Ethical dilemmas in neurodegenerative disease: Respecting patients at the twilight of agency

Author(s):  
Agnieszka Jaworska

This chapter focuses on dilemmas faced by caregivers of Alzheimer’s patients in cases in which current preferences of such patients come into conflict with the attitudes and values the person held during better health. To which set of preferences should conscientious caregivers give priority? The chapter argues that many Alzheimer’s patients, at least up to the middle stages of the disease, are still capable of rudimentary autonomy and that they still have authority concerning their well-being. The capacity to value is often not completely lost in dementia, and insofar as it is not, respect for the immediate interests of a demented person compromises neither their well-being nor the respect for their autonomy. In the postscript, emerging neuroscience evidence is discussed that may suggest that, for a time, the capacity to value is not only preserved but even enhanced in the progression of Alzheimer’s disease.

2021 ◽  
Vol 53 (5) ◽  
pp. 405-422
Author(s):  
MG Figueiro ◽  
HC Kales

Alzheimer’s disease and related dementias is the collective term for a progressive neurodegenerative disease for which there is presently no cure. This paper focuses on two symptoms of the disease, sleep disturbances and depression, and discusses how light can be used as a non-pharmacological intervention to mitigate their negative effects. Bright days and dark nights are needed for health and well-being, but the present components of the built environment, especially those places where older adults spend most of their days, are too dimly illuminated during the day and too bright at night. To be effective light needs to be correctly specified, implemented and measured. Yet, without the appropriate specification and measurement of the stimulus, researchers will not be able to successfully demonstrate positive results in the field, nor will lighting designers and specifiers have the confidence to implement lighting solutions for promoting better sleep and mood in this population.


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 685-686
Author(s):  
Lauren Nicholas

Abstract Dementia, a currently incurable degenerative cognitive disease, represents a major threat to financial stability. Early signs of dementia can include difficulties managing money and forgetting to pay bills, raising concerns about the implications of pre-clinical disease for financial well-being. We linked Medicare claims data to 20 years of consumer credit data for more than 80,000 older Americans living in single households to study the financial presentation of Alzheimer’s Disease and Related Dementias. Using non-parametric regression models, we find elevated rates of payment delinquency, subprime credit, and withdrawal from use of credit products up to 6 years before dementia is clinically diagnosed. Similar patterns did not appear with a number of placebo acute and chronic health conditions, suggesting that the adverse financial events are unique to dementia and do not occur with other acute or chronic illnesses. Part of a symposium sponsored by the Economics of Aging Interest Group.


2005 ◽  
Vol 187 (2) ◽  
pp. 143-147 ◽  
Author(s):  
Alistair Burns ◽  
Else Guthrie ◽  
Federica Marino-Francis ◽  
Charlotte Busby ◽  
Julie Morris ◽  
...  

BackgroundAlthough there is good evidence that interventions for carers of people with Alzheimer's disease can reduce stress, no systematic studies have investigated psychotherapeutic intervention for patients themselves. This may be important in the earlier stages of Alzheimer's disease, where insight is often preserved.AimsThe aim was to assess, in a randomised controlled trial, whether psychotherapeutic intervention could benefit cognitive function, affective symptoms and global well-being.MethodIndividuals were randomised to receive six sessions of psychodynamic interpersonal therapy or treatment as usual; cognitive function, activities of daily living, a global measure of change, and carer stress and coping were assessed prior to and after the intervention.ResultsNo improvement was found on the majority of outcome measures. There was a suggestion that therapy had improved the carers' reactions to some of the symptoms.ConclusionsThere is no evidence to support the widespread introduction of brief psychotherapeutic approaches for those with Alzheimer's disease. However, the technique was acceptable and helpful individually.


2016 ◽  
Vol 26 (1) ◽  
pp. 36-38 ◽  
Author(s):  
Olivia DaDalt ◽  
Joseph F. Coughlin

2021 ◽  
Vol 80 (2) ◽  
pp. 505-519
Author(s):  
Dharma Singh Khalsa ◽  
Andrew B. Newberg

Background: Religious and spiritual interventions may have an effect on Alzheimer’s disease prevention. Kirtan Kriya meditation has been shown to mitigate the deleterious effects of chronic stress on cognition, reverse memory loss, and create psychological and spiritual wellbeing, which may reduce multiple drivers of Alzheimer’s disease risk. Objective: To detail a new concept in medicine called Spiritual Fitness, a merging of stress reduction, basic wellbeing, and psycho/spiritual wellbeing to prevent Alzheimer’s disease. Methods: The literature on the topics mentioned above is described, including an in-depth discussion on why and how each are critical to advancing the future of Alzheimer’s disease prevention. The many negative effects of chronic stress, and the benefits of Kirtan Kriya, are reviewed. The four pillars of basic wellbeing, six practical aspects of psychological wellbeing, and the four new non-sectarian features of spiritual fitness are then disclosed. Moreover, instructions on practicing Kirtan Kriya are offered in the Supplementary Material. Conclusion: Religious and spiritual practices, including Kirtan Kriya, are crucial components in the development of enhanced cognition and well-being, which may help prevent and, in some cases, reverse cognitive decline. The key point of this review is that making a commitment to live a brain longevity lifestyle including spiritual fitness is a critically important way for aging Alzheimer’s disease free. We hope that this article will inspire scientists, clinicians, and patients to embrace this new concept of spiritual fitness and make it a part of every multidomain program for the prevention of cognitive disability.


2017 ◽  
Vol 44 (6) ◽  
pp. 159-161
Author(s):  
Flávia Araujo de Amorim ◽  
Mariana de Campos Pereira Giorgion ◽  
Orestes Vicente Forlenza

2021 ◽  
Author(s):  
◽  
Rosemary Heathcott

<p>Heparan sulphate proteoglycans (HSPG) are central to numerous processes of the mammalian cell. The highly charged negative side chains of the heparan sulphate (HS) oligosaccharides are essential for the regulatory and structural functions of the proteoglycan. Synthetic HS compounds have potential therapeutic value due to their ability to mimic naturally occurring HS. Niemann-Pick disease type C (NPC) is a fatal childhood neurodegenerative disease with characteristic cholesterol and sphingolipid accumulation in the late endosome or lysosome. Alzheimer’s disease, another neurodegenerative disorder, shares alterations of cholesterol and amyloid β metabolism with NPC. In this study,a set of novel heparan sulphate compounds with a range of structures and oligosaccharide side groups with a variety of degrees of sulphation was investigated with regards to their effects on cholesterol and amyloid β metabolism in cell line models of these two diseases. Fluorescent staining of cholesterol and confocal microscopy showed highly sulphated compounds reduce the accumulation of cholesterol in the perinuclear lysosomal storage organelles in patient fibroblast cell lines. The compounds had no effect on secreted amyloid β levels or amyloid precursor protein levels in a neuronal cell line model of early onset Alzheimer’s disease. The mechanism of cholesterol reduction is unclear but may be related to a reduction in HSPG-associated endocytosis of LDL/cholesterol.</p>


Author(s):  
Vanessa Silva Lins ◽  
Marcia Queiroz de Carvalho Gomes

A demência é uma das principais causas de incapacidade entre a população idosa, sua prevalência vem crescendo com o aumento da longevidade e vem se tornando um problema de saúde pública. O idoso acometido por demência tem as ocupações e o desempenho ocupacional bastante comprometido, necessitando da assistência do terapeuta ocupacional. O objetivo do presente estudo é analisar as contribuições da Terapia Ocupacional na atenção ao idoso com demência, descritas nas produções científicas publicadas em periódicos na área de saúde. Trata-se de uma revisão sistemática, do tipo integrativa, realizada na plataforma BIREME, nas bases de dados da LILACS, SciELO e MEDLINE, usando os descritores “Demência AND Terapia Ocupacional” e “Doença de Alzheimer AND Terapia Ocupacional”, nos idiomas português e espanhol. Foram encontrados 33 artigos, desse total foram selecionados para análise 07 artigos, que estavam dentro dos critérios de inclusão. Esta revisão permitiu constatar que, apesar da tímida produção de publicações de terapeutas ocupacionais acerca da demência, nos dois idiomas pesquisados, a Terapia Ocupacional vem ampliando seu escopo de ação, para além das tradicionais abordagens cognitivas e centradas apenas no idoso, avançou na promoção de práticas preventivas e no manejo de sintomas psicológicos e comportamentais, que envolvem tanto o ambiente físico quanto o ambiente social do idoso. A Terapia Ocupacional tem desenvolvido e utilizado instrumentos próprios da profissão, tais como a DADL-Br e a COPM, fortalecendo sua identidade e especificidade. Vem contribuindo para a qualidade de vida e bem-estar do idoso com Demência e seus cuidadores/familiares, promovendo uma atenção integral e contextualizada. Abstract Dementia is one of the leading causes of disability among the elderly population. Its prevalence has increased with longevity growth and it has become a public health problem. The older adults person affected by dementia has his/her occupations and occupational performance quite compromised, requiring Occupational Therapy assistance. The objective of the present study is to analyze Occupational Therapy assistance contributions to the elderly with dementia, described in the scientific productions published in health journals. It is a review of the integrative type, performed in BIREME platform, in the databases of LILACS, SciELO and MEDLINE, using the descriptors "Dementia AND Occupational Therapy" and "Alzheimer's Disease AND Occupational Therapy", in Portuguese and Spanish.We have found 33 articles, from which 7 articles were selected for analysis, according to the inclusion criteria.This review showed that, in spite of the small number of publications about the performance of dementia in both languages, Occupational Therapy has expanded its scope of action. Beyond cognitive approaches focused on the older adults, it has been making progress on preventing and managing psychological and behavioral symptoms, involving both the physical and social environment of the older adults. Occupational Therapy has developed and used its own tests and evaluations, such as DADL-Br and COPM, strengthening its identity and specificity. It contributes to the quality of life and well-being of the elderly with Dementia and their caregivers / family, promoting integrated and contextualized care.Keywords: Dementia, Alzheimer's Disease, Elderly; Occupational Therapy.


Author(s):  
Darby Morhardt ◽  
Marcia Spira

When a member of a family is diagnosed with Alzheimer's disease, the impact of the disease reverberates throughout the relationships within the family. This paper explores the challenges and strengths within one family as members manage and cope with Alzheimer's disease. The person with dementia and his family members are individually interviewed and each person explores the consequences of the disease on personal well-being as well as the relationships within the family. The family demonstrates how dementia in one family member demands flexibility in family roles as they navigate life through the challenges of living with dementia.


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