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.

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.

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.

The Prevalence of Culture Change Practice in US Nursing Homes: Findings From a 2016/2017 Nationwide Survey.

BACKGROUND AND OBJECTIVES: Given the dynamic nursing home (NH) industry and evolving regulatory environment, depiction of contemporary NH culture-change (person/resident-centered) care practice is of interest. Thus, we aimed to portray the 2016/2017 prevalence of NH culture change-related processes and structures and to identify factors associated with greater practice prevalence. RESEARCH DESIGN AND METHODS: We administered a nationwide survey to 2142 NH Administrators at NHs previously responding to a 2009/2010 survey. Seventy-four percent of administrators (1583) responded (with no detectable nonresponse bias) enabling us to generalize (weighted) findings to US NHs. From responses, we created index scores for practice domains of resident-centered care, staff empowerment, physical environment, leadership, and family and community engagement. Facility-level covariate data came from the survey and the Certification and Survey Provider Enhanced Reporting system. Ordered logistic regression identified the factors associated with higher index scores. RESULTS: Eighty-eight percent of administrators reported some facility-level involvement in NH culture change, with higher reported involvement consistently associated with higher domain index scores. NHs performed the best (82.6/100 weighted points) on the standardized resident-centered care practices index, and had the lowest scores (54.8) on the family and community engagement index. Multivariable results indicate higher index scores in NHs with higher leadership scores and in states having Medicaid pay-for-performance with culture change-related quality measures. CONCLUSIONS: The relatively higher resident-centered care scores (compared with other domain scores) suggest an emphasis on person-centered care in many US NHs. Findings also support pay-for-performance as a potential mechanism to incentivize preferred NH practice.

Medicaid Becomes the First Third-Party Payer to Cover Passive Remote Monitoring for Home Care: Policy Analysis.

BACKGROUND: Recent years have seen an influx of location-tracking, activity-monitoring sensors, and Web-cameras to remotely monitor the safety of older adults in their homes and to reduce reliance on in-person assistance. The state of research on these monitoring technologies leaves open crucial financial, social, and ethical cost-benefit questions, which have prevented widespread use. Medicaid is now the first large third-party payer in the United States to pay for these technologies, and their use is likely to increase as states transition to managed long-term services and supports (MLTSS). OBJECTIVES: This is the first study to examine how state Medicaid programs are treating passive remote monitoring technologies. This study identifies (1) which states allow location tracking, sensor systems, and cameras; (2) what policies are in place to track their use; (3) what implementation processes and program monitoring mechanisms are in place; and (4) what related insights Medicaid program stakeholders would like to learn from researchers. METHODS: Interviews were conducted with 43 state, federal, and managed care organization (MCO) Medicaid program stakeholders about how these technologies are used in state waivers serving community-dwelling older adults in 15 states, and what policies are in place to regulate them. The interviews were analyzed by the research team using the framework analysis method for applied policy research. RESULTS: Two-thirds of the states cover location tracking and activity-monitoring sensors and one-third cover cameras, but only 3 states have specific service categories that allow them to track when they are paying for any of these technologies, impeding regulation and understanding of their use at the state and federal level. Consideration of ethical and social risks is limited, and states struggle to understand which circumstances warrant use. They are further challenged by extreme resource restrictions and transitions to MLTSS by MCOs inexperienced in serving this growing "high-need, high-cost" population. CONCLUSIONS: Decisions about Medicaid reimbursement of technologies that have the potential to dramatically alter the way older adults receive supportive services are being made without research on their use, social and ethical implications, or outcomes. At a minimum, new service categories are needed to enable oversight. Participants prioritized 3 research aims to inform practice: (1) determine cost-effectiveness; (2) identify what type of information beneficiaries want to be generated and whom they want it to be shared with; and (3) understand how to support ethical decision making for beneficiaries with cognitive impairment. These findings provide direction for future research and reveal that greater interaction between policy makers and researchers in this field is needed.

Time to reinvent the science of dementia: the need for care and social integration.

OBJECTIVES: The increasing number of older adults with dementia is a large and growing public health problem. Alzheimer's disease, the prevailing form of dementia, is projected to quadruple worldwide. To date, the care and social integration of individuals with dementia is complicated by limited collaborations between biomedicine and other disciplines. The objective of this paper is therefore to reflect on the orientation of biomedicine with regard to the science of dementia, and to articulate a path for moving forward. METHODS: The authors drew upon, and expanded, the insights of an interdisciplinary, international workshop entitled 'Bioethics and the Science of Aging: The Case of Dementia' held in October 2012 at the University of California in Berkeley. RESULTS: The care of individuals with dementia compels solid interdisciplinary collaborations. There are several issues affecting the care of individuals with dementia: (1) an evolving definition of dementia; (2) the ambiguous benefits of the diagnosis of dementia; (3) ethical conflicts concerning consent processes and clinical trials; and (4) a limited understanding of the perspective of the person with dementia. CONCLUSION: We argue that it is time for a renewed dialogue between biomedicine and other disciplines -- particularly public health, the social sciences, the medical humanities and bioethics. This interdisciplinary dialogue would facilitate a process of self-reflection within biomedicine. This dialogue will also provide the foundation for equitable public health interventions and will further prioritize the values and preferences of individuals with dementia, as well as their care and social integration.

Technology-based innovation for independent living: policy and innovation in the United Kingdom, Scandinavia, and the United States.

Interest in utilizing technology to help older adults remain living at home is growing; however, uptake remains low. We present a conceptual framework for understanding independent living technology innovation within health and social services. Public policy and innovation in the United States, the United Kingdom, and Scandinavia are profiled as case studies. In all profiled countries, independent living technology is more rapidly advancing than associated state policy, regulation, and payment systems. The findings from this comparative analysis reveal areas for further exploration, including policy subsystem environments in which technologies and services are regulated, as well as trends and desires of older adults and their caregivers within particular cultural contexts.

Technology Usability for People Living With Dementia: Concept Analysis.

BACKGROUND: Usability is a key indicator of the quality of technology products. In tandem with technological advancements, potential use by individuals with dementia is increasing. However, defining the usability of technology for individuals with dementia remains an ongoing challenge. The diverse and progressive nature of dementia adds complexity to the creation of universal usability criteria, highlighting the need for focused deliberations. Technological interventions offer potential benefits for people living with dementia and caregivers. Amid COVID-19, technology's role in health care access is growing, especially among older adults. Enabling the diverse population of people living with dementia to enjoy the benefits of technologies requires particular attention to their needs, desires, capabilities, and vulnerabilities to potential harm from technologies. Successful technological interventions for dementia require meticulous consideration of technology usability. OBJECTIVE: This concept analysis aims to examine the usability of technology in the context of individuals living with dementia to establish a clear definition for usability within this specific demographic. METHODS: The framework by Walker and Avant was used to guide this concept analysis. We conducted a literature review spanning 1984 to 2024, exploring technology usability for people with dementia through the PubMed, Web of Science, and Google Scholar databases using the keywords "technology usability" and "dementia." We also incorporated clinical definitions and integrated interview data from 29 dyads comprising individuals with mild Alzheimer dementia and their respective care partners, resulting in a total of 58 older adults. This approach aimed to offer a more comprehensive portrayal of the usability needs of individuals living with dementia, emphasizing practical application. RESULTS: The evidence from the literature review unveiled that usability encompasses attributes such as acceptable learnability, efficiency, and satisfaction. The clinical perspective on dementia stages, subtypes, and symptoms underscores the importance of tailored technology usability assessment. Feedback from 29 dyads also emphasized the value of simplicity, clear navigation, age-sensitive design, personalized features, and audio support. Thus, design should prioritize personalized assistance for individuals living with dementia, moving away from standardized technological approaches. Synthesized from various sources, the defined usability attributes for individuals living with dementia not only encompass the general usability properties of effectiveness, efficiency, and satisfaction but also include other key factors: adaptability, personalization, intuitiveness, and simplicity, to ensure that technology is supportive and yields tangible benefits for this demographic. CONCLUSIONS: Usability is crucial for people living with dementia when designing technological interventions. It necessitates an understanding of user characteristics, dementia stages, symptoms, needs, and tasks, as well as consideration of varied physical requirements, potential sensory loss, and age-related changes. Disease progression requires adapting to evolving symptoms. Recommendations include versatile, multifunctional technology designs; accommodating diverse needs; and adjusting software functionalities for personalization. Product feature classification can be flexible based on user conditions.

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.

Care Partners' Engagement in Preventing Falls for Community-Dwelling Older People With Dementia.

BACKGROUND AND OBJECTIVES: Little is known about how to prevent falls in community-dwelling older people with dementia. Although their care partners adopt various behaviors to prevent their falls, it is unclear if these behaviors reduce falls for those with different levels of fall risk. RESEARCH DESIGN AND METHODS: Linking the 2015 and 2016 National Health and Aging Trends Study and the 2015 National Study of Caregiving (NSOC), we identified 390 community-dwelling older people with dementia with 607 care partners. We selected 26 NSOC items representing fall risk management (FRM) behaviors. We examined the prevalence and dimensionality of these behaviors and investigated associations between care partners' behaviors in 2015 (T1) and older people's falls in 2016 (T2) stratified by their fall incidence at T1, adjusting for covariates. RESULTS: Five domains of FRM were identified: mobility and safety assistance, medical service coordination, health management, social service coordination, and accommodation. For those who did not fall at T1, mobility and safety assistance and social service coordination were each associated with an increased risk of falling at T2 (adjusted incidence rate ratio [aIRR] = 1.39, 95% confidence interval [CI] = 1.06-1.83, p = .019, aIRR = 1.25, 95% CI = 1.01-1.55, p = .043). For those who had fallen at T1, social service coordination was associated with a decreased risk of falling at T2 (aIRR = 0.83, 95% CI = 0.73-0.94, p = .004). DISCUSSION AND IMPLICATIONS: The different impacts of dementia care partners' FRM behaviors emphasize the need to address specific behaviors when involving care partners in preventing falls for older people with dementia at varying levels of fall risk.

Addressing the Black Box of AI-A Model and Research Agenda on the Co-constitution of Aging and Artificial Intelligence.

Algorithmic technologies and (large) data infrastructures, often referred to as Artificial Intelligence (AI), have received increasing attention from gerontological research in the last decade. Although there is much literature that dissects and explores the development, application, and evaluation of AI relevant to gerontology, this study makes a novel contribution by critically engaging with the theorizing in this growing field of research. We observe that gerontology's engagement with AI is shaped by an interventionist logic that situates AI as a black box for gerontological research. We demonstrate how this black box logic has neglected many aspects of AI as a research topic for gerontology and discuss three classical concepts in gerontology to show how they can be used to open various black boxes of aging and AI in the areas: (a) the datafication of aging, (b) the political economy of AI and aging, and (c) everyday engagements and embodiments of AI in later life. In the final chapter, we propose a model of the co-constitution of aging and AI that makes theoretical propositions to study the relational terrain between aging and AI and hence aims to open the black box of AI in gerontology beyond interventionist logic.

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.

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.

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.

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.

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.