Implementation of the Dementia Isolation Toolkit in long-term care improves awareness but does not reduce moral distress amongst healthcare providers.

BACKGROUND: Healthcare providers may experience moral distress when they are unable to take the ethically or morally appropriate action due to real or perceived constraints in delivering care, and this psychological stressor can negatively impact their mental health, leading to burnout and compassion fatigue. This study describes healthcare providers experiences of moral distress working in long-term care settings during the COVID-19 pandemic and measures self-reported levels of moral distress pre- and post-implementation of the Dementia Isolation Toolkit (DIT), a person-centred care intervention designed for use by healthcare providers to alleviate moral distress. METHODS: Subjective levels of moral distress amongst providers (e.g., managerial, administrative, and front-line employees) working in three long-term care homes was measured pre- and post-implementation of the DIT using the Moral Distress in Dementia Care Survey and semi-structured interviews. Interviews explored participants' experiences of moral distress in the workplace and the perceived impact of the intervention on moral distress. RESULTS: A total of 23 providers between the three long-term care homes participated. Following implementation of the DIT, subjective levels of moral distress measured by the survey did not change. When interviewed, participants reported frequent experiences of moral distress from implementing public health directives, staff shortages, and professional burnout that remained unchanged following implementation. However, in the post-implementation interviews, participants who used the DIT reported improved self-awareness of moral distress and reductions in the experience of moral distress. Participants related this to feeling that the quality of resident care was improved by integrating principals of person-centered care and information gathered from the DIT. CONCLUSIONS: This study highlights the prevalence and exacerbation of moral distress amongst providers during the pandemic and the myriad of systemic factors that contribute to experiences of moral distress in long-term care settings. We report divergent findings with no quantitative improvement in moral distress post-intervention, but evidence from interviews that the DIT may ease some sources of moral distress and improve the perceived quality of care delivered. This study demonstrates that an intervention to support person-centred isolation care in this setting had limited impact on overall moral distress during the COVID-19 pandemic.

Dementia-Inclusive Choices for Exercise Toolkit: Impact on the Knowledge, Perspectives, and Practices of Exercise Providers.

Physical activity improves the well-being of persons living with dementia but few exercise programs include them. The Dementia-Inclusive Choices for Exercise (DICE) toolkit aims to improve exercise providers' understanding of dementia and ability to support persons living with dementia in physical activity. We evaluated the co-designed DICE toolkit with exercise providers using a mixed-methods approach comprising pre/post questionnaires and interviews and reflection diaries. Among 16 participants, self-efficacy for exercise delivery to persons living with dementia and both knowledge and attitudes toward dementia significantly improved. Thematic analysis suggested participants (a) had a deeper understanding of the variability of dementia, (b) were planning for equitable access for persons living with dementia, (c) planned to promote social connection through exercise, and (d) were optimistic for future engagement with persons living with dementia. The DICE toolkit may improve exercise providers' knowledge and confidence to plan proactively to support persons living with dementia in programs and services.

Reimagining neuroscientific and andragogical principles for dementia care education.

This article aims to explore the integration of Louis Cozolino's (2013) andragogical strategies with the tenets of person-centered dementia care practices to enhance dementia care education. The article examines the multiple dimensions of learning in adulthood, highlighting the role of neural plasticity and lifelong brain adaptation in shaping learning and experiential strategies. This in-depth evaluation underscores the significance of tailoring andragogical approaches to the needs of adult learners, who, in this context, are care providers for persons with dementia. This is done through proper understanding of the neurobiological realities and the unique learning needs of adults. Such tailored approaches can be aligned with the brain's adaptive nature by recognizing the intricate interplay of cognitive, emotional, and social dimensions. Highlighting the need for including lessons on the person-centered approach in dementia care education, the paper argues that adult learners - who are essentially part of the dementia care workforce - first need to learn, appreciate, and embrace the approach before applying it in their caregiving practices. This article presents an overarching argument that integration of Cozolino's principles of adult learning with tenets of person-centered dementia care could provide a robust framework for dementia care education.

Staff perceptions of the consequences of COVID-19 on quality of dementia care for residents in Ontario long-term care homes.

OBJECTIVES: The first wave of the COVID-19 pandemic necessitated extensive infection control measures in long-term care (LTC) and had a significant impact on staffing and services. Anecdotal reports indicate that this negatively affected LTC residents' quality of care and wellbeing, but there is scarce evidence on the effects of COVID-19 on quality of dementia care in LTC. METHODS: From December 2020 to March 2021, we conducted a cross-sectional online survey among staff who worked in LTC homes in Ontario, Canada. Survey questions examined staffs' perceptions of the impact of COVID-19 on dementia quality of care during the initial wave of the COVID-19 pandemic (beginning 1 March 2020). RESULTS: There were a total of 227 survey respondents; more than half reported both worsened overall quality of care (51.3%) and worsening of a majority of specific quality of care measures (55.5%). Measures of cognitive functioning, mobility and behavioural symptoms were most frequently described as worsened. Medical and allied/support staff had the highest odds of reporting overall worsened quality of care, while specialized behavioural care staff and those with more experience in LTC were less likely to. LTC home factors including rural location and smaller size, staffing challenges, higher number of outbreaks and less COVID-19 preparedness were associated with increased odds of perceived worsening of quality of dementia care outcomes. CONCLUSIONS: These findings suggest that COVID-19 pandemic restrictions and related effects such as inadequate staffing may have contributed to poor quality of care and outcomes for those with dementia in LTC.

Barriers and facilitators to person-centred infection prevention and control: results of a survey about the Dementia Isolation Toolkit.

BACKGROUND: People working in long-term care homes (LTCH) face difficult decisions balancing the risk of infection spread with the hardship imposed on residents by infection control and prevention (ICP) measures. The Dementia Isolation Toolkit (DIT) was developed to address the gap in ethical guidance on how to safely and effectively isolate people living with dementia while supporting their personhood. In this observational study, we report the results of a survey of LTCH staff on barriers and facilitators regarding isolating residents, and the impact of the DIT on staff moral distress. METHODS: We completed an online cross-sectional survey. Participants (n = 207) were staff working on-site in LTCH in Ontario, Canada since March 1, 2020, with direct or indirect experience with the isolation of residents. LTCH staff were recruited through provincial LTCH organizations, social media, and the DIT website. Survey results were summarized, and three groups compared, those: (1) unfamiliar with, (2) familiar with, and (3) users of the DIT. RESULTS: 61% of respondents identified distress of LTCH staff about the harmful effects of isolation on residents as a major barrier to effective isolation. Facilitators for isolation included delivery of 1:1 activity in the resident's room (81%) and designating essential caregivers to provide support (67%). Almost all respondents (84%) reported an increase in moral distress. DIT users were less likely to report an impact of moral distress on job satisfaction (odds ratio (OR) 0.41, 95% CI 0.19-0.87) with 48% of users reporting the DIT was helpful in reducing their level of moral distress. CONCLUSIONS: Isolation as an ICP measure in LTCH environments creates moral distress among staff which is a barrier to its effectiveness. ICP guidance to LTCH would be strengthened by the inclusion of a dementia-specific ethical framework that addresses how to minimize the harms of isolation on both residents and staff.

Social isolation and the role of AgeTech in a post-COVID world.

The COVID-19 pandemic particularly affected social connection through enforced social isolation and loss of regular activities. For healthcare systems, various initiatives have sprung up, leveraging existing technologies to connect people with services, activities, and loved ones. Here we review some AgeTech offerings to address social isolation for healthcare leadership and management to consider.

Development and dissemination of an ethical guidance and person-centred isolation care planning tool to support the care of people with dementia during the COVID-19 pandemic.

BACKGROUND: Long-term care (LTC) residents have been disproportionately impacted by the COVID-19 pandemic, both from the virus itself and the restrictions in effect for infection prevention and control. Many barriers exist in LTC to prevent the effective isolation of suspect or confirmed COVID-19 cases. Furthermore, these measures have a severe impact on the well-being of LTC residents. Our aim was to develop a guide for long-term care to address the ethical challenges associated with isolating dementia patients during the pandemic. The Dementia Isolation Toolkit (DIT) was developed by members of the research team in partnership with LTC stakeholders to address: 1) the practical challenges of isolating or quarantining people with dementia in a compassionate, safe, and effective manner; and 2) the need for ethical guidance to support decision-making regarding isolation and infection control in LTC, to prevent indecision and moral distress. To develop the DIT the team reviewed and synthesized the literature on pandemic ethics in a plain-language document, which was then reviewed by our partners and stakeholders. The final ethical guidance tool includes a discussion of the ethics around infection control measures in a pandemic, an ethical decision-making tool, and a person-centred isolation care planning tool. The ethical guidance tool has been downloaded more than 6500 times since it was published (bit.ly/dementiatoolkit), and has been disseminated internationally. The worksheets are being used during outbreaks to support care and decision-making, as well as proactively, to prepare for outbreaks by developing isolation care plans. There is a need for support for ethical decision-making in the context of a pandemic, particularly in settings such as LTC. Future studies will evaluate the implementation of the tool and its impact in addressing moral distress in health care providers in long-term care.

Sex and gender differences in technology needs and preferences among informal caregivers of persons with dementia.

BACKGROUND: Dementia is a major public health concern associated with significant caregiver demands and there are technologies available to assist with caregiving. However, there is a paucity of information on caregiver needs and preferences for these technologies, particularly from a sex and gender perspective. To address this gap in research, the objectives of this study are to examine (1) the knowledge of technology, (2) perceived usefulness of technology, (3) feature preferences when installing and using technology and (4) sex and gender influences on technology needs and preferences among family caregivers of persons with dementia (PWD) across North America. METHODS: A secondary analysis was conducted on an existing cross-sectional survey with family caregivers of PWDs. Respondents were recruited through the Alzheimer Society of Canada, the Victorian Order of Nurses and Adult Day Programs and other Canadian health care provision institutes. Descriptive statistics, bivariate and multivariate analyses were used to describe the study sample, uncover differences between male and female caregivers and examine sex and gender influences on caregivers' technology needs and preferences. RESULTS: A total of 381 eligible responses were received over a nine month data collection period. The majority of respondents did not know much about and never used any technologies to assist with caregiving. "Being easy to install", "easy to learn how to use" and "cost" were identified as the most important features when purchasing and setting up technology, while "reliability" was identified as the most important feature when using technology. Most respondents were willing to pay up to $500 to acquire individual technologies. Controlling for other socio-demographic variables, female respondents were more likely to have some or more knowledge about technology for caregiving while male respondents were more willing to pay higher amounts for these technologies compared to their female counterparts. CONCLUSIONS: As one of the first studies of its kind, our findings represent a step towards the incorporation of sex and gender considerations such as cost and reliability in technology design and promotion for caregivers. Future efforts are warranted to establish an in-depth understanding of sex and gender influences in relation to other social and environmental factors.

Technology and Dementia: The Future is Now.

BACKGROUND: Technology has multiple potential applications to dementia from diagnosis and assessment to care delivery and supporting ageing in place. OBJECTIVES: To summarise key areas of technology development in dementia and identify future directions and implications. METHOD: Members of the US Alzheimer's Association Technology Professional Interest Area involved in delivering the annual pre-conference summarised existing knowledge on current and future technology developments in dementia. RESULTS: The main domains of technology development are as follows: (i) diagnosis, assessment and monitoring, (ii) maintenance of functioning, (iii) leisure and activity, (iv) caregiving and management. CONCLUSIONS: The pace of technology development requires urgent policy, funding and practice change, away from a narrow medical approach, to a holistic model that facilitates future risk reduction and prevention strategies, enables earlier detection and supports implementation at scale for a meaningful and fulfilling life with dementia.

Implementing Accessibility Settings in Touchscreen Apps for People Living with Dementia.

BACKGROUND: Accessibility options within apps can enable customisation and improve usability. The consideration of accessibility for people living with dementia has not been explored but is necessary to prevent a "digital divide" in our society. This study set out to examine whether the introduction of accessibility settings for people with dementia in two mainstream gaming apps (Solitaire and Bubble Explode) could improve the user experience. OBJECTIVES: To evaluate the effectiveness of tailored accessibility settings for people living with dementia by comparing the gameplay experience with and without the settings and measure the impact on their ability to initiate gameplay, play independently and experience enjoyment. METHODS: Thirty participants were recruited to test one of the two apps that had been adapted to include accessibility features. These features were derived from an analysis of gameplay in a previous study, from which the design of the present study was replicated. The results were compared with those from the earlier study (i.e., pre-adapted apps). RESULTS: The accessibility features significantly improved usability in Solitaire, which had been the more problematic of the two apps when evaluated in its pre-adapted form. Bubble Explode retained the high level of usability without further improvements. Initiation of gameplay was significantly improved in the adapted version of Solitaire, with no significant differences to progression or enjoyment for either app. CONCLUSIONS: This study represents the first implementation of accessibility settings for dementia in mainstream apps, whilst demonstrating the feasibility and positive impact of the approach. The findings reveal core principles of touchscreen interaction and design for dementia that can inform future app development.

Older Adults' Perspectives on Using Digital Technology to Maintain Good Mental Health: Interactive Group Study.

BACKGROUND: A growing number of apps to support good mental health and well-being are available on digital platforms. However, very few studies have examined older adults' attitudes toward the use of these apps, despite increasing uptake of digital technologies by this demographic. OBJECTIVE: This study sought to explore older adults' perspectives on technology to support good mental health. METHODS: A total of 15 older adults aged 50 years or older, in two groups, participated in sessions to explore the use of digital technologies to support mental health. Interactive activities were designed to capture participants' immediate reactions to apps and websites designed to support mental health and to explore their experiences of using technology for these purposes in their own lives. Template analysis was used to analyze transcripts of the group discussions. RESULTS: Older adults were motivated to turn to technology to improve mood through mechanisms of distraction, normalization, and facilitated expression of mental states, while aiming to reduce burden on others. Perceived barriers to use included fear of consequences and the impact of low mood on readiness to engage with technology, as well as a lack of prior knowledge applicable to digital technologies. Participants were aware of websites available to support mental health, but awareness alone did not motivate use. CONCLUSIONS: Older adults are motivated to use digital technologies to improve their mental health, but barriers remain that developers need to address for this population to access them.

Perspectives on ethnic and racial disparities in Alzheimer's disease and related dementias: Update and areas of immediate need.

Alzheimer's disease and related dementias (ADRDs) are a global crisis facing the aging population and society as a whole. With the numbers of people with ADRDs predicted to rise dramatically across the world, the scientific community can no longer neglect the need for research focusing on ADRDs among underrepresented ethnoracial diverse groups. The Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment (ISTAART; alz.org/ISTAART) comprises a number of professional interest areas (PIAs), each focusing on a major scientific area associated with ADRDs. We leverage the expertise of the existing international cadre of ISTAART scientists and experts to synthesize a cross-PIA white paper that provides both a concise "state-of-the-science" report of ethnoracial factors across PIA foci and updated recommendations to address immediate needs to advance ADRD science across ethnoracial populations.

The Use of Motion-Based Technology for People Living With Dementia or Mild Cognitive Impairment: A Literature Review.

BACKGROUND: The number of people living with dementia and mild cognitive impairment (MCI) is increasing substantially. Although there are many research efforts directed toward the prevention and treatment of dementia and MCI, it is also important to learn more about supporting people to live well with dementia or MCI through cognitive, physical, and leisure means. While past research suggests that technology can be used to support positive aging for people with dementia or MCI, the use of motion-based technology has not been thoroughly explored with this population. OBJECTIVE: The aim of this study was to identify and synthesize the current literature involving the use of motion-based technology for people living with dementia or MCI by identifying themes while noting areas requiring further research. METHODS: A systematic review of studies involving the use of motion-based technology for human participants living with dementia or MCI was conducted. RESULTS: A total of 31 articles met the inclusion criteria. Five questions are addressed concerning (1) context of use; (2) population included (ie, dementia, MCI, or both); (3) hardware and software selection; (4) use of motion-based technology in a group or individual setting; and (5) details about the introduction, teaching, and support methods applied when using the motion-based technology with people living with dementia or MCI. CONCLUSIONS: The findings of this review confirm the potential of motion-based technology to improve the lives of people living with dementia or MCI. The use of this technology also spans across several contexts including cognitive, physical, and leisure; all of which support multidimensional well-being. The literature provides evidence that people living with dementia or MCI can learn how to use this technology and that they enjoy doing so. However, there is a lack of information provided in the literature regarding the introduction, training, and support methods applied when using this form of technology with this population. Future research should address the appropriate introduction, teaching, and support required for people living with dementia or MCI to use the motion-based technology. In addition, it is recommended that the diverse needs of these specific end-users be considered in the design and development of this technology.

The validation of a computer-based food record for older adults: the Novel Assessment of Nutrition and Ageing (NANA) method.

Dietary assessment in older adults can be challenging. The Novel Assessment of Nutrition and Ageing (NANA) method is a touch-screen computer-based food record that enables older adults to record their dietary intakes. The objective of the present study was to assess the relative validity of the NANA method for dietary assessment in older adults. For this purpose, three studies were conducted in which a total of ninety-four older adults (aged 65-89 years) used the NANA method of dietary assessment. On a separate occasion, participants completed a 4 d estimated food diary. Blood and 24 h urine samples were also collected from seventy-six of the volunteers for the analysis of biomarkers of nutrient intake. The results from all the three studies were combined, and nutrient intake data collected using the NANA method were compared against the 4 d estimated food diary and biomarkers of nutrient intake. Bland-Altman analysis showed a reasonable agreement between the dietary assessment methods for energy and macronutrient intake; however, there were small, but significant, differences for energy and protein intake, reflecting the tendency for the NANA method to record marginally lower energy intakes. Significant positive correlations were observed between urinary urea and dietary protein intake using both the NANA and the 4 d estimated food diary methods, and between plasma ascorbic acid and dietary vitamin C intake using the NANA method. The results demonstrate the feasibility of computer-based dietary assessment in older adults, and suggest that the NANA method is comparable to the 4 d estimated food diary, and could be used as an alternative to the food diary for the short-term assessment of an individual's dietary intake.

"Like another human being in the room": a community case study of smart speakers to reduce loneliness in the oldest-old.

This community case study examined the potential benefits of smart speakers to tackle loneliness in the oldest old adults living in supported accommodation. The program was established as a collaboration between the supported accommodation provider and a technology company to explore the feasibility of smart speakers to alleviate resident loneliness. Loneliness in later life often accompanies a shrinking social circle, loss of a spouse or increased disability. People aged 85 years of age and over are increasingly likely to experience these life events, leading to an increased risk of social isolation and loneliness. Five older people, mean age 90 years of age, who resided in supported accommodation, were given a smart speaker for 8 weeks to examine their experience with the voice assistant. The experiences of the five older adults are explored as case studies, with each person interviewed both before and after receiving the smart speaker. All five valued their smart speaker, recognised its potential for tackling loneliness, and wanted to keep it. The three most lonely individuals reported that their smart speaker made them feel less lonely and isolated through two mechanisms: (i) creating a presence and (ii) having some control over their situation. Although only a small study, these experiences suggest providing smart speakers for lonely and isolated oldest-old people, could be one way to help combat loneliness in community settings.

The impact on employment and education of caregiving for a family member with young onset dementia: A scoping review.

Young-onset dementia (YOD) affects individuals under 65 years of age, often leading to loss of employment and independence. Families provide increasing levels of care to family members with YOD, resulting in changes to their daily lives, including their occupational pursuits. This review examines evidence of the occupational implications for family members who provide care to a family with YOD to identify: (i) the influence and impact caregiving tasks and responsibilities have on employment, volunteering, and education, and (ii) caregiver, and caregiving situation factors associated with changes in employment, volunteering, and education. A scoping review was performed using eight electronic databases. Included articles were narratively synthesized using a thematic analysis. Sixteen studies met the inclusion criteria and were included for review. The over-arching (main) theme of 'decision-making' was identified, with family members required to make choices about their own occupational goals and roles to be able to provide care to family living with YOD. The outcomes of these decisions are dynamic and changeable across the caregiving trajectory. Three caregiving factors influence decision-making: (1) Implications of Combining Caregiving and Occupations, (2) Altered Identity (3) Strategies to Support Caregivers of Individuals Living with YOD. A fourth theme was also identified 'Guidance for Researchers To Support Caregivers'. There is a scarce body of literature examining the influence caregiving has on occupational outcomes for the YOD caregiver population. Much of this work is descriptive and lacks focus on the implications, particularly long-term impacts. This review provides a foundational guide for future research and practices to support YOD family caregivers to obtain and sustain occupations.

Personalized Tablets for Residents in Long-Term Care to Support Recreation and Mitigate Isolation.

OBJECTIVES: There is a digital divide in long-term care homes (LTCHs), with few residents having regular access to internet-connected devices. In this study, we provided long-term care residents with personalized and adapted tablets. We aimed to understand what factors influenced tablet use and the impact of tablet access on opportunities for social connection and recreation. DESIGN: A pragmatic, mixed-methods multicenter, open-label, uncontrolled interventional study with assessment of outcomes at baseline and 3 months. SETTING AND PARTICIPANTS: A total of 58 resident-care partner dyads were recruited across 7 LTCHs in Ontario, Canada. The main inclusion criterion was having a care partner willing to participate, and we excluded residents who already had an internet-connected device. METHODS: Resident demographics, functional status assessments, and recreational engagement were captured using items from the Resident Assessment Instrument/Minimum Data Set. Care partners completed a questionnaire about relational closeness and site leads assessed resident quality of life before and approximately 3 months after tablet distribution. Interviews with 23 care partners and 7 residents post-implementation were completed and analyzed. RESULTS: The median tablet use by participants was 7 minutes (interquartile range 27) per day on average over the study period. Predictors of higher tablet use were younger age, higher cognitive functioning, absence of hearing impairment, and having a care partner who lives farther away. There was no improvement on quantitative measures of quality of life, recreation, or relational closeness. In interviews, participants identified many different opportunities afforded by access to personalized tablets. CONCLUSIONS AND IMPLICATIONS: Some LTCH residents without current access to the internet benefit from being provided a personal tablet and use it in a variety of ways to enrich their lives. There is a critical need to bridge the digital divide for this population.

A scoping review to inform the development of dementia care competencies.

Health professionals and care partners of persons living with dementia have expressed that learning needs related to dementia care are a priority. There are currently a variety of training programs available in Ontario (Canada) to address aspects of dementia care, but no commonly accepted description of the core knowledge, skills, and abilities, (i.e., competencies) that should underpin dementia-related training and education in the province. The aim of this study was to review current evidence to inform the later development of competency statements describing the knowledge, skills and actions required for dementia care among care providers ranging from laypersons to health professionals. We also sought to validate existing dementia care principles and align new concepts to provide a useful organizing framework for future competency development. We distinguished between micro-, meso- and macro-level concepts to clarify the competencies required by individuals situated in different locations across the healthcare system, linking competency development in dementia care to broader system transformation. This review precedes the co-development of a holistic competency framework to guide approaches to dementia care training in Ontario.

What happens when people develop dementia whilst working? An exploratory multiple case study.

PURPOSE: This study is an in-depth exploration of the unfolding experiences of five persons who developed dementia while still in paid work/employment, and of their significant others. Namely, we explore how they experienced the actions and decisions taken with respect to work, and what the consequences meant to them. METHODS: A qualitative longitudinal case study design with multiple cases was used, including five participants with dementia and significant others of their choice. Interviews were undertaken longitudinally and analysed with the Formal Data-Structure Analysis approach. RESULTS: The joint analysis resulted in two intertwined themes: 1) The significance and consequences of a dementia diagnosis: a double-edged trigger, and 2) Sensemaking and agency. The prevalent images of what dementia is, who can/cannot get it and what it will bring, were revealed as the critical aspects. Having the opportunity to make sense of what has happened and participate in decision-making, contributed decisively to the participants' experiences. CONCLUSIONS: Findings illustrate how a dementia diagnosis is alien in work-life, but once diagnosed, it may trigger self-fulfiling expectations based upon stereotypical understanding of dementia. A shift is needed from a deficit-focused perspective, to viewing people with dementia as citizens capable of agency.