ABSTRACTObjectives: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.

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.

ABSTRACT Background: As many as 70% of intensive care unit (ICU) survivors suffer from long-term physical, cognitive, and psychological impairments known as post-intensive care syndrome (PICS). We describe how the first ICU survivor clinic in the United States, the Critical Care Recovery Center (CCRC), was designed to address PICS using the principles of Agile Implementation (AI). Methods: The CCRC was designed using an eight-step process known as the AI Science Playbook. Patients who required mechanical ventilation or were delirious ≥48 hours during their ICU stay were enrolled in the CCRC. One hundred twenty subjects who completed baseline HABC-M CG assessments and had demographics collected were included in the analysis to identify baseline characteristics that correlated with higher HABC-M CG scores. A subset of patients and caregivers also participated in focus group interviews to describe their perceptions of PICS. Results: Quantitative analyses showed that the cognitive impairment was a major concern of caregivers. Focus group data also confirmed that caregivers of ICU survivors (n = 8) were more likely to perceive cognitive and mental health symptoms than ICU survivors (n = 10). Caregivers also described a need for ongoing psychoeducation about PICS, particularly cognitive and mental health symptoms, and for ongoing support from other caregivers with similar experiences. Conclusions: Our study demonstrated how the AI Science Playbook was used to build the first ICU survivor clinic in the United States. Caregivers of ICU survivors continue to struggle with PICS, particularly cognitive impairment, months to years after discharge. Future studies will need to examine whether the CCRC model of care can be adapted to other complex patient populations seen by health-care professionals.

Introduction Caregivers of persons with frontotemporal disorders (FTD) have unique challenges and needs. They show higher levels of stress, depression, and burden than those caring for persons with Alzheimer's disease. The clinical profiles and pathologies associated with FTD are heterogeneous and characterized by two main phenotypes: a progressive deterioration in behavior, emotion, and interpersonal conduct known as behavioral variant FTD (bvFTD) and a decline in language skills known as primary progressive aphasia (PPA). While there is abundant literature regarding the experience of caregiving for persons with AD, there are very few studies examining the experience of caring for persons with FTD and none that have compared behavior and language variant caregivers. Methods Caregivers of persons with bvFTD (Indiana University) and PPA (Northwestern University) were invited to participate in in-depth individual interviews to understand the nature of living with FTD from early symptoms to diagnosis and caregiving over time. 9 caregivers (5 bvFTD and 4 PPA) were interviewed. Interviews were recorded and transcribed. Transcripts underwent content analysis for emerging themes within the same profile and then discussed among authors for similarities and differences between profiles. Results Analysis revealed the following resulting themes: 1) Obtaining an accurate diagnosis was a difficult and lengthy process; 2) Finding lack of available information and misunderstanding the diagnosis; 3) Adapting to changing roles; 3) Experiencing significant financial and legal challenges; 4) Grieving losses, particularly developmentally non-normative losses due to younger age of onset; 5) Finding lack of disease specific services and knowledgeable providers; and 6) Receiving support in disease specific programs. Within these common general themes, there were differences in how disease presentations impacted functioning and challenged relationships. Conclusions Caregivers of persons with FTD experience distinctive challenges that involve psychosocial, financial, and legal aspects of their lives. Likewise, their needs include finding accurate and specific information as well as competent providers. Perseverance and adaptability are two key qualities involved in caring for persons with FTD, yet caregiver burden remains high. The findings from these interviews illuminate the need for greater attention and support for FTD caregivers by knowledgeable care providers. This research was funded by Not applicable.

A reliable and valid clinically practical multi-domain self-report and caregiver-report tool is needed for tracking actionable symptoms in primary care for elderly patients with multiple chronic conditions (MCCs). Assess internal consistency reliability, test–retest reliability, construct validity, and sensitivity to change for SymTrak. Among 600 (200 patient–caregiver dyads, 200 patients without an identified caregiver) participants, SymTrak was telephone interviewer–administered at baseline and 3-month follow-up, and at 24 h post-baseline for assessing test–retest reliability in a random subsample of 180 (60 dyads, 60 individual patients) participants. Demographic questions, SymTrak, Health Utility Index Mark 3 (HUI3). Exploratory factor analysis indicated a single dominant dimension for SymTrak items for both patients and caregivers. Coefficient alpha and 24-h test–retest reliability, respectively, were high for the 23-item SymTrak total score for both patient-reported (0.85; 0.87) and caregiver-reported (0.86; 0.91) scores. Construct validity was supported by monotone decreasing relationships between the mean of SymTrak total scores across the poor-to-excellent categories of physical and emotional general health, and by high correlations with HUI3 overall utility score, even after adjusting for demographic covariates (standardized linear regression coefficient = − 0.84 for patients; − 0.70 for caregivers). Three-month change in the SymTrak total score was sensitive to detecting criterion standard 3-month reliable change categories (Improved, Stable, Declined) in HUI3-based health-related quality of life, especially for caregiver-reported scores. SymTrak demonstrates good internal consistency and test–retest reliability, construct validity, and sensitivity to change over a 3-month period, supporting its use for monitoring symptoms for older adults with MCCs.

BACKGROUND: A clinically practical, brief, user-friendly, multi-domain self-report and caregiver-report tool is needed for tracking actionable symptoms in primary care for elderly patients with multiple chronic conditions (MCCs). OBJECTIVE: Develop and assess usability, administration time, and internal reliability of SymTrak. DESIGN AND PARTICIPANTS: Phase I: legacy instruments, content validity, analyses of existing data, focus groups (physicians, nurses, patients, informal caregivers), and Think Aloud interviews (patients, caregivers) were used to develop SymTrak. Phase II (pilot feasibility study): 81 (27 patient-caregiver dyads, 27 patients without an identified caregiver) participants were self-administered SymTrak in clinic. MAIN MEASURES: SymTrak and demographic questions. KEY RESULTS: Consistent themes emerged from phase I focus groups. Ambiguous wording was corrected with Think Aloud feedback. In phase II, patients and caregivers preferred circling words instead of numbers for item response options. SymTrak self-administration completion time in clinic was brief; mean was 2.4, 3.0, and 3.3 min for the finalized circlingwords version, respectively, for caregivers, dyadic patients, and patients without a caregiver; and the maximum was 6.2 min for any participant. Usability questionnaire ratings were high. Cronbach's alpha for the SymTrak 23-item total score was 0.86, 0.79, and 0.81 for caregivers, dyadic patients, and patients without a caregiver, respectively. CONCLUSIONS: SymTrak demonstrates content validity, positive qualitative findings, high perceived usability, brief self-administered completion time, and good internal reliability.

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.

The US legislated National Alzheimer's Plan Act (NAPA) has highlighted the lack of diversity in the groups who participate in Alzheimer's disease (AD) research as a rate-limiting step in the successful search for a treatment or cure. Because minority groups are less likely to volunteer in research, despite a higher burden of risk for AD, it is difficult for researchers to generalize study findings across populations. The Indiana Alzheimer Disease Center (IADC), together with the Alzheimer's Association of Greater Indiana (AAGI), organized a Community Advisory Board (CAB) and worked with local African American (AA) leaders to accomplish four aims: To increase awareness of and provide education about AD, programs, and available services in underrepresented communities; to increase community awareness of the importance of AA participation in AD research; to increase AA enrollment in IADC research studies; and to increase AA enrollment in the Alzheimer's Association TrialMatch. Using a community-based participatory research model, we engaged the CAB to help with messaging about AD research (e.g., we developed a research recruitment video for minority communities) and to identify locations and design outreach activities where we could work with the minority community to meet the aims. Through the pilot study we were able to support a part time research engagement specialist who worked closely with the IADC and the community. Over the course of the pilot study, community-based outreach resulted in 185 AA, 68 white, and 67 other and unspecified referrals to the IADC. Of these, 77 new participants were added to the clinical core (35% AA and 65% Caucasians). In addition, we added 300 AA volunteers to the TrialMatch database. Our model of collaboration between an academic AD research center and minority community groups like the ones represented by the IADC CAB and our local Alzheimer's Association chapter, increased diversity research participation. The addition of dedicated staff from the minority community to work within these communities was key to our success.

Introduction: Having meaning and purpose in life is an important feature of mental health, however, finding meaning and purpose may become more challenging for older adults, due to declining function and increasing losses (e.g., widowhood, retirement). Yet, meaning and purpose in life has shown a strong association with social integration and with relational quality in particular. High levels of meaning and purpose have been associated with better health, higher daily competence, higher socioeconomic status, being employed, and being married. In addition, high levels of reported meaning and purpose in life has been associated with better health, psychological well-being, and lower levels of depression symptoms, and better sleep in older adults. Volunteering as a source of purpose in life has been reported in several studies. The Senior Companion Program (SCP) has been recognized as an important program that helps to bridge the gaps of geriatric care by meeting the non-medical needs of community dwelling older adults. SCP is a program supported by the Corporation for National and Community Service an independent, federal grant-making government agency whose mission is to improve lives, strengthen communities, and foster civic participation through service and volunteering.

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. 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. 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. 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.

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.

Engagement and Quality of Life in Under–represented Older Adults: A Community–Based Participatory Research Project Ellen R. Brown, Yvonne Lu, Joyce Beaven, Hugh C. Hendrie, Karen Hanson, Carly A. Carvell, and Mary G. Austrom Community–based Participatory Research (CBPR) is defined as a collaborative approach to research that involves all partners equally in the research process and recognizes the unique strengths that each partner brings. CBPR begins with a research topic of importance to the community and has the aim of combining knowledge with action and achieving some kind of change in the community partner’s program and certainly improves knowledge for the academic partner. In addition, commonly acknowledged benefits of CBPR to the academic and researchers include an increased investment in and commitment to the research process by the study participants and facilitated participant recruitment and retention. Benefits for the community partner include assuming the role of “partner” rather than “subject”, and having a voice in both setting the study objectives and the design of the project, thus ensuring respect for the culture and goals of the community. Both partners gain from the increased likelihood that the project will be successfully completed. The CBPR model was used to guide our collaborative research project, entitled “Engagement and Quality of Life in Underrepresented Older Adults” at Indiana University with our community partner, Catholic Charities Indianapolis and their Senior Companions Program (SCP). The Corporation for National and Community Service is the Federal agency that administers SCP nationally and is the major funding source for this program. As the elderly population increases so does interest in ensuring their health and function. The SCP, a volunteer based program of seniors providing companionship to vulnerable community dwelling elders is an excellent example of civic engagement. CBPR is especially relevant in research with underrepresented groups (URG) because the community partner is typically integrated well within the URG. The SCP recruits, trains, supports and matches volunteers aged 55 and older with frail adults in need of support and companionship. SC provide support and touch the lives of adults needing extra assistance to live independently in their homes. SC serve frail older adults, adults with disabilities, those with terminal illnesses and their presence offers respite to family caregivers at no cost to the clients or caregivers. Our CPBR project was designed to determine elements of wellbeing, physical health and quality of life in the minority elderly participating in the SCP. Understanding the Senior Companion (SC) role and the impact of the SC on the client and, conversely, the client’s impact on the SC has provided valuable information and insight on the effect of meaningful engagement on minority elderly. 60 SC participated in one of 9 focus groups designed to learn more about how the SCP impacts their quality of life as well as that of their clients. SC shared rich stories and examples of how the SCP keeps them motivated, distracts from their own problems as they help clients in need. While our project was designed to understand the elements of participating in the SCP that contribute to and improve quality of life for both the Senior Companions and their clients, the nature of the relationship among the members of the research team, the academic and community partners, is crucial to the success of our work. Fundamentally, CBPR succeeds when community–academic partners share equal responsibility for the project. While we certainly agree that these elements of CBPR described above are important, we found that the following qualities in our team and working closely together to meet [End Page E7] the requirements to complete the project have been critical to the success of our research: Positive Partnership Experience Mutually respectful relationship among the partners and long–standing collaboration existed prior to the initiation of the CBPR. The community–academic partner co–leads undertook the CBPR with a strong foundation of mutual respect and trust built upon a respectful, professional relationship spanning two decades. An essential element of the collaboration was that both partners wanted to learn more about the SCP and what makes it work so well. The community partner knew that rather than collecting data for purely research purposes, they would gain useful information about...

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 disciplinesmay 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.

While fragmented care is a problem across the entire health care delivery system, it is especially problematic for vulnerable older adults with dementia and late-life depression. Most older adults have multiple chronic conditions. Cognitive impairment and mood disorders complicate the management of these comorbid conditions by interfering with the patient’s ability to monitor and report symptoms and comply with the care plan. To reduce fragmentation and promote integrated care, each medical provider must adopt a more holistic view of health care, recognizing the importance of communication and collaboration among all providers and the potential impact of any one action on the patient’s overall health. The Aging Brain Care (ABC) model provides a structure for integrating evidence-based interventions for dementia and depression into the primary care environment. By extending the delivery of care beyond the clinic, ABC offers patient-centered services aimed at coordinating care across multiple providers, settings, and community resources.