Guest Author, Robert Best, Executive Director Oak Hill Terrace discusses Frontotemporal Dementia in Part I of a series on dementias.
As our population ages, more of us will experience the impact of Alzheimer’s. There is a very good chance that someone in your own family or a friend has a loved one diagnosed with Alzheimer’s or dementia. The label “Alzheimer’s disease,” once thought to be a rare form of early dementia, has become so common that most people use the terms “Alzheimer’s disease” and “dementia” interchangeably. In reality, dementia is an umbrella term for a diverse group of disorders that cause the loss of memory and other intellectual abilities. Alzheimer’s disease is believed to be the most common form of dementia, accounting for possibly 50 to 70 percent of all cases. However, as researchers have learned to distinguish the types of dementia and as testing methods have improved, we are beginning to see more precise diagnosis. It is advantageous to distinguish between the many types of dementia, as they respond differently to treatments.
Frontotemporal dementia (FTD), once called Pick’s Disease, is also an umbrella term for a number of disorders that primarily affect the frontal and temporal lobes of the brain — the areas generally associated with personality, behavior, memory and language. FTD is rare but the onset can occur in people as young as 20, but usually begins between ages 40 and 60. The average age at which it begins is 54. In this disease portions of the frontal and temporal lobes atrophy or shrink, resulting in damage to the brain. (The New York Times published a very moving story about one couple’s story with FTD on May 5th. When Illness Makes a Spouse a Stranger.)
Some people with frontotemporal dementia undergo dramatic changes in their personality and become socially inappropriate, impulsive or emotionally indifferent, while others lose the ability to use and understand language. As a result, FTD is often misdiagnosed as a psychiatric problem or as Alzheimer's disease. But, frontotemporal dementia tends to occur at a younger age than does Alzheimer's disease. In more rare subtypes of FTD, patients may exhibit problems with movement, somewhat like Parkinson’s disease. Movement related symptoms may include tremors, rigidity, muscle spasms or weakness, poor coordination and difficulty swallowing.
It is important to have a medical evaluation at the earliest signs that something is not right. People who have FTD often do not recognize that they have a problem. In most cases, family members are the ones who notice the symptoms. In any event, the opinion of a qualified health professional should be sought as soon as possible. While there is no cure for FTD, seeking medical advice helps to put the person and their caregivers in control. Early treatment can make a big difference in the quality of life for someone with FTD. Families can become educated about the disease and begin to make future plans regarding health, finances and other important personal decisions.
Caring for someone with frontotemporal dementia can be challenging and stressful because of the extreme personality changes and behavioral problems that frequently develop. FTD is a progressive disease and individuals suffering from it will eventually require continuous care on a seven day a week, 24 hour a day basis. This can be very hard for families to accept, yet the reality of providing around the clock care and keeping their loved one safe is extremely difficult. Most families will need to consider moving the person to a place where they can receive care and supervision they truly require. Assisted living communities, specifically those offering specialized dementia care, can provide the perfect combination of a secure residential environment with the hands-on care that is essential to quality of life. Plans made ahead of time will make this transition easier and may allow the person with FTD to be involved in the decision-making process.
At some of our communities, we provide a program dedicated to the needs of those with Alzheimer’s disease and other dementias. Here families find staff, specially trained in dementia care, who understand the power of a smile, a kind word, and the calming effect of a gentle touch. Professionals who are experienced working with individuals with dementia, particularly those exhibiting dramatic changes in personality and disruptive behaviors, can often anticipate situations that will trigger a change in behavior. Environment, fatigue, hunger, pain and side affects of medications can all be triggering factors. Professional caregivers can find ways to reorient an individual to some extent and maintain a calming environment.
Those of us who care for people with dementia know that we actually care for the entire family. For the person diagnosed with dementia, support, care and compassion from people they trust are very important. Equally critical are support groups for them and their family members to gain information about the disease and what to expect. Support groups can also provide a forum to share experiences and feelings.
Robert Best is Executive Director of Laureate Group’s Oak Hill Terrace community in Waukesha. He is a licensed health care administrator and has almost 30 years of experience working with older adults in a variety of settings, including skilled nursing facilities, senior housing, home care and assisted living. He is a fellow in the Wisconsin Geriatric Education Center, an author of numerous books and articles on aging and has presented at conferences across the United States, including the American Society of Aging and National Council on Aging.