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March 12, 2013 | Posted By Jane Jankowski, LMSW, MS

Thomas Gray first coined the phrase “ignorance is bliss,” in his Ode on a Distant Prospect of Eaton College, but is that truly the case when it comes to the millions of people who are diagnosed with some form of dementia related cognitive impairment? According the a recent article in the Wall Street Journal, early dementia testing may offer many benefits to patients and families who will face long term care needs as the disease progresses.  The article notes that early screening is only one step in a continuum of care and planning. Once a diagnosis is made, do the benefits of knowledge outweigh the burdens for the patient?

When it comes to care planning, the benefits of early detection of a progressive dementia likely do outweigh the burdens, for both patient and family. Depending on the patient’s awareness of the cognitive changes, the individual may be able to indicate wishes for treatment and complete advance directives. Family members can discuss residential options and consider how supervision and support will be provided before they face a crisis. Though many strains may be minimized with early planning, it may be difficult to interpret the patient’s genuine preferences at later stages, and just how much weight should later wishes be given? 

The burdens of knowledge may impact the patient most, as many older adults dread and fear the devastation of advanced memory loss. Anticipating the loss of independence, the inability to recall and interact with loved ones may indeed be worse than the actual experience of memory loss, though we have no way of knowing this for sure. Objective measures of contentment may be the only guide for family members who must interpret the patient’s previously expressed wishes once the patient no longer seems to be the same person. Can what one prefers in a healthy state be a reliable predictor of what one wants once they are changed by illness or debility? In the case of dementia, we don’t have the advantage of a look back as we might with a patient who later recovers enough to provide a retrospective view. 

In general, the best interests of the patient and family seem served by early detection whenever possible. Dementia is one of many progressive health problems people may encounter, and like most, early diagnosis holds advantages in terms of long term planning and treatments to slow the progression of the disease. This difference with cognitive impairment, however, is that awareness of what is lost may not continue, and though we struggle to understand the inner experience of these patients to ensure individual best interests are supported, it is difficult to ever know for sure how well we succeed. 

The Alden March Bioethics Institute offers a Master of Science in Bioethics, a Doctorate of Professional Studies in Bioethics, and Graduate Certificates in Clinical Ethics and Clinical Ethics Consultation. For more information on AMBI's online graduate programs, please visit our website.

2 comments | Topics: Advance Directives, Decision Making, Patient Care

Comments

Dave Hoffman

Dave Hoffman wrote on 03/21/13 8:54 PM

While there remains much we don't know about dementia, there is a rapidly growing body of evidence that it is in the interest of both patient and caregiver (family) to have early detection of cognitive impairment. In many cases there are some symptomatic treatments that can provide some relief to the patient, and both patient and caregiver have time to plan. It is significant that this planning is not just for predictable healthcare choices, but include custodial care (i.e. adult day services), nutrition (i.e.meals on wheels), housing, finances, and estate planning. Additionally, Mittelman's work at NYU has shown clearly that this planning along with training and regular supports reduces caregiver stress, thus reducing risk of physical or mental health complications in the caregiver. These and other issues are now addressed in the first National Plan to address Alzheimer's Disease Research, Care, and Services ( http://aspe.hhs.gov/daltcp/napa/NatlPlan.shtml). Thank you for a great blog post with important questions.
Charlie Kite

Charlie Kite wrote on 03/22/13 11:59 AM

Having experienced the role of Doc and family member caregiver in Alzheimer disease, I would want my own decisions pre-dementia to supersede any seeming expression of my intra dementia 'decision'. The last person to intercede on my behalf is one whose livelihood is inextricably interconnected with prolonging my life/death. I would not have my urinary tract infection worked up and treated if I cannot recognize my family, palliative pain medication would be adequate to respond to my expressions of concern as a demented mind with a UTI. This is the ethical equivalent of a DNR, institutions involved in such care need intergrate their hospice role at such junctures.

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BIOETHICS TODAY is the blog of the Alden March Bioethics Institute, presenting topical and timely commentary on issues, trends, and breaking news in the broad arena of bioethics. BIOETHICS TODAY presents interviews, opinion pieces, and ongoing articles on health care policy, end-of-life decision making, emerging issues in genetics and genomics, procreative liberty and reproductive health, ethics in clinical trials, medicine and the media, distributive justice and health care delivery in developing nations, and the intersection of environmental conservation and bioethics.
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