This article begins with a discussion of current guidelines regarding Alzheimer disease research so as to lay a foundation for extending these guidelines to more explicitly include research on comorbid medical conditions. The article then justifies including persons with Alzheimer disease in research on comorbid medical conditions, using data from several empirical studies that show treatment of these conditions is not only beneficial to the overall health of the individual, but also may be beneficial in decreasing the symptoms of the disease. Finally, the article uses the framework of social justice as understood in the research ethics literature to examine the inclusion of historically excluded groups in research and to support the conclusion that social justice requires persons with Alzheimer disease to be included in research on comorbid medical conditions unless a robust justification for exclusion is provided.
The hopes of people with mild Alzheimer’s disease have been dashed again by the agency that appraises treatments for use by the NHS in England and Wales, which has reaffirmed its original decision to deny them treatment with dementia drugs. The National Institute for Health and Clinical Excellence (NICE) has issued amended guidance but still asserts that the drugs would not be cost effective for the mild stages of the disease. The original guidance from NICE was challenged by Eisai, the UK licence holder for donepezil (Aricept), one of the class of acetylcholinesterase inhibitors affected. The Court of Appeal ordered NICE to hand over a fully executable form of its economic model for determining the drugs’ cost effectiveness, and Eisai and the Alzheimer’s Society made further representations that highlighted flaws in the model.
More than 700,000 people in the UK currently suffer from dementia, and nearly 500,000 friends and family members act as carers for people with dementia. Our rapidly ageing population means that these numbers are likely to double in the next forty years. While we are getting to understand better the causes of the disease, and diagnostic and treatment options are improving, we are still a long way from prevention or cure. Meanwhile, these people and their families, healthcare staff and care workers face difficult ethical dilemmas on a day-to-day basis. An exploratory workshop was held in March 2007, and the Nuffield Council set up a Working Party in December 2007 to examine the ethical issues raised by dementia. Following a public consultation and meetings with stakeholders including people with dementia, carers, health professionals and other members of the public, a report with recommendations for policy makers was published on 1st October 2009.
The number of people suffering from dementia will rise considerably in the years to come. This will have important implications for society. People suffering from dementia have to rely on relatives and professional caregivers when their disorder progresses. Some people want to determine for themselves their moment of death, if they should become demented. They think that the decline in personality caused by severe dementia is shocking and unacceptable. In this context, some people consider euthanasia as a way to avoid total deterioration. In this article, we discuss some practical and ethical dilemmas regarding euthanasia in persons with severe dementia based on an advance euthanasia directive.
Should those with incurable illnesses be allowed to choose how and when they die? In his Richard Dimbleby lecture, author Terry Pratchett, who has Alzheimer's disease, makes a plea for a common-sense solution. This is an edited extract of Terry Pratchett's Richard Dimbleby lecture, Shaking Hands With Death, which was broadcast on BBC1 on 1 February
The Neuromedia Corner aims to share news and stimulate an effective dialogue about the state of the art of neuroscience technologies, their risks and benefits and the associated ethical and social issues. The Neuromedia Corner is an idea of the bid - Brains in Dialogue project.
Terminally ill patients who want to commit suicide should be able to receive medical help to die, a government adviser on care for the elderly has said. Martin Green, a dementia expert for the Department of Health, said patients who were too frail to take their own lives were being denied “choice” and “autonomy” because assisted suicide is illegal in the UK. In an interview with The Daily Telegraph, he urged ministers to review the law and suggested that a referendum or a free vote in Parliament should be called to settle policy on the issue. “If you’re going to give people ‘choice’, it should extend to whether or not they want to die,” he said.
Artsen steunen euthanasie bij dementie Publicatie Nr. 27 - 08 juli 2011 Jaargang 2011 Rubriek NieuwsReflex Auteur Joost Visser, KNMG Pagina's 1684 Een op de vijf artsen steunt het burgerinitiatief van Uit Vrije Wil, een op de drie vindt hulp bij zelfdoding aan patiënten met een chronische depressie of beginnende dementie te rechtvaardigen.
A decision in the Netherlands to approve the euthanasia of a woman with advanced Alzheimer’s disease has raised questions over how far mercy killing can apply to patients with dementia. Under Dutch law doctors performing euthanasia must ensure that the patient has made a voluntary and well considered request. This requirement has generally excluded patients with advanced dementia, as they are no longer considered competent to express their wishes. Now the Euthanasia Assessment Committee, to which doctors must report the cases of patients they have helped to die, has made an exception in the case of one woman, emphasising her long history of requesting euthanasia and the degree of communication still possible at her death. It is seen as the first case of euthanasia of a “heavily demented” patient. The Dutch Right to Die Society, which campaigns for euthanasia, supports the case but points out on its website that the woman was “officially incompetent.”
AFP - Belgium is considering a significant change to its decade-old euthanasia law that would allow minors and Alzheimer's sufferers to seek permission to die. The proposed changes to the law were submitted to parliament Tuesday by the Socialist party and are likely to be approved by other parties, although no date has yet been put forward for a parliamentary debate. "The idea is to update the law to take better account of dramatic situations and extremely harrowing cases we must find a response to," party leader Thierry Giet said. The draft legislation calls for "the law to be extended to minors if they are capable of discernment or affected by an incurable illness or suffering that we cannot alleviate." Belgium was the second country in the world after the Netherlands to legalise euthanasia in 2002 but it applies only to people over the age of 18.
The present paper constitutes the input of Alzheimer Europe and its member organisations to the ongoing discussions within Europe about advance directives (in the context of Alzheimer’s disease and other forms of dementia). It is the result of discussions carried out in a multidisciplinary group, comprising experts in the field of psychiatry, neurology, pharmacology, psychology, law and ethics, in collaboration with the Board of Alzheimer Europe and its member associations. Please see Annex 1 for the list of participants of the working group. Alzheimer Europe’s position on advance directives was guided by several general principles and was influenced by principles contained in pre-existing European or international documents. Please refer to section D for details. On the basis of these principles and of a review of current literature concerning issues linked to the use of advance directives, Alzheimer Europe has developed the following position with regard to advance directives.
The first reported case of a British person choosing to end their own life at a centre in Switzerland because they had dementia has taken place. The 83-year-old was thought to be in the early stages of the neurodegenerative disease. A psychiatric assessment found that he was mentally competent to make the decision.