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Dementia Care Across a Tertiary Care Health System: What Exists Now and What Needs to Change.

ABSTRACT: OBJECTIVES:This study explored the process of care for persons living with dementia (PLWDs) in various care settings across a tertiary care system and considers challenges and opportunities for change. DESIGN:Aimed at quality improvement, qualitative interviews were conducted with key stakeholders in dementia care across geriatric outpatient clinics, medical and psychiatric emergency departments, and the main hospital in 2016. SETTING AND PARTICIPANTS:Forty-nine interactive interviews were conducted with a purposive and snowball sampling of health care professionals (physicians, nurses, social workers, administrators) and families in a large, academic health care system. MEASURES:Qualitative interview guides were developed by the study team to assess the process of care for PLWDs and strengths and challenges to delivering that care. RESULTS:Key themes emerging from the interviews in each care setting are presented. The outpatient setting offers expertise, a multidisciplinary clinic, and research opportunities, but needs to respond to long waitlists, space limitations, and lack of consensus about who owns dementia care. The emergency department offers a low nurse/patient ratio and expertise in acute medical problems, but experiences competing demands and staff turnover; additionally, dementia does not appear on medical records, which can impede care. The hospital offers consultative services and resources, yet the physical space is confined and chaotic; sitters and antipsychotics can be overused, and placement outside of the hospital for PLWDs can be a challenge. CONCLUSIONS AND IMPLICATIONS:Five key recommendations are provided to help health systems proactively prepare for the coming boom of PLWD and their caregivers, including outpatient education, a dementia care management program to link services, Internet-based training for providers, and repurposing sitters as Elder Life specialists.

SUBMITTER: Leggett A

PROVIDER: S-EPMC6768732 | biostudies-literature | 2019 Oct

REPOSITORIES: biostudies-literature

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Dementia Care Across a Tertiary Care Health System: What Exists Now and What Needs to Change.

Leggett Amanda A Connell Cathleen C Dubin Leslie L Dunkle Ruth R Langa Kenneth M KM Maust Donovan T DT Roberts J Scott JS Spencer Beth B Kales Helen C HC

Journal of the American Medical Directors Association 20190527 10

<h4>Objectives</h4>This study explored the process of care for persons living with dementia (PLWDs) in various care settings across a tertiary care system and considers challenges and opportunities for change.<h4>Design</h4>Aimed at quality improvement, qualitative interviews were conducted with key stakeholders in dementia care across geriatric outpatient clinics, medical and psychiatric emergency departments, and the main hospital in 2016.<h4>Setting and participants</h4>Forty-nine interactive ...[more]

PMID: 31147289

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Project description:BackgroundUncontrolled hypertension represents a substantial and growing burden in Guatemala and other low and middle-income countries. As a part of the formative phase of an implementation research study, we conducted a needs assessment to define short- and long-term needs and opportunities for hypertension services within the public health system.MethodsWe conducted a multi-method, multi-level assessment of needs related to hypertension within Guatemala's public system using the World Health Organization's health system building blocks framework. We conducted semi-structured interviews with stakeholders at national (n = 17), departmental (n = 7), district (n = 25), and community (n = 30) levels and focus groups with patients (3) and frontline auxiliary nurses (3). We visited and captured data about infrastructure, accessibility, human resources, reporting, medications and supplies at 124 health posts and 53 health centers in five departments of Guatemala. We conducted a thematic analysis of transcribed interviews and focus group discussions supported by matrix analysis. We summarized quantitative data observed during visits to health posts and centers.ResultsMajor challenges for hypertension service delivery included: gaps in infrastructure, insufficient staffing and high turnover, limited training, inconsistent supply of medications, lack of reporting, low prioritization of hypertension, and a low level of funding in the public health system overall. Key opportunities included: prior experience caring for patients with chronic conditions, eagerness from providers to learn, and interest from patients to be involved in managing their health. The 5 departments differ in population served per health facility, accessibility, and staffing. All but 7 health posts had basic infrastructure in place. Enalapril was available in 74% of health posts whereas hydrochlorothiazide was available in only 1 of the 124 health posts. With the exception of one department, over 90% of health posts had a blood pressure monitor.ConclusionsThis multi-level multi-method needs assessment using the building blocks framework highlights contextual factors in Guatemala's public health system that have been important in informing the implementation of a hypertension control trial. Long-term needs that are not addressed within the scope of this study will be important to address to enable sustained implementation and scale-up of the hypertension control approach.

Project description:Background/objectivesAlthough several approaches have been developed to provide comprehensive care for persons living with dementia (PWD) and their family or friend caregivers, the relative effectiveness and cost effectiveness of community-based dementia care (CBDC) versus health system-based dementia care (CBDC) and the effectiveness of both approaches compared with usual care (UC) are unknown.DesignPragmatic randomized three-arm superiority trial. The unit of randomization is the PWD/caregiver dyad.SettingFour clinical trial sites (CTSs) based in academic and clinical health systems.ParticipantsA total of 2,150 English- or Spanish-speaking PWD who are not receiving hospice or residing in a nursing home and their caregivers.InterventionsEighteen months of (1) HSDC provided by a nurse practitioner or physician's assistant dementia care specialist who works within the health system, or (2) CBDC provided by a social worker or nurse care consultant who works at a community-based organization, or (3) UC with as needed referral to the Alzheimer's Association Helpline.MeasurementsPrimary outcomes: PWD behavioral symptoms and caregiver distress as measured by the Neuropsychiatric Inventory Questionnaire (NPI-Q) Severity and Modified Caregiver Strain Index scales.Secondary outcomesNPI-Q Distress, caregiver unmet needs and confidence, and caregiver depressive symptoms. Tertiary outcomes: PWD long-term nursing home placement rates, caregiver-reported PWD functional status, cognition, goal attainment, "time spent at home," Dementia Burden Scale-Caregiver, a composite measure of clinical benefit, Quality of Life of persons with dementia, Positive Aspects of Caregiving, and cost effectiveness using intervention costs and Medicare claims.ResultsThe results will be reported in the spring of 2024.ConclusionD-CARE will address whether emphasis on clinical support and tighter integration with other medical services has greater benefit than emphasis on social support that is tied more closely to community resources. It will also assess the effectiveness of both interventions compared with UC and will evaluate the cost effectiveness of each intervention.

Project description:BackgroundNo previous studies have characterized a patient's experience of rheumatoid arthritis (RA) management in Greece and unmet needs may exist despite a broad range of available treatments. Therefore, we assessed quality of life (QoL), functional ability, and healthcare resource utilization in patients with established RA and receiving treatment in a tertiary care setting in Greece.MethodsThis was a prospective, observational cohort of patients aged ≥18 years, receiving any type of treatment for RA, and followed for 12 months at 7 rheumatology referral centers across mainland Greece (NCT01001182). Patient data were collected at the initial visit and 3, 6, and 9 months. QoL was evaluated using the Euro Quality of Life-5 dimensions questionnaire (EQ-5D) and functional ability was evaluated using the Health Assessment Questionnaire (HAQ).ResultsA total of 210 patients with RA were enrolled (76.7% women, mean ± standard deviation [SD] age: 59.1 ± 12.6 years, median [interquartile range] disease duration: 11.9 [5.0-16.0] years). Baseline mean ± SD EQ-5D and HAQ scores were 0.57 ± 0.32 and 0.75 ± 0.63, respectively, and remained largely unchanged throughout the study. Post-hoc comparison showed that patients receiving non-biologic disease-modifying antirheumatic drugs (non-bDMARDs) had significantly higher EQ-5D and lower HAQ-DI scores compared with those receiving biologic DMARDs. A majority of patients reported having difficulty doing housework or other duties (61.4 and 61.9%, respectively), and 55.2% reported needing external support for these tasks. Positive correlation was observed between QoL and functional ability. Hospitalization at least once during the study occurred in 9.5% of the patients, and 12.5% of these cases were due to exacerbation of RA. At baseline, 52.4% of the patients were retired, with 38.5% of retirees having retired early due to RA. Among the patients who were retired at baseline, the mean ± SD period from actual retirement to expected retirement age was 12.1 ± 8.1 years.ConclusionQoL and functional ability were positively correlated in patients with long-standing RA, with a large proportion showing impairments in both. Timely, target-oriented treatment initiated as soon as possible after diagnosis may help to improve patient-reported outcomes and limit the burden of RA.Trial registrationClinicalTrials.gov NCT01001182 . Registered 23 October 2009.

Dataset Information

Dementia Care Across a Tertiary Care Health System: What Exists Now and What Needs to Change.

Publications

Dementia Care Across a Tertiary Care Health System: What Exists Now and What Needs to Change.

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