7 Reasons Why Pick's Disease Is so Challenging

Coping With Behavioral Variant Frontotemporal Dementia

Physicians Reviewing Test Results
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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.

Physicians Reviewing Test Results
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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.

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.

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.

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.

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.

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.

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.

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By Esther Heerema, MSW
Esther Heerema, MSW, shares practical tips gained from working with hundreds of people whose lives are touched by Alzheimer's disease and other kinds of dementia.