Developing a reasonable approach to the medical care of older people with dementia will be essential in the coming decades. Physicians are the locus of decision making for persons with dementia. It is the responsibility of the physician to assure that the surrogate understands the nature and trajectory of the disease and then to elicit the desired goal of care. Physicians need to ascertain whether any advance directives are available, and if so, whether they apply to the situation of advanced (...) dementia. Finally, physicians should help surrogates understand how the goals of care are best translated into practice. When the goal is comfort, this is achieved by assuring dignity, minimizing suffering, and promoting caring. In general, comfort should be the default goal of care, best implemented through palliative care or hospice. (shrink)

America is aging. But even more striking than the rise in the proportion of the population over age 65 is the unprecedented number of individuals who are living into their eighties and nineties. While many people remain robust well into advanced age, the dramatic increase in the number of the oldest old has brought with it an epidemic of Alzheimer’s disease and other dementias. Dementia is a highly prevalent condition — currently 5.4 million Americans have Alzheimer’s disease, a number which (...) may rise to 16 million by 2050 if there is no breakthrough in the prevention or treatment of the disease — but it disproportionately affects those over age 85, striking between one-third and one-half of this cohort. Developing a reasonable approach to the medical care of older people with dementia will be essential in the coming decades. (shrink)

In this issue, Paul Menzel and M. Colette Chandler‐Cramer propose a novel advance directive. Besides giving competent people the opportunity to refuse future life‐prolonging medical interventions, they say, advance directives should give people the opportunity to refuse ordinary food and water if they later experience severe dementia.This proposal is both appealing and unsettling. It is appealing because it offers some relief to people seeking to avoid the prolonged decline and extreme incapacity they have witnessed in relatives and friends with advanced (...) dementia. But does it sufficiently protect patients? Menzel and Chandler‐Cramer want to empower competent persons to impose potential discomfort and distress on a later self who cannot understand the reasons for that choice. In this situation, the price of respecting autonomy is paid by a frail incapacitated patient who has no idea why food and water are no longer offered to her. (shrink)

There is a flood of papers being published on new ways to diagnose Alzheimer disease before it is symptomatic, involving a combination of invasive tests , and pen and paper tests. This changes the landscape with respect to genetic tests for risk of AD, making rational suicide a much more feasible option. Before the availability of these presymptomatic tests, even someone with a high risk of developing AD could not know if and when the disease was approaching. One could lose (...) years of good life by committing suicide too soon, or risk waiting until it was too late and dementia had already sapped one of the ability to form and carry out a plan. One can now put together what one knows about one's risk, with continuing surveillance via these clinical tests, and have a good strategy for planning one's suicide before one becomes demented. This has implications for how these genetic and clinical tests are marketed and deployed, and the language one uses to speak about them. The phrase ‘there is nothing one can do’ is insulting and disrespectful of the planned suicide option, as is the language of the Risk Evaluation and Education for Alzheimer's Disease studies and others that conclude that it is ‘safe’ to tell subjects their risk status for AD. Further, the argument put forward by some researchers that presymptomatic testing should remain within research protocols, and the results not shared with subjects until such time as treatments become available, disrespects the autonomy of people at high risk who consider suicide an option. (shrink)