Renovating Alzheimer's

'Constructive' Reflections on the New Clinical and Research Diagnostic Guidelines

Daniel R. George; PhD; MSc; Sara H. Qualls; PhD; Cameron J. Camp; PhD; Peter J. Whitehouse; MD; PhD

Disclosures

Gerontologist. 2013;53(3):378-387. 

In This Article

Abstract and Introduction

Abstract

The development of disease concepts for conditions such as Alzheimer's disease (AD) is an ongoing social process that evolves over time. The biomedical paradigm about AD that has informed our culture's understanding of brain aging for the past several decades is currently undergoing a major and timely renovation in the early 21st century. This evolution is reflected in new guidelines issued by the National Institute on Aging and Alzheimer's Association (NIA/AA) for the diagnosis of AD and related conditions that aim at helping researchers identify and eventually treat AD in its presymptomatic stages. The purpose of this article is to offer the scientific, clinical, and ethics communities a critical analysis of the implications of proposed guidelines and prompt deeper reflection about the lessons learned from these new efforts both in terms of their actual content and the cultural context in which they were issued and will be used. From a social-constructivist perspective, we explore the gradual 100-year evolution of AD and summarize the proposed NIA/AA guidelines within this historical context, enumerating what we see as their main benefits and limitations. We then consider the potential implications of these guidelines in the clinical setting, and explore shifts in our cultural paradigm about brain aging that might be engendered by the logic of the guidelines.

Introduction

Lydia thought long and hard about whether to enroll in a research study of biomarkers for Alzheimer's disease (AD). On the one hand, she'd like to know her risk, but how will her life change if she is found to have a biomarker? Who will she tell? Will she prioritize her life roles and tasks differently? Knowing in your 40s that you are doomed unless there's a major research breakthrough is pretty heavy. How would her sister handle it? Will she want to be tested too? What about her children? Will they start to watch her differently, checking closely for mistakes she is making and interpreting them as AD? Even risks for cancer are different from this—with cancer you can do something, but there seems to be nothing you can do to prevent AD. Hopefully, she will hear that she lacks the biomarker and be able to go home free of fear. Lydia decides to attend the feedback session alone, not even telling her partner that she is enrolled in the study. She'll figure out the implications later if she has to. Fascinating to think that none of these early screening options existed a decade ago, when her mother had started her decline. …

Lydia's dilemmas reflect the personal level at which the evolution of a disease construct can generate confusion and distress. The purpose of this article is to offer the scientific, clinical, and ethics communities a critical analysis of the implications of proposed guidelines recently issued by the National Institute on Aging (NIA) and Alzheimer's Association (AA) for the diagnosis of AD and related conditions (Albert et al., 2011; McKhann et al., 2011; Sperling et al., 2011). We begin by establishing a social-constructivist perspective that is useful for understanding the metamorphosis of disease concepts over time, and then turn to a closer consideration of AD, summarizing the proposed NIA/AA guidelines while enumerating what we see as their main benefits and limitations. We then consider the potential implications of these guidelines—which are now ostensibly intended for research—in the clinical setting, and explore shifts in our cultural paradigm about brain aging that might be engendered by the logic of the new guidelines.

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