Accumulating evidence suggests that a dementia diagnosis, for many, triggers feelings of grief, and often marks the first of many losses that will be experienced by both the person who has received the diagnosis and their loved ones, as the disease progresses. Previous research has also revealed that carers who report higher levels of pre-death grief are at greater risk of complicated grief after their loved one has died. Despite this evidence, appropriate bereavement support for people bereaved by dementia is a significant unmet need.
The Bereaved by Dementia project was delivered collaboratively by Cruse Cymru and Alzheimer’s Cymru to address the bereavement needs of people bereaved by dementia throughout Wales. This paper draws on an independent evaluation of the Bereaved by Dementia Project conducted by Aston University and the University of Bristol. We summarise our main findings, recommendations, and suggestions for future research.
Purpose: This study evaluated the decision-making capacity of persons with mild and moderate dementia on end-of-life care when using visual aids. A secondary purpose was to learn whether the judges naive to the experimental conditions would rate participants' decisional abilities as better when augmented by visual aids, thereby validating the behavioral changes due to the use of these external support.
Method: Twenty older adults with mild and moderate dementia demonstrated Understanding, Expressing a Choice, Reasoning, and Appreciation of 2 medical vignettes under 2 counterbalanced conditions: verbal alone or verbal with visual aids. Transcripts were analyzed and scored to measure decisional skills. Twelve judges rated participants' decisional abilities using a 7-point Likert scale.
Results: Participants demonstrated significantly better overall decisional capacity in Understanding, Reasoning, and Appreciation when supported by visual aids during the decision-making process. No significant differences between conditions were found in Expressing a Choice, the decisional skill Logical Sequence under Reasoning, and Acknowledgment under Appreciation. Overall, the judges' ratings validated these outcomes; the judges' ratings reflected greater agreement in the visual condition than in the verbal condition.
Conclusions: Findings indicated that visual aids (a) improved the decision-making capacity of individuals with dementia in comprehending medical information, employing supportive reasons, and relating this information to his or her own situation and (b) contain the potential for judges who majored or are majoring in speech-language pathology to reach a stronger consensus when determining the decision-making capacity of individuals with dementia.
Background: Barriers to palliative care still exist in long-term care settings for older people, which can mean that people with advanced dementia may not receive of adequate palliative care in the last days of their life; instead, they may be exposed to aggressive and/or inappropriate treatments. The aim of this multicentre study was to assess the clinical interventions and care at end of life in a cohort of nursing home (NH) residents with advanced dementia in a large Italian region.
Methods: This retrospective study included a convenience sample of 29 NHs in the Lombardy Region. Data were collected from the clinical records of 482 residents with advanced dementia, who had resided in the NH for at least 6 months before death, mainly focusing on the 7 days before death.
Results: Most residents (97.1%) died in the NH. In the 7 days before death, 20% were fed and hydrated by mouth, and 13.4% were tube fed. A median of five, often inappropriate, drugs were prescribed. Fifty-seven percent of residents had an acknowledgement of worsening condition recorded in their clinical records, a median of 4 days before death.
Conclusions: Full implementation of palliative care was not achieved in our study, possibly due to insufficient acknowledgement of the appropriateness of some drugs and interventions, and health professionals’ lack of implementation of palliative interventions. Future studies should focus on how to improve care for NH residents.
Dementia is a major public health concern in ageing societies. Although the population of Japan is among the most aged worldwide, long-term trends in the place of death (PoD) among patients with dementia is unknown. In this Japanese nationwide observational study, we analysed trends in PoD using the data of patients with dementia who were aged =65 years and died during 1999–2016. Trends in the crude death rates and PoD frequencies were analysed using the Joinpoint regression model. Changes in these trends were assessed using the Joinpoint regression analysis in which significant change points, the annual percentage change (APC) and average APCs (AAPC) in hospitals, homes, or nursing homes were estimated. During 1999–2016, the number of deaths among patients with dementia increased from 3,235 to 23,757 (total: 182,000). A trend analysis revealed increased mortality rates, with an AAPC of 8.2% among men and 9.3% among women. Most patients with dementia died in the hospital, although the prevalence of hospital deaths decreased (AAPC: -1.0%). Moreover, the prevalence of nursing home deaths increased (AAPC: 5.6%), whereas the prevalence of home deaths decreased (AAPC: -5.8%). These findings support a reconsideration of the end-of-life care provided to patients with dementia.
BACKGROUND: To provide appropriate cost-effective care for an ageing population, realignment of care provision to conditions common in advanced age, notably, dementia and multi-morbidities is required. The use of outcome measures in practice may enable this.
AIM: A collaborative baseline audit was undertaken to understand how best to implement outcome measures into services for people with dementia across clinical settings.
METHODS: An academic institution set up a 6-month collaborative baseline audit in 11 English sites. Measures comprised: symptoms/concerns (Integrated Palliative care Outcome Scale for Dementia); Phase of Illness; functional status (Australia-modified Karnofsky Performance Scale); and dementia severity (Functional Assessment Staging).
FINDINGS: Measures were completed at first assessment for 225 people with dementia across nine sites. Their completion promoted comprehensive assessments, but challenges also existed, including recording the prevalence/severity of non-physical symptoms by proxy.
CONCLUSIONS: The joining together of clinical academic expertise enabled mobilisation of expert knowledge into and from clinical practice.
BACKGROUND: Persons with dementia (PwD) often have significant cognitive deficits and functional limitations, requiring substantial caregiver assistance. Given the high symptom burden and terminal nature of dementia, good prognostic awareness and integration of palliative care (PC) is needed.
OBJECTIVE: To evaluate prognostic awareness, disease, and PC understanding among caregivers of PwD and to assess for improvements in routine care.
DESIGN: A cross-sectional study of 2 cohorts at a single-academic medical center. Surveys were mailed to 200 caregivers of PwD in 2012 (cohort 1). Surveys were sent to new subset of caregivers of PwD (n = 80) in 2018 (cohort 2) to assess trends over time.
RESULTS: A total of 154 of caregivers completed the survey (response rate 55%). Compared to 2012, a higher proportion of caregivers in 2018 reported having conversations about prognosis with PwD's physicians (25% in 2012 vs 45% in 2018; P = .027). However, a large percentage (43% in 2012 and 40% in 2018) of caregivers reported no understanding of the PwD's prognosis. Despite most stating dementia was not curable, only 39% in 2012 and 52% in 2018 (P = .015) understood that dementia was a terminal disease. In addition, only 32% in 2012 and 40% in 2018 (P = .39) felt that they were knowledgeable about PC.
CONCLUSIONS: Prognostic discussions between caregivers of PwD and the PwD's physicians may be occurring more often; however, a high percentage of caregivers report a poor understanding about the terminal nature of dementia and the role of PC.
Context: Despite the preference to pass away at home, many dementia patients die in institutions, resulting in a paucity of studies examining end-of-life care outcomes in the home setting.
Objective: To identify modifiable factors associated with the comfort of dementia patients dying at home and families’ satisfaction with care.
Methods: This is a prospective cohort study conducted from October 2014 to April 2019 in Singapore. Dementia patients at Stage 7 on the Functional Assessment Staging Scale, with albumin<35g/L, enteral feeding or pneumonia were recruited from a palliative homecare programme. Independent variables included demographics, medical information and care preferences. The Comfort Assessment in Dying with Dementia scale assessed dying patients’ comfort while the Satisfaction with Care at the End-of-Life in Dementia scale evaluated family caregivers’ satisfaction two months post-bereavement. Gamma regression identified factors independently associated with comfort and satisfaction.
Results: The median age of 202 deceased patients whose comfort was assessed was 88 years. Anti-cholinergic prescription (60.4% of patients) [ß(95% CI)=1.823(0.660 – 2.986), p=0.002] was positively associated with comfort, while opioid prescription (89.6%) [ß(95% CI)=-2.179(-4.107- -0.251), p=0.027] and >1 antibiotic courses used in the last 2 weeks of life (77.2%) [ß(95% CI)=-1.968(-3.196 – -0.740), p=0.002] were negatively associated. Independent factors associated with families’ satisfaction with care were comfort [ß(95% CI)=0.149(0.012 – 0.286), p=0.033] and honouring of medical intervention preferences (96.0%) [ß(95% CI)=3.969(1.485 – 6.453), p=0.002].
Conclusion: Achieving comfort and satisfaction with care for dementia patients dying at home involves an interplay of modifiable factors. Honouring medical intervention preferences, such as those with palliative intent associated with patients’ comfort determined families’ satisfaction with care.
OBJECTIVES: (1) To develop an understanding of how social capital may be conceptualised within the context of end-of-life care and how it can influence outcomes for people with dementia and their families with specific reference to the context and mechanisms that explain observed outcomes. (2) To produce guidance for healthcare systems and researchers to better structure and design a public health approach to end-of-life care for people with dementia.
DESIGN: A realist review.
DATA SOURCES: MEDLINE, EMBASE, CINAHL and grey literature.
ANALYSIS: We conceptualised social capital as a complex intervention and, in order to understand how change is generated, used realist evaluation methods to create different configurations of context, mechanism and outcomes. We conducted an iterative search focusing on social capital, social networks and end-of-life care in dementia. All study designs and outcomes were screened and analysed to elicit explanations for a range of outcomes identified. Explanations were consolidated into an overarching programme theory that drew on substantive theory from the social sciences and a public health approach to palliative care.
RESULTS: We identified 118 articles from 16 countries ranging from 1992 to 2018. A total of 40 context-mechanism-outcome configurations help explain how social capital may influence end-of-life care for people with dementia. Such influence was identified within five key areas. These included: (1) socially orientating a person with dementia following diagnosis; (2) transitions in the physical environment of care; (3) how the caregiving experience is viewed by those directly involved with it; (4) transition of a person with dementia into the fourth age; (5) the decision making processes underpinning such processes.
CONCLUSION: This review contributes to the dispassionate understanding of how complex systems such as community and social capital might be viewed as a tool to improve end-of-life care for people with dementia.
On 11 September 2019, the verdict was read in the first prosecution of a doctor for euthanasia since the Termination of Life on Request and Assisted Suicide (Review Procedures) Act of 2002 was installed in the Netherlands. The case concerned euthanasia on the basis of an advance euthanasia directive (AED) for a patient with severe dementia. In this paper we describe the review process for euthanasia cases in the Netherlands. Then we describe the case in detail, the judgement of the Regional Review Committees for Termination of Life on Request and Euthanasia (RTE) and the judgement of the medical disciplinary court. Both the review committees and the disciplinary court came to the conclusion there were concerns with this case, which mainly hinged on the wording of the AED. They also addressed the lack of communication with the patient, the absence of oral confirmation of the wish to die and the fact that the euthanasia was performed without the patient being aware of this. However, the doctor was acquitted by the criminal court as the court found she had in fact met all due care criteria laid down in the act. We then describe what this judgement means for euthanasia in the Netherlands. It clarifies the power and reach of AEDs, it allows taking conversations with physicians and the testimony of the family into account when interpreting the AED. However, as a practical consequence the prosecution of this physician has led to fear among doctors about prosecution after euthanasia.
Despite many efforts made by health organisations to deliver effective end-of-life care to patients with dementia, research indicates that palliative care is predominantly aimed at patients with terminal cancer, and that patients with dementia face challenges in accessing end-of-life care. This article explores the views of health professionals on providing palliative care to those patients diagnosed with dementia within the community setting. A systematic review of seven qualitative studies was performed to identify the best available evidence. The findings show that effective palliative care for patients with dementia continues being affected by many barriers and challenges. Good practice seems to be inconsistent and fragmented throughout the UK and European countries, and many health professionals are faced with difficulties associated with services and financial implications, training and education, staff support, communication, family support and dementia care.
Pour certaines personnes à l'approche de la mort, la désorientation leur permettrait de revisiter leur histoire "sans filtre" en toute authenticité, comme un exercice de "réparation" consistant en quelque sorte à s'affranchir de certains de leurs actes au regard du contexte et des usages de l'époque pour se réconcilier avec leur passé et mourir en paix.
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: The significance of advance care planning in dementia is widely acknowledged. Despite the suggestion that younger people with dementia and their family might have distinct needs and preferences in this area, studies on advance care planning in young-onset dementia are absent.
Aim: We aim to explore (1) whether family caregivers had already engaged in advance care planning with patients and/ or professionals and the accompanying reasons and (2) family caregivers' preferences for how to ideally engage in the process with patients, family and professionals.
Design: A qualitative study was conducted: we analysed semi-structured interviews (n = 15) through the method of constant comparative analysis.
Setting/participants: We included Flemish family caregivers of persons with young-onset dementia.
Results: Plans for the future typically concerned non-medical affairs. Participants' limited engagement in advance care planning was clarified through several reasons: not considering it useful, hindering patient behaviour, adopting a day-to-day attitude, caregivers emotionally protecting themselves and uncertainty about patients' cognitive competence. However, endorsement for advance care planning showed from respondent' preferences that it should be initiated timely, by a third party, and emphasize patients' remaining capacities. Finally, the need for information and high-quality care emerged.
onclusion: A gap of knowledge, of information and in care intertwiningly hinder advance care planning. In young-onset dementia, engaging in advance care planning is not an option equally accessible as not doing so. Policy makers, institutions and professionals could reflect on their responsibility in providing these patients and caregivers an actual choice to engage in advance care planning or not.
OBJECTIVE: The objective of this paper is to explore the ethical and legal validity of advance directives that request the voluntary stopping of eating and drinking against a backdrop of late-stage dementia.
METHOD: Doctrinal research and analysis of primary and secondary materials including Australian legislation, Australian case law and journal articles was undertaken.
RESULTS: There is legal uncertainty in Australia around whether an advance directive to voluntarily stop eating and drinking will be followed should the adult become incompetent.
CONCLUSION: Voluntary stopping of eating and drinking should be viewed in law as a form of "treatment" that competent adults can nominate in advance directives, thereby providing dementia patients with the opportunity to choose in advance, if they wish, to end their life legally, with dignity and comfort, and in a manner that does not implicate others in criminal behaviour such as assisted suicide, acceleration of death or euthanasia.
Palliative care is an approach to the care of patients, affected by serious illness, and their families that aims to reduce suffering through the management of medical symptoms, psychosocial issues, spiritual well-being, and setting goals of care. Patients and families affected by a neurodegenerative illness have significant palliative care needs beginning at the time of diagnosis and extending through end-of-life care and bereavement. We advocate an approach to addressing these needs where the patient's primary care provider or neurologist plays a central role. Key skills in providing effective palliative care to this population include providing the diagnosis with compassion, setting goals of care, anticipating safety concerns, caregiver assessment, advance care planning, addressing psychosocial concerns, and timely referral to a hospice. Managing distressing medical and psychiatric symptoms is critical to improving quality of life throughout the disease course as well as at end-of-life. Many symptoms are common across illnesses; however, there are issues that are specific to the most common classes of neurodegenerative illness, namely dementia, parkinsonism, and motor neuron disease. Incorporating a palliative approach to care, although challenging in many ways, empowers physicians to provide greater support and guidance to patients and families in making the difficult journey through a neurodegenerative illness.
OBJECTIVES: Advance care planning (ACP) is seldom initiated with people with dementia (PWD) and mainly focuses on medical end-of-life decisions. We studied the effects of an educational intervention for general practitioners (GPs) aimed at initiating and optimizing ACP, with a focus on discussing medical and nonmedical preferences of future care.
DESIGN: A single-blinded cluster randomized controlled trial.
SETTING AND PARTICIPANTS: In 2016, 38 Dutch GPs (all from different practices) completed the study. They recruited 140 PWD, aged = }65 years at any stage and with any type of dementia, from their practice.
METHODS: Intervention group GPs were trained in ACP, including shared decision-making and role-playing exercises. Control group GPs provided usual care. The primary outcome was ACP initiation: the proportion of PWD that had at least 1 ACP conversation documented in their medical file. Key secondary outcomes were the number of medical (ie, resuscitation, hospital admission) and nonmedical (ie, activities, social contacts) preferences discussed. At the 6-month follow-up, subjects' medical records were analyzed using random effect logistics and linear models with correction for GP clustering.
RESULTS: 38 GP clusters (19 intervention; 19 control) included 140 PWD (intervention 73; control 67). Four PWD (2.9%) dropped out on the primary and key secondary outcomes. After 6 months, intervention group GPs initiated ACP with 35 PWD (49.3%), and control group GPs initiated ACP with 9 PWD (13.9%) [odds ratio (OR) 1.99; P = .002]. Intervention group GPs discussed 0.8 more medical [95% confidence interval (CI) 0.3, 1.3; P = .003] and 1.5 more nonmedical (95% CI 0.8, 2.3; P < .001) preferences per person with dementia than control group GPs.
CONCLUSIONS AND IMPLICATIONS: Our educational intervention increased ACP initiation, and the number of nonmedical and medical preferences discussed. This intervention has the potential to better align future care of PWD with their preferences but because of the short follow-up, the GPs' long-term adoption remains unknown.
OBJECTIVE: The objective of this review is to summarize current best evidence for advance care planning in older adults with dementia and their families.
INTRODUCTION: Contemporary end of life care cannot be fully achieved without high quality advance care planning practice, which facilitates the expression of patient preferences for treatment if they lose the capacity to decide or communicate their wishes. However, advance care planning for people experiencing dementia can be highly complex and requires additional knowledge and skills. Improving advance care planning for this vulnerable patient group is an urgent matter.
INCLUSION CRITERIA: The review will include systematic reviews of quantitative, qualitative and mixed method studies examining advance care planning for older adults with dementia and their families, published from 2000.
METHODS: Published and unpublished reviews will be identified from searches of the major international databases and relevant databases for gray literature, respectively. Two independent reviewers will conduct screening, critical appraisal and data extraction for included studies. The extracted data will include specific details about the study characteristics (e.g. setting/context, participants, and the intervention/phenomena of interest), quantitative results (including heterogeneity) and qualitative findings relevant to the review. Results of systematic reviews will be presented in tabular format and accompanied by narrative synthesis. Qualitative results will include the overall synthesis of findings. Overlap of original research studies of any design across multiple systematic reviews will be clearly identified.
OBJECTIVES: The end-of-life trajectory for persons with dementia is often protracted and difficult to predict, placing these individuals at heightened risk of live discharge from hospice. Risks for live discharge due to condition stabilization or failure to decline among patients with dementia are not well established. Our aim was to identify demographic, health, and hospice service factors associated with live discharge due to condition stabilization or failure to decline among hospice patients with dementia.
DESIGN: Retrospective cohort study.
SETTING: A large not-for-profit agency in New York City.
PARTICIPANTS: A total of 2629 hospice patients with dementia age 65 years and older.
MEASUREMENTS: Primary outcome was live discharge from hospice due to condition stabilization or failure to decline (vs death). Measures include demographic factors (race/ethnicity, Medicaid, sex, age, marital status, parental status), health characteristics (primary dementia diagnosis, comorbidities, functional status, prior hospitalization), and hospice service (location, length of service, number and timing of nurse visits).
RESULTS: Logistic regression models indicated that compared with white hospice patients with dementia, African American and Hispanic hospice patients with dementia experienced increased risk of live discharge (African American: adjusted odds ratio [aOR] = 2.42; 95% confidence interval [CI] = 1.34-4.38; Hispanic: aOR = 2.99; 95% CI = 1.81-4.94). Home hospice (aOR = 7.57; 95% CI = 4.04-14.18), longer length of service (aOR = 1.04; 95% CI = 1.04-1.05), and more days between nurse visits and discharge (aOR = 1.86; 95% CI = 1.56-2.21) were also associated with live discharge.
CONCLUSION: To avoid burdensome and disruptive transitions out of hospice in patients with dementia, interventions to reduce live discharge due to condition stabilization or failure to decline should be tailored to meet the needs of African American, Hispanic, and home hospice patients. Policies regarding sustained hospice eligibility should account for the variable and protracted end-of-life trajectory of patients with dementia.
OBJECTIVE: Dementia is a progressive illness with a complex biopsychosocial constellation of symptoms faced by millions of individuals and families worldwide. Palliative care teams have specialized in symptom management and end-of-life care for decades; however, the role of palliative care in dementia management is not yet well elucidated. The aim of this systematic review was to understand the impact of palliative care in dementia management.
METHOD: This systematic review was conducted using a prospective study protocol. Medline and PubMed were searched from January 1, 1998 to October 2017. Eligible studies included single-blind cluster, two-arm parallel cluster, or unblinded randomized controlled trials (RCTs), observational studies, retrospective cohort studies, cross-sectional studies, concurrent mixed methods study, qualitative study, and Delphi studies.
RESULTS: Four key themes were identified in this review: goals of care and end-of-life conversations, symptom management, emergency room visits, and prescribing behavior. In each domain, palliative care consultation either showed benefit or was postulated to have benefit if implemented.
SIGNIFICANCE OF RESULTS: Although the literature to support or refute thematic conclusions is not large, there was a trend toward patient care benefit across several domains. Large RCTs with longer follow-up across different settings should be undertaken to solidify the themes and trends outlined in this review. Understanding the views of healthcare providers including referral sources (i.e., general practitioners and specialists) through qualitative research could optimize palliative care referrals, implement palliative care recommendations, and improve a targeted palliative care education curriculum.
Despite the increasing prevalence, growing costs, and high mortality of dementia in older adults in the U.S., little is known about the course of these diseases and what care dementia patients receive in their final years of life. Using a large volume of clinical notes of dementia patients over the last two years of life, we conducted automatic topic modeling to capture the trends of various themes mentioned in care provider notes, including patients' physical function status, mental health, falls, nutrition and feeding, infections, hospital care, intensive care, end-of-life care, and family and social supports. Our research contributes to the adoption and evaluation of an unsupervised machine learning method using large amounts of retrospective free-text electronic health record data to discover and understand illness and health care trajectories.