Ce chapitre est l'une des contributions de conférenciers intervenus lors d'une journée d'études de l'Ecole de Propédeutique à la Connaissance de l'Inconscient intitulée "Deuil et séparation". L'auteure est intervenue sur le deuil blanc d'une personne atteinte de la maladie d'Alzheimer. Elle définit ce qu'est le deuil blanc, ses répercurssions psychiques tant chez le malade que chez ses proches aidants.
A major unresolved problem in neurodegenerative disease is why and how a specific set of neurons in the brain are highly vulnerable to neuronal death. Multiple pathways and mechanisms have been proposed to play a role in Alzheimer disease (AD), Parkinson disease (PD), amyotrophic lateral sclerosis (ALS), and Huntington disease (HD), yet how they contribute to neuronal vulnerability remains far from clear. In this review, various mechanisms ascribed in AD, PD, ALS, and HD will be briefly summarized. Particular focus will be placed on Rhes-mediated intercellular transport of the HD protein and its role in mitophagy, in which I will discuss some intriguing observations that I apply to model striatal vulnerability in HD. I may have unintentionally missed referring some studies in this review, and I extend my apologies to the authors in those circumstances.
While end-of-life (EOL) care has been a relatively common option for patients with terminal cancer, the utilization of EOL care in Alzheimer disease and other dementias has become available more recently. By the time end-stage dementia is present, the clinicians and caregivers become faced with multiple clinical issues-their inability to provide subjective complaints of pain and discomfort, behavioral symptoms, delirium, food refusal, and so on. In addition to providing quality EOL care to the patients, clinicians need to work with their families in an open and empathic manner, assuring that their loved ones will receive supportive measures to keep them comfortable.
BACKGROUND: Several instruments are available to assess knowledge about hospice care, but none specifically address knowledge about home hospice for persons with Alzheimer's disease (AD).
AIM: To develop and validate the Alzheimer's Disease Home Hospice Knowledge Scale (AD-HHK-S).
METHODS: A total of 107 Israeli family caregivers of persons with dementia (mean age=71.2; 73% female) participated in the study.
RESULTS: The AD-HHK-S included 28 true/false items assessing 3 areas of knowledge: knowledge about hospice, knowledge about home hospice, and knowledge about home hospice for AD. Good internal reliability was found, with Cronbach alpha ranging from 0.72 to 0.85. Good face, construct and predictive validity were found.
CONCLUSIONS: The AD-HHK-S proved to be a valid and reliable tool to assess knowledge about hospice care in the area of AD. It might provide an effective tool for palliative care nurses to communicate with family caregivers of persons with AD at the end of life.
OBJECTIVES: To assess trends and factors associated with place of death among individuals with Alzheimer's disease-related dementias (ADRD).
DESIGN: Cross-sectional analysis.
SETTING: Centers for Disease Control and Prevention Wide-ranging OnLine Data for Epidemiologic Research, 2003-2017.
PARTICIPANTS: Natural deaths occurring between 2003 and 2017 for which ADRD was determined to be the underlying cause.
MEASUREMENTS: Place of death was categorized as hospital, home, nursing facility, hospice facility, and other. Aggregate data included age, race, Hispanic ethnicity, sex, urbanization, and census division. Individual-level predictors included age, race, Hispanic ethnicity, sex, marital status, and education.
RESULTS: From 2003 to 2017, nursing facility and hospital deaths declined from 65.7% and 12.7% to 55.0% and 8.0% while home and hospice facility deaths increased from 13.6% and .2% to 21.9% and 6.2%, respectively. Odds of hospital and hospice facility deaths declined with age while odds of nursing facility deaths increased with age. Male sex was associated with higher odds of hospital or hospice facility death and lower odds of home or nursing facility death. Nonwhite race, Hispanic ethnicity, and being married were associated with increased odds of hospital or home death and reduced odds of nursing facility death. More education was associated with higher odds of home or in a hospice facility death and reduced odds of death in a nursing facility or hospital. Significant disparities in place of death by urban-rural status were also noted.
CONCLUSION: As ADRD deaths at home increase, the need for caregiver support and home-based palliative care may become more critical. Further research should examine the care preferences and experiences of ADRD patients and caregivers, the financial impact of home death on families and insurers, and explore factors that may contribute to differences in actual and preferred place of death.
The purpose of this study is to determine family caregivers' recommendations for professional health care professionals on how to help prepare them for the death of an elder with dementia. Purposive criterion sampling was employed to identify 30 bereaved caregivers of family members aged 65 and older who died with a dementia-related diagnosis. In-depth, qualitative interviews were conducted over a 12-month period, and qualitative content analysis was used to analyze the data. Three primary themes emerged: (a) Educate Caregivers, (b) Lead Caregivers, and (c) Provide a Caring and Compassionate Presence. The results highlight the importance of various health care professionals' roles in preparing family caregivers for a death. In doing so, both the dying and their caregivers may have a better end-of-life experience with improved bereavement outcomes.
This paper focuses on the author’s mother, a subject whose ageing process was speeded and whose morality was challenged by the myriad and unpredictable effects of Alzheimer’s disease. Using an archive of recorded conversations, the paper examines some of the existential questions with which the mother grappled until she lost the ability to speak. It considers these late ethical expressions in the context of her earlier political activism, marks her brief obsession with the possibility of assisted dying, and concludes by assessing the relative “goodness” of her very recent death in some of the terms that she herself established.
Is it possible to end one’s life well with dementia? The perception of dementia as death brought into life flows from ideas about humanness embedded in medicine’s Cartesian paradigm. Dementia as incurable brain disease exacerbates negativity. But the real impact of dementia is that it changes social relations: to live well with dementia requires a relational not Cartesian understanding of life. A relational ontology prioritizes social health: to live is to be held in connection. Negativity produces the disconnection that is death, with or without disease. When people with dementia are held in connection, they live a better life.
Qu'en est-il des personnes atteintes de la maladie d'Alzheimer, qui s'éloignent lentement du lien social ? L'auteur, sociologue, soutient que ces malades se désinvestissent du monde en réduisant leurs facultés mentales. Comment la famille et les soignants peuvent-ils les accompagner dans ce détachement du monde ? Le proche ou le soignant, qui prend le temps de regarder la personne atteinte de la maladie d'Alzheimer, la reconnaît alors dans son humanité et recrée ainsi du lien social.
Lorsqu’on accompagne une personne arrivant en fin de vie, qui souffre d’un Alzheimer, ou se retrouve en soins palliatifs, comment anticiper le deuil tout en respectant la personne ? Comment accompagner le mourant en lui apportant le soutien qu’il attend ? Comment accompagner un proche en fin de vie ? Comment traverser un deuil ? Comment accepter la séparation ?
Autant de questions auxquelles cet ouvrage tente de répondre.
Background: Despite the importance of persons with dementia (PWDs) engaging in advance care planning (ACP) at a time when they are still competent to appoint a surrogate decision maker and meaningfully participate in ACP discussions, studies of ACP in PWDs are rare.
Objective: We conducted an intervention development study to adapt an efficacious ACP intervention, SPIRIT (sharing patient's illness representations to increase trust), for PWDs in early stages (recent Montreal Cognitive Assessment [MoCA] score =13) and their surrogates and assess whether SPIRIT could help PWDs engage in ACP.
Design: A formative expert panel review of the adapted SPIRIT, followed by a randomized trial with qualitative interviews, was conducted. Patient–surrogate dyads were randomized to SPIRIT in person (in a private room in a memory clinic) or SPIRIT remote (via videoconferencing from home).
Setting/Subjects: Twenty-three dyads of PWDs and their surrogates were recruited from an outpatient brain health center. Participants completed preparedness outcome measures (dyad congruence on goals of care, patient decisional conflict, and surrogate decision-making confidence) at baseline and two to three days post-intervention, plus a semistructured interview. Levels of articulation of end-of-life wishes of PWDs during SPIRIT sessions were rated (3 = expressed wishes very coherently, 2 = somewhat coherently, and 1 = unable to express coherently).
Results: All 23 were able to articulate their end-of-life wishes very or somewhat coherently during the SPIRIT session; of those, 14 PWDs had moderate dementia. While decision-making capacity was higher in PWDs who articulated their wishes very coherently, MoCA scores did not differ by articulation levels. PWDs and surrogates perceived SPIRIT as beneficial, but the preparedness outcomes did not change pre–post.
Conclusions: SPIRIT engaged PWDs and surrogates in meaningful ACP discussions, but requires testing of efficacy and long-term outcomes.
Background and Objectives: To address the unique characteristics of Alzheimer's disease and related dementias (ADRD) that complicate end-of-life (EOL), we created, refined, and validated a dementia-focused EOL planning instrument for use by healthy adults, those with early-stage dementia, family caregivers, and clinicians to document EOL care preferences and values within the current or future context of cognitive impairment.
Research Design and Methods: A mixed-method design with four phases guided the development and refinement of the instrument: (1) focus groups with early-stage ADRD and family caregivers developed and confirmed the tool content and comprehensiveness; (2) evaluation by content experts verified its utility in clinical practice; (3) a sample of healthy older adults (n = 153) and adults with early-stage ADRD (n = 38) completed the tool, whose quantitative data were used to describe the psychometrics of the instrument; and (4) focus groups with healthy older adults, family caregivers, and adults with early-stage ADRD informed how the guide should be used by families and in clinical practice.
Results: Qualitative data supported the utility and feasibility of a dementia-focused EOL planning tool; the six scales have high internal consistency (a = 0.66–0.89) and high test–rest reliability (r = .60–.90). On average, both participant groups reported relatively high concern for being a burden to their families, a greater preference for quality over length of life, a desire for collaborative decision-making process, limited interest in pursuing life-prolonging measures, and were mixed in their preference to control the timing of their death. Across disease progression, preferences for location of care changed, whereas preferences for prolonging life remained stable.
Discussion and Implications: The LEAD Guide (Life-Planning in Early Alzheimer's and Dementia) has the potential to facilitate discussion and documentation of EOL values and care preferences prior to loss of decisional capacity, and has utility for healthy adults, patients, families, providers, and researchers.
Background: Requests for physician-assisted death (PAD) in patients with cognitive impairment are complex and require careful consideration. Of particular difficulty is determination of whether the request is voluntary and well considered.
Results: Euthanasia and physician-assisted suicide (PAS) are both legal in The Netherlands, Luxemburg, Colombia, and Canada. Euthanasia is legal in Belgium, while PAS is legal in Switzerland and Oregon, Washington, Montana, Vermont, and California (USA). Upon a PAD request, evaluation of the capacity to consent medical treatment is relevant for the decision-making process, while evaluation of testamentary capacity is appropriate before an advance euthanasia directive is written. Anosognosia assessment throughout the Alzheimer's disease continuum provides essential and relevant information regarding the voluntary and well-considered nature of the PAD request; meanwhile, early assessment of hypernosognosia or subjective cognitive decline assists in formulation of a clinical prognosis. Furthermore, the assessment of physical and psychological suffering should incorporate verbal and nonverbal cues as well as consideration of the psychosocial factors that might affect due care criteria.
Conclusion: The clinical approach to a PAD request should consider the legal framework and the decision-making capacity, assess memory deficit awareness and the perception of suffering, and evaluate mental competency when considered pertinent.
ABSTRACT: Objectives:To examine factors that influence decision-making, preferences, and plans related to advance care planning (ACP) and end-of-life care among persons with dementia and their caregivers, and examine how these may differ by race.
DESIGN: Cross-sectional survey.
SETTING: 13 geographically dispersed Alzheimer's Disease Centers across the United States.
PARTICIPANTS: 431 racially diverse caregivers of persons with dementia.
MEASUREMENTS: Survey on "Care Planning for Individuals with Dementia."
RESULTS: The respondents were knowledgeable about dementia and hospice care, indicated the person with dementia would want comfort care at the end stage of illness, and reported high levels of both legal ACP (e.g., living will; 87%) and informal ACP discussions (79%) for the person with dementia. However, notable racial differences were present. Relative to white persons with dementia, African American persons with dementia were reported to have a lower preference for comfort care (81% vs. 58%) and lower rates of completion of legal ACP (89% vs. 73%). Racial differences in ACP and care preferences were also reflected in geographic differences. Additionally, African American study partners had a lower level of knowledge about dementia and reported a greater influence of religious/spiritual beliefs on the desired types of medical treatments. Notably, all respondents indicated that more information about the stages of dementia and end-of-life health care options would be helpful.
CONCLUSIONS: Educational programs may be useful in reducing racial differences in attitudes towards ACP. These programs could focus on the clinical course of dementia and issues related to end-of-life care, including the importance of ACP.
Objectives: As key team members caring for people with advanced illness, nurses teach patients and families about managing their illnesses and help them to understand their options. Our objective was to determine if nurses' personal healthcare experience with serious illness and end-of-life (EOL) care differs from the general population as was shown for physicians.
Design: Observational propensity-matched cohort study.
Setting: Fee-or-service Medicare.
Participants: Nurses' Health Study (NHS) and a random 20% national sample of Medicare beneficiaries aged 66 years or older with Alzheimer's disease and related dementias (ADRD) or congestive heart failure (CHF) diagnosed in the hospital.
Measurements: Characteristics of care during the first year after diagnosis and the last 6 months of life (EOL).
Resuts: Among 57 660 NHS participants, 7380 had ADRD and 5375 had CHF; 3227 ADRD patients and 2899 CHF patients subsequently died. Care patterns in the first year were similar for NHS participants and the matched national sample: hospitalization rates, emergency visits, and preventable hospitalizations were no different in either disease. Ambulatory visits were slightly higher for NHS participants than the national sample with ADRD (13.1 vs 12.5 visits; P < .01) and with CHF (13.7 vs 12.5; P < .001). Decedents in the NHS and national sample had similar acute care use (hospitalization and emergency visits) in both diseases, but those with ADRD were less likely to use life-prolonging treatments such as mechanical ventilation (10.9% vs 13.5%; P = .001), less likely to die in a hospital with a stay in the intensive care unit (10.4% vs 12.1%; P = .03), and more likely to use hospice (58.9% vs 54.8%; P < .001). CHF at the EOL results were similar.
Conclusions: Nurses with newly identified serious illness experience similar care as the general Medicare population. However, at EOL, nurses are more likely to choose less aggressive treatments than the patients for whom they care.
L'ouvrage évoque l'accompagnement des personnes atteintes de la maladie d'Alzheimer. A partir de son expérience d'infirmière, l'auteure partage les témoignages des familles venues dans le centre d'accueil de jour qu'elle a ouvert. Des points de vue de neurologues et de neuropsychologues sont également présentés.
L'auteure a suivi durant huit mois la vie de neuf résidents d'un habitat collectif pour personnes âgées. Située dans la région lyonnaise, cette structure accueille des personnes atteintes de la maladie d'Alzheimer et de différents troubles psychiatriques. Les notes prises au jour le jour reflètent avec humour les soins et les difficultés qui caractérisent le quotidien de ces patients.
OBJECTIVES: The purpose of this study was to assess laypersons' attitudes and completion of advance care planning (ACP) and to examine associations with sociodemographic characteristics and health beliefs on Alzheimer's disease.
METHODS: A cross-sectional telephone survey was conducted during April and May 2017, with a sample of 514 Israeli adults, aged 18 years and above. A structured, pretested questionnaire assessing participants' awareness, attitudes, and completion of ACP, as well as health beliefs on Alzheimer's disease (subjective knowledge, susceptibility, and worry), and sociodemographic factors, was used.
RESULTS: Two-fifths of the participants had heard of at least one of the terms: advance directives or durable power of attorney. Overall, participants expressed positive attitudes toward ACP. Results of regression models showed that gender, religiosity, and subjective knowledge of Alzheimer's disease were statistically significant correlates of attitudes toward ACP. Adding health beliefs on Alzheimer's disease doubled the amount of the variance explained, from 3% to 6%.
SIGNIFICANCE OF RESULTS: Our results support the use of cognitive models of health behavior by assessing intra-personal beliefs and knowledge to understand ACP attitudes and completion. Specifically, we demonstrated the importance of knowledge of Alzheimer's disease for ACP attitudes, suggesting the importance of including a module on the topic to ACP interventions.
Seven states have legalized physician-assisted death (PAD) for competent, terminally ill individuals; these criteria exclude persons with dementia (PWD). However, there is ethical and policy discussion around expanding access to PAD to people with Alzheimer disease (AD). Here, we present attitudes toward PAD of cognitively normal individuals enrolled in a clinical trial that required them to learn whether they have elevated amyloid-ß, a biomarker that increases risk for cognitive decline owing to AD.