Emerging topics in dementia care and services.

BACKGROUND: The National Institute on Aging (NIA), in conjunction with the Department of Health and Human Services as part of the National Alzheimer's Project Act (NAPA), convened a 2020 Dementia Care, Caregiving, and Services Research Summit Virtual Meeting Series. This review article summarizes three areas of emerging science that are likely to grow in importance given advances in measurement, technologies, and diagnostic tests that were presented at the Summit. RESULTS: Dr. Cassel discussed novel ethical considerations that have resulted from scientific advances that have enabled early diagnosis of pre-clinical dementia. Dr. Monin then summarized issues regarding emotional experiences in persons with dementia and their caregivers and care partners, including the protective impact of positive emotion and heterogeneity of differences in emotion by dementia type and individual characteristics that affect emotional processes with disease progression. Finally, Dr. Jared Benge provided an overview of the role of technologies in buffering the impact of cognitive change on real-world functioning and their utility in safety and monitoring of function and treatment adherence, facilitating communication and transportation, and increasing access to specialists in underserved or remote areas. CONCLUSIONS: National policy initiatives, supported by strong advocacy and increased federal investments, have accelerated the pace of scientific inquiry and innovation related to dementia care and services but have raised some new concerns regarding ethics, disparities, and attending to individual needs, capabilities, and preferences.

Future forward: AGS initiative addressing intersection of structural racism and ageism in health care.

The American Geriatrics Society is committed to taking purposeful steps to address racism in health care, given its impact on older adults, their families, and our communities. In fall 2020, AGS added a statement to our vision for the future, which reflects that our commitment is central to mission: "We all are supported by and able to contribute to communities where ageism, ableism, classism, homophobia, racism, sexism, xenophobia, and other forms of bias and discrimination no longer impact healthcare access, quality, and outcomes for older adults and their caregivers." In 2021, we will be working to flesh out a multi-year, multi-pronged initiative that addresses the intersection of structural racism and ageism in health care. This will include engaging members in identifying strategies and with the goal of increasing member engagement around the idea that it will take all of us working together to achieve our vision for a collective future that is free of discrimination and bias. The Society has set as the first objective that by 2031, 100% of research presented at the AGS Annual Scientific Meeting and published in the Journal of the American Geriatrics Society (JAGS) will reflect the diversity of the population being studied. Other immediate efforts include undertaking a complete update of the Geriatrics Cultural Navigator, development of corresponding public education materials, and a webinar series focused on helping us all understand our own implicit bias, recognize implicit and explicit bias, and consider actions that we each might take to address bias when we observe it.

[Ethical issues in primary care during the coronavirus (SARS-CoV-2) pandemic]. / Problemas éticos en atención primaria durante la pandemia del coronavirus (SARS-CoV-2).

Public health emergencies, such as the current SARS-CoV-2 coronavirus pandemic, have led to tragic resource constraints that prevent lives from being saved. This has led to tensions in patient-centered care as the backbone of the system in normal conditions and the same care in emergencies originating in the COVID-19. In this review we address some of the healthcare, organizational and ethical problems that this scenario has caused in primary care such as: cancellation of programmed activities; scarce home care and follow-up of elderly, chronically ill and immobilized patients; shortage of PPE and the exposure to risk of healthcare professionals, and finally the problems associated with telemedicine and telephone attention to patients.

Perspectives of Veterans Affairs mental health providers on working with older adults with dementia and their caregivers.

Continuing education directed at building providers' skills and knowledge in geriatrics represents a practical approach to addressing the geriatric mental health (MH) care workforce shortage. To inform the development of professional training curricula, we surveyed MH providers (N = 65) at a Veterans Affairs medical center on working with older persons with dementia (PwD) and informal caregivers. Providers rated service provision to PwD and caregivers as highly important but endorsed modest self-efficacy. Half of respondents were minimally confident in managing risk of harm to self or others in a PwD. Respondents believed PwD can benefit from MH treatments, yet identified several barriers to providing care, including inadequate time and staffing resources. Interest in geriatric training topics was high. Findings demonstrate that MH providers at this site value care provision to PwD and caregivers, and desire additional training to serve this population. System-level barriers to MH care for PwD should also be identified and addressed.

Making a difference: Students' experiences with a dementia care program.

As the number of elderly citizens in general and the number of persons with dementia in particular rises, the importance of educating geriatric health care professionals increases. Recruitment is, however, impaired by negative stereotypes and insecurity. Previous research has shown that contact with the field of dementia care is important for students' motivation for choosing this career path. This paper presents an extracurricular psychomotor intervention program in which students through eight visits to elderly persons with dementia carry out an intervention involving direct individual contact. Eight psychomotor therapy students participated in follow-up focus group interviews. The purpose was to explore the motivational dynamics that make these experiences meaningful to students. Qualitative analysis of the students' self-assessed outcomes revealed three themes: The relational encounter, Discovering the person, and Making a difference. In combination these themes show important nuances to existing literature on student career dreams by pointing to the benefits of attending to the moment to moment changes in the care situation.

Potential prescribing omissions according to START criteria at the time of hospital discharge

The purpose of this study is to describe the frequency of potential drug prescribing omissions (PPOs) for elderly patients at the time of hospital discharge and to compare the frequency PPOs among different medical specialities. This cross-sectional study examined data from elderly patients when they were admitted for >24 h to a northeastern Brazil teaching hospital during June-December 2016. Were included in the study 227 patients, of whom 36.9% had at least one PPO. The highest number of PPOs was identified among those with at least 5 prescribed drugs. In total, 153 PPOs were identified at hospital discharge. In most cases (78.4%), patients were not evaluated by the specialist physician.The most commonly identified PPOs on discharge were: the omission of statin therapy in cases of diabetes mellitus plus one or more cardiovascular-associated factor; calcium and vitamin D supplements in patients with known osteoporosis; and angiotensin converting enzyme inhibitors in cases of chronic heart failure. The results of this study suggest that the frequency of prescribing omissions PPOs during patient discharge was high. This can be avoided by the careful evaluation by prescribers with experience in certain specialties where several prescribed omissions would be common.

COVID-19 outbreak: organisation of a geriatric assessment and coordination unit. A French example.

Older people are particularly affected by the COVID-19 outbreak because of their vulnerability as well as the complexity of health organisations, particularly in the often-compartmentalised interactions between community, hospital and nursing home actors. In this endemic situation, with massive flows of patients requiring holistic management including specific and intensive care, the appropriate assessment of each patient's level of care and the organisation of specific networks is essential. To that end, we propose here a territorial organisation of health care, favouring communication between all actors. This organisation of care is based on three key points: To use the basis of territorial organisation of health by facilitating the link between hospital settings and geriatric sectors at the regional level.To connect private, medico-social and hospital actors through a dedicated centralised unit for evaluation, geriatric coordination of care and decision support. A geriatrician coordinates this multidisciplinary unit. It includes an emergency room doctor, a supervisor from the medical regulation centre (Centre 15), an infectious disease physician, a medical hygienist and a palliative care specialist.To organise an ad hoc follow-up channel, including the necessary resources for the different levels of care required, according to the resources of the territorial network, and the creation of a specific COVID geriatric palliative care service. This organisation meets the urgent health needs of all stakeholders, facilitating its deployment and allows the sustainable implementation of a coordinated geriatric management dynamic between the stakeholders on the territory.

Caring for Frail Older Adults During COVID-19: Integrating Public Health Ethics into Clinical Practice.

During the coronavirus disease 2019 (COVID-19) pandemic, principles from both clinical and public health ethics cue clinicians and healthcare administrators to plan alternatives for frail older adults who prefer to avoid critical care, and for when critical care is not available due to crisis triaging. This article will explore the COVID-19 Ethical Decision Making Framework, published in British Columbia (BC), Canada, to familiarize clinicians and policy makers with how ethical principles can guide systems change, in the service of frail older adults. In BC, the healthcare system has launched resources to support clinicians in proactive advance care planning discussions, and is providing enhanced supportive and palliative care options to residents of long-term care facilities. If the pandemic truly overwhelms the healthcare system, frailty, but not age alone, provides a fair and evidence-based means of triaging patients for critical care and could be included into ventilator allocation frameworks. J Am Geriatr Soc 68:1666-1670, 2020.

Ethics in Telehealth: Comparison between Guidelines and Practice-based Experience -the Case for Learning Health Systems.

OBJECTIVES: To understand ethical issues within the tele-health domain, specifically how well established macro level telehealth guidelines map with micro level practitioner perspectives. METHODS: We developed four overarching issues to use as a starting point for developing an ethical framework for telehealth. We then reviewed telemedicine ethics guidelines elaborated by the American Medical Association (AMA), the World Medical Association (WMA), and the telehealth component of the Health Professions council of South Africa (HPCSA). We then compared these guidelines with practitioner perspectives to identify the similarities and differences between them. Finally, we generated suggestions to bridge the gap between ethics guidelines and the micro level use of telehealth. RESULTS: Clear differences emerged between the ethics guidelines and the practitioner perspectives. The main reason for the differences were the different contexts where telehealth was used, for example, variability in international practice and variations in the complexity of patient-provider interactions. Overall, published guidelines largely focus on macro level issues related to technology and maintaining data security in patient-provider interactions while practitioner concern is focused on applying the guidelines to specific micro level contexts. CONCLUSIONS: Ethics guidelines on telehealth have a macro level focus in contrast to the micro level needs of practitioners. Work is needed to close this gap. We recommend that both telehealth practitioners and ethics guideline developers better understand healthcare systems and adopt a learning health system approach that draws upon different contexts of clinical practice, innovative models of care delivery, emergent data and evidence-based outcomes. This would help develop a clearer set of priorities and guidelines for the ethical conduct of telehealth.

Ethical issues in nursing home palliative care: a cross-national survey.

OBJECTIVES: With an increased dependency on nursing homes to provide care to the ageing population, it is likely that ethical issues will also increase. This study aimed to identify the type of ethical issues and level of associated distress experienced by nurses providing palliative care in nursing homes in the UK and Canada, and pilot the Ethical issues in Palliative Care for Nursing Homes (EPiCNH) instrument in Canada. METHODS: A cross-sectional survey design was used. One hundred and twenty-three nurses located in 21 nursing homes across the UK and Canada completed the EPiCNH instrument. RESULTS: Frequent ethical issues include upholding resident autonomy, managing family distress, lack of staff communication and lack of time in both countries. Higher levels of distress resulted from poor communication, insufficient training, lack of time and family disagreements. Nurses in Canada experienced a greater frequency of ethical issues (p=0.022); however, there was no statistical difference in reported distress levels (p=0.53). The survey was positively rated for ease of completion, relevance and comprehensiveness. CONCLUSIONS: Nurses' reported comparable experiences of providing palliative care in UK and Canadian nursing homes. These findings have implications on the practice of care in nursing homes, including how care is organised as well as capacity of staff to care for residents at the end of life. Training staff to take account of patient and family values during decision-making may address many ethical issues, in line with global policy recommendations. The EPiCNH instrument has demonstrated international relevance and applicability.

Somaticization, the making and unmaking of minded persons and the fabrication of dementia.

This article examines the strategies by which the different and variable signs of failing mental powers become known sufficiently for 'dementia' to be made into a stable bio-clinical entity, that can be tested, diagnosed and perhaps one day even treated. Drawing on data from ethnographic observations in memory clinics, together with interviews with associated scientists and clinicians, we document the challenges that clinicians face across the clinical and research domain in making dementia a stable object of their investigation. We illustrate how the pressure for early diagnoses of dementia creates tensions between the scientific representations of early dementia and its diagnosis in the clinic. Our aim is to highlight the extent to which the work of diagnosing dementia involves an intricate process of smoothing out seemingly insurmountable problems, such as the notoriously elusive connections between brain/mind and body/person. Furthermore, we show that a part of this process involves enrolling patients as minded, agentic subjects, the very subjects who are excluded from dementia science research in pursuit of biomarkers for the pre-clinical detection of dementia.

Too Old for Freedom? Not Too Late to Try.

The physical, psychological and social aspects of care for older adults in nursing homes has been the subject of research internationally for more than 50 years. Numerous guidelines, models and principles of care have been published, yet in many facilities the lack of care which is "person-focused" remains concerning. Potentially, a return to a basic set of simple principles guiding care, ones which are intrinsically focused on the person, would be of use. Despite the plethora of models within the human care literature, looking outside of this frame might be useful not only for those in aged care at the end of life, but for older individuals more broadly. The argument for examining the "Five Freedoms" for animal welfare, which are recognized and applied internationally, is made, and suggestions for adapting this for human care, consistent within a One Health framework, are offered.

Understanding the priorities of residents, family members and care staff in residential aged care using Q methodology: a study protocol.

INTRODUCTION: Residential aged care facilities (RACFs) are under increasing pressure to provide high-quality, round the clock care to consumers. However, they are often understaffed and without adequate skill mix and resources. As a result, staff must prioritise care by level of importance, potentially leading to care that is missed, delayed or omitted. To date, the literature on prioritisation and missed care has been dominated by studies involving nursing staff, thereby failing to take into account the complex networks of diverse stakeholders that RACFs comprise. This study aims to investigate the priorities of residents, family members and care staff in order to make comparisons between how care is prioritised in RACFs by the different stakeholder groups. METHODS AND ANALYSIS: This study comprises a Q sorting activity using Q methodology, a think-aloud task, a demographics questionnaire and semi-structured interview questions. The study will be conducted in five RACFs across NSW and QLD, Australia. Using purposive sampling, the project will recruit up to 33 participants from each of the three participant groups. Data from the Q sorting activity will be analysed using the analytic software PQMethod to identify common factors (shared viewpoints). Data from the think-aloud task and semi-structured interviews questions will be thematically analysed using the Framework Method and NVivo qualitative data analysis software. ETHICS AND DISSEMINATION: The study has been approved by St Vincent's Health and Aged Care Human Research and Ethics Committee and Macquarie University Human Research Ethics Committee. It is expected that findings from the study will be disseminated: in peer-reviewed journals; as an executive report to participating facilities and a summary sheet to participants; as a thesis to fulfill the requirements of a Doctor of Philosophy; and presented at conferences and seminars.

Developing a Tool for Evaluating Ageism in Nursing Care of Older People in Kashan/Iran.

Ageism implies negative views and attitudes towards older people. These unconscious behaviors could make the elderly feel as if they were no longer useful for the family and community. Ageism is common in healthcare services. The objective of this study was to develop a tool to assess ageism in nursing care in Kashan/Iran 2015. This psychometric study was carried out in four stages: literature review for item generation; content validity testing; exploratory factor analysis (EFA) for evaluation of construct validity; and reliability assessment. The data analyzed with SPSS version 16. The final questionnaire had 24 items. The total CVI and CVR were 0.88 and 0.57. Explanatory factor analysis identified 3 factors of respecting older adult in nursing care (14 items); age discrimination and negative views towards older adults (5 items); attention to older adult and their basic caring needs (5 items). The three factors could explain 49.54% of variance. The test-re-test correlation stood at 0.9. The internal consistency of the questionnaire was Cronbach's alpha =0.85. A valid and reliable instrument for the evaluation of ageism in nursing care was developed in this study.

Toward a global geroethics - gerontology and the theory of the good human life.

Gerontologists have proposed different concepts for ageing well such as 'successful ageing', 'active ageing', and 'healthy ageing'. These conceptions are primarily focused on maintaining health and preventing disease. But they also raise the questions: what is a good life in old age and how can it be achieved? While medical in origin, these concepts and strategies for ageing well also contain ethical advice for individuals and societies on how to act regarding ageing and old age. This connection between gerontology and ethics is overlooked by both schools of thought. We thus develop this research programme for a systematic geroethics in four steps. First, we analyze 'successful ageing' as put forward by Rowe and Kahn as a paradigmatic example of a gerontological conception of ageing well. Then, in a second step, we move from criticisms within gerontology to an ethical perspective; in particular, we want to clarify the problem of the claim of universal validity of conceptions of the good life. In a third constructive step, we explain how the 'capabilities approach' could be applied in this context as a normative foundation for the implicit normative assumptions of gerontological conceptions of ageing well, such as a particular choice of functionings, the ethical relevance of human agency, and the resulting claims of individuals towards society. Finally, using a concept developed by the German philosopher Ursula Wolf, we systematically develop the different aspects of the connection between ageing well and the theory of the good life in their full complexity and show their interconnectedness.

A Theory of Relational Ageism: A Discourse Analysis of the 2015 White House Conference on Aging.

PURPOSE: The widespread use of ageist language is generally accepted as commonplace and routine in most cultures and settings. In order to disrupt ageism, we must examine the use of ageist language and sentiments among those on the front line of providing advocacy, services, and policy for older adults; the professional culture of the aging services network. The recorded video segments from the sixth White House Conference on Aging (WHCOA) provided a unique opportunity to examine discourse used by professionals and appointed representatives in the field of aging within a professional sociocultural context. DESIGN AND METHODS: A qualitative discourse analysis of video recordings was used to analyze the 15 video fragments that comprised the recorded sessions of the 2015 WHCOA. RESULTS: About 26 instances were identified that captured statements expressing personal age, aging or an age-related characteristic negatively in regard to self or other (microageism), and/or statements expressing global negative opinions or beliefs about aging and older adults based on group membership (macroageism). A theoretical pathway was established that represents the dynamic process by which ageist statements were expressed and reinforced (relational ageism). IMPLICATIONS: Numerous instances of ageism were readily identified as part of a live streamed and publically accessible professional conference attended and presented by representatives of the aging services network. To make meaningful gains in the movement to disrupt ageism and promote optimal aging for all individuals, we must raise awareness of the relational nature, expression, and perpetuation of ageism.