Navigating FTD Symptoms

Although there are currently no disease-modifying treatments available for FTD, there are resources to learn how to best approach common symptoms in FTD, reduce stress and promote quality of life. Learning how to approach changes caused by FTD can feel like a steep learning curve. No one enters this journey prepared and mistakes will be made even with the best intentions. Grace and humor for yourself and others are vital components to managing the changes FTD can bring.

Feelings of grief and loss cannot be ignored while seeking care and support. Connecting with others who understand FTD and hearing about their experiences is extremely helpful. Learn more about support options here:

Support for Care Partners

Support for People with FTD

FTD Support groups offer an emotionally supportive environment in which to discuss care challenges and approaches. In some cases, medications may be considered for specific symptoms. Building a care team of professionals, friends and family can help support changes that can occur throughout the journey. Our AFTD HelpLine is also here to help. Contact us at 866-507-7222 or at info@theaftd.org.

Person-Centered Care

AFTD is here to guide you by offering the best information available to learn how to navigate common challenges in FTD as part of a person-centered plan that considers the person’s individual needs, history, and goals.

AFTD’s webinar series provides an introduction to person-centered care approaches for behavioral variant FTD, PPA and CBS/PSP.

Adapting and Maintaining Connection

It is important for people with FTD to stay engaged in enjoyable, meaningful and stimulating activities of their choosing as long as they are able and it is safe to do so. As FTD progresses, adjustments need to be made based on the person’s abilities and goals. Seek ways to adapt interests and hobbies to the person’s current needs and provide additional support and supervision, as needed. For example, 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 and connection.

Managing Symptoms

Symptoms in FTD are the result of changes in the brain that the person with FTD can't control or change. As symptoms develop over time, caregivers expectations need to adjust, while they seek ways to support the person through environmental changes that reduce the risk of worsening symptoms and negative outcomes AFTD’s FTD Behavior Tracker is a helpful tool to document behavioral changes and other symptoms of FTD and identify potential approaches to discuss with the person’s care team.

A person with FTD may act compulsively, aggressively, or otherwise out of character. Reasoning or confronting a person with FTD 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.

Below is a list of common symptoms and issues in FTD.  However, each person will present with symptoms at a varying rate, order and intensity, and not every person will present with every symptom on this list.  A chart of behavioral symptoms can be found here: Changes in Behavior Chart

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Care partner Tips for Coping with FTD

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:

  • 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.
  • Acknowledge and manage your feelings. FTD robs people of their self-control and ability to make rational decisions. Challenging behaviors are symptoms of the disease, and not deliberate actions or personal attacks. These struggles can leave you physically and emotionally stressed. AFTD has guidance for both persons diagnosed and FTD care partners.
  • FTD isn’t well known. Nor is it understood even within the health care community. 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.
  • Tend to your grieving process. AFTD’s Walking with Grief: Loss and the FTD Journey uses personal stories from care partners and persons diagnosed to describe those challenges, share practical information, and guide all affected by FTD as they navigate the grieving process. Learn more:
  • 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 care partner, you will have the most intimate knowledge of what does or does not work for your loved one, and any changes that occur in their 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. Learn more:

Find Help

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From support groups to printable checklists, we have helpful resources whether you are newly diagnosed, a caregiver or a family member.

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