Symptoms

Behavioral variant FTD patients show behavior that is rigid, bizarre and socially inappropriate, which can cause frustration and embarrassment for the caregiver. Patients may show a decrease in their drive and motivation, called apathy. Some patients have an increase in appetite and carbohydrate cravings. These behavioral symptoms may emerge in both PNFA and SD as the disease progresses. The behavioral symptoms are often more stressful for families than the cognitive symptoms. Browse our practical tips to help come up with strategies for dealing with these changes. You can also submit your own ideas.

Furthermore, it is common for frontotemporal dementia patients to lack self-awareness and insight into their problems. They may state confidently that there is nothing wrong with them, which can add to your frustration as a caregiver. FTD patients may also show a loss of empathy, an aspect that is extremely difficult for some families to accept. For example, they may become self-centered and unable to recognize and respond to the emotions of another person. As a caregiver, it may help to learn that this is due to damage to the brain, structures like the amygdala and the frontal lobes and not directed at you personally.

Communication abilities can be affected in FTD. The patient may have real trouble saying what they want or understanding what is being said. Be clear and concise in your manner of communicating. You may need to break information into more discrete phrases and be specific. Physical gestures and cues can be helpful in getting the message across. Speaking positively, rather than negatively may be easier for both you and the patient. For example, rather than saying “don’t do that” say “please do this”.

FTD often causes profound alterations in relationships. Emotional blunting, apathy, inappropriate behaviors and difficulty with communication are just some of the variables that can impact the quality of a relationship. Because of the disease, the caregiver must take over decision-making that was once shared. Families are required to make many adaptations in response to the behavioral and personality changes associated with FTD.

The challenges in Alzheimer's disease (AD) tend to revolve around the memory problems with person with the disease experiences. The lack of memory for events or people can make the individual extremely anxious about daily life. Patients with Alzheimer's disease tend to maintain socially acceptable behavior, although the memory difficulties can lead to anxiety and agitation. Like a person with FTD, a person with AD may also appear apathetic and uninterested in former hobbies but it tends to come from the overwhelming difficulty of the task rather than a true lack of interest.

Unlike AD, FTD patients often develop motor problems early in their illness. With PNFA and FTD, manifestations of progressive supranuclear palsy (PSP) or corticobasal degeneration (CBD) can emerge so falls, rigidity and swallowing problems are common. Similarly, in some patients with FTD, an amyotrophic lateral sclerosis (ALS) picture with weakness, dysarthria and difficulty swallowing (dysphagia) can be severely disabling.