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OBJECTIVES: People with dementia have several unmet needs during the syndrome progression. More unmet needs are related to hospitalizations, injuries, and death. Little is known about the care needs for people living with dementia in Brazil. This study aims to translate and adapt the Johns Hopkins Dementia Care Needs Assessment (JHDCNA 2.0), a tool design to identify the dementia-related needs of people with dementia and their caregivers, to Brazilian Portuguese, and to verify psychometric properties. METHOD: JHDCNA 2.0 underwent a translation, back-translation, and cultural adaptation. Preliminary psychometric testing of the Brazilian version (JHDCNA-Br 2.0) included pilot testing and experts' assessment, analyses of reliability, evidence based on test content and relations to other variables. We conducted 140 in-home interviews to assess several sociodemographic and health aspects and to be able to complete the JHDCNA-Br 2.0. RESULTS: The JHDCNA-Br 2.0 is reliable and has evidence based on test content and on relations to other variables for people living with dementia and caregivers. Preliminary results suggest high prevalence of unmet needs. CONCLUSION: JHDCNA-Br 2.0 is a reliable and valid tool. The availability of this tool brings new opportunities to the study of dementia care, taking into consideration cultural aspects and may help inform future approaches to dementia care delivery to support persons and families affected by these conditions.
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This perspective outlines the Artificial Intelligence and Technology Collaboratories (AITC) at Johns Hopkins University, University of Pennsylvania, and University of Massachusetts, highlighting their roles in developing AI-based technologies for older adult care, particularly targeting Alzheimer's disease (AD). These National Institute on Aging (NIA) centers foster collaboration among clinicians, gerontologists, ethicists, business professionals, and engineers to create AI solutions. Key activities include identifying technology needs, stakeholder engagement, training, mentoring, data integration, and navigating ethical challenges. The objective is to apply these innovations effectively in real-world scenarios, including in rural settings. In addition, the AITC focuses on developing best practices for AI application in the care of older adults, facilitating pilot studies, and addressing ethical concerns related to technology development for older adults with cognitive impairment, with the ultimate aim of improving the lives of older adults and their caregivers. HIGHLIGHTS: Addressing the complex needs of older adults with Alzheimer's disease (AD) requires a comprehensive approach, integrating medical and social support. Current gaps in training, techniques, tools, and expertise hinder uniform access across communities and health care settings. Artificial intelligence (AI) and digital technologies hold promise in transforming care for this demographic. Yet, transitioning these innovations from concept to marketable products presents significant challenges, often stalling promising advancements in the developmental phase. The Artificial Intelligence and Technology Collaboratories (AITC) program, funded by the National Institute on Aging (NIA), presents a viable model. These Collaboratories foster the development and implementation of AI methods and technologies through projects aimed at improving care for older Americans, particularly those with AD, and promote the sharing of best practices in AI and technology integration. Why Does This Matter? The National Institute on Aging (NIA) Artificial Intelligence and Technology Collaboratories (AITC) program's mission is to accelerate the adoption of artificial intelligence (AI) and new technologies for the betterment of older adults, especially those with dementia. By bridging scientific and technological expertise, fostering clinical and industry partnerships, and enhancing the sharing of best practices, this program can significantly improve the health and quality of life for older adults with Alzheimer's disease (AD).
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Doença de Alzheimer , Isotiocianatos , Estados Unidos , Humanos , Idoso , Doença de Alzheimer/terapia , Inteligência Artificial , Gerociência , Qualidade de Vida , TecnologiaRESUMO
BACKGROUND: Assisted-living (AL) settings are an important residential care option for old and disabled Americans, but there are no national data characterizing medication use in AL. OBJECTIVE: To investigate medication costs and use of older adults living in the AL settings compared to those in the community, independent living, and nursing home settings. DESIGN: 2015 National Health and Aging Trends Study; nationally representative cross-sectional study. PATICIPANTS: Respondents ≥ 65 years with Medicare Part D prescription drug coverage (n = 5980, representing 32.34 million older adults). MEASURES: Total Part D medication costs; number of 30-day prescription fills; binary indicators for overall polypharmacy (≥ 5 and ≥ 10 concurrent medications), prescription fills of opioid and psychotropic medications including antipsychotics, benzodiazepines, gabapentinoids, antidepressants, and central nervous system-active (CNS-active) polypharmacy. RESULTS: Adjusting for demographics, the annual medication costs among AL residents, at $3890, were twice as high as those of their community-dwelling counterparts ($1932; p < .01). All medication outcomes except opioids were higher for older adults in AL compared to community settings. While the adjusted number of 30-day prescription fills among AL residents was slightly lower than that of nursing home residents (89.5 vs. 106.2; p < .05), AL residents experienced equivalent rates of overall polypharmacy ≥ 10 medications (30.2% vs. 23.5%), antipsychotics (30.8% vs. 27.8%), benzodiazepines (30.7% vs. 32.6%), gabapentinoids (21.2% vs. 16.1%), and CNS-active polypharmacy (26.0% vs. 36.9%; p > .05 for all). Patterns of use across settings were consistent when limited to older adults with dementia. CONCLUSIONS: Older Americans in AL experience a prescription medication burden similar to those in nursing homes. AL settings have an important opportunity to ensure their medication-related clinical services and supports match the needs of their residents.
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Antipsicóticos , Medicamentos sob Prescrição , Humanos , Idoso , Estados Unidos , Estudos Transversais , Medicare , Casas de Saúde , Psicotrópicos , Antipsicóticos/uso terapêutico , Polimedicação , Medicamentos sob Prescrição/uso terapêutico , BenzodiazepinasRESUMO
OBJECTIVES: Describe the prevalence and types of unmet needs among community-dwelling dementia care partners (CPs) and determine associations between unmet needs with protective factors, risk factors and outcomes. METHOD: A cross-sectional analysis of 638 racially and cognitively diverse community-dwelling persons living with dementia (PLWD) and their CPs participating in a comprehensive in-home assessment of dementia-related needs. Unmet CP needs (19 items, 6 domains) were rated by a clinician using the Johns Hopkins Dementia Care Needs Assessment (JHDCNA). Multivariate linear regression models were used to examine associations between total percent unmet CP needs with demographic, protective and risk factors. RESULTS: Nearly all CPs had at least one unmet need (99.53%), with a mean of 5.7 (±2.6). The most common domains with ≥1 unmet need were memory disorder education, care skills and knowledge of resources (98%), legal issues/concerns (73.8%), CP mental health (44.6%) and access to informal support (42.7%). Adjusted multivariate models suggest the strongest consistent predictive factors relate to informal emotional support, CP physical health, use or difficulty getting formal services/supports (both for CPs and PLWD), and CP time spent with PLWD. Greater levels of unmet needs were associated with worse PLWD outcomes and CP outcomes, after adjusting for demographics. CONCLUSIONS: CPs have high rates of diverse, but modifiable unmet needs. Data suggest optimal approaches to dementia care should take a family-centered home-based approach that includes routine CP needs assessment, offer targeted interventions that include both traditional medical supports as well as strategies to increase and leverage informal social networks, and ones that can bridge and coordinate medical with non-medical supports. These findings can be used to inform new approaches to support CPs, improve PLWD and CP outcomes, and target groups most at risk for inequities.
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Demência , Vida Independente , Humanos , Estudos Transversais , Cuidadores/psicologia , Fatores de Proteção , Necessidades e Demandas de Serviços de Saúde , Demência/epidemiologia , Demência/terapia , Demência/psicologiaRESUMO
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
Precision medicine, also known as personalized medicine, is concerned with finding the right treatment for the right patient at the right time. It is a way of thinking focused on parsing heterogeneity ultimately down to the level of the individual. Its main mission is to identify characteristics of heterogeneous clinical conditions so as to target tailored therapies to individuals. Precision Medicine however is not an agnostic collection of all manner of clinical, genetic and other biologic data in select cohorts. This is an important point. Simply collecting as much information as possible on individuals without applying this way of thinking should not be considered Precision Medicine.
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Doença de Alzheimer , Medicina de Precisão , Doença de Alzheimer/diagnóstico , Doença de Alzheimer/tratamento farmacológico , Doença de Alzheimer/genética , HumanosAssuntos
Demência , Humanos , Demência/epidemiologia , Demência/prevenção & controle , Demência/terapiaRESUMO
Aims: The overarching goal of this project was to establish a group comprised of a variety of TBI stakeholders for the purpose of: (1) determining facilitators and barriers in management of neuropsychiatric symptoms after TBI; (2) identifying strategies for maintaining a TBI PCOR network; (3) enumerating research topics related to TBI neuropsychiatry; and (4) highlighting policy changes related to TBI neuropsychiatry.Methods: Twenty-nine TBI stakeholders participated in focus group discussions. Qualitative analyses were conducted both manually and using Dedoose software.Results: Participant-identified barriers included stigma associated with experiencing neuropsychiatric symptoms and poor insurance coverage. Facilitators included treatment focused on education of neuropsychiatric symptoms after TBI and having a comprehensive caregiver plan. Best strategies for maintaining TBI PCOR network included having a well-defined project, continued regular meetings, and on-going education of network members. Pertinent research topics included TBI and aging, factors influencing outcomes after TBI, substance use disorders related to TBI, and effectiveness of telemental health services. Needed policy changes included making TBI neuropsychiatry education accessible to stakeholders and improving accessibility of TBI neuropsychiatric care.Conclusion: TBI stakeholders identified several facilitators of care for neuropsychiatric symptoms after TBI and suggested research topics and best practices for conducting PCOR in this area.
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Neuropsiquiatria , Transtornos Relacionados ao Uso de Substâncias , Cuidadores , Humanos , Avaliação de Resultados da Assistência ao Paciente , Estigma SocialRESUMO
OBJECTIVE: Understanding which characteristics of persons with dementia (PWD) and their caregivers are associated with unmet needs can inform strategies to address those needs. Our purpose was to determine the percentage of PWD having unmet needs and significant correlates of unmet needs in PWD. DESIGN: Cross-sectional data were analyzed using bivariate and hierarchical multiple linear regression analyses. SETTING: Participants lived in the greater Baltimore, Maryland and Washington DC suburban area. PARTICIPANTS: A sample of 646 community-living PWD and their informal caregivers participated in an in-home assessment of dementia-related needs. MEASUREMENTS: Unmet needs were identified using the Johns Hopkins Dementia Care Needs Assessment. Correlates of unmet needs were determined using demographic, socioeconomic, clinical, functional and quality of life characteristics of the PWD and their caregivers. RESULTS: PWD had a mean of 10.6 (±4.8) unmet needs out of 43 items (24.8%). Unmet needs were most common in Home/Personal Safety (97.4%), General Health Care (83.1%), and Daily Activities (73.2%) domains. Higher unmet needs were significantly related to non-white race, lower education, higher cognitive function, more neuropsychiatric symptoms, lower quality of life in PWD, and having caregivers with lower education or who spent fewer hours/week with the PWD. CONCLUSIONS: Unmet needs are common in community-living PWD, and most are non-medical. Home-based dementia care can identify and address PWD's unmet needs by focusing on care recipients and caregivers to enable PWD to remain safely at home.
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Cuidadores/psicologia , Demência/enfermagem , Necessidades e Demandas de Serviços de Saúde , Idoso , Idoso de 80 Anos ou mais , Baltimore , Estudos Transversais , Demência/psicologia , Feminino , Avaliação Geriátrica , Humanos , Vida Independente , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Qualidade de VidaRESUMO
BACKGROUND: Many older adults living with dementia have not been formally diagnosed. Even when clinicians document the diagnosis, patients and families may be unaware of the diagnosis. Knowledge of how individual characteristics affect detection and awareness of dementia is limited. OBJECTIVE: To identify characteristics associated with dementia diagnosis and awareness of diagnosis. DESIGN: Cross-sectional observational study. PARTICIPANTS: Five hundred eighty-five adults aged ≥ 65 in the National Health and Aging Trends Study who met assessment-based study criteria for probable dementia in 2011 and had 3 years of continuous, fee-for-service Medicare claims prior to 2011. MAIN MEASURES: Using multivariable logistic regression, we compared participants with undiagnosed versus diagnosed dementia (based on Medicare claims) on demographic, social/behavioral, functional, medical, and healthcare utilization characteristics. Among those diagnosed, we compared characteristics of participants unaware versus aware of the diagnosis (based on self or proxy report). KEY RESULTS: Among older adults with probable dementia, 58.7% were either undiagnosed (39.5%) or unaware of the diagnosis (19.2%). In adjusted analyses, individuals who were Hispanic (OR 2.48, 95% CI 1.19, 5.14), had less than high school education (OR 0.54 for at least high school education, 95% CI 0.32, 0.91), attended medical visits alone (OR 1.98, 95% CI 1.11, 3.51), or had fewer functional impairments (OR 0.79 for each impairment, 95% CI 0.69, 0.90) were more likely to be undiagnosed. Similarly, among those diagnosed, having less education (OR 0.42), attending medical visits alone (OR 1.97), and fewer functional impairments (OR 0.72) were associated with unawareness of diagnosis (all ps < 0.05). CONCLUSIONS: The majority of older adults with dementia are either undiagnosed or unaware of the diagnosis, suggesting shortcomings in detection and communication of dementia. Individuals who may benefit from targeted screening include racial/ethnic minorities and persons who have lower educational attainment, any functional impairment, or attend medical visits alone.
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Conscientização , Comunicação , Demência/diagnóstico , Demência/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Demência/epidemiologia , Feminino , Humanos , Masculino , Estudos Retrospectivos , Estados Unidos/epidemiologiaRESUMO
INTRODUCTION: A national consensus panel was convened to develop recommendations on future directions for home-based dementia care (HBDC). METHODS: The panel summarized advantages and challenges of shifting to HBDC as the nexus of care and developed consensus-based recommendations. RESULTS: The panel developed five core recommendations: (1) HBDC should be considered the nexus of new dementia models, from diagnosis to end of life in dementia; (2) new payment models are needed to support HBDC and reward integration of care; (3) a diverse new workforce that spans the care continuum should be prepared urgently; (4) new technologies to promote communication, monitoring/safety, and symptoms management must be tested, integrated, and deployed; and (5) targeted dissemination efforts for HBDC must be employed. DISCUSSION: HBDC represents a promising paradigm shift to improve care for those living with dementia and their family caregivers: these recommendations provide a framework to chart a course forward for HBDC.
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Consenso , Efeitos Psicossociais da Doença , Demência/enfermagem , Demência/psicologia , Serviços de Assistência Domiciliar , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Análise Custo-Benefício/métodos , Análise Custo-Benefício/estatística & dados numéricos , Demência/diagnóstico , HumanosAssuntos
Demência/prevenção & controle , Política de Saúde , Estilo de Vida Saudável , Poluição do Ar/efeitos adversos , Poluição do Ar/estatística & dados numéricos , Alcoolismo/epidemiologia , Traumatismos Craniocerebrais/epidemiologia , Demência/epidemiologia , Demência/terapia , Disparidades em Assistência à Saúde , Humanos , Fatores de RiscoRESUMO
OBJECTIVE: To provide a critical review of a multipronged recruitment approach used to identify, recruit, and enroll a diverse community-based sample of persons with memory disorders into an 18-month randomized, controlled dementia care coordination trial. METHODS: Descriptive analysis of a recruitment approach comprised five strategies: community liaison ("gatekeepers") method, letters sent from trusted community organizations, display and distribution of study materials in the community, research registries, and general community outreach and engagement activities. Participants were 55 community organizations and 63 staff of community organizations in Baltimore, Maryland. Participant referral sources, eligibility, enrollment status, demographics, and loss to follow-up were tracked in a relational access database. RESULTS: In total, 1,275 referrals were received and 303 socioeconomically, cognitively, and racially diverse community-dwelling persons with cognitive disorders were enrolled. Most referrals came from letters sent from community organizations directly to clients on the study's behalf (39%) and referrals from community liaison organizations (29%). African American/black enrollees were most likely to come from community liaison organizations. CONCLUSION: A multipronged, adaptive approach led to the successful recruitment of diverse community-residing elders with memory impairment for an intervention trial. Key factors for success included using a range of evidence-supported outreach strategies, forming key strategic community partnerships, seeking regular stakeholder input through all research phases, and obtaining "buy-in" from community stakeholders by aligning study objectives with perceived unmet community needs.
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Transtornos da Memória/epidemiologia , Seleção de Pacientes , Encaminhamento e Consulta/estatística & dados numéricos , Sistema de Registros , Projetos de Pesquisa , Idoso , Idoso de 80 Anos ou mais , Baltimore , Relações Comunidade-Instituição , Etnicidade , Feminino , Humanos , MasculinoRESUMO
OBJECTIVE: To assess whether MIND at Home, a community-based, multicomponent, care coordination intervention, reduces unmet caregiving needs and burden in informal caregivers of persons with memory disorders. METHODS: An 18-month randomized controlled trial of 289 community-living care recipient (CR)-caregiver (informal caregivers, i.e., unpaid individuals who regularly assisted the CR) dyads from 28 postal code areas of Baltimore, Maryland was conducted. All dyads and the CR's primary care physician received the written needs assessment results and intervention recommendations. Intervention dyads then received an 18-month care coordination intervention delivered by nonclinical community workers to address unmet care needs through individualized care planning, referral and linkage to dementia services, provision of caregiver dementia education and skill-building strategies, and care progress monitoring by an interdisciplinary team. Primary outcome was total percent of unmet caregiver needs at 18 months. Secondary outcomes included objective and subjective caregiver burden measures, quality of life (QOL), and depression. RESULTS: Total percent of unmet caregiver needs declined in both groups from baseline to 18 months, with no statistically significant between-group difference. No significant group differences occurred in most caregiver burden measures, depression, or QOL. There was a potentially clinically relevant reduction in self-reported number of hours caregivers spent with the CR for MIND participants compared with control subjects. CONCLUSION: No statistically significant impacts on caregiver outcomes were found after multiple comparison adjustments. However, MIND at Home appeared to have had a modest and clinically meaningful impact on informal caregiver time spent with CRs.
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Cuidadores/psicologia , Efeitos Psicossociais da Doença , Aconselhamento/organização & administração , Demência/enfermagem , Assistência Domiciliar/organização & administração , Idoso , Depressão , Feminino , Humanos , Masculino , Avaliação das Necessidades , Qualidade de Vida , Características de ResidênciaRESUMO
OBJECTIVES: To assess whether a dementia care coordination intervention delays time to transition from home and reduces unmet needs in elders with memory disorders. DESIGN: 18-month randomized controlled trial of 303 community-living elders. SETTING: 28 postal code areas of Baltimore, MD. PARTICIPANTS: Age 70+ years, with a cognitive disorder, community-living, English-speaking, and having a study partner available. INTERVENTION: 18-month care coordination intervention to systematically identify and address dementia-related care needs through individualized care planning; referral and linkage to services; provision of dementia education and skill-building strategies; and care monitoring by an interdisciplinary team. MEASUREMENTS: Primary outcomes were time to transfer from home and total percent of unmet care needs at 18 months. RESULTS: Intervention participants had a significant delay in time to all-cause transition from home and the adjusted hazard of leaving the home was decreased by 37% (Hazard ratio: 0.63, 95% Confidence Interval: 0.42-0.94) compared with control participants. Although there was no significant group difference in reduction of total percent of unmet needs from baseline to 18 months, the intervention group had significant reductions in the proportion of unmet needs in safety and legal/advance care domains relative to controls. Intervention participants had a significant improvement in self-reported quality of life (QOL) relative to control participants. No group differences were found in proxy-rated QOL, neuropsychiatric symptoms, or depression. CONCLUSIONS: A home-based dementia care coordination intervention delivered by non-clinical community workers trained and overseen by geriatric clinicians led to delays in transition from home, reduced unmet needs, and improved self-reported QOL.
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Demência/terapia , Serviços de Assistência Domiciliar , Hospitalização/estatística & dados numéricos , Vida Independente , Transtornos da Memória/terapia , Casas de Saúde/estatística & dados numéricos , Administração dos Cuidados ao Paciente/métodos , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Assistência de Longa Duração/estatística & dados numéricos , Masculino , Projetos Piloto , Modelos de Riscos Proporcionais , Método Simples-Cego , Fatores de TempoRESUMO
BACKGROUND: This study examines the relationship of unmet dementia-related care needs of community-dwelling persons, and their caregivers (CGs), to measures of caregiver burden. METHODS: Cross-sectional baseline data were analyzed from participants in a dementia care coordination trial of community-residing persons with dementia (PWD) (n = 254) and their caregivers (n = 246). Participants were recruited from Northwest Baltimore, Maryland. The Zarit Burden Inventory (ZBI) was used to measure subjective caregiver burden. Objective burden was measured by estimating the total hours per week spent doing things for the PWD and/or how many hours CGs missed paid work in the prior month due to caregiving responsibilities. The Johns Hopkins Dementia Care Needs Assessment was used to identify unmet dementia-related care needs. Bivariate and multivariate linear regressions examined the relationship of unmet needs, demographic, clinical, or functional characteristics with caregiver burden measures. RESULTS: In adjusted multivariable models, patient neuropsychiatric symptoms and caregiver unmet emotional needs explained 22% of the variance in ZBI scores. In adjusted multivariable models, caregiver need for respite, patient functional dependency, and caregiver unmet specialty medical needs explained 26% of the variance in the hours per week spent caregiving. PWD's level of functional dependency was the sole correlate of missed time at work, explaining 11% of the variance. CONCLUSIONS: Addressing potentially modifiable unmet caregiver needs may reduce subjective and objective caregiver burden.
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Efeitos Psicossociais da Doença , Demência/terapia , Necessidades e Demandas de Serviços de Saúde , Idoso , Idoso de 80 Anos ou mais , Baltimore/epidemiologia , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Estudos Transversais , Feminino , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Humanos , Masculino , Inquéritos e QuestionáriosRESUMO
PURPOSE: Many residents of assisted living (AL) have chronic diseases that are difficult to manage, including congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD) and diabetes mellitus (DM). We estimated the amount and intensity of care delivered by the staff for residents with these conditions. METHODS: We performed a secondary data analysis from the Maryland Assisted Living (MDAL) Study (399 residents, 29 facilities). In-person assessments included measures of cognition, function, depression, and general medical health. Diagnosis of CHF, COPD, and DM, as well as current medications was abstracted from AL medical charts. Measures of care utilization were operationalized at the resident level as: 1) minutes per day of direct care (caregiver activity scale [CAS]), 2) subjective staff ratings of care burden, and 3) assigned AL "level of care" (based on state regulatory criteria). RESULTS: In best fit regression models, CHF and DM were not significant predictors of the evaluated care utilization measures; however, COPD was independently associated with increased minutes per day of direct care - 34% of the variance in the caregiver activity scale was explained by degree of functional dependency, cognitive impairment, age, and presence of COPD. Functional dependency, depressive symptoms, and age explained almost a quarter (23%) of the variance of staff care burden rating. For the AL level of care intensity rating, degree of functional dependency, level of cognition, and age were significant correlates, together explaining about 28% of the variance. CONCLUSION: The presence of COPD was a significant predictor of time per day of direct care. However, CHF and DM were not correlates of care utilization measures. Functional and cognitive impairment was associated with measures of care utilization, reiterating the importance of these characteristics in the utilization and intensity of care consumed by AL residents. Further study of this population could reveal other forms and amounts of care utilization.
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Moradias Assistidas , Serviços de Saúde/estatística & dados numéricos , Pacientes Internados , Idoso , Idoso de 80 Anos ou mais , Doença Crônica , Diabetes Mellitus/terapia , Insuficiência Cardíaca/terapia , Humanos , Maryland , Doença Pulmonar Obstrutiva Crônica/terapiaRESUMO
BACKGROUND: Although national guidelines recommend that everyone with dementia receives personalised post-diagnostic support, few do. Unlike previous interventions that improved personalised outcomes in people with dementia, the NIDUS-Family intervention is fully manualised and deliverable by trained and supervised, non-clinical facilitators. We aimed to investigate the effectiveness of home-based goal setting plus NIDUS-Family in supporting the attainment of personalised goals set by people with dementia and their carers. METHODS: We did a two-arm, single-masked, multi-site, randomised, clinical trial recruiting patient-carer dyads from community settings. We randomly assigned dyads to either home-based goal setting plus NIDUS-Family or goal setting and routine care (control). Randomisation was blocked and stratified by site (2:1; intervention to control), with allocations assigned via a remote web-based system. NIDUS-Family is tailored to goals set by dyads by selecting modules involving behavioural interventions, carer support, psychoeducation, communication and coping skills, enablement, and environmental adaptations. The intervention involved six to eight video-call or telephone sessions (or in person when COVID-19-related restrictions allowed) over 6 months, then telephone follow-ups every 2-3 months for 6 months. The primary outcome was carer-rated goal attainment scaling (GAS) score at 12 months. Analyses were done by intention to treat. This trial is registered with the ISRCTN registry, ISRCTN11425138. FINDINGS: Between April 30, 2020, and May 9, 2021, we assessed 1083 potential dyads for eligibility, 781 (72·1%) of whom were excluded. Of 302 eligible dyads, we randomly assigned 98 (32·4%) to the control group and 204 (67·5%) to the intervention group. The mean age of participants with dementia was 79·9 years (SD 8·2), 169 (56%) were women, and 133 (44%) were men. 247 (82%) dyads completed the primary outcome, which favoured the intervention (mean GAS score at 12 months 58·7 [SD 13·0; n=163] vs 49·0 [14·1; n=84]; adjusted difference in means 10·23 [95% CI 5·75-14·71]; p<0·001). 31 (15·2%) participants in the intervention group and 14 (14·3%) in the control group experienced serious adverse events. INTERPRETATION: To our knowledge, NIDUS-Family is the first readily scalable intervention for people with dementia and their family carers that improves attainment of personalised goals. We therefore recommend that it be implemented in health and care services. FUNDING: UK Alzheimer's Society.
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Demência , Masculino , Humanos , Feminino , Idoso , Idoso de 80 Anos ou mais , Demência/terapia , Objetivos , Cuidadores/psicologia , Terapia ComportamentalRESUMO
BACKGROUND: There is a lack of empirical evidence about the impact of regulations on dementia care quality in assisted living (AL). We examined cohort differences in dementia recognition and treatment indicators between two cohorts of AL residents with dementia, evaluated prior to and following a dementia-related policy modification to more adequately assess memory and behavioral problems. METHODS: Cross-sectional comparison of two AL resident cohorts was done (Cohort 1 [evaluated 2001-2003] and Cohort 2 [evaluated 2004-2006]) from the Maryland Assisted Living studies. Initial in-person evaluations of residents with dementia (n = 248) were performed from a random sample of 28 AL facilities in Maryland (physician examination, clinical characteristics, and staff and family recognition of dementia included). Adequacy of dementia workup and treatment was rated by an expert consensus panel. RESULTS: Staff recognition of dementia was better in Cohort 1 than in Cohort 2 (77% vs. 63%, p = 0.011), with no significant differences in family recognition (86% vs. 85%, p = 0.680), or complete treatment ratings (52% vs. 64%, p = 0.060). In adjusted logistic regression, cognitive impairment and neuropsychiatric symptoms correlated with staff recognition; and cognitive impairment correlated with family recognition. Increased age and cognitive impairment reduced odds of having a complete dementia workup. Odds of having complete dementia treatment was reduced by age and having more depressive symptoms. Cohort was not predictive of dementia recognition or treatment indicators in adjusted models. CONCLUSIONS: We noted few cohort differences in dementia care indicators after accounting for covariates, and concluded that rates of dementia recognition and treatment did not appear to change much organically following the policy modifications.