sepsis survivors received a HHC nursing visit within 2 days of hospital discharge, at least 1 more nursing visit the first week, and an outpatient provider follow-up visit within 7 days compared to those without timely follow-up. However, nationwide, only 28% of sepsis survivors who transitioned to HHC received this timely visit protocol. The opportunity exists for many more sepsis survivors to benefit from timely home care and outpatient services. This protocol aims to achieve this goal. METHODS: Guided by the Consolidated Framework for Implementation Research, this Type 1 hybrid pragmatic study will test the effectiveness of the Improving Transitions and Outcomes of Sepsis Survivors (I-TRANSFER) intervention compared to usual care on 30-day rehospitalization and emergency department use among sepsis survivors receiving HHC. The study design includes a baseline period with no intervention, a six-month start-up period followed by a one-year intervention period in partnership with five dyads of acute and HHC sites. In addition to the usual care/control periods from the dyad sites, additional survivors from national data will serve as control observations for comparison, weighted to produce covariate balance. The hypotheses will be tested using generalized mixed models with covariates guided by the Andersen Behavioral Model of Health Services. We will produce insights and generalizable knowledge regarding the context, processes, strategies, and determinants of I-TRANSFER implementation. DISCUSSION: As the largest HHC study of its kind and the first to transform this novel evidence through implementation science, this study has the potential to produce new knowledge about the impact of timely attention in HHC to alleviate symptoms and support sepsis survivor's recovery at home. If effective, the impact of this intervention could be widespread, improving the quality of life and health outcomes for a growing, vulnerable population of sepsis survivors. A national advisory group will assist with widespread results dissemination.
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Servicios de Atención de Salud a Domicilio , Sepsis , Atención Ambulatoria , Humanos , Calidad de Vida , Sepsis/terapia , SobrevivientesRESUMEN
OBJECTIVES: To identify predictors of change in older adults' satisfaction with outdoor activities ratings over the first two years of enrollment in long-term services and supports (LTSS). METHODS: Self-rated satisfaction with outdoor activities (not at all satisfied to extremely satisfied) was the primary outcome of this secondary data analysis. Mixed-effects linear regression modeling with a backward elimination process was used for analyses. RESULTS: In the final model (N = 453) older LTSS recipients at baseline had lower ratings of satisfaction with outdoor activities over time, whereas younger recipients had higher ratings over time. Those who moved into a residential facility at baseline had an increase in outdoor activity satisfaction ratings over time compared to older adults who received home and community-based services that had a decrease. DISCUSSION: LTSS clinicians can use these findings to support older adults with decision-making around enrollment into LTSS, address preferences, and develop person-centered care interventions for outdoor activity.
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Instituciones de Vida Asistida , Servicios de Atención de Salud a Domicilio , Anciano , Humanos , Cuidados a Largo Plazo , Casas de Salud , Satisfacción PersonalRESUMEN
While sleep disturbances are common in people living with cognitive impairment, little is known about the influence of evening light exposure on their sleep. The purpose of this study was to examine the relationship between evening light exposure in natural living environment and daytime sleepiness in community residing people living with cognitive impairment. A secondary data analysis was conducted using the baseline data of the Healthy Patterns Clinical Trial. Actiwatch Spectrum Plus was used to collect information on the average white light intensity of 4 hours before sleep for three consecutive days. Multivariate regression analyses were used. Among 173 participants, the average light intensity during evening was 80.25 ± 123.04 lux. After controlling for covariates, greater intensity of light exposure during evening was related to excessive daytime sleepiness (ß = 0.211, p = .004). The results of our study suggest exposure to light during evening may disturb sleep and subsequently influence daytime sleepiness the following day.
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Disfunción Cognitiva , Trastornos de Somnolencia Excesiva , Trastornos del Sueño-Vigilia , Humanos , SueñoRESUMEN
Objectives: Racial aggression against Asians and the implementation of state-wide stay-at-home orders during the COVID-19 pandemic may have negatively impacted mental health in Asian international graduate students in the United States, yet these relationships are unknown. Therefore, this study was conducted to investigate these relationships. Participants: Data were collected from 177 participants from four universities. Methods: On-line survey was used to assess perceived racial discrimination related to the COVID-19, daily racial discrimination during the pandemic, home boundness and loneliness, and depression and anxiety. Results: Daily racial discrimination was associated with an increased risk for depression. Home boundness was related to fewer depression symptoms (B = -0.728) and fewer anxiety symptoms (B = -0.558). Higher symptoms of loneliness (B = 0.377) were related to more depression symptoms. More loneliness (B = 0.257) was related to more anxiety symptoms. Conclusions: The findings can help university stakeholders to create a guideline for the development and implementation of resource programs for Asian international graduates.
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OBJECTIVES: Social isolation among older adults with cognitive impairment is understudied. The purpose of this study is to examine the relationship between social isolation and anxiety in people with cognitive impairment in the United States. METHODS/DESIGN: Secondary data analyses were conducted using the National Social Life, Health, and Aging Project (NSHAP) Wave 2 (2010-2011) dataset which includes a nationally representative sample of American older adults living at home. A total of 1343 people who had probable cognitive impairment measured by a Montreal Cognitive Assessment (MoCA) score of 22 or less were selected. Anxiety was measured using the anxiety measure of Hospital Anxiety and Depression Scale (HADS-A) and social isolation was measured using Perceived Social Isolation Scale. A weighted multivariable linear regression analysis and weighted F tests were used to examine the relationship between social isolation and anxiety. RESULTS: We observed that greater social isolation was related to increased anxiety in people with cognitive impairment (coefficients = 0.7242, t = 2.51, p = 0.015), adjusting for severity of cognitive impairment, race, pain, depression, activities of daily living, and instrumental activities of daily living. Weighted F tests showed that persons with clinically significant anxiety (HADS-A ≥ 8) had higher levels of loneliness, including feeling a lack of companionship, feeling left out, and greater social isolation. CONCLUSIONS: The results of our study suggest that people with cognitive impairment can feel social isolation and it may contribute to their anxiety. Health care professionals, family, and friends of people with cognitive impairment should pay greater attention to social isolation of their loved ones.
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Actividades Cotidianas , Disfunción Cognitiva , Anciano , Ansiedad/epidemiología , Disfunción Cognitiva/epidemiología , Disfunción Cognitiva/psicología , Humanos , Soledad/psicología , Aislamiento Social/psicología , Estados Unidos/epidemiologíaRESUMEN
Engaging in leisure activities that are cognitively simulating and enjoyable may be protective against cognitive decline in older adults; yet, few studies have examined this topic. We used two waves of data from the Population Study of Chinese Elderly and ran mixed-effects regression models to examine the relationship between baseline art activity attendance (including attending museum, musical arts, or both) and change in cognitive function (global, episodic memory, working memory, and executive function) among 2,703 older U.S. Chinese adults. We found that compared with older adults who did not attend any art activities, those who reported attending both art activities experienced a slower rate of change in episodic memory (estimate = -0.07; SE = 0.03; p = .01) and executive function (estimate = -0.06; SE = .03; p = .04). Our study findings point to the importance of attending art-based culture events among U.S. Chinese older adults.
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Disfunción Cognitiva , Memoria Episódica , Anciano , China , Cognición , Disfunción Cognitiva/psicología , Humanos , Vida IndependienteRESUMEN
Recruitment for dementia research is challenging and costly. Using Ajzen's Theory of Planned Behavior we explored attitudes, perceived norms, and perceived behavioral control of persons living with dementia (PLWD) and their caregivers who participated in one clinical trial to better understand factors that influence dyads' decisions to enroll. We conducted semi-structured telephone interviews with 12 PLWD and 9 caregivers and utilized directed content analysis. Categories connected with positive attitudes about study enrollment were personal desires of wanting to learn and in-person meetings with knowledgeable staff. Additionally, participants said the money always helps in terms of the financial incentive. Participants reported enrolling to support another person (perceived norm). Study requirements were thought to be easy (perceived behavioral control). Participants highlighted the importance of flexible scheduling and study tasks being completed at their home. Findings can inform future recruitment efforts and should be investigated as effective recruitment methods in other clinical trials.
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Cuidadores , Demencia , Demencia/terapia , Humanos , TeléfonoRESUMEN
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.