Being a caregiver of a person of dementia, regardless whether its Alzheimer’s disease, FTD or another type, can be emotionally and physically exhausting. Frontotemporal dementia can often be even harder on families because:
· The personality changes and behaviors are very distressing.
· The diagnosis is often delayed because FTD is often mistaken for other conditions.
· Patients affected with FTD are usually younger than those affected by Alzheimer’s and there may be young children in the home to consider.
· There is not as much public awareness about the disease and therefore, not as much support and resources available.
· Language problems develop earlier, making communication more difficult.
Before you worry that it’s FTD
Your doctor’s first mission is to rule out other possible illnesses that may look like FTD, such as Alzheimer’s disease, Parkinson’s disease or psychiatric problems. In most cases, meeting with an FTD expert is the best way to determine a correct diagnosis.
Signs and Symptoms
People with FTD typically first come to the doctor’s office because of:
1. Gradual and steady changes in behavior,
2. Gradual and steady language dysfunction or
3. Gradual and steady weakness or slowing of movement
Apathy is often the first symptom reported by caregivers and may be mistaken for depression. People experiencing these changes may become self-centered, emotionally distant, withdrawn, unaware of the emotions of others, avoid social contact or neglect previous hobbies and interests. They may develop a lack of concern for their personal appearance and become increasingly unkempt early in the course of disease.
Impulsive behavior is another common complaint from caregivers who may find the changes in social and personal conduct embarrassing or frustrating. These behaviors are often associated with a lack of inhibition, resulting in impulsive or inappropriate behavior, such as overeating, outbursts of frustration, touching strangers, urinating in public or diminished social tact. Overeating is common and “food fads” can occur where the person with bvFTD will only eat certain foods. Caregivers often notice an overactive “sweet tooth.” Restlessness, irritability, aggressiveness, violent outbursts or excessive sentimentality are not unusual either.
There is usually difficulty in reasoning, judgment, organization and planning, and consequently, these patients can be quite gullible and fall prey to scams on the computer or in person. As the disease progresses, this lack of judgment may lead to criminal behavior (such as shoplifting, indecent exposure, running stop lights, poor financial judgment or impulsive buying). At the extreme, the impulsivity can be self-destructive, as when patients try to get out of a moving car. In some people, inappropriate sexual behavior occurs.
There may also be repetitive or compulsive behaviors that may include hoarding, doing the same thing over and over (for instance, reading the same book several times or walking to the same location again and again), pacing, or repeating particular “catch phrases” over and over in their speech.
The person with bvFTD may experience false thoughts (delusions) that are jealous, religious or bizarre in nature. Or they can develop a euphoria – excessive or inappropriate elation or exaggerated self-esteem.
Even though they might complain of memory disturbance, patients with the behavioral variant of frontotemporal dementia can usually keep track of day-to-day events and understand what is going on around them. Also, for people with bvFTD, their language skills and memory usually remain intact until late in the disease.
These behaviors have a physical cause and are not something that the person can usually control or contain. Indeed, often the person has little or no awareness of the problem behaviors.
Semantic dementia (SD)
The most common complaint of people with semantic dementia (SD) is increasing trouble naming people, objects, facts and words. As the disease progresses, they lose not only the ability to name something, but also the meaning of what it is they are trying to name – like how to use it or to what context it belongs. People with SD usually know they are having trouble finding their words and understanding what is being said to them. Their speech tends to keep the usual speed and rhythm, but they may substitute similar but incorrect words or replace a word with “thing” or “stuff.” Patients continue to speak the same amount, even as the disease progresses. Some people may develop an inability to recognize familiar faces. Later in the disease course, similar behavioral changes to those seen in bvFTD may appear.
Progressive non-fluent aphasia (PNFA)
People with PNFA tend to come to the doctor’s office with complaints about changes in their fluency or rhythm of speech, pronunciation or word finding difficulty. These patients tend not to show the behavioral characteristics of FTD until quite late in the disease, and they are keenly aware of their difficulties. Depression and social withdrawal are common features of PNFA. As the disease progresses, less and less language is used, until the patient may be virtually mute.
Source: UCSF Memory and Aging Center