Managing FTD

As public awareness and diagnostic tools improve, more people are diagnosed with an FTD disorder in the early stage when symptoms are mild. It is important to stay healthy and active to reduce the impact of symptoms as long as possible.

While no lifestyle change will stop the progression or reverse the disease, steps can be taken to manage symptoms to the best of your ability. For example, research shows that proper nutrition, regular exercise and stress management can help to protect brain functioning, among other benefits (including reducing the risk of heart disease).

Following a Daily Routine

Many people with FTD, as well as their care partners, benefit from following a regular daily routine. Predictable patterns and activities — meals, household tasks, physical activity, hobbies, social interaction, spiritual development, a regular sleep schedule – provide an important framework for both the person with FTD and the caregiver.

While routines are important, FTD is unpredictable, so it is important for care partners and persons diagnosed to remain flexible. While you may not be able to do things as quickly or easily as before, activities can be adapted and still provide enjoyment. As symptoms progress, it may become necessary to discontinue some activities.

Engaging in Activities

It is also important for people with FTD to stay engaged in enjoyable and stimulating activities of their choosing. If competitive poker or bridge was a favorite social activity, playing a more casual or simpler version with fewer rules if needed can engage the person, connect with that part of their past and provide a meaningful way to interact with others. These activities should bring enjoyment to the person with FTD. If one becomes too difficult or stressful as abilities change, it is time to reevaluate and adjust. An activity can be as simple as listening to music or watching the birds outside, as long as it brings enjoyment. FTD impairs an individual’s ability to think clearly and act rationally. A person with FTD may act compulsively, aggressively or otherwise out of character. These are symptoms of the disease. People diagnosed cannot control these types of behaviors, and they often struggle to correct them, even when a loved one points them out.

Managing Symptoms

Since people with FTD often cannot be expected to change their behavior, caregivers must adjust their own expectations when it comes to managing these symptoms. Confronting a person diagnosed and trying to correct their actions after the fact is usually less successful than trying to prevent these behaviors before they happen, and reducing the risks involved if they do happen.

AFTD’s HelpLine (866-507-7222 or info@theaftd.org) can assist you in managing the often difficult symptoms associated with FTD. For a comprehensive approach to FTD symptom management, you can watch this AFTD Educational Webinar presented by Dr. Alvin Holm, Founder and Director of the Cognitive and Behavioral Disorders Program at Bethesda Hospital in St. Paul, Minnesota Below, you will see information about some of the more common symptoms.

Aggressive Behavior

Aggressive behaviors may include shouting, name-calling or even physically abusive actions such as hitting, pushing, biting, pinching, scratching or grabbing. People with FTD may act aggressively in response to frustration, or they may lash out for seemingly no reason at all.

Issue 14 of Partners in FTD Care has more information about managing aggressive behavior.

Compulsive Behavior

FTD often manifests as compulsive, repetitive behaviors, ranging from simple actions (clapping, scratching, perseverating certain words or phrases) to more complicated ones (repeating the same walk every day, hoarding). These behaviors can also include compulsive eating, or obsessively eating one type of food (often sweets).

Issue 4 and Issue 14 of Partners in FTD Care have more information about managing compulsive behavior.

Sexual Behavior

FTD can impact a person’s capacity for sexual expression in a number of ways, ranging from a total loss of sexual interest to a sharply increased sex drive (known as hypersexuality). These symptoms can cause problems within marriages and lead to antisocial actions when the person diagnosed is in public.

Issue 12 of Partners in FTD Care has more information about managing changes in sexual behavior.

Communication

FTD affects parts of the brain that are responsible for language formation and understanding, so the communication ability of people diagnosed is often impacted in a negative way. They may lose the ability to form words and sentences, or they may engage in spontaneous, disruptive vocalizations.

Issue 2 and Issue 17 of Partners in FTD Care have more information about managing communication-related symptoms.

Falls and Dysphagia

Falls and dysphagia are two common and potentially very dangerous symptoms of FTD. Certain FTD subtypes, such as progressive supranuclear palsy, affect one’s ability to walk and maintain balance. Dysphagia, meanwhile, refers to difficulty swallowing, and can lead to fatal choking.

Issue 15 of Partners in FTD Care has more information about managing falls and dysphagia.

Incontinence

Incontinence is common in the middle or late stages of FTD and other dementias. Circuitry in the healthy brain allows us to inhibit or stop the reflex that triggers the bladder to empty. There are strategies that can help, however.

Issue 10 of Partners in FTD Care has more information about managing incontinence.

Roaming

Roaming is a form of compulsive behavior that can have severe consequences if not adequately monitored and managed. GPS tracking devices can help prevent a tragedy if your loved one with FTD has a penchant for roaming.

Issue 7 of Partners in FTD Care has additional information about managing roaming.

Tips for Coping with FTD

Having FTD or caring for a person with FTD is an extremely difficult, frustrating and often emotionally overwhelming journey. Here are some things to keep in mind that may make your experience somewhat easier:

  • Don’t take it personally. FTD robs people of their self-control and ability to make rational decisions. Challenging, disturbing, and problematic behaviors are symptoms of the disease, and not deliberate actions or personal attacks. This can be critical to learning how to cope with the behaviors and respond appropriately.
  • FTD isn’t well known. Nor is it understood even within the health care community. It is often misdiagnosed or confused with other dementia such as Alzheimer’s. You may need to educate healthcare and other service providers on the similarities and the differences between FTD and other diseases, even as you are educating yourself.
  • There’s a lot to learn. Keep educating yourself — not just about the disease, but also about what resources and services are available to caregivers and people with FTD, how they work and how to take advantage of them. Knowledge can be your best tool for finding quality care for your loved one, and will help you be a more effective advocate and caregiver.
  • You are not alone. AFTD can help you find caregivers and other people who understand FTD. Find a support group and other resources in your area. AFTD’s Helpline can be reached via info@theaftd.org or by phone at 1-866-507-7222. Sometimes, just talking to someone who understands can be more helpful than all the doctors and lawyers in the world.
  • Trust yourself. You are advocating for someone with a serious medical condition who deserves respect and competent care no matter how poorly others understand their symptoms. As the primary caregiver you will have the most intimate knowledge of what does or does not work for your loved one, and any changes that occur in his or her condition. Ask questions and speak up. Your opinion is valuable and needs to be heard.
  • Take care of yourself. You are in it for the long haul. Pace yourself, and finds ways to reenergize. Ask friends and family for the help that you need. Taking care of yourself is essential.