Understanding of legal aspects of Alzheimer disease among caregivers, medical students, and healthcare professionals. / Nivel de conocimiento de aspectos legales de la enfermedad de Alzheimer en cuidadores, estudiantes y profesionales sanitarios.

INTRODUCTION: Modification of legal capacity is a protective measure involving a judicial procedure; a deeper understanding of this concept is necessary for its execution in such vulnerable populations as patients with Alzheimer disease (AD). Unawareness of a patient's legal capacity and failure to adequately protect them may give rise to situations of avoidable risk. PATIENTS AND METHODS: We designed a closed survey for informal caregivers of patients with AD, the general population, medical students, and healthcare professionals to determine the degree of understanding of the concept of modified legal capacity. RESULTS: The survey was administered to a total of 401 individuals: 100 caregivers, 117 members of the general population, 128 medical students, and 58 healthcare professionals. Women accounted for 66.1% of the sample (n=265); mean age (SD) was 43.2 (0.9) years. The overall mean survey score was 7.7 (0.9). By group, caregivers scored 7.5 (0.18), the general population scored 6.9 (0.16), students scored 8.4 (0.17), and healthcare professionals scored 8.7 (0.20) (P=.000). Of all respondents, 78.8% had not received information on legal issues related to dementia. Among students, no significant differences in survey score were observed between members of different years (P>.05). CONCLUSIONS: There is a low level of understanding of modified legal capacity and of the legislation governing issues related to cognitive impairment among caregivers, the general population, and even medical students. It is important to design strategies to improve understanding of the concept, particularly among future healthcare professionals.

El cuidado humanizado en la muerte por COVID-19: a propósito de un caso / Humanized care in a death for covid-19: a case study

La población mundial está sufriendo una pandemia por infección del virus SARS-Cov-2, que provoca la enfermedad COVID-19. En España, la tasa de crecimiento de la epidemia es del 6,79% desde la activación del estado de alarma y un porcentaje de defunciones del 9,07% del total de infectados. Las recomendaciones del Ministerio de Sanidad para profesionales de la salud en contacto con personas infectadas, o sospecha de ello, incluyen la colocación de dispositivos de protección individual (mascarilla FPP2, guantes, bata impermeable, gorro, y gafas protectoras o pantalla). Una vez colocado todo el material, es necesario reflexionar acerca de la humanización de los cuidados enfermeros a las personas en situación agónica infectadas porCOVID-19, a propósito de un caso. La pretensión es la puesta en valor del pensamiento enfermero para salvar esa distancia, y mantener unos cuidados lo más humanos y cercanos posibles, al final de la vida

The world population is experiencing a pandemic due to infection with the SARS-Cov-2 virus, which causes the COVID-19 disease. In Spain, the growth rate of the epidemic is 6.79% since the alarm activation with 9,1% of deaths of the total infected. Recommendations of the National Government to prevent health professional contagion include the placement of personal protection devices (FPP2 mask, gloves, waterproof gown, hat, and protective glasses or screen). Once all the material is in place, it is necessary to argue about the humanization of nursing caring in people suffering dying situation, who are infected with COVID-19, regarding a clinical case. The aim is to enhance nursing thinking to bridge that distance, and maintain care as human and close as possible, at the end of life

What you say and what I want: Priorities for public health campaigning and initiatives in relation to dementia.

OBJECTIVE: To examine the overlap between priorities expressed by representatives from national and local campaigning organisations and the views of key voices in relation to dementia. METHODS: Semi-structured, in-depth telephone interviews were conducted with 19 representatives from campaigning organisations, including nine countries and six local community initiatives in Australia. Responses were categorised into nine priorities. Views were compared to the voices of people with dementia (n = 19), carers (n = 28), and health-care (n = 21), social work (n = 23) and service professionals (n = 20). RESULTS: Local groups prioritised user-led decision-making and community normalising agendas. National groups were influenced by service frameworks and increasing public awareness. Professional and carer groups focused on increasing understanding and communication skills while people with dementia valued being a normal part of society. CONCLUSION: Future campaigning should use both national and local approaches to changing social relations, through interpersonal connections, advocacy and social mobilisation, to promote a normalising approach to attitude change.

'Cautiously optimistic': Older parent-carers of adults with intellectual disabilities - Responses to the Care Act 2014.

This article discusses potential opportunities for best practice in the United Kingdom that may be brought about by the Care Act (2014). Carers in the United Kingdom were given new rights within this legislation with a focus on needs led assessment. The underpinning philosophy of the Care Act is to streamline the previous legislation and offers a framework for carers and people in receipt of care, to enable a more personalized approach to care and support. Offering a discussion of likely opportunities brought about by provisions of the Care Act, this article draws on a small study involving older parent/carers of sons or daughters with intellectual disabilities. Exploring the extent to which such parents of adults with intellectual disabilities were aware of the details of this legislation and the potential impact it may have on their lives highlighted other significant areas, some of which are discussed below. Semi-structured interviews were conducted with five parents over the age of 60 of sons or daughters with intellectual disabilities in North West England. The study adds to the body of knowledge and understanding about parents of adults with intellectual disabilities and explores and provides a deeper understanding of parents' experiences of the implementation of this specific piece of legislation and their perception of the relevance of it to themselves. Findings include some awareness of the legislation and some feelings of optimism about its likely implications, although participants appeared less clear about the specificities and the impact of these upon them and/or their sons or daughters. Findings from the semi-structured interviews also showed parent's articulation of the extent of reciprocal care manifest between them and their son or daughter with an intellectual disability, as well as an awareness of the fragility of their own emotional well-being.

Historical Mismatch Between Home-Based Care Policies And Laws Governing Home Care Workers.

Americans generally want to remain in their homes even if they develop chronic health problems or disabilities that qualify them for nursing home care. While family members or friends provide the preponderance of home-based support, millions of Americans use paid personal assistance services (PAS). Inexorable demographic trends are increasing the numbers of people who need paid home-based PAS, with this need rapidly outstripping the capacity of the paid PAS workforce. While many factors contribute to this widening discrepancy, its roots reach back more than eighty years to asynchrony among various policies affecting home-based supports for people with functional impairments and policies affecting home-based PAS workers. Finding solutions to the growing gap between demand for the services and the PAS workforce requires policies that cut across societal sectors and align incentives for consumers, workers, and other key stakeholders.

Responding to Requests for Aid-in-Dying: Rethinking the Role of Conscience.

This case study illustrates the complex role that a physician's conscience can play in end-of-life care. We examine a case from Vermont in which a terminally ill patient requests aid-in-dying from her primary care physician under the state's "Patient Choice and Control at End of Life" Act (Act 39). The physician feels conflicted: she is opposed to prescribing death-hastening medication but does not want to abandon her patient. Much of the medical ethics literature on conscience focuses on whether health care professionals should be permitted to abstain from providing morally contested medical services. Our analysis highlights the interplay of conflicting values that inform the physician's engagement with aid-in-dying, demonstrating that the issue is often more nuanced than the question of whether or not a physician can (or should) opt out.

Are We Ready for the CARE Act?: Family Caregiving Education for Health Care Providers.

The CARE Act, law in 40 states and territories in the United States, requires hospitals to identify and include family caregivers during admission and in preparation for discharge. Although the number of family caregivers has been steadily increasing, health care providers are ill-prepared to address their needs, and caregiving remains a neglected topic in health care providers' education. A market analysis was performed to explore the availability of and interest in interprofessional courses and programs focused on preparing health professionals to support family caregivers. Although nurses and chief nursing officers agreed on the importance of supporting caregivers, they were less likely to endorse formal educational preparation for this complex role. The current study elucidates a gap between what caregivers report they need and the preparation of health care professionals to advance family-centered approaches to care. [Journal of Gerontological Nursing, 45(3), 7-11.].

Maine's Bold Initiative: Homecare for All.

A 2018 ballot initiative in Maine proposed universal home care and improved work conditions for home care workers.Although ultimately defeated, the innovative proposal received considerable support and laid the groundwork for an upcoming legislative campaign.It offers a framework for increasing access to home care and creating quality jobs for home care aides. This commentary reviews the problems addressed by the Homecare for All initiative, what was proposed, the campaign process and anticipated next steps, and implications for gerontological social workers.

Progress and Policy Opportunities in Family Caregiver Assessment: Results From a National Survey.

Family caregivers play an essential role in long-term services and supports (LTSS). Despite numerous calls for robust caregiver assessment policies to determine needs and treat them as partners in care planning, there has been limited information about whether or how states assess caregiver needs and strengths, or use caregiver information. Using cross-sectional survey data from the 2015 Process Evaluation of the Older Americans Act National Family Caregiver Support Program (NFCSP), this study analyzes caregiver assessment policies and practices in 54 State Units on Aging, 619 Area Agencies on Aging, and 642 local service providers. It examines whether and for what purposes caregiver assessments are used, what domains are included, and how well current policies conform to recommended practice. It also recommends that policy makers who influence NFCSP and other LTSS programs develop caregiver assessment practices using a multidimensional framework including more caregiver-focused domains and utilizing assessment data to measure program outcomes.

The Effect of California's Paid Family Leave Program on Employment Among Middle-Aged Female Caregivers.

BACKGROUND AND OBJECTIVES: This study examined the effect of a Paid Family Leave program in California (CA-PFL) on employment among middle-aged female caregivers. We also examined differences in the relationship between the availability of paid family leave (PFL) and employment in socioeconomic subgroups of midlife women. RESEARCH DESIGN AND METHODS: Data came from multiple years (2000‒2014) of the Current Population Survey (CPS) (N = 68,773 individuals). Applying a Difference in Differences (DiD) approach to removing potential selection biases related to program participation, we used a logistic regression to estimate the effects of PFL. RESULTS: There was a significant increase in the likelihood of working based on CA-PFL. This positive effect, however, was found only among the early middle-aged, the near-poor, and those had the highest level of education. DISCUSSION AND IMPLICATIONS: Among the late middle-aged, caregiving burden may not affect decisions on whether to exit the labor market, and PFL may not significantly mitigate the well-known negative effects of intense and multiple caregiving roles (parents, spouse, and/or children with disabilities). Future studies should examine PFL effects and their correlates such as age-cohorts, caregiving intensity, and retirement patterns. The unexpected null findings of CA-PFL's effect on employment outcomes for the poor and those with low education levels suggests these vulnerable groups might not be able to fully benefit from the originally intended goal of the policy, instead being left more vulnerable compared to the near poor. Such a possibility increases the importance of focused research and policymaking attention for this group.

Agency in dementia care: systematic review and meta-ethnography.

ABSTRACTObjectives:Dementia often limits the agency of the person to such an extent that there is need for external support in making daily life decisions. This support is usually provided by family members who are sometimes legally empowered to engage in decision-making on behalf of the person for whom they care. However, such family carers receive little or no information on how to best provide support when there is a lack of capacity. This may have an impact on the agency of the person with dementia. This review explores the experience of agency in people living with dementia. DESIGN: A systematic search was conducted on IBSS, MedLine, PsychINFO, EMBASE, and CINAHL. Two independent researchers screened the studies and conducted the quality appraisal. We used meta-ethnography for data analysis. As part of the synthesis, we identified behavioral mechanisms underlying the process of decision-making and looked at how the support of carers comes into play in making deliberate choices. RESULTS: The meta-ethnography involved 20 studies. Three levels of third-order constructs were identified, each describing a decision-making pathway and reflecting the degree of autonomy of the person with dementia: autonomous decision-making, shared decision-making, and pseudo decision-making. Findings highlight those inter-relational processes that promote or negatively impact on the agency of people with dementia. CONCLUSIONS: Our review will provide health and social care personnel with an understanding of the role of the carer in the decision-making process, and therefore which mechanisms need to be promoted or discouraged through training.

Procedural Framework to Facilitate Hospital-Based Informed Consent for Dementia Research.

Improving quality and delivery of care for people with Alzheimer disease and related dementias (ADRD) requires a comprehensive research agenda that encompasses the entire care continuum. Logistical and ethical challenges of informed consent for research participation of persons with ADRD include determination of capacity to consent, surrogate consent when capacity to consent is compromised, timely identification of the legally authorized representative (LAR) providing surrogate consent, and balancing residual autonomy with surrogate consent. Short stays; limited access to patients, caregivers, and LARs; and fluctuating influences of acute illness on capacity determination compound these challenges in the acute care setting. To address these challenges, we worked with the University of Wisconsin Health Sciences Institutional Review Board to develop a procedural framework for obtaining informed consent from hospitalized individuals with ADRD and their caregivers to participate in a minimal risk care intervention. The framework is specially designed for minimal risk situations in which rapid enrollment is a necessity and uses rapid identification of surrogates to consent for patients who lack legal capacity to make medical decisions, indicated by an activated healthcare power of attorney, and individualized formal assent procedures for patients who lack capacity to consent. These methods were proven effective in facilitating hospital-based recruitment in an ongoing randomized controlled trial and provide a basis for increasing access to acute care clinical research for persons with ADRD. Bolstering research participation through more easily used consent procedures during acute illness is critical to fostering improvements in the delivery of high-quality care to persons with ADRD. J Am Geriatr Soc 66:2243-2248, 2018.

Neglect by carers.

There have been two widely reported criminal cases where informal carers, including family members, have been found guilty of the gross negligence manslaughter of the vulnerable person in their care. In this article, Richard Griffith considers the duty on informal carers when caring for a person and the duty on district nurses to protect vulnerable persons from harm.