The Need for a Diagnosis?

Successful families understand the need for a diagnosis (and intervention) when there is concern for safety. “[D]iagnosis and intervention are necessary to ensure the health and safety of the patient,” when the individual is not managing medications, finances or transportation independently (Knopman and Peterson, 2014, p.1452).

Without a diagnosis, there is a “high risk for crisis-driven management such as acute hospitalizations, critical care unit admission, and premature institutionalization,” citing Tung (2020, p. 1281). All need to be avoided.

Diagnosis is not called for in all instances. As Knopman and Petersen point out, “cognitive screening of the elderly in the absence of a clinical concern has not been found to be of clear benefit. . . . The critics [of screening] point out the stigma associated with a diagnosis of cognitive impairment, the modest interventional opportunities, and the occasional reversal of MCI to cognitive normality” (2014, p. 1457).

Diagnosis and Intervention

If it is decided that a diagnosis is necessary, where can you turn? According to Jason Karlawish, M.D., Professor of Medicine, Perelman School of Medicine at the U. of Pennsylvania, it’s best to seek out the guidance of the person’s primary care physician, who would decide whether to make a referral to a specialist. Karlawish is the author of “The Problem of Alzheimer’s: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It,” (St. Martin's Press, 2021), a book I highly recommend to families and for anyone in the position of serving clients.

To determine what is normal (and not) requires an individual assessment. Nine-tenths of the workup is history, according to Karlawish. The workup follows three themes and three stages of development.

1. Difficulties performing the usual everyday tasks the person once performed effortlessly, such as taking medications or traveling outside the home.
2. Changes in behavior and mood. Apathy is the earliest and most common symptom.
3. Anxiety, depression, and false beliefs or delusions.

Developing a history involves talking to not only the person, but also “informants” such as a spouse or family members, or others who have witnessed changes over time.

A timely diagnosis is the goal; timely, meaning early in the onset of a potential disease. The sooner a diagnosis can be reliably achieved, the sooner a plan can be developed for the immediate and future care of the individual. Further, there is an opportunity to involve the individual, as “In the early stages, such as MCI, patients are aware of their cognitive difficulties and may themselves raise the concern with their physician” (Knopman and Petersen, 2014, p. 1455).

When it’s time for a diagnosis, an expansive review is necessary, as described in Mayo Clinic’s “Approach to the Older Adult with New Cognitive Symptoms,” June 2020. (See resources.) That review involves a full medical history from both the individual and family members, along with a mental status examination and functional review of strengths and weaknesses in performing daily living tasks over time.

ABA- Senior Lawyers Division

Julie Jason