Older Adults' Unmet Needs at the End of Life: A Cross-Country Comparison of the United States and England.

Objectives: This study aimed to compare the end-of-life (EOL) experiences in concentration with place of death, for older adults in the U.S. and England. Methods: Weighted comparative analysis was conducted using harmonized Health and Retirement Study and English Longitudinal Study of Ageing datasets covering the period of 2006-2012. Results: At the EOL, more older adults in the U.S. (64.14%) than in England (54.09%) had unmet needs (I/ADLs). Home was the main place of death in the U.S. (47.34%), while it was the hospital in England (58.01%). Gender, marital status, income, place of death, previous hospitalization, memory-related diseases, self-rated health, and chronic diseases were linked to unmet needs in both countries. Discussion: These findings challenge the existing assumptions about EOL experiences and place of death outcomes, emphasizing the significance of developing integrated care models to bolster support for essential daily activities of older adults at the EOL.

How I want technology used in my care: Learning from documented choices of people living with dementia using a dyadic decision making tool.

While technologies for aging in place are promoted to support care partners and people living with dementia, perspectives of people living with dementia are underrepresented in both use decisions among families and discussions within academia and industry. This mixed-methods study examined the use preferences of twenty-nine people living with mild Alzheimer's disease (AD) for four categories of technologies: location tracking, in-home sensors, web-cameras, and virtual companion robots. Participants completed a novel dyadic intervention, Let's Talk Tech, where they documented their preferences of the four technology categories for care planning purposes. Post-test interviews were thematically analyzed and provide insight into selection processes. Technology preferences varied considerably by and within participant living with mild AD. Excepting location tracking, non-technology and low-technology options were more desirable than the featured technologies. Control over technology use was of great importance to people living with AD. Considerations given to technology preference selection imperfectly fit within the new Health Technology Acceptance Model (H-TAM) developed for older adults. These findings underscore the importance of including people living with dementia in decision making about technologies to support care at home and the need for further personalization and tailorable technological devices to accommodate and align with their preferences.

Preliminary Efficacy of Let's Talk Tech: Technology Use Planning for Dementia Care Dyads.

Background and Objective: Care partners of people living with dementia require support to knowledgeably navigate decision making about how and when to use monitoring technologies for care purposes. We conducted a pilot study of a novel self-administered intervention, "Let's Talk Tech," for people living with mild dementia and their care partners. This paper presents preliminary efficacy findings of this intervention designed to educate and facilitate dyadic communication about a range of technologies used in dementia care and to document the preferences of the person living with dementia. It is the first-of-its-kind decision-making and planning tool with a specific focus on technology use. Research Design and Methods: We used a 1-group pretest-post-test design and paired t tests to assess change over 2 time periods in measures of technology comprehension, care partner knowledge of the participant living with mild Alzheimer's disease's (AD) preferences, care partner preparedness to make decisions about technology use, and mutual understanding. Thematic analysis was conducted on postintervention interview transcripts to elucidate mechanisms and experiences with Let's Talk Tech. Results: Twenty-nine mild AD dementia care dyads who live together completed the study. There was statistically significant improvement with medium and large effect sizes on outcome measures of care partners' understanding of each technology, care partners' perceptions of the person living with dementia's understanding of each technology, knowledge of the person living with dementia's preferences, decision-making preparedness, and care partners' feelings of mutual understanding. Participants reported that it helped them have important and meaningful conversations about using technology. Discussion and Implications: Let's Talk Tech demonstrated promising preliminary efficacy on targeted measures that can lead to informed, shared decision making about technologies used in dementia care. Future studies should assess efficacy with larger samples and more diverse sample populations in terms of race, ethnicity, and dementia type.

Companion robots to mitigate loneliness among older adults: Perceptions of benefit and possible deception.

Objective: Given growing interest in companion robots to mitigate loneliness, large-scale studies are needed to understand peoples' perspectives on the use of robots to combat loneliness and attendant ethical issues. This study examines opinions about artificial companion (AC) robots regarding deception with dementia and impact on loneliness. Methods: Data are from a survey of 825 members of the OHSU Research via Internet Technology and Experience cohort (response rate = 45%). Sixty percent (n = 496) of the age diverse sample (range = 25-88; M = 64; SD = 13.17) is over 64, allowing us to compare across age and consider current and future older adults. Ordinal logistic regressions examined relationships between age, health, and other socio-demographic characteristics and perceptions of impact on loneliness and comfort with deception. Results: Most participants (68.7%) did not think an AC robot would make them feel less lonely and felt somewhat-to-very uncomfortable (69.3%) with the idea of being allowed to believe that an artificial companion is human. In adjusted models, one additional year of age was associated with lower likelihood of perceived benefit of reducing loneliness [Odds Ratio (OR) = 0.98; (0.97-0.99), p = 0.003] and lower comfort with deception [OR = 0.99; (0.97-1.00), p = 0.044]. Being female was associated with lower likelihood of comfort with deception [OR = 0.68; (0.50-0.93), p = 0.014] and high confidence using computers with greater comfort [OR = 2.18; (1.42-3.38), p < 0.001]. Discussion: There was not strong support for AC robots to mitigate loneliness. Most participants were uncomfortable with this form of deception, indicating need for design solutions for those who want to avoid this possibility, as well as greater attentiveness to desirability and comfort across age and gender.

Kinless Older Adults With Dementia: Qualitative Analysis of Data From the Adult Changes in Thought Study.

OBJECTIVES: To examine the circumstances and needs of older adults who were "kinless," defined as having no living spouse or children, when they developed dementia. METHODS: We conducted a secondary analysis of information from the Adult Changes in Thought study. Among 848 participants diagnosed with dementia between 1994 and 2016, we identified 64 who had no living spouse or child at dementia onset. We then conducted a qualitative analysis of administrative documents pertaining to these participants: handwritten comments recorded after each study visit, and medical history documents containing clinical chart notes from participants' medical records. RESULTS: In this community-dwelling cohort of older adults diagnosed with dementia, 8.4% were kinless at dementia onset. Participants in this sample had an average age of 87 years old, half lived alone, and one third lived with unrelated persons. Through inductive content analysis, we identified 4 themes that describe their circumstances and needs: (1) life trajectories, (2) caregiving resources, (3) care needs and gaps, and (4) turning points in caregiving arrangements. DISCUSSION: Our qualitative analysis reveals that the life trajectories that led members of the analytic cohort to be kinless at dementia onset were quite varied. This research highlights the importance of nonfamily caregivers and participants' own roles as caregivers. Our findings suggest that clinicians and health systems may need to work with other parties to directly provide dementia caregiving support rather than rely on family, and address factors such as neighborhood affordability that particularly affect older adults who have limited family support.

Implementation and impact of a Dementia Friends pilot.

INTRODUCTION: Dementia Friends is a dementia awareness program that trains lay leaders (called "dementia champions") to give presentations about dementia to combat stigma in their community. OBJECTIVE: In this mixed methods study, we aimed to evaluate the impact and implementation of a pilot Dementia Friends program in Washington State to assess whether it improved attitudes towards people living with dementia. METHOD: Fifteen champions were recruited, who organized 22 Dementia Friends sessions, reaching 214 Dementia Friends participants. We collected data through interviews with champions and surveys administered to Dementia Friends participants before, immediately after, and 1-month after attending a Dementia Friends session. The survey collected demographic information and measured respondent attitudes towards people living with dementia using the Dementia Attitudes Scale. RESULTS: Quantitative analysis showed that Dementia Attitude scores improved after a Dementia Friends session; this improvement was maintained through the 1-month follow-up. In qualitative analysis of champion interviews, we identified several suggestions regarding implementation of the Dementia Friends program, which could strengthen the program and better support champions in their role, such as increasing logistical assistance during participant recruitment. CONCLUSION: Dementia Friends sessions were effective in improving participant attitudes towards people living with dementia and inspiring ongoing action towards building Dementia-Friendly communities. Champions found deep meaning in their role, but would benefit from increased support to make the volunteer role more sustainable. Our findings can inform efforts to successfully deliver Dementia Friends in other locations.

The Role of Trust in Older Adult Service Provision at the Onset of the COVID-19 Pandemic.

The COVID-19 pandemic caused near immediate service delivery adaptation among social service and healthcare sectors. Findings from in-depth interviews with 45 senior leaders of social services and healthcare organizations serving older adults in Washington State elucidate the role of trust in service provision at the onset of the pandemic. First, a history of trust facilitated service adaptation. Intentional outreach, programs, and culturally responsive services sustained trust with service recipients. Providing services and information in an older adult's preferred language built trust. Community networks facilitated and reflected trust between organizations and older adults. Finally, mistrust was prevalent for clients who perceived a high risk of experiencing negative consequences from accessing services. Our findings support the need for culturally and linguistically diverse services. To improve trust, the aging network should strengthen and expand partnerships with community-based organizations who have established trust through history, intentionality, and relevance to their service populations..

Development of a behavioural framework for dementia care partners' fall risk management.

BACKGROUND: Although older adults living with dementia (OLWD) are at high risk for falls, few strategies that effectively reduce falls among OLWD have been identified. Dementia care partners (hereinafter referred to as "care partners") may have a critical role in fall risk management (FRM). However, little is known about the ways care partners behave that may be relevant to FRM and how to effectively engage them in FRM. METHODS: Semi-structured, in-depth interviews were conducted with 14 primary care partners (age: 48-87; 79% women; 50% spouses/partners; 64% completed college; 21% people of colour) of community-dwelling OLWD to examine their FRM behaviours, and their observations of behaviours adopted by other care partners who were secondary in the caring role. RESULTS: The analysis of interview data suggested a novel behavioural framework that consisted of eight domains of FRM behaviours adopted across four stages. The domains of FRM behaviours were 1. functional mobility assistance, 2. assessing and addressing health conditions, 3. health promotion support, 4. safety supervision, 5. modification of the physical environment, 6. receiving, seeking, and coordinating care, 7. learning, and 8. self-adjustment. Four stages of FRM included 1. supporting before dementia onset, 2. preventing falls, 3. preparing to respond to falls, and 4. responding to falls. FRM behaviours varied by the care partners' caring responsibilities. Primary care partners engaged in behaviours from all eight behavioural domains; they often provided functional mobility assistance, safety supervision, and modification of the physical environment for managing fall risk. They also adopted behaviours of assessing and addressing health conditions, health promotion support, and receiving, seeking and coordinating care without realizing their relevance to FRM. Secondary care partners were reported to assist in health promotion support, safety supervision, modification of the physical environment, and receiving, seeking, and coordinating care. CONCLUSIONS: The multi-domain and multi-stage framework derived from this study can inform the development of tools and interventions to effectively engage care partners in managing fall risk for community-dwelling OLWD.

Meeting Older Adults' Food Needs During the COVID-19 Pandemic: Lessons And Challenges from Washington State.

The COVID-19 pandemic threatened the ability of nutrition providers to address food insufficiency among older adults. Findings from Household Pulse Survey data and interviews with 23 service leaders in Washington state during the summer of 2020 point to key organizational practices that should inform future emergency food assistance planning. Organizations deeply connected to and trusted by racially and ethnically diverse, unhoused, and low-income older adults are critical to addressing disparities in food insufficiency. Stable and flexible increases in funding would allow these organizations to maintain the effective and culturally-relevant service adaptations they implemented in the first months of the pandemic.

Algorithmic harms and digital ageism in the use of surveillance technologies in nursing homes.

Ageism has not been centered in scholarship on AI or algorithmic harms despite the ways in which older adults are both digitally marginalized and positioned as targets for surveillance technology and risk mitigation. In this translation paper, we put gerontology into conversation with scholarship on information and data technologies within critical disability, race, and feminist studies and explore algorithmic harms of surveillance technologies on older adults and care workers within nursing homes in the United States and Canada. We start by identifying the limitations of emerging scholarship and public discourse on "digital ageism" that is occupied with the inclusion and representation of older adults in AI or machine learning at the expense of more pressing questions. Focusing on the investment in these technologies in the context of COVID-19 in nursing homes, we draw from critical scholarship on information and data technologies to deeply understand how ageism is implicated in the systemic harms experienced by residents and workers when surveillance technologies are positioned as solutions. We then suggest generative pathways and point to various possible research agendas that could illuminate emergent algorithmic harms and their animating force within nursing homes. In the tradition of critical gerontology, ours is a project of bringing insights from gerontology and age studies to bear on broader work on automation and algorithmic decision-making systems for marginalized groups, and to bring that work to bear on gerontology. This paper illustrates specific ways in which important insights from critical race, disability and feminist studies helps us draw out the power of ageism as a rhetorical and analytical tool. We demonstrate why such engagement is necessary to realize gerontology's capacity to contribute to timely discourse on algorithmic harms and to elevate the issue of ageism for serious engagement across fields concerned with social and economic justice. We begin with nursing homes because they are an understudied, yet socially significant and timely setting in which to understand algorithmic harms. We hope this will contribute to broader efforts to understand and redress harms across sectors and marginalized collectives.

Control Matters in Elder Care Technology:: Evidence and Direction for Designing It In.

Studies find that older adults want control over how technologies are used in their care, but how it can be operationalized through design remains to be clarified. We present findings from a large survey (n=825) of a well-characterized U.S. online cohort that provides actionable evidence of the importance of designing for control over monitoring technologies. This uniquely large, age-diverse sample allows us to compare needs across age and other characteristics with insights about future users and current older adults (n=496 >64), including those concerned about their own memory loss (n=201). All five control options, which are not currently enabled, were very or extremely important to most people across age. Findings indicate that comfort with a range of care technologies is contingent on having privacy- and other control-enabling options. We discuss opportunities for design to meet these user needs that demand course correction through attentive, creative work.

Advance Planning for Technology Use in Dementia Care: Development, Design, and Feasibility of a Novel Self-administered Decision-Making Tool.

BACKGROUND: Monitoring technologies are used to collect a range of information, such as one's location out of the home or movement within the home, and transmit that information to caregivers to support aging in place. Their surveilling nature, however, poses ethical dilemmas and can be experienced as intrusive to people living with Alzheimer disease (AD) and AD-related dementias. These challenges are compounded when older adults are not engaged in decision-making about how they are monitored. Dissemination of these technologies is outpacing our understanding of how to communicate their functions, risks, and benefits to families and older adults. To date, there are no tools to help families understand the functions of monitoring technologies or guide them in balancing their perceived need for ongoing surveillance and the older adult's dignity and wishes. OBJECTIVE: We designed, developed, and piloted a communication and education tool in the form of a web application called Let's Talk Tech to support family decision-making about diverse technologies used in dementia home care. The knowledge base about how to design online interventions for people living with mild dementia is still in development, and dyadic interventions used in dementia care remain rare. We describe the intervention's motivation and development process, and the feasibility of using this self-administered web application intervention in a pilot sample of people living with mild AD and their family care partners. METHODS: We surveyed 29 mild AD dementia care dyads living together before and after they completed the web application intervention and interviewed each dyad about their experiences with it. We report postintervention measures of feasibility (recruitment, enrollment, and retention) and acceptability (satisfaction, quality, and usability). Descriptive statistics were calculated for survey items, and thematic analysis was used with interview transcripts to illuminate participants' experiences and recommendations to improve the intervention. RESULTS: The study enrolled 33 people living with AD and their care partners, and 29 (88%) dyads completed the study (all but one were spousal dyads). Participants were asked to complete 4 technology modules, and all completed them. The majority of participants rated the tool as having the right length (>90%), having the right amount of information (>84%), being very clearly worded (>74%), and presenting information in a balanced way (>90%). Most felt the tool was easy to use and helpful, and would likely recommend it to others. CONCLUSIONS: This study demonstrated that our intervention to educate and facilitate conversation and documentation of preferences is preliminarily feasible and acceptable to mild AD care dyads. Effectively involving older adults in these decisions and informing care partners of their preferences could enable families to avoid conflicts or risks associated with uninformed or disempowered use and to personalize use so both members of the dyad can experience benefits.

Domain Experts on Dementia-Care Technologies: Mitigating Risk in Design and Implementation.

There is an urgent need to learn how to appropriately integrate technologies into dementia care. The aims of this Delphi study were to project which technologies will be most prevalent in dementia care in five years, articulate potential benefits and risks, and identify specific options to mitigate risks. Participants were also asked to identify technologies that are most likely to cause value tensions and thus most warrant a conversation with an older person with mild dementia when families are deciding about their use. Twenty-one interdisciplinary domain experts from academia and industry in aging and technology in the U.S. and Canada participated in a two-round online survey using the Delphi approach with an 84% response rate and no attrition between rounds. Rankings were analyzed using frequency counts and written-in responses were thematically analyzed. Twelve technology categories were identified along with a detailed list of risks and benefits for each. Suggestions to mitigate the most commonly raised risks are categorized as follows: intervene during design, make specific technical choices, build in choice and control, require data transparency, place restrictions on data use and ensure security, enable informed consent, and proactively educate users. This study provides information that is needed to navigate person-centered technology use in dementia care. The specific recommendations participants offered are relevant to designers, clinicians, researchers, ethicists, and policy makers and require proactive engagement from design through implementation.

The Consequences of Ageist Language are upon us.

The COVID‒19 pandemic has highlighted the ease in which ageist language is employed and ageist stereotypes are used to characterize older adults. These are harmful and display an impressive lack of future thinking - as younger and middle-aged adults who use this language and forward these concepts also hope to live long lives. The disproportionately negative outcomes for older adults in this pandemic in part, reflect social and economic inequalities that are manifest throughout the life course of marginalized groups including persons of color. They also reflect major problems with institutional living be it in prisons or nursing homes. Social workers and allied professionals can work to address these manifestations of ageism in part by employing inclusive language - as advised by the Reframing Aging Project, working to build and support strong intergenerational relationships, working to eradicate social and economic disparities at all life stages, and advocating for a more critical look at institutionalization of older adults.

Leadership, Staff Empowerment, and the Retention of Nursing Assistants: Findings From a Survey of U.S. Nursing Homes.

OBJECTIVES: We examined the relationship between nursing assistant (NA) retention and a measure capturing nursing home leadership and staff empowerment. DESIGN: Cross-sectional study using nationally representative survey data. SETTING AND PARTICIPANTS: Data from the Nursing Home Culture Change 2016-2017 Survey with nursing home administrator respondents (N = 1386) were merged with facility-level indicators. METHODS: The leadership and staff empowerment practice score is an index derived from responses to 23 survey items and categorized as low, medium, and high. Multinomial logistic regression weighted for sample design and to address culture-change selection bias identified factors associated with 4 categories of 1-year NA retention: 0% to 50%, 51% to 75%, 76% to 90%, and 91% to 100%. RESULTS: In an adjusted model, greater leadership and staff empowerment levels were consistently associated with high (76%-90% and 91%-100%) relative to low (0%-50%) NA retention. Occupancy rate, chain status, licensed practical nurse and certified nursing assistant hours per day per resident, nursing home administrator turnover, and the presence of a union were also significantly associated with higher categories of retention (vs low retention). CONCLUSIONS AND IMPLICATIONS: Modifiable leadership and staff empowerment practices are associated with NA retention. Associations are most significant when examining the highest practice scores and retention categories. Nursing homes seeking to improve NA retention might look to leadership and staff empowerment practice changes common to culture change.

Why Older Adults and Their Children Disagree About In-Home Surveillance Technology, Sensors, and Tracking.

BACKGROUND AND OBJECTIVES: Despite the surveilling nature of technologies that allow caregivers to remotely monitor location, movements, or activities, the potential differences in comfort with remote monitoring between caregivers and care recipients have not been examined in depth. On the dyad and aggregate level, we compare preferences of older adult women and their adult children for three remote monitoring technologies. Their assessments of each technology's impact on privacy, safety, independence, freedom, relationship with family member, social life, and identity are also compared. RESEARCH DESIGN AND METHODS: This dyadic study used cognitive-based interview probing and value-centered design methods. Twenty-eight individual, in-depth, structured interviews were conducted with 18 women who are Meals on Wheels clients and 10 of their adult children. RESULTS: Meals on Wheels participants reported multiple chronic conditions and an average of 1.7 ADL and 3.3 IADL difficulties; two thirds were enrolled in Medicaid. Adult children preferred each technology more than their mothers did and underestimated both their mothers' ability to comprehend the functions of the technologies and the importance of engaging them fully in decision making. Most were confident that they could persuade their mothers to adopt. For both groups, privacy was the most-cited concern, and participants perceived significant overlap between values of privacy, independence, identity, and freedom. DISCUSSION AND IMPLICATIONS: Studying privacy in isolation overlooks privacy's instrumental role in enabling other values. Shared decision-making tools are needed to promote remote monitoring use consistent with older adults' values and to prevent conflict and caregiver overreach.

Monitoring the Monitors: Medicaid Integration of Passive Remote Monitoring Technology.

Implementation of passive remote monitoring is advancing faster than our knowledge base about appropriate and ethical use. For all the media and research attention these technologies are getting, there has been very little discussion about how they are positioned to be integrated into health plans, yet their integration is key to how they will be incorporated into social work practice. As coverage of passive remote monitoring technologies expands in Medicaid home and community-based services (HCBS), new policies that support informed decision-making, consenting processes, and regulations for ethical, appropriate use are urgently needed. Research translation often trails policy, but the rapid development and implementation of technologies that passively collect and transmit new information about older adults call for a more responsive approach. In this commentary, I describe passive remote monitoring technologies, their implementation in Medicaid HCBS, and ethical issues. I conclude with specific suggestions for policy and practice to start addressing these issues.

Sensor-Based Passive Remote Monitoring and Discordant Values: Qualitative Study of the Experiences of Low-Income Immigrant Elders in the United States.

BACKGROUND: Remote monitoring technologies are positioned to mitigate the problem of a dwindling care workforce and disparities in access to care for the growing older immigrant population in the United States. To achieve these ends, designers and providers need to understand how these supports can be best provided in the context of various sociocultural environments that shape older adults' expectations and care relationships, yet few studies have examined how the same remote monitoring technologies may produce different effects and uses depending on what population is using them in a particular context. OBJECTIVE: This study aimed to examine the experiences and insights of low-income, immigrant senior residents, family contacts, and staff of housing that offered a sensor-based passive monitoring system designed to track changes in movement around the home and trigger alerts for caregivers. The senior housing organization had been offering the QuietCare sensor system to its residents for 6 years at the time of the study. We are interested in adoption and discontinuation decisions and use over time, rather than projected acceptance. Our research question is how do cultural differences influence use and experiences with this remote monitoring technology? The study does not draw generalizable conclusions about how cultural groups interact with a given technology, but rather, it examines how values are made visible in elder care technology interactions. METHODS: A total of 41 participants (residents, family, and staff) from 6 large senior housing independent living apartment buildings were interviewed. Interviews were conducted in English and Korean with these participants who collectively had immigrated to the United States from 10 countries. RESULTS: The reactions of immigrant older adults to the passive monitoring system reveal that this tool offered to them was often mismatched with their values, needs, and expectations. Asian elders accepted the intervention social workers offered largely to appease them, but unlike their US-born counterparts, they adopted reluctantly without hope that it would ameliorate their situation. Asian immigrants discontinued use at the highest rate of all residents, and intergenerational family cultural conflict contributed to this termination. Social workers reported that none of the large population of Russian-speaking residents agreed to use QuietCare. Bilingual and bicultural social workers played significant roles as cultural navigators in the promotion of QuietCare to residents. CONCLUSIONS: This research into the interactions of culturally diverse people with the same monitoring technology reveals the significant role that social values and context play in shaping how people and families interact with and experience elder care interventions. If technology-based care services are to reach their full potential, it will be important to identify the ways in which cultural values produce different uses and responses to technologies intended to help older adults live independently.