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Clinical genetic counseling
A R N M D Abstracts "The D e m e n t i a s " / JournaI o f the Neurological Sciences 127 (1994) 1 - - 1 0
unclear. For example, antipsychotic drugs such as haloperidol have been demonstrated mildly effective for agitation accompanied by psychotic symptoms in AD, but adverse effects often outweigh therapeutic effects. Many other psychotropics widely used in AD have
9
never been rigorously evaluated for efficacy. This presentation will review the use of psychotropic drugs in AD and suggest conservative approaches to practical patient management.
Clinical genetic counseling Susan Folstein New England Medical Centel: Boston. MA, USA Key words: Genetic counseling; Genetic testing; Dementia; Alzheimer's disease; Huntington's disease
Genetic information is collected, sometimes stored, and given to individuals in three contexts: genetic counseling, genetic testing, and genetic screening. The purpose, assumptions, risks (including eugenic risks), and benefits of each of these undertakings will be discussed. The principle of providing genetic information will also be elaborated: 1) balancing neutrality with support, 2) confirming diagnosis, 3) deciding what,
how and when to give genetic information. Finally, the clinical application of these principles to the genetic counseling for two dementias, Alzheimer's disease and Huntington's disease, will be contrasted. The issues that are salient to consultants whose family members have these two dementias are very different because of contrasting ages at onset and duration of illness and because of differences in the genes involved.
The ethics of dementia: private and public T h o m a s H. M u r r a y Case Western Reserve University. Cle~elalld. OH, USA Key words: Dementia; Ethics; Advance directives; Treatment; l.imitations; Suicide; Euthanasia
Dementing diseases pose special problems for contemporary bioethics. Wherever possible, ethical dilemmas in treatment choice are resolved by relying on the free and competent choice of the rational, autonomous patient. Dementia erodes rationality, and, as the disease progresses, forces us to second-best approaches to difficult ethical problems. Much of the debate about ethics and the treatment of demented patients can be seen as an effort to apply solutions invented for competent patients to the quite different circumstances of demented patients, often with great strain and difficulty.
Approaches that are more true to the clinical realities of demented persons might provide better solutions. This paper will take a critical look at such measures as advance directives for health care and other efforts to guide decisions according to the preference of the once competent, now demented patient. It will also consider an alternative set of measures based on judgments about the patient's current welfare. It will then apply its conclusions to the problems of treatment limitation, euthanasia and suicide.
Dementia and health care reform R o b e r t H. B i n s t o c k Departmet~t of Epidemiolow & Biostatistics, School of Medicine, Case Western Reserve Uitiversity, Ch, velaml. 011 44106, USA Key words." Dementia; Financing long-term care; Health care reform; Long-term care; Polilics of aging: Politics of disability
For most dementia patients and their families financing long-term care is a major problem. President Clinton's plan for health care reform was one of a series of recent legislative bills attempting to provide public insurance for long-term care for persons of all ages with chronic diseases and disabilities. Enactment of such a policy, however, will require resolution of a number of practi-
cal issues. Among the most important are: how to finance the tens of billions of dollars a year Ibal would be required; and whether the various constituencies in need of care - persons with dementia, older people in general, persons with AIDS, younger disabled adults, and children with cerebral palsy, mental retardation. and other developmental disabilities can overcome
unclear. For example, antipsychotic drugs such as haloperidol have been demonstrated mildly effective for agitation accompanied by psychotic symptoms in AD, but adverse effects often outweigh therapeutic effects. Many other psychotropics widely used in AD have
9
never been rigorously evaluated for efficacy. This presentation will review the use of psychotropic drugs in AD and suggest conservative approaches to practical patient management.
Clinical genetic counseling Susan Folstein New England Medical Centel: Boston. MA, USA Key words: Genetic counseling; Genetic testing; Dementia; Alzheimer's disease; Huntington's disease
Genetic information is collected, sometimes stored, and given to individuals in three contexts: genetic counseling, genetic testing, and genetic screening. The purpose, assumptions, risks (including eugenic risks), and benefits of each of these undertakings will be discussed. The principle of providing genetic information will also be elaborated: 1) balancing neutrality with support, 2) confirming diagnosis, 3) deciding what,
how and when to give genetic information. Finally, the clinical application of these principles to the genetic counseling for two dementias, Alzheimer's disease and Huntington's disease, will be contrasted. The issues that are salient to consultants whose family members have these two dementias are very different because of contrasting ages at onset and duration of illness and because of differences in the genes involved.
The ethics of dementia: private and public T h o m a s H. M u r r a y Case Western Reserve University. Cle~elalld. OH, USA Key words: Dementia; Ethics; Advance directives; Treatment; l.imitations; Suicide; Euthanasia
Dementing diseases pose special problems for contemporary bioethics. Wherever possible, ethical dilemmas in treatment choice are resolved by relying on the free and competent choice of the rational, autonomous patient. Dementia erodes rationality, and, as the disease progresses, forces us to second-best approaches to difficult ethical problems. Much of the debate about ethics and the treatment of demented patients can be seen as an effort to apply solutions invented for competent patients to the quite different circumstances of demented patients, often with great strain and difficulty.
Approaches that are more true to the clinical realities of demented persons might provide better solutions. This paper will take a critical look at such measures as advance directives for health care and other efforts to guide decisions according to the preference of the once competent, now demented patient. It will also consider an alternative set of measures based on judgments about the patient's current welfare. It will then apply its conclusions to the problems of treatment limitation, euthanasia and suicide.
Dementia and health care reform R o b e r t H. B i n s t o c k Departmet~t of Epidemiolow & Biostatistics, School of Medicine, Case Western Reserve Uitiversity, Ch, velaml. 011 44106, USA Key words." Dementia; Financing long-term care; Health care reform; Long-term care; Polilics of aging: Politics of disability
For most dementia patients and their families financing long-term care is a major problem. President Clinton's plan for health care reform was one of a series of recent legislative bills attempting to provide public insurance for long-term care for persons of all ages with chronic diseases and disabilities. Enactment of such a policy, however, will require resolution of a number of practi-
cal issues. Among the most important are: how to finance the tens of billions of dollars a year Ibal would be required; and whether the various constituencies in need of care - persons with dementia, older people in general, persons with AIDS, younger disabled adults, and children with cerebral palsy, mental retardation. and other developmental disabilities can overcome