Ongoing Medical Management to Maximize Health and Well-being for Persons Living With Dementia

Background and Objectives: Persons living with dementia have complex care needs including memory loss that should be taken into account by providers and family caregivers involved with their care. The prevalence of comorbid conditions in people with dementia is high and, thus, how primary care, community providers and family caregivers provide best practice care, person-centered care is important. Research Design and Methods: Care providers should understand the ongoing medical management needs of persons living with dementia in order to maximize their quality of life, proactively plan for their anticipated needs, and be as well prepared as possible for health crises that may occur. Results: This article provides eight practice recommendations intended to promote understanding and support of the role of nonphysician care providers in educating family caregivers about ongoing medical management to improve the wellbeing of persons living with dementia. Discussion and Implications: Key among these are recommendations to use nonpharmacological interventions to manage behavioral and psychological symptoms of dementia as the first line of treatment and recommendations on how to best support the use and discontinuation of pharmacological interventions as necessary

Workforce development to provide person-centered care

OBJECTIVES: Describe the development of a competent workforce committed to providing patient-centered care to persons with dementia and/or depression and their caregivers; to report on qualitative analyses of our workforce's case reports about their experiences; and to present lessons learned about developing and implementing a collaborative care community-based model using our new workforce that we call care coordinator assistants (CCAs). METHOD: Sixteen CCAs were recruited and trained in person-centered care, use of mobile office, electronic medical record system, community resources, and team member support. CCAs wrote case reports quarterly that were analyzed for patient-centered care themes. RESULTS: Qualitative analysis of 73 cases using NVivo software identified six patient-centered care themes: (1) patient familiarity/understanding; (2) patient interest/engagement encouraged; (3) flexibility and continuity of care; (4) caregiver support/engagement; (5) effective utilization/integration of training; and (6) teamwork. Most frequently reported themes were patient familiarity - 91.8% of case reports included reference to patient familiarity, 67.1% included references to teamwork and 61.6% of case reports included the theme flexibility/continuity of care. CCAs made a mean number of 15.7 (SD = 15.6) visits, with most visits for coordination of care services, followed by home visits and phone visits to over 1200 patients in 12 months. DISCUSSION: Person-centered care can be effectively implemented by well-trained CCAs in the community

Feasibility and Effect Sizes of the Revised Daily Engagement of Meaningful Activities Intervention for Persons with Mild Cognitive Impairment and Their Caregivers

A nurse-led intervention, Daily Engagement of Meaningful Activities (DEMA), was evaluated for feasibility and effect sizes in a two-group randomized pilot study with 36 patient–caregiver dyads (17 DEMA and 19 attention control). Effect sizes were estimated on 10 outcomes: dyad functional ability awareness congruence; patients' meaningful activity performance and satisfaction, confidence, depressive symptoms, communication satisfaction, physical function, and life satisfaction; and caregivers' depressive symptoms and life changes. High feasibility of DEMA was supported by the following indicators: consent (97.7%), session completion (91.7%), and Time 3 measure completion (97.2%). Compared to the attention control group, the DEMA group had higher dyad congruence in functional ability awareness and life satisfaction 3 months post-intervention and improved physical function at 2 weeks post-intervention. Although DEMA showed high feasibility and benefits on some health-related outcomes, further testing of DEMA in a larger randomized controlled clinical trial is needed

Impact of Noncaregiving-Related Stressors on Informal Caregiver Outcomes

BACKGROUND: Caregivers of persons with dementia are stressed. Stressors not related to care recipients' needs impact caregiver outcomes, yet are seldom reported. The purpose of this study was to report the most stressful events experienced by spouse caregivers of older adults with Alzheimer s disease during a 6-month period. METHODS: 31 caregivers completed the Most Stressful Event form, Patient Health Questionnaire (PHQ-9) and the Revised Memory Behavioral Problem Checklist (R-MBPC). Fisher's exact test and two-sample t-test were used to compare Most Stressful Events between caregivers. ANOVA model tested whether the PHQ-9 and R-MBPC subscales differed by stressor. RESULTS: Caregivers reported no stressors 21.5% of the time, 1-2 stressors 25% of the time, and 3 stressors 53% of the time with 318 stressors reported in total. Care recipient needs (30.2%), caregiver needs (26.7%), and decision-making (16.7%) were the most frequently reported stressors. Using a mixed effects model, there were associations between the Most Stressful Events and depression (p = 0.016), mobility (p = 0.024) and caregiver issues (p = 0.009) subscales of R-MBPC. CONCLUSION: Results can be used to develop targeted intervention and support strategies for spouse caregivers experiencing non-caregiving related stressorsas well as the traditional challenges with caregiving related issues

Satisfaction with a Family-focused Intervention for Mild Cognitive Impairment Dyads

Purpose This article describes satisfaction that persons with mild cognitive impairment (PwMCI) and their caregivers had with the Daily Enhancement of Meaningful Activity (DEMA) intervention. Methods This randomized controlled pilot study compared satisfaction (usefulness, ease of use, and acceptability) with DEMA (n = 17 dyads) to an information support (IS) control group (n = 19 dyads). Six biweekly sessions (two in person and four by telephone) were delivered by trained nurses. Data analysis included descriptive statistics, independent-sample t tests, and content analysis. Findings PwMCI receiving DEMA rated their satisfaction significantly higher (p = .033) than did the control group; there was no difference in satisfaction between caregivers across groups. Qualitative interview data supported the usefulness, ease of use, and acceptability of DEMA for both PwMCI and caregivers. Conclusions Results documented PwMCI's satisfaction with DEMA as implemented by nurses to support PwMCI–caregiver dyads’ engagement in meaningful activity. DEMA may need revision to increase satisfaction for caregivers. Clinical Relevance The DEMA intervention was evaluated as useful, easy to use, and acceptable to PwMCI and their caregivers based on positive mean ratings. The study findings provide preliminary support of DEMA as a means to improve quality of life by helping to support patient and caregiver engagement in meaningful activities and problem solving

Care coordinator assistants: Job satisfaction and the importance of teamwork in delivering person-centered dementia care

As the prevalence of persons with dementia increases, a larger, trained, and skilled healthcare workforce is needed. Attention has been given to models of person-centered care as a standard for dementia care. One promising role to deliver person-centered care is the care coordinator assistant. An inquiry about care coordinator assistant’s job satisfaction is reasonable to consider for retention and quality improvement purposes. We evaluated care coordinator assistant’s job satisfaction quantitatively and qualitatively. This study was part of a Centers for Medicare & Medicaid Services Health Care Innovation Award to the Indiana University School of Medicine. Sixteen care coordinator assistants, predominately female, African American or Caucasian, college graduates with a mean age of 43.1 years participated. Care coordinator assistants wrote quarterly case reports to share stories, lessons learned, and/or the impact of their job and completed the revised Job Satisfaction Inventory and Job in General scales during the second year of the Centers for Medicare & Medicaid Services award. For the Job Descriptive Index subscales promotion, supervision, and coworkers and Job in General, care coordinator assistants scored similar to normative means. Care coordinator assistants reported significantly higher satisfaction on the work subscale and significantly lower satisfaction on the pay subscale compared to normative data. Care coordinator assistants completed 119 quarterly case reports. Job satisfaction and teamwork were recurring themes in case reports, referenced in 47.1% and 60.5% of case reports, respectively. To address the demands of increasing dementia diagnoses, care coordinator assistants can constitute a compassionate, competent, and satisfied workforce. Training care coordinator assistants to work together in a team to address the needs of persons with dementia and caregivers provides a viable model of workforce development necessary to meet the growing demands of this population

Exploration of Perceived Psychosocial Benefits of Senior Companion Program Participation Among Urban-Dwelling, Low-Income Older Adult Women Volunteers

Background: As the older adult population increases, it is imperative to increase older adults' opportunities for social involvement, thus maintaining their important roles and contributions to society. While there are known health-related benefits of volunteerism among older adults, a dearth of information exists on the perceived benefits of volunteerism among low-income and ethnic minority older adults. Purpose: To understand the perceived psychosocial benefits of volunteering in the Senior Companion Program and to present findings of focus groups conducted with urban-dwelling, low-income older adult women volunteers. Design and Methods: Inductive content analysis and the Dedoose qualitative data analysis software were used for analyzing data obtained from 59 older adult women Senior Companions who participated in nine focus groups. Results: Content analyses of the focus group transcripts identified four major themes: (1) Reducing social isolation; (2) Improving quality of life; (3) Finding purpose and meaning; and (4) Increasing understanding of aging. The majority of our participants (81%) were African American women, with a mean age of 70 years. Approximately 83.1% had completed high school and 62.7% lived below the poverty line. Discussion and Implications: Findings provided data rich in descriptions of positive psychosocial outcomes, finding meaning and purpose, and a better understanding of aging in urban-dwelling, low-income older women volunteers. The findings also provide support for the need for policies and programs that promote civic engagement in this population

Response to depression treatment in the Aging Brain Care Medical Home model

OBJECTIVE: To evaluate the effect of the Aging Brain Care (ABC) Medical Home program's depression module on patients' depression severity measurement over time. DESIGN: Retrospective chart review. SETTING: Public hospital system. PARTICIPANTS: Patients enrolled in the ABC Medical Home program between October 1, 2012 and March 31, 2014. METHODS: The response of 773 enrolled patients who had multiple patient health questionnaire-9 (PHQ-9) scores recorded in the ABC Medical Home program's depression care protocol was evaluated. Repeatedly measured PHQ-9 change scores were the dependent variables in the mixed effects models, and demographic and comorbid medical conditions were tested as potential independent variables while including random effects for time and intercept. RESULTS: Among those patients with baseline PHQ-9 scores >10, there was a significant decrease in PHQ-9 scores over time (P50% decline from baseline) on the PHQ-9 at 6 months. CONCLUSION: These analyses demonstrate evidence for the sustained effectiveness of the ABC Medical Home program at inducing depression remission outcomes while employing clinical staff who required less formal training than earlier clinical trials

Targeting Functional Decline: Results from the Alzheimer’s Disease Multiple Intervention Trial

Background Alzheimer’s disease (AD) results in progressive functional decline leading to loss of independence Objective To determine whether collaborative care plus two years of home-based occupational therapy delays functional decline Design Randomized controlled clinical trial Setting Urban public health system Patients 180 community-dwelling subjects who were diagnosed with AD and their informal caregivers Interventions All subjects received collaborative care for dementia. Intervention patients also received in-home occupational therapy delivered in 24 sessions over 2 years. Measurements The primary outcome measures was the Alzheimer’s Disease Cooperative Studies Group Activities of Daily Living Scale (ADCS ADL); performance based measures included the Short Physical Performance Battery (SPPB) and Short Portable Sarcopenia Measure (SPSM) Results At baseline, there were no significant between group differences in clinical characteristics; the mean MMSE for both groups was 19 (SD=7). The intervention group received a median of 18 home visits from the study occupational therapists. Both groups declined in ADCS ADL scores over 24 months. At the primary endpoint of 24 months, there were no between group differences in ADCS ADL scores (mean difference 2.34, 95% CI −5.27, 9.96). We were also unable to definitively demonstrate between-group differences in the mean SPPB or SPSM. Limitations The results of this trial are indeterminate and do not rule out potentially clinically important effects of the intervention. Conclusions We were unable to definitively demonstrate whether the addition of two years of in-home occupational therapy to a collaborative care management model slows the rate of functional decline among persons with AD. This trial underscores the burden undertaken by family caregivers as they provide care for persons with AD and the difficulty in slowing functional decline

Patient and caregiver assessment of the benefits from the clinical use of amyloid PET imaging

INTRODUCTION: Few studies to date have explored patient and caregiver views on the clinical use of amyloid positron emission tomography (PET). METHODS: A 7-item questionnaire assessing patient and caregiver views (510 total respondents) toward amyloid PET imaging was advertised broadly through alz.org/trialmatch. RESULTS: We received 510 unique responses from 48 US states, 2 Canadian provinces, the Dominican Republic, and Greece. Both patients and caregivers indicated that they would want to receive amyloid imaging if offered the opportunity. Over 88% of respondents had a positive response (∼10% with neutral and 2% with negative responses) to whether amyloid PET should be offered routinely and be reimbursed. Such information was felt to be useful for long-term legal, financial, and health care planning. Respondents identifying with early age cognitive decline (younger than 65 y) were more likely to explore options for disability insurance (P=0.03). Responders from the Midwest were more likely to utilize information from amyloid imaging for legal planning (P=0.02), disability insurance (P=0.02), and life insurance (P=0.04) than other US regions. DISCUSSION: Patients and caregivers supported the use of amyloid PET imaging in clinical practice and felt that the information would provide significant benefits particularly in terms of future planning