Multi-cultural perspectives on group singing among diverse older adults.

Group choir singing has been shown to have health benefits for older adults. However, because most studies have included predominantly white participants, it is unknown whether findings generalize to older adults from more diverse backgrounds. This multi-site qualitative study assessed perceived benefits of group singing for socioeconomically and racially/ethnically diverse older adults. We interviewed 31 choir participants, 6 music professionals and 6 administrators involved in a large, cluster-randomized trial. We used content analysis to identify themes. Psychosocial engagement was most commonly reported, with six components: emotional well-being, self-esteem, self-confidence, social connection and support, decreased loneliness, and cultural identity and multi-cultural appreciation. A few reported cognitive and physical benefits. They also suggest that group singing among ethnically diverse older adults can have multiple psychosocial benefits and enhance a sense of cultural identity and appreciation of other cultures. These findings can help in selecting structured outcome measures for choir interventions.

Caring community and relationship centred care on an end-stage dementia special care unit.

BACKGROUND: of the estimated 1.4 million residents of US nursing homes, over half have dementia. In the final stages of dementia, caregiving is complicated by the inability of care recipients to speak intelligibly or express their needs. AIM: to examine the ways in which a nursing home end-stage dementia special care unit (SCU) functioned as a caring community for people near the end of life. RESEARCH DESIGN AND METHODS: a qualitative, ethnographic case study was conducted in a highly-regarded SCU. Over 175 hours of scheduled activity observations were completed over 2 years, bolstered by 30 hours of caregiving observations on the end-stage dementia unit and 19 interviews with SCU carers. Inductive coding was completed independently by two researchers, emerging themes reconciled by consensus, and qualitative analysis conducted iteratively until the endpoint of thematic saturation. FINDINGS: on the SCU, employees and volunteers fostered relationships based upon a model of family. They formed a caring community that included professionals, volunteers, friends and family. Relationships were supported through (1) the use of reminiscence to evoke intact long-term memories, (2) the use of verbal communication long after care-recipients could no longer speak and (3) the use of intentional nonverbal communication, including daily music, pet visits, and sensory stimulation. CONCLUSIONS: through detailed examination of daily life, this study identified articulated beliefs and observable behaviour through which to develop relationship-centred care in the context of end-stage dementia. The caring community offers primary source data for the development of mid-level theory and the generation of new hypotheses.

Study protocol for a cluster randomized trial of the Community of Voices choir intervention to promote the health and well-being of diverse older adults.

BACKGROUND: Older adults are the fastest growing segment of the United States population. There is an immediate need to identify novel, cost-effective community-based approaches that promote health and well-being for older adults, particularly those from diverse racial/ethnic and socioeconomic backgrounds. Because choral singing is multi-modal (requires cognitive, physical, and psychosocial engagement), it has the potential to improve health outcomes across several dimensions to help older adults remain active and independent. The purpose of this study is to examine the effect of a community choir program (Community of Voices) on health and well-being and to examine its costs and cost-effectiveness in a large sample of diverse, community-dwelling older adults. METHOD/DESIGN: In this cluster randomized controlled trial, diverse adults age 60 and older were enrolled at Administration on Aging-supported senior centers and completed baseline assessments. The senior centers were randomly assigned to either start the choir immediately (intervention group) or wait 6 months to start (control). Community of Voices is a culturally tailored choir program delivered at the senior centers by professional music conductors that reflects three components of engagement (cognitive, physical, and psychosocial). We describe the nature of the study including the cluster randomized trial study design, sampling frame, sample size calculation, methods of recruitment and assessment, and primary and secondary outcomes. DISCUSSION: The study involves conducting a randomized trial of an intervention as delivered in "real-world" settings. The choir program was designed using a novel translational approach that integrated evidence-based research on the benefits of singing for older adults, community best practices related to community choirs for older adults, and the perspective of the participating communities. The practicality and relatively low cost of the choir intervention means it can be incorporated into a variety of community settings and adapted to diverse cultures and languages. If successful, this program will be a practical and acceptable community-based approach for promoting health and well-being of older adults. TRIAL REGISTRATION: ClinicalTrials.gov NCT01869179 registered 9 January 2013.

Music Engagement as Part of Everyday Life in Dementia Caregiving Relationships at Home.

BACKGROUND AND OBJECTIVES: Emerging evidence suggests music-based interventions can improve the well-being of people living with dementia, but little is known about the ways in which music might support dementia caregiving relationships as part of everyday life at home. This study examined music engagement in the context of daily life to identify patterns of music engagement and potential targets for the design of music-based interventions to support well-being. RESEARCH DESIGN AND METHODS: This ethnographic, in-home study of people living with dementia and their family and professional care partners used methods from ethnomusicology, including semistructured interviews and in-home participant observation with a focus on music engagement. RESULTS: A total of 21 dyads were purposively recruited for diversity in terms of gender, ethnicity/race/heritage, caregiving relationship, and music experiences. Despite participants' diverse music preferences, 3 distinct music engagement patterns emerged. (a) Professional care partners intentionally integrated music listening and singing into daily life as part of providing direct care. (b) Family care partners, who had prior dementia care nursing experience or family music traditions, integrated music into daily life in ways that supported their personal relationships. (c) In contrast, family care partners, who lacked dementia care experience and had high levels of caregiver burden, disengaged from prior music-making. DISCUSSION AND IMPLICATIONS: The distinct music engagement patterns reflect different needs on the part of dyads. It is important to continue to support dyads who engage in music daily and to consider developing music-based interventions to support well-being among dyads who have become disengaged from music.

"Relationships, Very Quickly, Turn to Nothing": Loneliness, Social Isolation, and Adaptation to Changing Social Lives Among Persons Living With Dementia and Care Partners.

BACKGROUND AND OBJECTIVES: Persons with dementia and their care partners have known risks for loneliness and social isolation throughout the disease trajectory, yet little is described about social lives in a population heterogeneous for disease stage, syndrome type, and setting. RESEARCH DESIGN AND METHODS: We conducted a secondary analysis of qualitative interviews from multiple studies to triangulate responses from a cohort of persons with dementia (n = 24), and active (n = 33) or bereaved (n = 15) care partners diverse in setting, dementia type and stage, and life experience. Interviews explored challenges related to social lives and were analyzed thematically. RESULTS: Persons with dementia were on average 80 years old (range: 67-94), 38% female, and 78% diagnosed with Alzheimer's dementia; care partners were on average 67 years old (range: 40-87) and 69% female. We identified 3 primary themes. First, dyads lost external social networks due to complex factors, including discomfort of surrounding social networks, caregiving responsibilities, and progressive cognitive deficits. Second, care partners described disruptions of meaningful dyadic relationships due to progressive cognitive and functional deficits, leading to loneliness and anticipatory grief. Third, adaptive strategies centered on care partners facilitating shared social activities and programs addressing caregiver burden. An overarching theme of disease-course accumulation of barriers to social interactions and constant adaptations was present in all themes. DISCUSSION AND IMPLICATIONS: Isolation and loneliness are a shared experience and source of distress for persons with dementia and care partners. Results can inform interventions tailored to individual needs and disease stages of dyads that enhance social connectedness.

The Role of Digital Technologies in Facilitating Psychosocial Resilience to Sudden Social Isolation Among Older Adults: Lessons Learned from the COVID-19 Pandemic.

This study investigated how older adults adopted new technologies in response to sudden social isolation caused by the COVID-19 pandemic and how this adoption was related to their long-term psychosocial well-being. The study involved a 6-month longitudinal survey of 151 older adults and two phone-based focus groups, which informed a semi-structured interview guide and purposive sampling of diverse community-dwelling older adults. We then conducted twenty qualitative interviews and thematic analysis and mapped themes to 6-month quantitative trajectories of psychosocial health. Three themes emerged: first, most participants adopted multiple technologies to maintain social connection and psychosocial well-being. Second, participants felt left behind by certain technologies due to complicated systems or ageist societal norms. Third, pandemic-related community resources promoted technology independence among isolated older adults and those wanting to avoid "burdening" family. Results challenge ageist stereotypes and provide a framework for encouraging access and comfort with multiple technologies to adapt to sudden health crises or disruptive events.

Assessing Technical Feasibility and Acceptability of Telehealth Palliative Care in Nursing Homes.

Background: Over two-thirds of nursing home (NH) residents are eligible for palliative care (PC), yet few receive it, particularly outside of hospice. Little is known about the technical feasibility and acceptability of using telehealth for PC consultations in NHs. Objective: To determine the technical feasibility and acceptability of PC telehealth for NH residents seen by a PC team in the hospital in the previous 30 days. Design: Mixed methods study including data collection from field observations, focus groups about the telehealth experience with content analysis, and a web-based survey about technical feasibility and acceptability. Sample and Approach: Eighteen participants (six PC-eligible NH residents, one PC physician, five family members, six NH nurses) were recruited in 2016 to participate in one of six PC video visits followed by a video-based focus group and web-based survey. Results: All participants were comfortable with the PC video visit format, believed it could improve communication and care coordination, and reported they could see themselves using telehealth in the near future. For technical feasibility, audio quality was rated mostly good/very good (71%) and visual quality was rated fair (50%). Conclusions: PC video visits are technically feasible and acceptable to NH residents, families, and staff, representing an innovative and relatively low-cost opportunity to improve access to needed NH-based PC services. Assessing stakeholder perspectives on the use of this technology can help inform the selection of the proper telehealth platform to meet the clinical and infrastructure needs, as well as protocol modifications required before testing in a larger trial.

Front-Line Hospice Staff Perceptions of Barriers and Opportunities to Discussing Advance Care Planning With Hospice Patients and Their Families.

OBJECTIVES: To understand the facilitators and barriers to hospice staff engagement of patients and surrogates in advance care planning (ACP) conversations. DESIGN: Qualitative study conducted with purposive sampling and semistructured interviews using ATLAS.ti software to assist with template analysis. SETTINGS AND PARTICIPANTS: Participants included 51 hospice professionals (31 clinicians, 13 leaders, and 7 quality improvement administrators) from 4 geographically distinct nonprofit US hospices serving more than 2700 people. MEASURES: Interview domains were derived from the implementation science framework of Capability, Opportunity, Motivation, and Behavior (COM-B), with additional questions soliciting recommendations for behavior change. Differences in themes were reconciled by consensus. The facilitator, barrier, and recommendation themes were organized within the COM-B framework. RESULTS: Capability was facilitated by interdisciplinary teamwork and specified clinical staff roles and inhibited by lack of self-perceived skill in engaging in ACP conversations. Opportunities for ACP occurred during admission to hospice, acute changes, or deterioration in patient condition. Opportunity-related environmental barriers included time constraints such as short patient stay in hospice and workload expectations that prevented clinicians from spending more time with patients and families. Motivation to discuss ACP was facilitated by the employee's goal of providing personalized, patient-centered care. Implicit assumptions about patients' and families' preferences reduced staff's motivation to engage in ACP. Hospice staff made recommendations to improve ACP discussions, including training and modeling practice sessions, earlier introduction of ACP concepts by clinicians in prehospice settings, and increasing workforce diversity to reflect the patient populations the organizations want to reach and cultural competency. CONCLUSIONS AND IMPLICATIONS: Even hospice staff can be uncomfortable discussing death and dying. Yet staff were able to identify what worked well. Solutions to increase behavior of ACP engagement included staff training and modeling practice sessions, introducing ACP prior to hospice, and increasing workforce diversity to improve cultural competency.

"I Didn't Sign Up for This": Perspectives from Persons Living with Dementia and Care Partners on Challenges, Supports, and Opportunities to Add Geriatric Neuropalliative Care to Dementia Specialty Care.

BACKGROUND: In the United States, dementia specialty centers affiliated with centers of excellence for research hold promise as locations to develop innovative, holistic care in care systems otherwise siloed by discipline or payer. OBJECTIVE: We conducted foundational research to inform development of patient-and family-centered palliative care interventions for dementia specialty centers. METHODS: We interviewed persons living with dementia (PLWD), current, and former care partners (CP) recruited from a specialty dementia clinic and purposively selected for variation across disease syndrome and stage. A framework method of thematic analysis included coding, analytic matrices, and pattern mapping. RESULTS: 40 participants included 9 PLWD, 16 current CPs, and 15 former CPs of decedents; 48% impacted by Alzheimer's disease dementia. While help from family, support groups and adult day centers, paid caregiving, and sensitive clinical care were invaluable to PLWD, CPs, or both, these supports were insufficient to navigate the extensive challenges. Disease-oriented sources of distress included symptoms, functional impairment and falls, uncertainty and loss, and inaccessible care. Social and relational challenges included constrained personal and professional opportunities. The obligation and toll of giving or receiving caregiving were challenging. Clinical care challenges for PLWD and/or CPs included care fragmentation, insufficient guidance to inform planning and need for expert interdisciplinary clinical care at home. CONCLUSION: Findings highlight the breadth and gravity of gaps, which surpass the disciplinary focus of either behavioral neurology or palliative care alone. Results can inform the development of novel interventions to add principles of geriatrics and neuropalliative care to dementia care.

Meaningful Activities and Sources of Meaning for Community-Dwelling People Living with Dementia.

OBJECTIVES: To examine how people living with dementia at home engage in meaningful activities, a critical component of quality of life. DESIGN: Ethnographic study design using semistructured interviews, participant-observation, and ethnographic analysis. SETTING AND PARTICIPANTS: Home setting. People living with dementia were recruited through 3 geriatrics programs in the San Francisco Bay Area, along with 1 primary live-in care partner for each. Participants were purposively sampled to maximize heterogeneity of dementia severity and life experience. MEASUREMENTS: We asked participants to self-identify and report meaningful activity engagement prior to dementia onset and during the study period using a structured questionnaire, semistructured dyadic interviews, and observed engagement in activities. Home visits were audio-recorded, transcribed, and inductively analyzed using thematic analysis. RESULTS: Twenty-one people living with dementia (mean age 84 years, 38% women) and 20 care partners (59 years, 85% women), including 40% professionals, 35% spouse/partners, and 15% adult children. Overarching theme: specific activities changed over time but underlying sources of meaning and identity remained stable. As dementia progressed, meaningful activity engagement took 3 pathways. Pathway 1: Activities continued with minimal adaptation when engagement demanded little functional or cognitive ability (eg, watching football on TV). Pathway 2: care partners adapted or replaced activities when engagement required greater functional or cognitive abilities (eg, traveling overseas). This pathway was associated with caregiving experience, nursing training, and strong social support structures. Pathway 3: care partners discontinued meaningful activity engagement. Discontinuation was associated with severe caregiver burden, coupled with illness, injury, or competing caregiving demands severe enough to impact their ability to facilitate activities. CONCLUSIONS AND IMPLICATIONS: For people living with dementia at home, underlying sources of meaning and identity remains stable despite changes in meaningful activity engagement. Many of the factors associated with adaptation vs discontinuation over time are modifiable and can serve as targets for intervention.

Transforming Undergraduate Student Perceptions of Dementia through Music and Filmmaking.

BACKGROUND: With nearly 6 million people with dementia (PWD) in the United States, there is a critical need to build an interprofessional dementia workforce. Among the novel approaches to expanding a new workforce, music and the arts show promise for engaging students and trainees. To understand how and why the arts affect attitudes about and engagement with PWD, we examined a service-learning general education undergraduate course centering on music, filmmaking, and dementia. METHODS: The undergraduate course curriculum brought students to meet with PWD in dementia care settings, build personalized music playlists, coproduce short films about PWD, and write reflective essays. Two researchers independently completed inductive thematic analysis of the films, essays, and course evaluations. Differences were reconciled by consensus. RESULTS: A total of 52 students from three classes completed the course; 24 (46%) were majoring in health sciences. Three key themes emerged: (1) Music helps students connect with people living with dementia in meaningful ways; (2) filmmaking offers students the opportunity to share unique, person-centered stories about dementia and music that empower the voices of PWD; and (3) reflective writing enables students to process new experiences and lessons learned. Unexpectedly, 29 students (56%) reported continued engagement with PWD in their careers, families, and communities after course completion. CONCLUSION: This study identifies reproducible ways in which undergraduate arts courses thematically focused on dementia not only transform student perceptions about dementia but change the ways in which those students choose to engage with PWD following course completion. Arts and music departments may represent an untapped resource for building a geriatrics workforce. J Am Geriatr Soc 68:1083-1089, 2020.

"Now I Write Songs": Growth and Reciprocity After Long-Term Nursing Home Placement.

BACKGROUND AND OBJECTIVES: Nursing home residents have a need for activities that are meaningful, yet mandated scheduled activities remain poorly characterized. In order to understand how scheduled activities provide meaning for nursing home residents, we conducted a study of daily life in a nursing home with a robust activities program. RESEARCH DESIGN AND METHODS: This 2-year, longitudinal ethnographic study embedded an ethnographer into the activities department of a 430-bed, not-for-profit, faith-based nursing home. Forty-three interviews and more than 250 hr of participant-observation were conducted, with a focus on creative arts and religious activities. Thirty-two residents and 15 activities staff were followed more than 12-23 months. Data were coded concurrently, and emerging themes challenged through purposive recruitment until thematic saturation was reached. RESULTS: Scheduled activities in the nursing home offered opportunities for learning and personal growth regardless of functional or cognitive disability. Three major themes emerged. Artistic development included new self-identification as a musician, painter, or sculptor through arts programming. Intellectual and spiritual growth involved the use of activities to support ongoing practice and study. Reciprocity occurred as residents used the arts to remain contributing members of their institutional society, reciprocating with the institution that housed them. DISCUSSION AND IMPLICATIONS: Nursing home scheduled activities can facilitate the transformation of identity from resident or patient to the normalized social roles of artist, Torah scholar, and productive member of society.

Hospice Staff Perspectives on Caring for People with Dementia: A Multisite, Multistakeholder Study.

Background: In the United States, 45% of people enrolled in hospice have dementia. We know little about how hospice professionals facilitate preference-aligned end-of-life care for people with dementia (PWD) and their families. Objective: To examine hospice stakeholders' perspectives on caring for PWD and their families. Design: Multisite qualitative study using semi-structured interviews with interdisciplinary hospice clinicians, leaders, and administrators. The interdisciplinary team used the constant comparative method to identify, code, and characterize relevant themes. Setting/participants: Four geographically distinct nonprofit U.S. hospice organizations. Fifty-one hospice employees: 61% clinical staff, 25% executive leaders, and 14% administrators. Measurements: Interview domains included participants' practices of engaging patients/families in discussions of preferences for end-of-life care and professional opinions of changes over time. Cross-topic probes focused on delivering hospice care to PWD and their proxies/families. Results: Four themes regarding caring for PWD in hospice. (1) Dementia prevalence in hospice is increasing and some hospices are developing programs to accommodate specific needs. (2) Setting impacts discussions of preferences and care decisions. (3) Caring for PWD on hospice poses unique challenges caused by (i) perceptions that dementia is not terminal, (ii) a lack of advance care planning discussions before hospice admission, and (iii) proxy decision-makers who were inadequately prepared for their role. (4) Hospice regulatory and policy changes disproportionately impact PWD. Conclusions: Hospice professionals perceive increasing demand for, and multilevel challenges to, caring for PWD. Clinicians "upstream" from hospice may help by engaging patients and proxies in discussions of preferences for end-of-life care and providing anticipatory guidance.

Sense of Control in End-of-Life Decision-Making.

OBJECTIVES: To explore how older adults in the community with a limited life expectancy make healthcare decisions and the processes used when they are not in an acute crisis. DESIGN: Grounded theory. SETTING: Medical programs and geriatrics clinics at the University of California, San Francisco, and the San Francisco Veterans Affairs Medical Center. PARTICIPANTS: Community-dwelling adults aged 67 to 98 with a life expectancy of less than 1 year (N = 20). MEASUREMENTS: In-depth semistructured interviews in participants' homes. Constant comparative analysis was used to develop codes and identify themes. RESULTS: Participants generally delegated decisions to others, expressing their wishes by describing desired end-of-life outcomes and highlighting meaningful aspects of their lives. They did this in the belief that the delegate would make appropriate decisions on their behalf. In this way, participants were able to achieve a sense of control without being in control of decisions. Four themes emerged from the analysis that reflect the various approaches participants used to articulate their goals and maintain a sense of control: direct communication, third-party analogies, adaptive denial, and engaged avoidance. CONCLUSION: These findings challenge the prevailing view of personal autonomy. These older adults suggest a path to decision-making that focuses on priorities and goals, allowing them to take a more-passive approach to decision-making while still maintaining a sense of control.