Dementia Is Not a Diagnosis

The first step in caring for someone with dementia is to get the right diagnosis.

Dementia is not a diagnosis. Dementia is a general term indicating that thinking and memory are impaired enough that day-to-day function is compromised, such as difficulty with grocery shopping, preparing meals, using a telephone, or balancing the checkbook. Saying that someone has dementia is like saying that someone has a headache—it doesn’t imply anything about the underlying cause. Headaches can, of course, be caused by things that are benign, such as muscle tension or migraines, or by things that are much more serious, such as a brain tumor or a stroke. Similarly, dementia can also be caused by things that are relatively benign, such as a vitamin deficiency or a thyroid disorder, or by more serious disorders such as Alzheimer’s disease or frontotemporal dementia.

There are many reasons as to why it is important to get the right diagnosis.

The first reason is the most obvious: we want to make sure that we check for those reversible causes of dementia, such as B12 deficiency, hypothyroidism, or a chronic infection such as Lyme disease. Many of these causes can be evaluated through blood tests. Depression is another potentially reversible cause of dementia. There are other causes of dementia that, once determined, may also lead to improved cognition or, at least, can stop its decline. Structural brain imaging studies such as MRI and CT scans can identify: subdural hematomas (accumulation of blood between the skull and the brain), which may need to be removed; normal pressure hydrocephalus (accumulation of spinal fluid inside the brain), which can also be treated surgically; or large strokes that need to be evaluated to prevent future strokes.

The second reason to obtain a diagnosis is to identify those aspects of cognition that are likely to be affected early, and those aspects that are likely to be affected later.

• In Alzheimer’s disease memory problems are usually the first symptom, followed by word-finding difficulties, trouble with complicated activities, and getting lost on familiar routes. Only later in Alzheimer’s disease do other symptoms sometimes occur, such as a change in personality, agitation, incontinence, and aggression.
• In frontotemporal dementia, changes in personality and behavior come first, along with difficulties doing complicated activities. Language problems and changes in diet typically occur next, followed by memory problems.
• In dementia with Lewy bodies, visual hallucinations of people and animals may be an early symptom, as is acting out dreams (often kicking bed partners) while sleeping. The stiffness, tremor, and shuffling steps of Parkinson’s disease are other early signs.
• In vascular dementia, trouble with complicated activities is often the first sign, with memory problems coming later.
• In normal pressure hydrocephalus, urinary urgency—needing to run to the bathroom—is an early sign, leading to incontinence when one doesn’t make it on time. Walking slowly with small steps, and trouble with complicated activities are other early signs.

And there are many other causes of dementia in which different problems typically occur, each with their own order.

The third reason to get the right diagnosis is so that the correct evaluation and treatment can be initiated.

• Cholinesterase inhibitors, such as donepezil (Aricept), rivastigmine (Exelon), and galantamine, can improve patients with Alzheimer’s, dementia with Lewy bodies, and vascular dementia.
• SSRIs (selective serotonin reuptake inhibitors), such as sertraline (Zoloft), citalopram (Celexa), and escitalopram (Lexapro), are first-line therapy for frontotemporal dementia.
• Surgical evaluation and possible intervention is needed for those with normal pressure hydrocephalus or subdural hematoma.
• Stroke workup and treatment, usually with aspirin or other blood thinners, is necessary for vascular dementia.

Lastly, there are research opportunities available for some causes of dementia. For example, new medications are being developed that may be able to actually remove the amyloid plaques that kill brain cells in Alzheimer’s disease. Knowing that your loved one has Alzheimer’s disease would, of course, be the first step in taking advantage of this opportunity.

So, don’t let the doctor give you or a loved one a diagnosis of “dementia” without explaining what is causing the dementia. It’s like walking in to the office complaining of pain in your head, and the doctor concluding, “Yes, you have a headache.” None of us would be satisfied being given the diagnosis of “headache,” and we shouldn’t be satisfied being told the diagnosis is “dementia” either.

See Budson & O’Connor (2017) for more information.

© Andrew E. Budson, MD, 2018, all rights reserved.