In Alice’s case, her neurologist followed the diagnostic steps well—her initial exam was basically normal, so he reassured her and told her to follow up; repeat exams showed increased difficulties with memory, and reversible causes of dementia were ruled out. When it came time to tell her that she had Alzheimer’s, he didn’t stall or try to avoid the inevitable. He talked her through the process, answered all her questions, and encouraged her to stay as active as she could. This neurologist knew how the inevitable change in function and life ahead for Alice would impact her family. He chose to give Alice a name for her increasing cognitive debilitation in a direct, but kind, way. He made a follow-up visit to discuss the diagnosis with Alice and her husband so that the family could be involved in the decisions about how life for Alice and those close to her would change. He attended the symposium where Alice spoke about her illness, in her final performance in front of an audience, and he acknowledged her courage and success.
In practical terms, it can frequently be difficult to diagnose a dementia, especially in the early part of whatever disease is driving the process. Most people with pre-dementia, commonly referred to as mild cognitive impairment, will go on to develop dementia, but not everyone progresses. There are some additional tests, such as PET and SPECT scans, that can be helpful in diagnosis, but even with these novel scans, nothing is absolutely certain.
CN – Cognitively normal; MCI – Mild Cognitive Impairement; AD – Alzheimer’s Disease; AB – Amyloid beta present (+) or not present (-); amyloid beta is a protein deposit that builds up in Alzheimer’s disease, and these imaging modalities can detect its presence using an injected marker. These are pictures of the brain. (Source: Molecular Psychiatry (2014) 19, 1044-1051; doi:10.1038/mp.2014.9)
This lack of certainty is one of the most agonizing aspects of dementia for patients and families. Patients rightly ask, “How long do I have until I can’t recognize my family?” or “How long do I have until I can’t dress or shower myself without help anymore?” Family members wonder how they will care for the patient when or if things progress. It’s also difficult for physicians, because we often don’t have the right answer, and almost certainly don’t know after the first visit. It is important to acknowledge these shortcomings whenever a patient comes to our offices for a visit; otherwise, uncertainty can just compound anxiety and suffering.
Still Alice is an important film. It humanizes one of the most common diseases affecting the elderly today. It shows the doubt, the denial, the way family members deal with their own suffering. It follows a strong, intelligent woman as she tries to research and manage (using various memory cues and aids that she’s used her entire life) her way through the early stages of the disease. And, importantly, it highlights how much more there is to do in terms of understanding this disease. We can see how urgent it is that we increase our efforts to look for new medications to delay and manage symptoms; to look at great numbers of people over many years before the disease is clinically evident in order to find the clues for the cause of this disease; and to hold onto the hope of not just prevention, but cure.
References
Genetics of and Genetic Testing in Alzheimers, National Institute on Aging
Pre-Clinical Detection of Alzheimer’s Disease Using FDG-PET, with or without Amyloid Imaging, J Alzheimers Dis. 2010; 20(3): 843–854; doi:10.3233/JAD-2010-091504
