End-of-Life Experiences Within a Dementia Support Program During COVID-19: Context and Circumstances Surrounding Death During the Pandemic.

Background: Persons with dementia (PWD) and their caregivers are uniquely impacted by the COVID-19 pandemic, including higher risk of mortality for PWD. Objectives: To describe the context and circumstances of deaths of PWD within a dementia support program during the COVID-19 pandemic. Design: Retrospective data collection of PWD deaths between March 1, 2020 and February 28, 2021. Setting/Subjects: Decedents enrolled in Care Ecosystem, a multidisciplinary team model for dementia care at University of California San Francisco, Ochsner Health, and UCHealth. Measurements: Using mixed methods, we analyzed data using descriptive measures and team-based thematic analysis to understand the end-of-life (EOL) experience of PWD-caregiver dyads. Results: Twenty-nine PWD died across three sites. Almost half (45%) were between ages 70-79 and 12 (41%) were women. Eighteen (62%) died at a private residence; two died in the hospital. Hospice was involved for 22 (76%) patients. There were known causes of death for 15 (53%) patients. Only two deaths were directly related to COVID-19 infection. Social isolation was perceived to have a high or very high impact for 12 (41%) decedents. Four qualitative themes were identified: (1) isolation due to the pandemic, (2) changes in use of dementia supports and resources, (3) impact on goals of care decisions, and (4) communication challenges for EOL care coordination. Conclusion: Among PWD and caregivers enrolled in a dementia support program, the COVID-19 pandemic had direct and indirect influences on mortality and EOL experiences of PWD. Caregivers' experiences of caring, decision making, and bereavement were also affected.

A time for adaptation and reflection: the experience of Admiral Nurses during COVID-19

COVID-19 has meant that, globally, people, organisations and governments have had to make huge changes in life and work. The aim of this study is to explore the impact of working during the first wave of COVID-19 on Admiral Nurse practice (specialists in dementia care who support families affected by dementia). Semi-structured interviews were used to gather data from 19 Admiral Nurses. Themes drawn from the data show that Admiral Nurses experienced an immediate sense of impotence and helplessness, and, from there, moved through a process of adaptation to reach a new level of competence. This research provides insight into the experiences of Admiral Nurses and their adaptability in extraordinary circumstances.

Losing Ground during COVID-19: Dementia Caregivers' Shifting Perceptions of Place

In the wake of COVID-19, Canadian federal and provincial governments implemented gathering restrictions to prevent or limit its spread. These restrictions significantly impacted where Canadians spend their time, how they do so and with whom. Prior to the pandemic, people living with dementia (PLWD) and the family members, friends, and neighbours who support their care already encountered physical, health, and social challenges relating to participation in private and public places. Under pandemic conditions, these challenges were magnified and contributed to differences in the ways community was understood and practiced. A rapid research project in the province of Nova Scotia, Canada, exploring COVID-19-related changes to community-based dementia care supports and services highlighted changes toward places of residence, public places, and virtual settings through interviews with unpaid caregivers of PLWD. Findings demonstrated a shift in activities and experiences associated with places during COVID-19 restrictions and lockdown measures. From what home means to community places and virtual places, this article considers the ways in which COVID-19 restrictions and measures are redefining the meanings and significance of places for unpaid caregivers of PLWD in the province of Nova Scotia in Atlantic Canada.

Perceptions, Experiences, and Challenges of Physicians Involved in Dementia Care During the COVID-19 Lockdown in India: A Qualitative Study.

Introduction: With 5.3 million people living with dementia in India and the pandemic wreaking havoc, dementia care has faced unique challenges during the outbreak, with reduced healthcare access, travel restriction, long-term lockdown and fear of hospitalization. We explored the experiences and barriers faced by the physicians involved in dementia care during the lockdown period. Methods: A qualitative approach was used with purposive sampling. After an initial pilot, 148 physicians were included in the study. They were virtually interviewed in-depth based on a pre-designed semi-structured questionnaire, in areas related to tele-consultations, attributes related to dementia care, challenges faced and way forward. Interviews were recorded, transcribed and thematically analyzed using Nvivo-10 software. Triangulation, peer debriefing and respondent validation were used to ensure rigor. Results: The overarching categories that emerged were "Tele-medicine as the future of dementia care in India," "people living with dementia being uniquely susceptible to the pandemic with a triple burden of: age, ageism and lack of autonomy" and "markedly reduced healthcare access in this population with significant mental health burden of caregivers." The experiences of the physicians were categorized into their challenges during the lockdown period and perceptions related to specific facets of dementia care during the crisis. The general physicians expressed special "unmet needs" of dementia-specific training and specialist collaboration. Most of the participants perceived ambiguity related to the newly released telepsychiatry guidelines. Conclusion: Resource constraints and pandemic burden are currently high. This study looks at the "voices" of those actively providing dementia care during the ongoing crisis and to the best of our knowledge, is the first one from India to do so. Concurring with their experiences, PwD and their families are exposed to multiple vulnerabilities during COVID-19, need tailored care, especially at the primary healthcare level which includes general physicians. These relevant "voices" are discussed in light of the new tele-psychiatry guidelines and further optimization of dementia care in an aging India.

Living With Dementia: Care Partner Needs and Outcomes of a Dementia Support Program in Primary Care.

To address the need for collaborative approaches to managing dementia in primary care, we implemented the Living with Dementia (LWD) program in a geriatric primary care clinic. This study evaluated the impact of short (≤6 months) and longer-term (7+ months) participation in LWD on care partner outcomes (i.e., self-efficacy, depression, and burden) using t-tests and examined dementia support topics discussed with care partners through the intervention using deductive content analysis. Across 20 months analyzed, 57 dyads participated in the LWD program. Short and longer-term LWD participation indicated a significant increase in self-efficacy with small effect sizes; no changes were observed in depression or burden. Dementia support topics most frequently discussed with care partners focused on care partner well-being, behavior management, and offering referrals. This early evaluation suggests a collaborative care program integrated into primary care can address needs related to caring for persons with dementia and may improve care partner self-efficacy.

A Critical Study on the Impact of Dementia on Older People Undergoing Treatment in Care Homes.

Maximum healthcare needs for older people are complex due to diseases, comorbidities, or disabilities, including long-term or mental and physical health issues. Various residential and nursing care homes help care for older people, especially those with special medical needs. Among these special medical needs, dementia is one medical condition requiring exceptional care for the affected to prevent adverse effects of the situation they usually encounter. Dementia is a health condition that involves impairments to memory and thinking due to any injury or disease-causing damage to the brain. Older people suffer from different diseases, which cause cognitive disability and long-term ailments and directly affect patients' quality of life. Given the cognitive impairment dementia causes to older people, it is difficult for the care providers to accurately assess the impact on every individual to formulate a person-centered care plan. During the COVID-19 pandemic, due to administrative restrictions on social distancing to prevent transmission of this disease, caregivers and elderly persons feel tremendous mental stress, further aggravating their problems because of loneliness. Thus, there is a requirement to do the study and analyze the effects on older people to provide quality and person-centered care. Due to the above factors as significant challenges in the current context, there is an ardent need for the results of variegated studies besides a thorough analysis of available literature analyzed to provide proper evidence to the care providers. It will pave the way for understanding the actual impact of the condition in its natural context. In this regard, a literature review and the results of the studies are discussed. This research brings into the limelight all those factors in the context of previous studies and data analysis of the current situation.

"An animated socialization without substance:" experiences of persons living with dementia through the COVID-19 pandemic.

BACKGROUND: Like so many others, persons living with dementia have been greatly impacted by the COVID-19 pandemic. A Stakeholder Advisory Council set a research priority to learn more about the experiences of families living with dementia during COVID-19. METHODS: This study was conducted using a multi-method design. Online surveys were completed by 27 persons living with dementia to rate the impact of COVID-19 on their health and healthcare. Additionally, interviews (n = 3) and two focus groups were conducted via Zoom with eight participants to explore the experiences of persons living with dementia during COVID-19. RESULTS: Most participants in this study reported that COVID-19 had some to extreme impact on their anxiety, feelings of isolation, and quality of life. Focus groups and interviews provided context and increased understanding of the main survey findings, with participants also describing other concerns and how they were coping with all of the challenges that came with COVID-19. Five themes from the qualitative data were health, isolation, feelings about COVID-19, adapting to COVID-19, and self-refection. DISCUSSION: Although persons living with dementia described the ways that COVID-19 impacted on their quality of life, they also described strategies for coping. For those persons living with dementia who are able to utilize technology, this study highlights the ongoing need to provide virtual opportunities for socialization and support. These findings also emphasize the need to create safe opportunities for socialization such as small socially distanced activities that may allow persons living with dementia to maintain social connections through the COVID-19 pandemic and throughout the progression of their disease.

Who is essential in care? Reflections from the pandemic's backstage.

Since the beginning of the pandemic spread of the Coronavirus, societies have been reminded that the impact of Covid-19 and public health measures of infection containment reflect known gradients of inequality. Measures focusing only the (acknowledged) frontstage of the pandemic and neglecting its (unacknowledged) backstage-understood as those framework conditions indispensable for societies to thrive-have worsened the impact of social determinants of health on the most vulnerable, as shown by the deleterious effects of prolonged social isolation of residents of nursing homes. To reflect this phenomenon ethically, a framework is proposed which is inspired by the feminist philosopher Margret Little. At its core stands the assumption that caring for people and moral ends allows us to identify what is morally salient. This epistemological stance allows a critical look at the alleged dilemmas invoked to enforce brute, long-lasting policies of closing nursing homes in many places-especially in the light of their dubious effectiveness in preventing viral spread and the severe physical and psychological consequences for those affected. If moral salience is only fully perceived through the closeness of the caring relationship, the human suffering resulting from these policies reveals the utter inadequacy of the dilemma rhetoric used to justify them. This insight is illustrated by the personal experience of the author: He describes his role as an essential care partner of his mother living in a nursing home and forced into the role of a "visitor" who witnessed a constant deterioration of care. Based on an epistemological understanding of caring for making reliable moral judgments, potentially exclusionary effects of distinguishing essential from non-essential groups in care will be addressed together with the need to overcome strict boundaries between front- and backstage. Such efforts will strengthen the moral community of persons needing care, professional care givers and essential care partners.

Preface: Population aging and the evolution of dementia care

By 2025, at least one-fifth of the population of 15 countries in the Americas will be 60 or older (Pan American Health Organization, 2017). The populations of older adults in Mexico and older Latinos in the United States continue to grow dramatically (Central Intelligence Agency, 2015). Population aging is the most important, inevitable feature of the health and prosperity of both nations in the near future. In the short term, serious consequences exist for families, communities, and governmental agencies at all levels as they struggle to adapt to the needs of rapidly growing older populations while devoting adequate resources to foster economic development and full employment. The COVID-19 pandemic has shown the vulnerability of the older population and the role of the economic and social determinants of health in its outcomes (Bello-Chavolla et al., 2020). (PsycInfo Database Record (c) 2022 APA, all rights reserved)

Mental Health of Caregivers Working in Nursing Homes during the COVID-19 Pandemic.

INTRODUCTION: There have been numerous reports of cluster outbreaks of coronavirus disease 2019 (COVID-19) in hospitals and nursing homes. Healthcare workers fighting COVID-19 experience mental health issues. Caregivers in nursing homes experienced increased psychological distress and concern about deterioration of their mental health. We conducted a large-scale web-based survey exploring mental health among caregivers working in nursing homes during the COVID-19 pandemic with the aim of identifying their support needs. METHODS: Survey participants were caregivers working at 284 nursing homes in Ibaraki prefecture, Japan. The survey period was from September 2020 to March 2021. Participants responded to a questionnaire covering gender, age, occupation, infections at facilities, infection protection, changes in nursing home users, cooperation with other medical institutions, and prejudice/discrimination. The Hospital Anxiety and Depression Scale (HADS) was used to evaluate participants' depression and anxiety. RESULTS: In total, 676 participants completed the survey; 350 (52.5%) were with anxiety symptoms and 378 (56.7%) were with depressive symptoms (scores exceeding the HADS cut-off points). The risk for anxiety was associated with being care worker or social worker. The risk of anxiety or depression was high when family caregivers' mental state changed. DISCUSSION/CONCLUSION: This study found that caregivers working in nursing homes were exposed to high levels of stress during the COVID-19 pandemic and were at high risk for developing depression and anxiety.

Adapting 'sunshine,' a socially assistive chat robot for older adults with cognitive impairment: A pilot study

This reprinted chapter originally appeared in Journal of Gerontological Social Work, 2020, 63[6-7], 520-528. (The following of the original article appeared in record 2020-51139-001.) The COVID-19 pandemic challenges us to think outside of the box to respond to this unprecedented global crisis. In this letter, we propose a pilot study to use a socially assistive robot to help meet social needs for older adults with cognitive impairment residing in long-term care facilities. (PsycInfo Database Record (c) 2022 APA, all rights reserved)

Responding to the Needs of Persons Living With Dementia and Their Caregivers During the COVID-19 Pandemic: Lessons From the Care Ecosystem.

Background and Objectives: The coronavirus disease 2019 (COVID-19) pandemic created challenges for persons with dementia, their caregivers, and programs that support them. The Care Ecosystem (CE) is a model of dementia care designed to support people with dementia and their family caregiver dyads through ongoing contact with a care team navigator (CTN) and an expert clinical team. CTNs provide support, education, and resources and help dyads manage dementia-related concerns as they evolve over the course of the disease. We aimed to understand how the CE responded to the needs of dyads during the initial 3 months of the COVID-19 pandemic. Research Design and Methods: We conducted a survey and qualitative interviews with staff members from 4 established CE programs located in 4 different states to explore (a) challenges dyads voiced during the pandemic, (b) CE staff approaches to addressing the needs of dyads, and (c) programmatic challenges faced and lessons learned. Findings: Nine staff members from 4 CE programs with an active collective caseload of 379 dyads were interviewed. Themes were identified that included dyad concerns regarding fear of illness, changing attitudes toward long-term care, decreased availability of services and resources, and impacts on patient and caregiver health and well-being. Programmatic challenges included maintaining effective communication with dyads and program staff, technological readiness, workflow restructuring, and program sustainability. Discussion and Implications: Approaches in supporting people with dementia and their caregivers should demonstrate flexibility, responsivity, and creativity, and these findings provide insight for understanding how dementia care programs can be positioned to offer continuous support for this vulnerable population.

Thinking outside of the Box: Medical Provider Perspectives on Adaptive Reuse of Closed Mall Sites for Mixed-Use Dementia Programs and Services

The double societal hit of dementia and infectious disease outbreaks like the COVID-19 pandemic have raised a convergence of concerns for the future of care settings for people living with dementia. It is estimated that 5.4 million Americans have some form of dementia and these numbers are expected to rise in the coming decades, leading to an unprecedented demand for memory care housing and services. In searching for innovative options to create more autonomy and better quality of life in dementia care settings, repurposing existing structures, in particular vacant urban malls, may be one option for the large sites needed for the European model of dementia villages. These settings may become sustainable Dementia Friendly City Centers, because with enclosed mall construction, the internal infrastructure is in place for lighting and HVAC, with varied spatial configuration of public spaces. This paper describes the community-based focus group research with medical providers who addressed designs for adaptive reuse of an existing dosed mall case study site. Focus group outcomes included discussions on four central themes about the adaptive reuse including: applicability of the concept, spectrum of programs, economic feasibility and onsite medical care.

Time to reflect is a rare and valued opportunity; a pilot of the NIDUS-professional dementia training intervention for homecare workers during the Covid-19 pandemic.

Most people living with dementia want to continue living in their own home for as long as possible and many rely on support from homecare services to do so. There are concerns that homecare often fails to meet the needs of clients with dementia, but there is limited evidence regarding effective interventions to improve its delivery for this client group. We aimed to assess whether a co-designed, 6-session dementia training intervention for homecare workers (NIDUS-professional) was acceptable and feasible. Facilitated training sessions were delivered over 3 months, followed by 3, monthly implementation meetings to embed changes in practice. Two trained and supervised facilitators without clinical qualifications delivered the intervention via group video-calls during Oct 2020-March 2021 to a group of seven homecare workers from one agency in England. Participants provided qualitative feedback 3- and 6-months post intervention. Qualitative interview data and facilitator notes were integrated in a thematic analysis. Adherence to the intervention and fidelity of delivery were high, indicating that it was acceptable and feasible to deliver in practice. Thirty of a possible 42 (71.4%) group sessions were attended. In our thematic analysis we report one over-arching theme: 'Having time and space to reflect is a rare opportunity'. Within this we identified four subthemes (Having time to reflect is a rare opportunity; Reflecting with peers enhances learning; Reflection and perspective taking can improve care; Recognising skills and building confidence) through which we explored how participants valued the intervention to discuss their work and learn new skills. Attendance was lower for the implementation sessions, perhaps reflecting participants' lack of clarity about their purpose. We used our findings to consider how we can maintain positive impacts of the manualised sessions, so that these are translated into tangible, scalable benefits for people living with dementia and the homecare workforce. A randomised feasibility trial is underway.

Care for dementia patients and caregivers amid COVID-19 pandemic.

BACKGROUND: Multiple efforts have been taken across the world to bridge gaps in evidence and provide recommendations for dementia care and caregiver support during the COVID-19 pandemic. We aimed to review the available literature on measures used to alleviate the negative impacts of the pandemic on dementia care. METHODS: We searched three databases: PubMed, CINAHL and PsycINFO to identify studies that described strategies that were recommended or taken to provide care and support to persons with dementia and their caregivers during the COVID-19 pandemic. RESULTS: We included a total of 37 papers, originating from high, middle and low-income countries. We also included 6 papers exploring safety of COVID-19 vaccinations. Infection prevention recommendations predominantly involved providing consistent reminders to persons with dementia to engage in infection prevention measures and included measures to restrict wandering in long-term care settings to reduce spread of infection. Medical care included tele and video consultations to maintain and monitor clinical stability. Guidance for continuing rehabilitation activities for persons with dementia through remotely conducted cognitive stimulating activities, physical exercises and environmental modifications were further highlighted by multiple studies/articles. In addition, strategies to support caregivers were also advised and included teleconsultations and psycho-educational programs. CONCLUSION: The COVID-19 pandemic has exposed gaps in health and social care systems across the world, but has also revealed the enduring dedication of clinicians, expert groups and dementia support organizations to modify and adapt existing dementia care services to meet the needs of persons with dementia and their caregivers during periods of emergency.

Comparing Virtual to In-Person Delivery of Continuing Medical Education in Dementia Care: Which Is Preferred?

OBJECTIVES: There is limited understanding of learners' perceptions of virtual learning during the COVID-19 pandemic, as well as the use of virtual modalities for interprofessional education (IPE) in primary care. Four of 7 in-person annual "Booster Day" IPE sessions for health professionals working in primary care-based memory clinics in Ontario, Canada, were canceled when the pandemic was declared; these sessions were replaced with 2 sessions delivered via live-streamed videoconferencing. This study compares Booster Day session participants' perceptions of the in-person and virtual sessions and assesses their preferences for in-person or virtual sessions in the future. DESIGN: Survey methodology. SETTING AND PARTICIPANTS: Interprofessional primary care-based memory clinic team members attending 1 of 5 annual IPE events, 3 delivered in-person immediately prior to the COVID-19 pandemic and 2 subsequently delivered virtually via videoconferencing. METHODS: Chi-squared test and analysis of variance was used to identify significant differences in reaction, attitude, and preference ratings between delivery modalities. RESULTS: There were no significant differences in satisfaction, relevance, knowledge acquisition, and intentions to apply new knowledge between delivery modalities. Although attendance via videoconferencing was perceived as useful, enjoyable, engaging, and as more feasible to attend, it was rated as less enjoyable and perceived as having fewer opportunities for networking than in-person sessions. Most participants preferred in-person sessions. CONCLUSIONS AND IMPLICATIONS: Quality engagement and networking, as afforded by in-person IPE, are highly valued by health professionals attending dementia-related education. IPE on complex health issues of the older people requiring interprofessional perspectives may be best suited to in-person formats.

Dementia Caregiver Virtual Support-An Implementation Evaluation of Two Pragmatic Models during COVID-19.

Caregivers of people with Alzheimer's and related dementias (ADRD) require support. Organizations have pivoted from traditional in-person support groups to virtual care in the face of the COVID-19 pandemic. We describe two model programs and their pragmatic implementation of virtual care platforms for ADRD caregiver support. A mixed methods analysis of quantitative outcomes as well as a thematic analysis from semi-structured interviews of facilitators was performed as part of a pragmatic quality improvement project to enhance delivery of virtual support services for ADRD caregivers. Implementation differed among individual organizations but was well received by facilitators and caregivers. While virtual platforms can present challenges, older adults appreciated the strength of group facilitators and reported enhanced connectedness related to virtual support. Barriers to success include the limitations of virtual programming, including technological issues and distractions from program delivery. Virtual support can extend outreach, addressing access and providing safe care during a pandemic. Implementation differs among organizations; however, some elements of virtual support may be long-lasting.

Impact of the COVID-19 pandemic on older adults mental health services: A mixed methods study.

OBJECTIVES: The COVID-19 pandemic has had a significant impact on older adults mental health care. Our study aimed to explore staff perspectives on key challenges and innovations in order to help inform the delivery of older adults mental health care in subsequent waves of the pandemic. METHODS: A mixed methods online questionnaire developed by National Institute for Health Research Mental Health Policy Research Unit was used to gather staff perspectives on their challenges at work, problems faced by service users and their carers, and sources of help and support. Descriptive statistics were used for quantitative analysis and descriptive content analysis for qualitative analysis. RESULTS: 158 participants, working in either community or inpatient settings, and from a range of professional disciplines, were included. For inpatient staff, a significant challenge was infection control. In the community, staff identified a lack of access to physical and social care as well as reduced contact with friends and families as being challenges for patients. Remote working was seen as a positive innovation along with COVID-19 related guidance from various sources and peer support. CONCLUSION: Our study, with a focus on staff and patient well-being, helps to inform service development for future waves of the pandemic. We discuss measures to improve infection control in inpatient settings, the role of voluntary organisations in supporting socially isolated community patients, the need for better integration of physical and mental health services at an organisational level, and the importance of training staff to support patients and their families with end of life planning.

A Minimal Design of a Human Infant Presence: A Case Study Toward Interactive Doll Therapy for Older Adults With Dementia.

We introduce a minimal design approach to manufacture an infant-like robot for interactive doll therapy that provides emotional interactions for older people with dementia. Our approach stimulates their imaginations and then facilitates positive engagement with the robot by just expressing the most basic elements of humanlike features. Based on this approach, we developed HIRO, a baby-sized robot with an abstract body representation and no facial features. The recorded voice of a real human infant emitted by robots enhances the robot's human-likeness and facilitates positive interaction between older adults and the robot. Although we did not find any significant difference between HIRO and an infant-like robot with a smiling face, a field study showed that HIRO was accepted by older adults with dementia and facilitated positive interaction by stimulating their imagination. We also discuss the importance of a minimal design approach in elderly care during post-COVID-19 world.

The impact of Covid-19-related distancing on the well-being of nursing home residents and their family members: a qualitative study.

OBJECTIVES: The aim of this study is to examine the consequences of Covid-19-related isolation and social restrictions on the well-being of nursing home residents and their family members, and to analyze how distancing has affected the relationships of family members with residents and the nursing home staff. DESIGN: The data consist of 41 thematic one-on-one interviews conducted during May-December 2020 with family members of nursing home residents. Convenience sampling was utilized by asking several nursing homes in different parts of Finland to relay a contact request from the researchers to the residents' family members. The main themes of the interviews were lockdown and visiting restrictions. Subthemes included the frequency of visits, other means of interaction, changes in the relationships of family members with their loved ones and with nursing home staff, and the feelings aroused by the situation. The interviews were audio recorded and transcribed verbatim, resulting in 794 pages of data. METHOD: The qualitative study uses inductive content analysis. NVivo12 software facilitated the systematic coding of the data. RESULTS: According to the family members, distancing aggravated the residents' pre-existing conditions: they reported a sudden progression in memory disorders and significant deterioration in physical abilities, for example. Both residents and family members experienced anxiety, grief, and severe stress, and family members expressed concern that residents might die due to a lack of social contact and activity. Family members were also frustrated about not being able to touch their relatives or participate in their care, and therefore sometimes thought that their visits were useless. New forms of interaction with family members, introduced by the nursing homes, were appreciated. However, some family members perceived the interactional protocols as unfair and complained about insufficient information. CONCLUSIONS: The findings underline the need for nursing homes to implement a good interactional protocol. Overall, the results show that the measures taken to protect residents' health during the Covid-19 outbreak were short-sighted in terms of the social dimension of well-being. It is therefore important to continue developing safe and humane solutions for interaction when social restrictions are in place. Tweetable abstract: Covid-19-related distancing has caused anxiety, grief, and severe stress for nursing home residents and their family members.