End-of-life issues in advanced dementia

There is an increased risk of debilitating illnesses that often have no curative treatment with aging. The mainstay of treatment in many such conditions is palliative care: a holistic approach focused on preventing and relieving physical, psychosocial, legal, ethical, and spiritual problems. It involves the facilitation of end-of-life care decisions aimed at relieving distress and improving quality of life. In this article, the authors discuss the role of mental health professionals in legal issues related to palliative care in the elderly around decision-making, right to autonomy, euthanasia, and advanced directive...

UNLABELLED: Dementia is a global public health issue with an urgent need for developing newer and more effective treatment strategies. Research in the area of dementia, however, poses unique ethical and legal challenges. Epidemiological studies, studies on pharmacological and non-pharmacological interventions have to deal with obtaining consent from persons with cognitive impairments, those from diverse cultural groups and need to contend with privacy and confidentiality issues. The caregiver support intervention research has not yet translated into policy change and effective clinical care...

Care homes enable people with advanced physical and cognitive impairment to live well with 24-h support from staff. They are a feature of care systems in most countries. They have proved pivotal to the coronavirus disease 2019 (COVID-19) response. We searched Age and Ageing for care-home articles published since 2015. From these we collated 42 into the Age and Ageing care-home collection. This collection draws together important papers that show how Age and Ageing is helping to shape and grow care-home research...

No abstract text is available yet for this article.

End-of-life care has become an important public health issue in recent years. Place of death is a major component of end-of-life care. Despite attempts to improve end-of-life care, there has not been published any data about place of deaths in Turkey. Aim: This retrospective, cross-sectional study investigates the place of death and trends over the years in geriatric age groups in Turkey. Methods: Patients who were admitted to geriatric outpatient clinic of a university hospital during a 7-year period were included...

Recent advances in biomarkers may soon make it possible to identify persons at high risk for late-onset Alzheimer's disease at a presymptomatic (preclinical) stage. Popular demand for testing is increasing despite the lack of cure and effective prevention options and despite uncertainties regarding the predictive value of biomarker tests. This underscores the relevance of the ethical, cultural and social implications of predictive testing and the need to advance the bioethical debate beyond considerations of clinical consequences...

The management of Neuronal Ceroid Lipofuscinoses (NCL), a group of genetic neurodegenerative disorders mainly affecting brain and retinas, raises difficult questions for physicians and other professionals in research, pharmaceutical industry, and public health. Ethical problems in medicine cannot be solved by rational deliberation or by following formal rules. Two topics of ethical issues in the field of NCL are presented here. One group relates to the care of individual patients and centers on a life with dementia at a young age...

In current Western societies, increasing numbers of people express their desire to choose when to die. Allowing people to choose the moment of their death is an ethical issue that should be embedded in sound clinical and legal frameworks. In the case of persons with dementia, it raises further ethical questions such as: Does the person have the capacity to make the choice? Is the person being coerced? Who should be involved in the decision? Is the person's suffering untreatable? The use of Advance Euthanasia Directives (AED) is suggested as a way to deal with end-of-life wishes of persons with dementia...

INTRODUCTION: Palliative care focuses on reducing suffering and improving quality of life for individuals with serious illness and their families. In an effort to develop palliative care interventions for specialty memory care clinics, this study characterizes memory care providers' perspectives on addressing palliative care needs of people living with dementia (PLWD). METHODS: Qualitative interviews with specialty memory care providers were followed by thematic analysis by a multidisciplinary research team...

BACKGROUND: For residential aged care facility (RACF) residents with dementia, lack of prognostic guidance presents a significant challenge for end of life care planning. In an attempt to address this issue, models have been developed to assess mortality risk for people with advanced dementia, predominantly using long-term care minimum data set (MDS) information from the USA. A limitation of these models is that the information contained within the MDS used for model development was not collected for the purpose of identifying prognostic factors...

BACKGROUND: End of life symptoms and symptom management as well as the quality of dying (QoD) of persons with advanced dementia (PWAD) have not yet been systematically studied in Germany. OBJECTIVE: 1) To investigate symptoms, treatment and care at the end of life, advance care planning, and circumstances of death of recently deceased PWAD; 2) To determine whether there are differences between young and late onset dementia (YOD and LOD). METHODS: The study was performed in the context of the project EPYLOGE (IssuEs in Palliative care for persons in advanced and terminal stages of Young-onset and Late-Onset dementia in Germany)...

Many people are worried about developing dementia, fearing the losses and burdens that accompany the condition. Dementia-specific advance directives are intended to address dementia's progressive effects, allowing individuals to express their treatment preferences for different stages of the condition. But enthusiasm for dementia-specific advance directives should be tempered by recognition of the legal, ethical, and practical issues they raise. Dementia-specific advance directives are a simplistic response to a complicated situation...

BACKGROUND: Of the Swedish people with advanced dementia, the majority die in nursing homes. Unresolved pain can occur in people with a terminal illness such as dementia. However, pain management in people with advanced dementia is often suboptimal and inadequate, with fewer palliative care interventions than offered to cancer patients. Although they are largely responsible for the care of these people, few studies have addressed the experiences of registered nurses in this respect. Therefore, the aim of this study was to describe the experiences of nurses in caring for people with advanced dementia and pain at the end of life...

No abstract text is available yet for this article.

The provision of clinically assisted nutrition and hydration (CANH) often presents clinicians with ethical dilemmas. As the population grows there is increasing prevalence of patients with conditions such as stroke, dementia, advanced malignancy, cerebral palsy and eating disorders and a greater demand for CANH. It is important that healthcare professionals are familiar with the ethical and legal position for the provision of CANH. In addition, it is important to be aware of the clinical indications, relative contraindications and alternative means of supporting patients for whom CANH is not appropriate; this includes education and training for staff, patients, carers and relatives...

BACKGROUND AND OBJECTIVES: People living with dementia deserve to experience the benefits of receiving palliative care and end-of-life services and supports, yet they often do not receive this care compared to those with other terminal diseases. People living with dementia in rural areas often face additional challenges to accessing such care. The purpose of this scoping review was to systematically review and synthesize the literature on palliative and end-of-life care for people with dementia living in rural areas, and to identify and describe key findings and gaps in the literature...

Despite growing understanding in recent years of the biological, psychological, social, environmental and spiritual aspects of dementia, people with advanced dementia continue to experience inequalities in accessing healthcare capable of improving their lives. The complexities of advanced dementia challenge professional competence and demand the highest level of skilled, compassionate care. This article, the last in a series on living with advanced dementia, considers the status and direction of palliative care as it applies to people with dementia and explores contemporary issues regarding advanced dementia and end of life, with a focus on guidance for practitioners and support for best practice...

BACKGROUND/OBJECTIVES: Advance care planning (ACP) traditionally involves asking individuals about their treatment preferences during a brief period of incapacity near the end of life. Because dementia leads to prolonged incapacity, with many decisions arising before a terminal event, it has been suggested that dementia-specific ACP is necessary. We sought to elicit the perspectives of older adults with early cognitive impairment and their caregivers on traditional and dementia-specific ACP...

Background: For residential aged care facility (RACF) residents with dementia, lack of prognostic guidance presents a significant challenge for end of life care planning. In an attempt to address this issue, models have been developed to assess mortality risk for people with advanced dementia, predominantly using long-term care minimum data set (MDS) information from the USA. A limitation of these models is that the information contained within the MDS used for model development was not collected for the purpose of identifying prognostic factors...

The United Kingdom-Brazil Dementia Workshop took place in July 2019 in the city of Belo Horizonte, MG, Brazil, with an interdisciplinary group of health and care professionals from the United Kingdom and from Brazil to address challenges in diagnosis, public perception and care of dementia. The aim of this article is to present the results identified in relation to challenges in the care of dementia, including recommendations that could potentially guide local and State/Municipal authorities and care services for people with dementia in the future...