BACKGROUND: Persons with dementia may have severe physical and psychological symptoms at the end of life. A therapy dog used in their care can provide comfort and relieve thier anxiety. The dog handler guides the dog during the interaction with the patient.
AIM: To describe the impact of therapy dogs on people with dementia in the final stages of life from the perspective of the dog handler.
METHODS: Interviews were conducted and analysed using qualitative content analysis.
FINDINGS: The dog provides comfort and relief through its presence and by responding to the physical and emotional expressions of the dying person.
CONCLUSIONS: Interactions with dogs were found to have a positive impact on persons with dementia and eased the symptoms associated with end of life according to the dog handlers.
Background: Non-Hispanic black and dementia patients receive more invasive and futile treatment at end of life (EOL) relative to others. Little is known about the relationship between race/ethnicity, dementia, and EOL care quality.
Objective: Identify the relationship between race/ethnicity, dementia, and proxy reporters' evaluation of EOL care quality in older adults.
Design: Latent class analysis (LCA) of national survey data.
Setting: 1588 deceased Medicare beneficiaries age 65 and older from the National Health and Aging Trends Study (2011-2016).
Measurements: LCA identified three types of quality EOL care using nine measures of symptom management, quality of healthcare encounters, and dignified treatment. Race and dementia were primary predictors of EOL care quality type. Adjusted models controlled for decedent education, sex, marital status, age, number of illnesses, number of hospitalizations, self-rated health, place of death, hospice involvement, and proxy relationship to decedent and familiarity with care.
Results: Over 20% of proxies report that dying individuals experienced suboptimal EOL care quality, characterized by pain, sadness, poor communication, and inattention to personal care needs. In adjusted analyses, proxies for non-Hispanic black decedents were less likely to provide negative care assessments than proxies for non-Hispanic white decedents (adjusted odds ratio [AOR]: 0.58; 95% confidence interval [CI]: 0.40-0.86). Proxies for decedents with dementia were less likely to provide negative assessments than proxies for decedents without dementia (AOR: 0.70; 95% CI: 0.51-0.97).
Implications: Efforts to improve EOL care quality are needed. More positive EOL care quality assessments for non-Hispanic Black and dementia decedents appear counterintuitive given research demonstrating that these groups of individuals are likely to have received suboptimal EOL care. Because caregiver expectations for care may differ by decedent race and dementia status, research is needed to explore the role of caregiver expectations for EOL care to explain these paradoxical findings.
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 Ethics Subcommittee of AMDA-The Society for Post-Acute and Long-Term Care Medicine ("The Society") presents arguments for and against Stopping Eating and Drinking by Advance Directives (SED by AD). SED by AD is a type of advance directive in which a proxy is instructed to stop offering food and fluids to a person when they reach a certain stage of dementia. Although most conversations regarding SED by AD focus on patient autonomy and the right to determine one's care, we propose that the ethical principle of justice-the obligation to treat all individuals equally regardless of race, gender, and physical or cognitive ability-is the decisive principle in this controversy. We also suggest that implementing SED by AD can violate a physician's obligation to beneficence and nonmaleficence. On the other hand, we identify with the families of our patients who see the refusal to follow an advance directive as an injustice of the highest order. In the end, The Society is convinced that no choice can be made here without practicing an injustice: if one refuses to implement SED by AD, one violates the autonomy of the person who drew up the advance directive. If, on the other hand, one refuses food and fluid to a resident who still accepts food, one risks practicing an injustice against that person as they are now. Recognizing that we have the greatest responsibility to our patients as they present to us in the residential setting, The Society recommends against implementing SED by AD in residents who still accept food and fluids, implementing instead, a policy of comfort feeding for those with advanced dementia.
BACKGROUND AND OBJECTIVES: Agitation is common in people living with dementia especially at the end of life. We examined how staff interpreted agitation behavior in people with dementia nearing end of life, how this may influence their responses and its impact on the quality of care.
RESEARCH DESIGN: Ethnographic study. Structured and semi-structured non-participant observations (referred to subsequently in this paper as "structured observations") of people living with dementia nearing the end of life in hospital and care homes (south-east England) and in-depth interviews with staff, conducted August 2015-March 2017.
METHODS: Three data sources: 1) detailed field notes, 2) observations using a structured tool and checklist for behaviors classed as agitation and staff and institutional responses, 3) staff semi-structured qualitative interviews. We calculated the time participants were agitated and described staff responses. Data sources were analyzed separately, developed continuously and relationally during the study and synthesized where appropriate.
RESULTS: We identified two main 'ideal types' of staff explanatory models for agitation: In the first, staff attribute agitated behaviors to the person's "moral judgement", making them prone to rejecting or punitive responses. In the second staff adopt a more "needs-based" approach in which agitation behaviors are regarded as meaningful and managed with proactive and investigative approaches. These different approaches appear to have significant consequences for the timing, frequency and quality of staff response. While these models may overlap they tend to reflect distinct organizational resources and values.
CONCLUSIONS: Care worker knowledge about agitation is not enough, and staff need organizational support to care better for people living with dementia towards end of life. Positional theory may help to explain much of the cultural-structural context that produces staff disengagement from people with dementia, offering insights on how agitation behavior is reframed by some staff as dangerous. Such behavior may be associated with low-resource institutions with minimal staff training where the personhood of staff may be neglected.
BACKGROUND: In the Netherlands, in 2002, euthanasia became a legitimate medical act, only allowed when the due care criteria and procedural requirements are met. Legally, an Advanced Euthanasia Directive (AED) can replace direct communication if a patient can no longer express his own wishes. In the past decade, an exponential number of persons with dementia (PWDs) share a euthanasia request with their physician. The impact this on physicians, and the consequent support needs, remained unknown. Our objective was to gain more insight into the experiences and needs of Dutch general practitioners and elderly care physicians when handling a euthanasia request from a person with dementia (PWD).
METHODS: We performed a qualitative interview study. Participants were recruited via purposive sampling. The interviews were transcribed verbatim, and analyzed using the conventional thematic content analysis.
RESULTS: Eleven general practitioners (GPs) and elderly care physicians with a variety of experience and different attitudes towards euthanasia for PWD were included. Euthanasia requests appeared to have a major impact on physicians. Difficulties they experienced were related to timing, workload, pressure from and expectations of relatives, society's negative view of dementia in combination with the 'right to die' view, the interpretation of the law and AEDs, ethical considerations, and communication with PWD and relatives. To deal with these difficulties, participants need support from colleagues and other professionals. Although elderly care physicians appreciated moral deliberation and support by chaplains, this was hardly mentioned by GPs.
CONCLUSIONS: Euthanasia requests in dementia seem to place an ethically and emotionally heavy burden on Dutch GPs and elderly care physicians. The awareness of, and access to, existing and new support mechanisms needs further exploration.
While many people are skeptical that we can harm the dead, much of our discourse depends on it. I defend the claim that we can harm the dead by presenting a new way to think about how the dead can be harmed, and I show that the reasons we can harm the dead shed light on many issues in bioethics, including organ donation, posthumous reproduction, end-of-life decisions, and advance directives for dementia.
Background: End-of-life care for older people with dementia is often sub-optimal. Understanding the experiences of the relatives involved in the care of the person with dementia may help to improve care practice.
Aims: To investigate relatives' experiences with end-of-life care for people with dementia, comparing the nursing home and home setting.
Methods: In-depth interviews were conducted with 32 individuals who were bereaved of someone with dementia. Thematic analysis was performed to identify main themes from the data.
Findings: Experiences translated into four themes: acknowledging human dignity; being recognised as an important caregiver; (not) talking about death and dying and making decisions together. A lack of person-centered care was mainly evident in nursing homes. Relatives took on a more prominent role in the care of the older person with dementia when the relative was cared for in a home setting and this involvement in the care of the older person was something that the relatives valued. Surrogate decision-making induced similar challenges in both settings.
Conclusion: It is important that healthcare professionals inform and support relatives to help them make decision about end-of-life care and preferences. Nursing homes should learn to offer the same standard of person-centred care as a home care setting, and ensure that relatives are still involved in the care of the person with dementia.
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.
Background: Many people with advanced dementia live in residential aged care homes. Care home staff need the knowledge and skills to provide high-quality end-of-life (EOL) dementia care. However, several studies have found EOL dementia care to be suboptimal, and care staff have reported they would benefit from training in palliative care and dementia. Simulation offers an immersive learning environment and has been shown to improve learners’ knowledge and skills. However, there is little research on simulation training for residential care staff.
This article presents the development and evaluation protocol of IMproving Palliative care Education and Training Using Simulation in Dementia (IMPETUS-D) - a screen-based simulation training program on palliative dementia care, targeted at residential care staff. IMPETUS-D aims to improve the quality of palliative care provided to people living with dementia in residential care homes, including avoiding unnecessary transfers to hospital.
Methods: A cluster RCT will assess the effect of IMPETUS-D. Twenty-four care homes (clusters) in three Australian cities will be randomised to receive either the IMPETUS-D intervention or usual training opportunities (control). The primary outcome is to reduce transfers to hospital and deaths in hospital by 20% over 6-months in the intervention compared to the control group. Secondary outcomes include uptake of goals of care plans over 6 and 12 months, change in staff knowledge and attitudes towards palliative dementia care over 6 months, change in transfers to hospital and deaths in hospital over 12 months. For the primary analysis logistic regression models will be used with standard errors weighted by the cluster effects. A mixed methods process evaluation will be conducted alongside the cluster RCT to assess the mechanisms of impact, the implementation processes and contextual factors that may influence the delivery and effects of the intervention.
Discussion: In Australia, the need for high-quality advanced dementia care delivered in residential aged care is growing. This study will assess the effect of IMPETUS-D a new simulation-based training program on dementia palliative and EOL care. This large multisite trial will provide robust evidence about the impact of the intervention. If successful, it will be distributed to the broader residential care sector.
Narratives that frame the end of life with dementia as undignified reveal moral claims on which lives are considered worth living. These claims are deeply rooted in the medicalization of death and its appeal to dignity. Drawing from ethnographic fieldwork in nursing homes for people with dementia in The Netherlands, I demonstrate how the end of life with dementia is managed through such moral frames. Specifically, I elaborate on the production of lives (not) worth living and explore how family members welcomed the death of a loved one with dementia. I argue that the welcoming of death is not an act of indifference but can be seen as a form of care.
OBJECTIVE: To describe the characteristics of persons with dementia receiving euthanasia/assisted suicide (EAS) and how the practice is regulated in the Netherlands.
DESIGNS: Qualitative directed content analysis of dementia EAS reports published by the Dutch euthanasia review committees between 2011 and October 5, 2018.
RESULTS: Seventy-five cases were reviewed: 59 concurrent requests and 16 advance requests. Fifty-three percent (40/75) were women, and 48% (36/75) had Alzheimer disease. Advance request EAS patients were younger, had dementia longer, and more frequently had personal experience with dementia. Some concurrent request EAS patients were quite impaired: 15% (9/59) were deemed incompetent by at least one physician; in 24% (14/59), patients' previous statements or current body language were used to assess competence. In 39% (29/75), patients' own physicians declined to perform EAS; in 43% (32/75), the physician performing EAS was new to them. Physicians disagreed about patients' eligibility in 21% (16/75). All advance request and 14 (25%) concurrent request patients had an advance euthanasia directive but the conditions of applicability often lacked specificity. In 5 of 16 advance request EAS and 2 of 56 concurrent request EAS cases, EAS procedure was modified (e.g., premedication). Twenty-five percent (4/16) of advance request cases did not meet legal due care criteria, in particular the "unbearable suffering" criterion.
CONCLUSIONS: Advance and concurrent request EAS cases differ in age, duration of illness, and past experience. Advance request EAS cases were complicated by ambiguous directives, patients being unaware of the EAS procedure, and physicians' difficulty assessing "unbearable suffering." Notably, some concurrent request patients were quite impaired yet deemed competent by appeals to previous statements.
OBJECTIVES: To understand how bereaved spousal caregivers of persons with dementia perceive and respond to changes over the course of their spouse's disease, from diagnosis into bereavement.
DESIGN: Qualitative interview study with convenience sampling and thematic analysis approach.
PARTICIPANTS: Participants included eight women and two men (n=10) who had been spousal caregivers for a person with dementia prior to his/her death. Participants were older adults who self-reported good health and were bereaved longer than a year.
SETTING: Data collected in a small Canadian prairie city between fall 2014 and winter 2015.
FINDINGS: Two overarching themes were developed as important components of participants' caregiving journey: emotional reactions to change and variation in social connectedness throughout the caregiving and bereavement journey. Four key sub-themes developed through the analysis of emotional reactions to events: memorable grief overshadows persistent grief, a progressive feeling of hopelessness and overwhelmed, relief is common but hidden and gratitude is a milestone in a constructive bereavement. Three key variations of social connectedness throughout the caregiving and bereavement journey were developed: the importance of social inclusion throughout a caregiving and bereavement journey, the repeated loss of companionship and withdrawing from social interactions is contingent on needs.
CONCLUSIONS: The findings suggest that emotional changes throughout caregiving and bereavement are not linear. The need for support from family, friends and new social supports is influential in enabling the caregiver to move forward during caregiving and bereavement.
Objectives: The National Health Insurance programme started providing coverage for inpatient care in palliative care (PC) units of acute care hospitals in 2000; however, initially, only PC provided to patients with terminal cancer was covered. A PC policy that enabled PC reimbursement for patients with dementia was implemented in 2009. However, the association of this PC policy with end-of-life care remains unclear. The study aims to compare the association of the PC policy with end-of-life care between patients with dementia and patients with cancer during the last 6 months of their lives.
Methods: We analysed the claims data of 7396 patients dying with dementia (PDD) and 24 319 patients dying with cancer (PDC) during 1997–2013.
Results: Among PDC, while the percentage of receiving PC increased from 3.6% in 1999 to 14.2% by the end of 2000 (adjusted OR (aOR)=4.07, 95% CI 2.70 to 6.13) and from 20.9% in 2010 to 41.0% in 2013 (aOR=1.40, 95% CI 1.33 to 1.47), vasopressor use decreased from 71.6% in 1999 to 35.5% in 2001 (aOR=0.90, 95% CI 0.82 to 0.98). Among PDD, PC use increased from 0.2% in 2009 to 4.9% in 2013 (aOR=2.05, 95% CI 1.60 to 2.63) and cardiopulmonary resuscitation use decreased from 17.6% in 2009 to 10.0% in 2013 (aOR=0.83, 95% CI 0.76 to 0.90).
Conclusions: Implementation of the PC policy in Taiwan was associated with improved PC utilisation among patients with cancer and dementia, which may reduce unnecessary medical care procedures.
Falls are viewed as a preventable cause of injury, functional loss, and death in older adults with dementia, and have been used as a marker of quality of care in long-term care facilities. Despite intensive intervention around fall prevention in these settings, falls and injury remain frequent, particularly among residents in the advanced stages of dementia. In this clinical review, we consider the common challenges and pitfalls in both the management of falls and the provision of palliative care in advanced dementia. We then describe a palliative approach to falls in advanced dementia that involves identifying individuals who would benefit from this care approach, framing falls and loss of mobility as a quality of life issue, and devising an individualized symptom assessment and management plan. A palliative approach can lead to recognition and acceptance that recurrent falls are often symptomatic of advanced dementia, and that not all falls are preventable. We conclude that falls in the advanced stage of dementia can be sentinel events indicating the need for a palliative approach to care. Rather than replace falls prevention activities, a palliative approach to falls prompts us to select dementia stage-appropriate interventions with a focus on symptom management, comfort, and dignity.
Background: It is reported that, given the right support, most people would prefer to die at home, yet a very small minority of people with dementia do so. At present, knowledge gaps remain on how best to support end-of-life care at home for people with dementia.
Aim: To identify and understand the challenges and facilitators of providing end-of-life care at home for people with dementia.
Design: Narrative synthesis of qualitative and quantitative data.
Data sources: The review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A systematic literature search was conducted across six electronic databases (AMED, BNI, CINAHL, EMBASE, MEDLINE and PsycINFO) and reference lists of key journals were searched up to July 2017.
Results: Searches returned 1949 unique titles, of which seven studies met all the eligibility criteria (four quantitative and three qualitative). Six key themes were identified – four facilitators and two challenges. Facilitators included ‘support from health care professionals’, ‘informal caregiver resilience and extended social networks’, ‘medications and symptom management’ and ‘appropriate equipment and home adaptations’. Challenges included ‘issues with professional services’ and ‘worsening of physical or mental health’.
Conclusion: People with dementia may not always require specialist palliative care at the end of life. Further research is required to overcome the methodological shortcomings of previous studies and establish how community development approaches to palliative care, such as compassionate communities, can support families to allow a greater number of people with dementia to die at home.
BACKGROUND: Half of nursing home residents (NHR) suffer from dementia. End-of-life hospitalizations are often burdensome in residents with dementia. A systematic review was conducted to study the occurrence of hospitalizations at the end of life in NHR with dementia and to compare these figures to NHR without dementia.
METHODS: A systematic literature search in MEDLINE, CINAHL and Scopus was conducted in May 2018. Studies were included if they reported proportions of in-hospital deaths or hospitalizations of NHR with dementia in the last month of life. Two authors independently selected studies, extracted data, and assessed quality of studies.
RESULTS: Nine hundred forty-five citations were retrieved; 13 studies were included. Overall, 7 studies reported data on in-hospital death with proportions ranging between 0% in Canada and 53.3% in the UK. Studies reporting on the last 30 days of life (n = 8) varied between 8.0% in the Netherlands and 51.3% in Germany. Two studies each assessed the influence of age and sex. There seem to be fewer end-of-life hospitalizations in older age groups. The influence of sex is inconclusive. All but one study found that at the end of life residents with dementia were hospitalized less often than those without (n = 6).
CONCLUSIONS: We found large variations in end-of-life hospitalizations of NHR with dementia, probably being explained by differences between countries. The influence of sex and age might differ when compared to residents without dementia. More studies should compare NHR with dementia to those without and assess the influence of sex and age.
A Dutch doctor who euthanised a patient who had dementia and could not consent owing to the advanced stage of her condition has been acquitted, after a judge ruled that the patient’s previous request for euthanasia, signed when she was competent, was sufficient.
The case, which was heard in the District Court of the Hague, sought to determine whether the geriatrician should have verified whether the patient still wanted to be euthanised at the time of death.
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Medicine aims to relieve patient suffering and cure illness. To relieve suffering is the heart of what doctors do. However, respect for individual autonomy and self-determination are fundamental principles in Western medical ethics and decision-making, often expressed as a desire for control over the timing and manner of death. Patients who become demented often formulate advance euthanasia and assisted suicide directives. Dealing with such request is quite complex because of the specific medical and conflicting ethical questions they raise. Some specific medical and ethical issues arise regarding these substantive requirements when evaluating the euthanasia request of a person suffering from dementia. In jurisdictions that allow euthanasia, the most fundamental prerequisite for a person to make autonomous decisions is capacity. Whether anyone with moderate or severe dementia, and even some with mild dementia, could be deemed to be competent by these criteria is debatable, but during the course of their disease people with dementia sooner or later lose their capacity to make self-determined decisions.