Reasons Why Pick's Disease Is So Challenging

Coping with Behavioral Variant Frontotemporal Dementia

Physicians Reviewing Test Results. Troels Graugaard E+/Getty Images

Behavioral variant frontotemporal dementia, also known as Pick's disease, is one of the several types of frontotemporal dementia. Frontotemporal dementia affects between 50,000-60,000 people in the United States.

While all types of dementia are difficult, Pick's disease has a unique set of challenges. Here are a few:

1) No one knows what Pick's disease is.

Okay, that's not true, but it can feel like it.

Relatively few people are familiar with Pick's disease as compared to Alzheimer's disease. This doesn't mean that coping with one type of dementia is easier or more difficult than any other, but it can cause some different challenges since you may need to educate others on why personality or behavior changes have occurred. Sometimes, this can take extra energy when you're already feeling depleted.

2) Memory might remain intact for awhile, but personality changes are very common.

Personality and behavior changes, as well as impaired executive functioning, are the most common symptoms in early Pick's disease. These changes can cause hurt feelings, frustration, isolation, and broken relationships.

3) Some people with Pick's appear as if they don't care anymore about their loved ones.

Due to the effects of Pick's disease, those who suffer from the disease may lose the ability to feel emotions.

Some research has found that people with Pick's disease often can correctly identify whether the emotion displayed by someone else is positive or negative, but they may not be able to feel the emotion themselves. This can make it very difficult for family and friends, and in some cases, it can push away the very people who are needed and could be helpful.

This may be especially true for cases of Pick's disease who are diagnosed later, as the cause of those changes hasn't been identified yet.

4) There's a higher risk of criminal and legal trouble for those with Pick's disease.

Criminal activity is more common in behavioral variant frontotemporal dementia due to the significant impairment in judgment, executive functioning, emotions, and behavior. Common issues include inappropriate sexual behavior, urinating in public, stealing, trespassing and not following traffic rules.

5) There are fewer resources available.

Compared to more familiar diseases, there are fewer physicians who are experts in Pick's disease and less community support for those with the disease and their loved ones. If facility care is needed, securing placement may be difficult due to the behavior concerns in Pick's disease.

6) It's often diagnosed incorrectly or late.

Because the symptoms of Pick's disease typically don't include memory changes until later, the behaviors and emotional changes may initially be thought of as selfish, rude, or out of character.

The delayed diagnosis slows the ability to understand the disease and attribute those actions and emotional changes as effects of the disease and not part of the person. That understanding is critical for coping with Pick's disease. Inaccurate diagnosis, sometimes as psychiatric disorders, also can trigger inappropriate treatment.

7) It typically affects people who are younger.

Behavioral variant frontotemporal dementia most often affects people in their midlife years, as compared to other dementias which are generally more prevalent in older adults. Younger people with dementia often face different challenges, such as interference with raising a family and working at a job.

Sources:

The Association for Frontotemporal Dementia. 2011. Fast Facts about Frontotemporal Degeneration. http://www.theaftd.org/wp-content/uploads/2009/05/Fast-Facts-Final-11-12.pdf

JAMA Neurology. 2015 Mar;72(3):295-300. doi: 10.1001/jamaneurol.2014.3781.

Criminal behavior in frontotemporal dementia and Alzheimer disease. https://www.ncbi.nlm.nih.gov/pubmed/25559744

Journal of Alzheimer's Disease. 2015 Mar 10. Understanding Emotions in Frontotemporal Dementia: The Explicit and Implicit Emotional Cue Mismatch. https://www.ncbi.nlm.nih.gov/pubmed/25757651#

Neurology. April 25, 2012; 78. Characteristics of Behavior-Variant Frontotemporal Dementia (FTD) across the Lifespan.  http://www.neurology.org/cgi/content/meeting_abstract/78/1_MeetingAbstracts/P05.066

Continue Reading