Living With Dementia: Care Partner Needs and Outcomes of a Dementia Support Program in Primary Care
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ABSTRACT:
SUBMITTER: Schara H
PROVIDER: S-EPMC9583199 | biostudies-literature | 2022 Jan
REPOSITORIES: biostudies-literature
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Project description:Clinical genome and exome sequencing can diagnose pediatric patients with complex conditions that often require follow-up care with multiple specialties. The American Academy of Pediatrics emphasizes the role of the medical home and the primary care pediatrician in coordinating care for patients who need multidisciplinary support. In addition, the electronic health record (EHR) with embedded clinical decision support is recognized as an important component in providing care in this setting. We interviewed 6 clinicians to assess their experience caring for patients with complex and rare genetic findings and hear their opinions about how the EHR currently supports this role. Using these results, we designed a candidate EHR clinical decision support application mock-up and conducted formative exploratory user testing with 26 pediatric primary care providers to capture opinions on its utility in practice with respect to a specific clinical scenario. Our results indicate agreement that the functionality represented by the mock-up would effectively assist with care and warrants further development.
| S-EPMC7651914 | biostudies-literature
Project description:Background/objectivesCare-partner support affects outcomes among assisted living (AL) residents. Yet, little is known about care-partner support and its effects on hospitalization during post-acute care transitions. This study examined the variation in care-partner support and its impact on hospitalizations among AL residents receiving Medicare home health (HH) services.DesignAnalysis of national data from the Outcome and Assessment Information Set, Medicare claims, Area Health Resources File, and the Social Deprivation Index File.SettingAL facilities and Medicare HH agencies in the United States.Participants741,926 Medicare HH admissions of AL residents in 2017.MeasurementsCare-partner support during the HH admission was measured based on the type and frequency of assistance from AL staff in seven domains (i.e., activities of daily living (ADL), instrumental ADLs, medication administration, treatment, medical equipment, home safety, and transportation). Care-partner support in each domain was measured as "assistance not needed" (reference group), "Care-partner currently provides assistance," "care-partner need additional training/support to provide assistance" (i.e., inadequate care-partner support), and "care-partner unavailable/unlikely to provide assistance" (i.e., unavailable care-partner support). Outcome was time-to-hospitalization during the HH admission.ResultsAmong the 741,926 Medicare HH admissions of AL residents, inadequate care-partner support was identified for all seven domains that ranged from 13.1% (for transportation) to 49.8% (for treatment), and care-partner support was unavailable from 0.9% (for transportation) to 11.0% (for treatment). In Cox proportional hazard models adjusted for patient covariates and geography, compared with "assistance not needed", having inadequate and unavailable care-partner support was related to increased risk of hospitalization by 8.9% (treatment (hazard ratio (HR) =1.089, P < .001)) to 41.3% (medication administration (HR =1.413, P < .001)).ConclusionFor AL residents receiving HH services, having less care-partner support was related to increased risk of hospitalization, particularly regarding medication administration, medical equipment, and transportation/advocacy.
| S-EPMC8127345 | biostudies-literature
Project description:IntroductionNearly half of all persons living with dementia (PLwD) will visit the emergency department (ED) in any given year and ED visits by PLwD are associated with short-term adverse outcomes. Care partner engagement is critical in the care of PLwD, but little is known about their patterns of communication with ED clinicians.MethodsWe performed a retrospective electronic health record (EHR) review of a random sampling of patients ≥ 65 years with a historical diagnosis code of dementia who visited an ED within a large regional health network between 1/2014 and 1/2022. ED notes within the EHRs were coded for documentation of care partner communication and presence of a care partner in the ED. Logistic regression was used to identify patient characteristics associated with the composite outcome of either care partner communication or care partner presence in the ED.ResultsA total of 460 patients were included. The median age was 83.0 years, 59.3% were female, 11.3% were Black, and 7.6% Hispanic. A care partner was documented in the ED for 22.4% of the visits and care partner communication documented for 43.9% of visits. 54.8% of patients had no documentation of care partner communication nor evidence of a care partner at the bedside. In multivariate logistic regression, increasing age (OR, (95% CI): 1.06 (1.04-1.09)), altered mental status (OR: 2.26 (1.01-5.05)), and weakness (OR: 3.38 (1.49-7.65)) significantly increased the probability of having care partner communication documented or a care partner at the bedside.ConclusionMore than half of PLwD in our sample did not have clinician documentation of communication with a care partner or a care partner in the ED. Further studies are needed to use these insights to improve communication with care partners of PLwD in the ED.
| S-EPMC10698392 | biostudies-literature
Project description: Not available
| S-EPMC11296296 | biostudies-literature
Project description:ObjectivesDescribe 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.MethodA 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.ResultsNearly 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.ConclusionsCPs 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.
| S-EPMC9508284 | biostudies-literature
Project description:Japan is known for its long life expectancy and rapidly aging society that there are various demands of older adults need to be fulfilled with, and one of them is long-term care needs. Therefore, Japan implemented the Long-Term Care Insurance in year 2000 for citizens who are above 65-year old and citizens who are above 40-year old in needs of long-term care services. This study was undertaken to longitudinally examine the influence of dementia and living alone on care needs increases among older long-term care insurance service users in Japan.Long-term care insurance claims data were used to identify enrollees who applied for long-term care services between October 2010 and September 2011, and subjects were tracked until March 2015. A Kaplan-Meier survival analysis was conducted to examine increases in care needs over time in months. Cox regression models were used to examine the effects of dementia and living alone on care needs increases.The cumulative survival rates before care needs increased over the 4.5-year observation period were 17.6% in the dementia group and 31.9% in the non-dementia group. After adjusting for age, sex, care needs level, and status of living alone, the risk of care needs increases was found to be 1.5 times higher in the dementia group. Living alone was not a significant risk factor of care needs increases, but people with dementia who lived alone had a higher risk of care needs increases than those without dementia.Dementia, older age, the female sex, and lower care needs levels were associated with a higher risk of care needs increases over the study period. Among these variables, dementia had the strongest impact on care needs increases, especially in persons who lived alone.
| S-EPMC5559793 | biostudies-other
Project description:BackgroundQuantitative evaluations of the effectiveness of intensive primary care (IPC) programs for high-needs patients have yielded mixed results for improving healthcare utilization, cost, and mortality. However, IPC programs may provide other value.ObjectiveTo understand the perspectives of high-needs patients and primary care facility leaders on the effects of a Veterans Affairs (VA) IPC program on patients.DesignA total of 66 semi-structured telephone interviews with high-needs VA patients and primary care facility leaders were conducted as part of the IPC program evaluation.ParticipantsHigh-needs patients (n = 51) and primary care facility leaders (n = 15) at 5 VA pilot sites.ApproachWe used content analysis to examine interview transcripts for both a priori and emergent themes about perceived IPC program effects.Key resultsPatients enrolled in VA IPCs reported improvements in their experience of VA care (e.g., patient-provider relationship, access to their team). Both patients and leaders reported improvements in patient motivation to engage with self-care and with their IPC team, and behaviors, especially diet, exercise, and medication management. Patients also perceived improvements in health and described receiving assistance with social needs. Despite this, patients and leaders also outlined patient health characteristics and contextual factors (e.g., chronic health conditions, housing insecurity) that may have limited the effectiveness of the program on healthcare cost and utilization.ConclusionsPatients and primary care facility leaders report benefits for high-needs patients from IPC interventions that translated into perceived improvements in healthcare, health behaviors, and physical and mental health status. Most program evaluations focus on cost and utilization, which may be less amenable to change given this cohort's numerous comorbid health conditions and complex social circumstances. Future IPC program evaluations should additionally examine IPC's effects on quality of care, patient satisfaction, quality of life, and patient health behaviors other than utilization (e.g., engagement, self-efficacy).
| S-EPMC8606366 | biostudies-literature
Project description:Background and objectivesCare partners of persons living with dementia perform complex legal planning tasks. The purpose of this study was to survey care partners in the United States to understand their confidence and experience in performing legal planning tasks.Research design and methodsThis study used a parallel mixed-methods research design. We administered a web-based survey to 318 adults who self-identified as care partners of persons living with dementia. The survey contained Likert scale questions and open-ended questions about legal planning tasks. Multivariate linear regression was used to analyze quantitative data and inductive thematic analysis was used to analyze qualitative data.ResultsCare partners were, on average, 53 years of age and 78% female. The three topics in which participants were least confident were: protecting oneself legally as a care partner; options when legal documents are not in place and a family member is not legally competent; and circumstances when legal documents should be updated or renewed. We observed significant differences in legal planning confidence between newer and more experienced care partners (p < .001); lower- and higher-income care partners (p = .01); and adult child versus spousal care partners (p < .001). Thematic analysis revealed that legal planning challenges include initiating a conversation with the person living with dementia, understanding and using legal materials, and accessing materials that accommodate individual differences.Discussion and implicationsIt is vital to develop legal planning interventions that are tailored to specific subgroups of care partners, and to maximize the clarity, comprehensiveness, and accessibility of available legal planning education.
| S-EPMC11190962 | biostudies-literature
Project description:BackgroundRecent studies have demonstrated the efficiency of collaborative dementia care, which aims to improve post-diagnostic support. However, tasks carried out of such models are currently unknown, hindering its implementation.ObjectiveTo describe tasks of a collaborative model of dementia care, analyze the association between specific task subgroups and number of tasks with patients' and caregivers' characteristics and the impact of specific tasks on health-related quality of life (HRQoL).MethodsThe analysis was based on 183 persons with dementia (PwD) who received dementia care management conducted by dementia-specific qualified nurses. A standardized, computer-assisted assessment was used to identify patients' and caregivers' unmet needs. Tasks carried out to address unmet needs were documented, categorized, and descriptively analyzed. We used multivariate regression models to identify socio-demographic and clinical factors associated with a specific subgroup of tasks or a higher number of tasks.ResultsOn average, 20.5 tasks were carried out per dyad (PwD and caregiver). 41% of tasks were categorized to cooperation with other healthcare providers, 39% to nursing care, and 19% to social support. Lower HRQoL and higher age, cognitive impairment, deficits in daily living activities, and depressive symptoms were significantly associated with a higher number of tasks. A higher number of cooperation tasks were associated with a higher gain in HRQoL.ConclusionPatients' characteristics and HRQoL significantly determine the intensity of collaborative care interventions. Variability of the intensity should be considered in developing future studies and in the implementation into routine care.Clinicaltrialsgov Identifier: NCT01401582.
| S-EPMC9277686 | biostudies-literature
Project description:ObjectiveThe innovation fund project DemStepCare aimed to optimize multi-professional care through case management, risk stratification, and crisis outpatient clinic. Here, the evaluation results from the perspective of the general practitioners are presented.MethodsA quantitative survey was carried out at three time points regarding acceptance, benefit assessment and sensitivity to dementia of the general practitioners. In addition, qualitative interviews were conducted.ResultsSatisfaction with the overall project was high. Added value and relief factors were perceived and more effective and stable dementia care was achieved through collaboration with case management. Physicians reported increased subjective competence in diagnostics and disease management.ConclusionsThe results confirm the benefit and effectiveness of DemStepCare from general practitioner's perspective.
| S-EPMC11392568 | biostudies-literature