Recently, the news of actor Bruce Willis’ frontotemporal dementia diagnosis made national headlines, but it also put the spotlight on a disorder many are unfamiliar with.
What is frontotemporal dementia?
According to the NIH, Frontotemporal disorders (FTD), sometimes called frontotemporal dementia is a rare form of dementia that tends to occur at a younger age than other dementias and is “the result of damage to neurons in the frontal and temporal lobes of the brain.”
People with FTD can have a range of symptoms including:
- Highly unusual behaviors
- Emotional problems
- Trouble communicating
- Difficulty walking
As with other dementias, caring for someone with FTD can be difficult both physically and emotionally. This can result from challenges with managing the medical and day-to-day care and other changes that caregivers can experience including changing family and social relationships, loss of work, poor health, stress, decisions about long-term care, and end-of-life concerns.
Taking a closer look at how FTD can impact you can help you become more familiar with what to expect and what you can do to manage it more effectively.
Did you know?
Roughly 60% of people with FTD are 45 to 64 years old.
How Frontotemporal Disorders Affect Families
People with FTD and their families often must cope with changing relationships, especially as symptoms get worse. Spouses or partners may find themselves not only taking on caregiving responsibilities, but also household responsibilities that their partner can no longer perform.
Children may suffer the gradual loss of a parent at a critical time in their lives. Family members and friends may feel alienated or embarrassed by the person’s behavior. Life at home can become very stressful.
Justin’s story is a great example of the toll the disorder can have on a family.
After Justin graduated from college, he went home to live with his parents. It didn’t take long for him to notice personality changes in his 50-year-old mother, a successful executive. She became more childlike and had trouble finishing household chores. By the time she was diagnosed with Behavioral Variant Frontotemporal Dementia (bvFTD), Justin’s relationship with his mother had deteriorated. Learning about the disorder helped Justin understand and accept the changes he was seeing in his mother.
How FTD Can Affect Work
People living with FTD may have difficulty with basic work skills, such as organizing, planning, and following through on tasks. Activities that were easy before might take much longer or become impossible. People may lose their jobs because they can no longer perform. As a result, the caregiver might need to take a second job to make ends meet, or reduce their hours, or even quit working to provide care and run the household.
An employment attorney can offer information and advice about employee benefits, family leave, and disability if needed. Workers diagnosed with FTD can qualify for Social Security disability benefits through the “Compassionate Allowances” program (800-772-1213), a program that helps individuals with certain serious conditions access benefits quickly.
If you are a family caregiver caring for a loved one living at home with you, you may find the daytime assistance provided by an adult day service center helpful in giving you some respite, while also ensuring your loved one gets the care they need.
Strategies To Help Manage FTD Symptoms
There is no cure for FTD and no way to slow it down or prevent it. However, there are ways to help manage symptoms, which include changes in behavior, speech, and movement.
Managing behavior changes in FTD
- Try to recognize it’s the illness “talking” and accept rather than challenge people with behavioral symptoms. Arguing or reasoning with the person will not help; they cannot control their behaviors or even see that they are unusual or upsetting to others. Alzheimer’s Orange County offers free educational classes that can teach you how to communicate more effectively with your loved one.
Treating language problems in FTD
- To help with language issues, speak slowly and clearly, use simple sentences, wait for responses, and ask for clarification if you don’t understand something. Gesturing, drawing, and using an album with labeled photos of people and objects may help communicate without talking. A speech-language pathologist can determine the best tools and strategies for a particular person.
Managing movement problems in FTD
- Several types of FTD cause problems with movement, including difficulty balancing, walking, and swallowing. Medications and physical and occupational therapy may provide modest relief for the movement symptoms of FTD. A doctor who specializes in these disorders can guide treatment. Learn more about strategies to manage FTD symptoms.
FTD Caregiver Health And Support
Caring for someone with FTD presents unique challenges. Many caregivers face declines in their own health while caring for a person with FTD or a related disorder. To stay healthy, caregivers can:
- Get regular health care
- Ask family and friends for help with child care, errands, and other tasks
- Spend time doing enjoyable activities, away from the demands of caregiving. Arrange for respite care — short-term caregiving services that give the regular caregiver a break — or take the person to an adult day care center, a safe, supervised environment for adults with dementia or other disabilities.
- Join our support group for caregivers of people with FTDs. Such groups can be a valuable resource to share experiences and tips with others who may be in the same situation. For more information about our specialized support group for FTD caregivers contact email@example.com
Long-Term Care For People With FTD
For many caregivers, there comes a point when they can no longer take care of the person with FTD without help. The caregiving demands are simply too great, and the person may need around-the-clock care. As the disease progresses, caregivers may need home health care services or to look for a residential care facility, such as a group home, assisted living facility, or nursing home.
Whether you or someone you know is being affected by FTD or another form of dementia, no one should have to face it alone. We can help! Talk to one of dementia care specialists for free, one-on-one support and see how we can help you. Call our free Helpline at 844-373-4400 today.
Additional Reading & Resources
Find solutions and connect with others like you by joining our Caregivers of Lewy Body Dementia & Frontotemporal Dementia support group or one of our other support groups available. Learn more here.
Providing Care For A Person With A Frontotemporal Disorder
Discover essential tips and info to help you care for your loved one with FTD in this caregiver tip sheet. Read more here.
Enroll in our free classes to gain a better understanding of dementia and learn practical strategies and techniques you can use to become a more knowledgeable and skilled caregiver. Learn more here.