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 assistants' 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.

Attitudes toward advance care planning among persons with dementia and their caregivers.

OBJECTIVES: To examine factors that influence decision-making, preferences, and plans related to advance care planning (ACP) and end-of-life care among persons with dementia and their caregivers, and examine how these may differ by race. DESIGN: Cross-sectional survey. SETTING: 13 geographically dispersed Alzheimer's Disease Centers across the United States. PARTICIPANTS: 431 racially diverse caregivers of persons with dementia. MEASUREMENTS: Survey on "Care Planning for Individuals with Dementia." RESULTS: The respondents were knowledgeable about dementia and hospice care, indicated the person with dementia would want comfort care at the end stage of illness, and reported high levels of both legal ACP (e.g., living will; 87%) and informal ACP discussions (79%) for the person with dementia. However, notable racial differences were present. Relative to white persons with dementia, African American persons with dementia were reported to have a lower preference for comfort care (81% vs. 58%) and lower rates of completion of legal ACP (89% vs. 73%). Racial differences in ACP and care preferences were also reflected in geographic differences. Additionally, African American study partners had a lower level of knowledge about dementia and reported a greater influence of religious/spiritual beliefs on the desired types of medical treatments. Notably, all respondents indicated that more information about the stages of dementia and end-of-life health care options would be helpful. CONCLUSIONS: Educational programs may be useful in reducing racial differences in attitudes towards ACP. These programs could focus on the clinical course of dementia and issues related to end-of-life care, including the importance of ACP.

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.

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.

Dementia care management in primary care : Current collaborative care models and the case for interprofessional education.

BACKGROUND: Dementia is one of the most prevalent diseases in the older population. Various dementia care models have been developed to address patient's healthcare needs. They can be described as "collaborative care" or "person-centered care". Referring to the needs of the workforce working with persons with dementia, a key element is the use of interprofessional education (IPE). OBJECTIVE: The purpose of this article is to describe different international collaborative care models to define a minimum standard of healthcare professions for collaborative dementia care in primary care. This helps to identify requirements for IPE to optimize care of people with dementia and to support informal caregivers in the future. MATERIAL AND METHODS: In this article six dementia care models from 4 different countries (Germany, USA, UK and Netherlands) are described and compared regarding aims, interventions and healthcare professionals involved. RESULTS: Care teams are minimally comprised of general practitioners or primary care providers, nurses, and social workers. Additional healthcare disciplines may be involved for specific interventions. Mostly, care team members received specific training but such training did not necessarily incorporate the IPE approach. To ensure successful collaboration of professions, IPE training programs should at least consist of the following core topics: (1) early diagnosis, (2) postdiagnostic support, (3) advanced care planning for patients and caregivers and (4) effective collaborative care. CONCLUSION: The IPE programs for dementia should be expanded and must be widely implemented in order to assess the impact on collaborative practice. This study will provide the knowledge base for structuring IPE trainings developing educational agendas and adapting existing guidelines to improve collaborative dementia care in the future.

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.

Feasibility and Effect Sizes of the Revised Daily Engagement of Meaningful Activities Intervention for Individuals 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.

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.

Use of a multiparty web based videoconference support group for family caregivers: Innovative practice.

This article describes a pilot of a weekly web based videoconference support group for five caregivers of persons with dementia. All participants reported positive views of the group and videoconference medium. Improvements in caregiver anxiety, depression, and physical health scores were observed. Depression scores remained the same with difficulties experienced by the caregiver increasing slightly. Self-efficacy for controlling upsetting thoughts and responding to disruptive behavior improved but worsened slightly for obtaining respite. We concluded that web based support was a positive experience for caregivers, providing them with an acceptable, feasible, low-cost technological alternative to in person support that reduced barriers to attendance by being available in homes.

New workforce development in dementia care: screening for "caring": preliminary data.

The United States has a significant shortage of trained geriatricians and of nurses, social workers, and paraprofessionals educated to care for elderly adults. As the aging population continues to grow, providing high-quality care will require new models that better address the many needs of aging individuals and their caregivers, using cost-effective strategies. Responding to this need, the Indiana University Center for Aging Research implementation scientists developed, tested, and are now scaling up a successful collaborative care coordination model for older adults with dementia, depression, or both: the Aging Brain Care program. This model now includes a newly created frontline care provider position, the Care Coordinator Assistant. The Care Coordinator Assistant works with individuals and caregivers to monitor biopsychosocial needs and deliver evidence-based and individualized care protocols, with close supervision from the registered nurse Care Coordinator. Recognizing that current hiring practices for frontline providers were insufficient to screen for critical abilities expected in this new position, including the ability to express "caring" and empathy, a new screening process was created building on the Multiple Mini Interview (MMI) format. The Care Coordinator Assistant MMI comprised six stations, each created to simulate challenging scenarios that will be frequently encountered and to assess important candidate abilities. Overall, the six-station MMI, with two to three items per station, provided factorially valid measures and good predictive ability. The process did not appear to be overly burdensome for candidates, and interviewers noted that it was helpful in discriminating between candidates.

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.

Connecting research discovery with care delivery in dementia: the development of the Indianapolis Discovery Network for Dementia.

BACKGROUND: The US Institute of Medicine has recommended an integrated, locally sensitive collaboration among the various members of the community, health care systems, and research organizations to improve dementia care and dementia research. METHODS: Using complex adaptive system theory and reflective adaptive process, we developed a professional network called the "Indianapolis Discovery Network for Dementia" (IDND). The IDND facilitates effective and sustainable interactions among a local and diverse group of dementia researchers, clinical providers, and community advocates interested in improving care for dementia patients in Indianapolis, Indiana. RESULTS: The IDND was established in February 2006 and now includes more than 250 members from more than 30 local (central Indiana) organizations representing 20 disciplines. The network uses two types of communication to connect its members. The first is a 2-hour face-to-face bimonthly meeting open to all members. The second is a web-based resource center (http://www.indydiscoverynetwork.org ). To date, the network has: (1) accomplished the development of a network website with an annual average of 12,711 hits per day; (2) produced clinical tools such as the Healthy Aging Brain Care Monitor and the Anticholinergic Cognitive Burden Scale; (3) translated and implemented the collaborative dementia care model into two local health care systems; (4) created web-based tracking software, the Enhanced Medical Record for Aging Brain Care (eMR-ABC), to support care coordination for patients with dementia; (5) received more than USD$24 million in funding for members for dementia-related research studies; and (6) adopted a new group-based problem-solving process called the "IDND consultancy round." CONCLUSION: A local interdisciplinary "think-tank" network focused on dementia that promotes collaboration in research projects, educational initiatives, and quality improvement efforts that meet the local research, clinical, and community needs relevant to dementia care has been built.

Frontotemporal dementia caregivers and researchers: partnering for brain donation.

This study utilized a community-based, participatory research model between the Association for Frontotemporal Degeneration (AFTD) and the Education Core of the Indiana Alzheimer Disease Center. A total of 30 caregivers of persons with frontotemporal dementia (FTD) participated in 6 focus groups in 3 cities. The majority of participants were spouses of the person with FTD and had been providing care for an average of 6 years. Transcript analysis revealed 7 prominent themes: willingness to participate, when/how the issue of brain donation is raised, who initiates discussion about brain donation, who is involved in decisions about brain donation, motivation for participating in brain donation, lack of effective communication, and barriers to research participation. Caregivers demonstrated a strong desire to participate in research and contribute to advancing knowledge. The lack of effective communication between the clinicians and caregivers was a barrier to developing positive rapport, detrimentally impacting research participation.

A collaborative Alzheimer disease research exchange using a community-based Helpline as a recruitment tool.

Although barriers to research participation present challenges for researchers trying to recruit participants, community-based organizations typically have a relationship with and access to potential participants, but often lack information about local studies recruiting participants and/or specifics about studies, how to describe them and how to refer their clients to a study. Therefore, a Community-Based Participatory Research (CBPR)model of collaboration may be a mutually advantageous option for recruiting participants to Alzheimer disease research. The broad goal of this study was to assess whether this void could be bridged and relationships developed between the Alzheimer's Association of Greater Indiana and researchers at the Indiana Alzheimer Disease Center, and improve flow of information to increase research participation to any or all of 4 projects recruiting research participants at the time. Of the 257 Helpline callers who received information about the 4 local studies recruiting participants, 4 family caregivers called the research coordinators and 2 participants were enrolled into 2 separate studies. One person was interested and had completed and returned initial paperwork but had not yet scheduled a screening visit. The National Cell Repository for Alzheimer Disease received 0 calls (participation in National Cell Repository for Alzheimer Disease was 1 of the 4 projects offered to potential participants). Active CBPR is a good goal to strive toward. Community partners are critical to gain access to potential participants for our research. Despite the low number of recruits to Indiana Alzheimer Disease Center studies, this CBPR project was considered a success. Distributing information about local studies to family members and persons with dementia using the Alzheimer's Association of Greater Indiana Helpline was seen as important by the family members in this study. The Helpline may prove to be an excellent mechanism to do this once revisions are made to improve the efficiency of the methodology and address several limitations of this study. In particular, the Institutional Review Board had approved only the patient/family caregiver call the clinical trial coordinators. We believe if the clinical trial coordinator could call the caregivers with information about studies and projects, recruitment, and retention through the Helpline would be more successful.

Long term caregiving: helping families of persons with mild cognitive impairment cope.

The purpose of the paper is to describe common psychological and caregiving issues that can cause stress in family members of persons with mild cognitive impairment (PwMCI) in order to assist family members in providing care and support to the PwMCI while also caring for themselves over long periods of time. Because PwMCI and their family members have time to prepare for the future should the PwMCI no longer be able to participate in their own care, it is important that clinicians offer support, education, and referrals for services and interventions when needed. The results of a review and synthesis of the caregiving literature found that much information exists from educational and intervention programs designed to help caregivers of Alzheimer disease however little empirical information is available for clinicians to assist PwMCI and their family members. This paper provides valuable and practical information for clinicians and other care providers to assist family members of PwMCI to cope with the uncertainty of the diagnosis, prepare for the future, and manage their stress over the long-term.

Depressed mood in informal caregivers of individuals with mild cognitive impairment.

This study estimates the prevalence of depressed mood in caregivers of individuals with mild cognitive impairment (MCI) and assesses whether demographics, stressors, intrapsychic strain, and gain are associated with depressed mood. A secondary analysis of baseline data from the Alzheimer's Disease Cooperative Study MCI trial was conducted using a cross-sectional, correlational design. Descriptive statistics to estimate the prevalence of caregiver depressed mood and univariate and block-wise logistic regression analyses were used. The prevalence of depressed mood in 769 caregivers was 24.6% (95% confidence interval, 21.5-27.7). The odds of being depressed were significantly higher in younger, nonspousal caregivers with less education, who cared for MCI patients with lower activities of daily living functioning, and who perceived greater relational deprivation, higher levels of self-loss, and personal gain. Controlling for relevant variables, relational deprivation and caregiver education continued to be significantly associated with depressed mood. Relational deprivation may be important for future interventions.

Who refuses the diagnostic assessment for dementia in primary care?

OBJECTIVE: Early screening and detection of dementia in primary care remains controversial. At least half of the patients identified as cognitively impaired by screening instruments do not meet criteria for dementia and some patients refuse further evaluation following a positive screen. The aim of this study was to identify the characteristics of patients who refuse a clinical diagnostic assessment for dementia after screening. DESIGN: Cross sectional study. SETTING: Seven primary care practice centers in Indianapolis. PARTICIPANTS: Four hundred and thirty-four individuals aged 65 and older who screened positive for dementia with a mean age of 74.6, 67% women, and 68% African-American. MAIN OUTCOME MEASURE: Patients' acceptance of undergoing a dementia diagnostic assessment that included neuropsychological testing, caregiver interview, and medical chart review. RESULTS: Among patients with positive screening results for dementia, approximately half (47.7%) refused further assessment to confirm their screening results. In a bivariate analysis, possible factors associated with a higher probability of refusing dementia assessment were older age and better screening score. In a multiple logistic regression model, performing well on the temporal orientation of the screening instrument was associated with a higher probability of refusing diagnostic assessment for dementia (OR = 1.37; p = 0.001). Also, African-American patients aged 80 and older were more likely to refuse the diagnostic assessment than African-Americans less than 80 years of age (OR = 3.1, p < 0.001), while there was no significant age association for white patients (OR = 0.9, p = 0.728). CONCLUSIONS: Older primary care patients who perceived themselves as having no cognitive symptoms refused dementia diagnostic assessment despite their positive screening results. We must improve our understanding of the decision-making process driving patients' beliefs and behaviors about the benefits and risks of dementia screening and diagnosis before implementing any broad-based screening initiatives for dementia.