This article was updated on: 05/15/2017
Are you the caregiver for someone with frontotemporal dementia? The National Institutes of Health (NIH) estimates that FTD accounts for about 10% of all cases of dementia. It affects men and women almost equally, usually on the younger end of the dementia spectrum – it’s most commonly diagnosed between the ages of 45 and 64.
If you are a caregiver, learn the symptoms of frontotemporal dementia and what to expect.
What is frontotemporal dementia?
The term “frontotemporal disorders” refers to a group of diseases that affect the brain’s frontal lobe and/or frontotemporal region, according to the National Institutes of Health. This article refers to them collectively as “frontotemporal dementia.” It used to be called Pick’s disease, after the physician who originally identified the condition. It is not the same as Alzheimer’s disease.
What are common frontotemporal dementia symptoms?
When a loved one first shows signs of frontotemporal dementia, it can be unsettling – especially if the person is middle-aged, years before one might expect dementia to occur. Family members may believe that their loved one is simply acting out or misbehaving, when in fact, she cannot control her frontotemporal dementia symptoms and may lack any awareness of the disease itself. According to the NIH, the most common frontotemporal dementia symptoms may vary depending on the function of the affected lobe and exactly where the damage is. Examples of possible frontotemporal dementia symptoms include:
- Trouble planning and prioritizing events, multi-tasking, or thinking through the consequences of one’s actions
- Acting impulsively and inappropriately, such as laughing at a funeral or shoplifting a soda from the grocery store
- Repeating the same word over and over, or performing the same task or activity repetitively
- Language disorders, such as the inability to understand speech to speak clearly
- Displaying emotional or other personality changes. Your loved one may seem apathetic to his surroundings or show inappropriate behavior. He may lose the ability to read social cues and facial expressions. The person may also develop an eating compulsion (wanting to eat very frequently).
- Movement and gait abnormalities. These are often some of the most noticeable frontotemporal dementia symptomsand may include tremors, clumsiness, or apraxia (the inability to perform common movements such as combing one’s hair or using a knife and fork).
As a caregiver, you may want to be alert to symptoms that the disease is progressing, such as loss of the ability to communicate, muscle rigidity, or hyperoral activity (such as mouthing objects or inserting them into the mouth).
How is frontotemporal dementia different from Alzheimer’s disease?
The Alzheimer’s Association lists the following differences between frontotemporal dementia and Alzheimer’s disease:
- FTD is usually diagnosed around middle age, while Alzheimer’s disease is more common in people aged 60 or older.
- Severe memory loss, or getting lost in familiar territory, is usually more typical of Alzheimer’s disease than of frontotemporal dementia.
- Problems with speech (such as the inability to form a clearly understood sentence, or not understanding others) is more likely with FTD than with Alzheimer’s.
- Behavioral changes are often the first indicator of FTD, while Alzheimer’s patients don’t typically develop behavioral issues until the disease is more advanced.
- It is generally more common for people with Alzheimer’s to have hallucinations or delusions than for those suffering from FTD.
What should I know as a caregiver for someone with frontotemporal dementia?
There is no treatment for FTD right now, although the NIH suggests ways that might help you manage the symptoms, as a caregiver:
- You need to be prepared, and prepare other family members, for a change in relationships as the individual gets worse. Understanding the behavioral issues that accompany FTD, and explaining them to loved ones, may help decrease the stress and occasional embarrassment these behaviors may cause.
- Make sure your loved one is safe, since she might start doing things that could hurt her, like trying to use a sharp object as a tool.
- Trying to argue or reason with your loved one generally doesn’t help, and might only raise the stress level all around.
- It’s easy to get frustrated, so try to remember that it’s the illness that’s making him difficult to deal with. Try taking a deep breath and counting to 10, or leaving the room for a few minutes if it wouldn’t endanger your loved one.
- Get emotional support for yourself if you can. The NIH lists several resources; here are just a few of them.
Your doctor may be able to prescribe medication to help with some of the symptoms, such as irritability, depression, and agitation. Frontotemporal dementia typically gets worse over time, reports the NIH, although the rate of decline varies from person to person. Most people live anywhere from 3 to 14 years after an FTD diagnosis.
It may be a good idea to consult an attorney for estate planning and end-of-life issues as soon as possible while the individual can still participate in the decision-making process. As the disease progresses, cognitive abilities decline, and your loved one may no longer be competent to manage her own affairs and make choices about health care.
This article is for general information only and may not apply to your circumstances. This article should not be used as a substitute for professional medical advice. You should always consult with your medical provider regarding diagnosis or treatment for a health condition, including decisions about the correct medication for your condition, as well as prior to undertaking any specific exercise or dietary routine.