Faculty Bibliography

BACKGROUND: Medication non-adherence is common in Parkinson's disease (PD) and is associated with increased disability and healthcare costs. Individuals' beliefs regarding their medical conditions and treatments impact medication adherence. While instruments exist to measure patients' beliefs about medications in general, no such tool exists for PD. OBJECTIVES: Create an instrument eliciting medication beliefs of persons with PD; identify demographic and clinical characteristics associated with beliefs; and examine whether beliefs are associated with dopaminergic therapy adherence. METHODS: We developed the Parkinson's Disease Medication Beliefs Scale (PD-Rx) in four phases: focus groups of patients and caregivers to generate items, scale development, expert and patient revision of items, and a cross-sectional validation sample (n = 75). Adherence was calculated using two approaches incorporating self-reported medication lists. RESULTS: The PD-Rx consists of 11 items covering benefits and risks of PD pharmacotherapies. The scale covers motor improvement, current adverse effects, and future concerns. Higher scores indicate more positive beliefs. Internal consistency was acceptable (Cronbach's alpha = 0.67). Test-retest reliability was 0.47. Quality of life was associated with PD-Rx scores, and lower scores were associated with non-adherence. CONCLUSIONS: Negative beliefs about PD treatments are associated with lower quality of life and may be related to medication non-adherence. Further study of any causal relationship between beliefs and medication non-adherence in PD will inform the design of future patient-centered interventions to improve adherence.

Many countries have adopted national dementia plans to identify actions to address the growing Alzheimer's crisis. The enactment of the National Alzheimer's Project Act called for the creation of such a plan in the United States, and the first U.S. national Alzheimer's plan was released in 2012, with annual updates thereafter. As the release of the original Plan, efforts have been underway to implement its five goals, including identifying milestones required to meet the plan's biomedical research goal (goal 1). However, similar milestones have not been completed for the goals on care (goal 2) and support (goal 3). To advance this effort, the Alzheimer's Association convened a workgroup with expertise in clinical care and long-term services and supports, dementia care and support research, and public policy to identify key milestones necessary to achieve goals 2 and 3. This report outlines the workgroup's activities and presents the workgroup's recommended milestones.

PURPOSE OF THE STUDY: Cognitive impairment (CI) is one of several factors known to influence hospitalization, hospital length of stay, and rehospitalization among older adults. Redesigning care delivery systems sensitive to the influence of CI may reduce acute care utilization while improving care quality. To develop a foundation of fundamental needs for health care redesign, we conducted focus groups with inpatient and outpatient providers to identify barriers, facilitators, and suggestions for improvements in care delivery for patients with CI. DESIGN AND METHODS: Focus group sessions were conducted with providers to identify their approach to caring for cognitively impaired hospitalized adults; obstacles and facilitators to providing this care; and suggestions for improving the care process. Using a thematic analysis, two reviewers analyzed these transcripts to develop codes and themes. RESULTS: Seven themes emerged from the focus group transcripts. These were: (1) reflections on serving the cognitively impaired population; (2) descriptions of perceived barriers to care; (3) strategies that improve or facilitate caring for hospitalized older adults; (4) the importance of fostering a hospital friendly to the needs of older adults; (5) the need for educating staff, patients, and caregivers; (6) the central role of good communication; and (7) steps needed to provide more effective care. IMPLICATIONS: Providing effective acute care services to older adults with CI is an important challenge in health care reform. An understanding derived from the perspective of multiple professional disciplines is an important first step. Future research will build on this preliminary study in developing new acute care models for patients with CI.

Depression is common in nursing facility residents. Depression data obtained using the Minimum Data Set (MDS) 3.0 offer opportunities for improving diagnostic accuracy and care quality. How best to integrate MDS 3.0 and other data into quality improvement (QI) activity is untested. The objective was to increase nursing home (NH) capability in using QI processes and to improve depression assessment and management through focused mentorship and team building. This was a 6-month intervention with five components: facilitated collection of MDS 3.0 nine-item Patient Health Questionnaire (PHQ-9) and medication data for diagnostic interpretation; education and modeling on QI approaches, team building, and nonpharmacological depression care; mentored team meetings; educational webinars; and technical assistance. PHQ-9 and medication data were collected at baseline and 6 and 9 months. Progress was measured using team participation measures, attitude and care process self-appraisal, mentor assessments, and resident depression outcomes. Five NHs established interprofessional teams that included nursing (44.1%), social work (20.6%), physicians (8.8%), and other disciplines (26.5%). Members participated in 61% of eight offered educational meetings (three onsite mentored team meetings and five webinars). Competency self-ratings improved on four depression care measures (P = .05 to <.001). Mentors observed improvement in team process and enthusiasm during team meetings. For 336 residents with PHQ-9 and medication data, depression scores did not change while medication use declined, from 37.2% of residents at baseline to 31.0% at 9 months (P < .001). This structured mentoring program improved care processes, achieved medication reductions, and was well received. Application to other NH-prevalent syndromes is possible.

OBJECTIVES: To characterize caregiver strain, depressive symptoms, and self-efficacy for managing dementia-related problems and the relationship between these and referring provider type. DESIGN: Cross-sectional observational cohort. SETTING: Urban academic medical center. PARTICIPANTS: Caregivers of community-dwelling adults with dementia referred to a dementia care management program. MEASUREMENTS: Caregivers were surveyed and completed the Patient Health Questionnaire (PHQ-9) about themselves; the Modified Caregiver Strain Index; the Neuropsychiatric Inventory Questionnaire, which measures patient symptom severity and related caregiver distress; and a nine-item caregiver self-efficacy scale developed for the study. RESULTS: Of 307 patient-caregiver dyads surveyed over a 1-year period, 32% of caregivers reported confidence in managing dementia-related problems, 19% knew how to access community services to help provide care, and 28% agreed that the individual's provider helped them work through dementia care problems. Thirty-eight percent reported high levels of caregiver strain, and 15% reported moderate to severe depressive symptoms. Caregivers of individuals referred by geriatricians more often reported having a healthcare professional to help work through dementia care problems than those referred by internists, family physicians, or other specialists, but self-efficacy did not differ. Low caregiver self-efficacy was associated with higher caregiver strain, more caregiver depressive symptoms, and caring for an individual with more-severe behavioral symptoms. CONCLUSION: Most caregivers perceived inadequate support from the individual's provider in managing dementia-related problems, reported strain, and had low confidence in managing caregiving. New models of care are needed to address the complex care needs of individuals with dementia and their caregivers.

OBJECTIVES: To compare the effectiveness and costs of telephone-only approach to in-person plus telephone for delivering an evidence-based, coordinated care management program for dementia. METHODS: We randomized 151 patient-caregiver dyads from an underserved predominantly Latino community to two arms that shared a care management protocol but implemented in different formats: in-person visits at home and/or in the community plus telephone and mail, versus telephone and mail only. We compared between-arm caregiver burden and care-recipient problem behaviors (primary outcomes) and patient-caregiver dyad retention, care quality, health care utilization, and costs (secondary outcomes) at 6- and 12-months follow-up. RESULTS: Care quality improved substantially over time in both arms. Caregiver burden, care-recipient problem behaviors, retention, and health care utilization did not differ across arms but the in-person program cost more to deliver. DISCUSSION: Dementia care quality improved regardless of how care management was delivered; large differences in effectiveness or cost offsets were not detected.

Improving the quality, comprehensiveness, and coordination of health care for people with dementia is a primary goal of the National Alzheimer's Plan. In this article, the key principles of high-quality dementia care for nonspecialist clinicians and health care leaders are synthesized, a framework for operationalizing its components is presented, and simple steps for developing dementia-capable health care systems are offered.