What Happens Next?
Throughout the site, terms in bold print are defined in the Glossary.
FTD is known as a “progressive disease,” which means it gets worse over time. It is natural to want to know what changes to expect next, but with FTD the changes are different for every person. There is no way to predict which symptoms a person will develop, when, or how fast the disease will progress. Some people may live with FTD as many as 20 years, others as few as 2 years. New symptoms will develop as the disease spreads to other areas of the brain, which means even the most challenging behaviors will change (which can be a good thing). Unfortunately it also means no one can say exactly where the disease will spread or exactly what new challenges this will cause. It is very common to feel frustrated with the doctors who are supposed to have all the answers but can only offer generalizations about what MIGHT happen next.
Although it’s hard to predict in what ways a person will be affected by FTD from week to week or month to month, doctors generally describe FTD as disease that progresses over time through three stages: early, middle, and late.
People with FTD don’t wake up one day and suddenly feel and act totally differently. The changes happen gradually. As the disease spreads, it slowly changes how they talk or walk or the things they say and do.
Typically, family and close friends will notice the changes first. People outside the family may not notice symptoms for a long time, and often times these outside individuals are surprised to learn the person has a disease at all.
In the early stage, a person with FTD is usually still able to work, drive and take care of things at home. For example, someone with primary progressive aphasia may know what they want to say, but speak more slowly and have trouble getting words out. Another person with the disease may have trouble finding words and “talk around” words they don’t know. In the early stage of behavioral variant FTD, changes in a person’s actions and judgment can be very disruptive to their daily activities and relationships. The person does not feel sick and may not know there is anything wrong with them. They may even blame others for why things are different and insist that it is not their fault.
Usually, it is during the early stage when a well parent takes steps to figure out what is happening to the parent who is ill. They go to various doctors for medical and psychological testing and try to find explanations for the changes seen at home. This can be a particularly difficult and confusing time. Before understanding that a loved one has FTD, it is common for family members to think their loved one is just being difficult or uncaring, which can be upsetting. Once there is a diagnosis, though, everyone can work to become more patient and understanding – but it takes time to make this shift and it doesn’t mean the frustration and anger will totally go away.
As FTD progresses it causes atrophy (loss of brain tissue) to additional areas of the brain. Generally, the early symptoms in language or behavior get worse and new symptoms appear.
In the middle stage of PPA, it is common for people to have more difficulty speaking, writing and understanding language. They may not talk at all and many people also develop some behavior symptoms. In the middle stage people with bvFTD behave much more strangely. Most often they cannot do their jobs anymore or take care of their family or home. It is common for them to take part in far fewer activities, watch television for long periods of time or sit and not do much at all.
They may do the same simple activity over and over (e.g. sorting coins or folding towels) or develop complex repetitive routines (e.g. finish breakfast, put on hat and coat and walk the same 3 mile route – regardless of the weather). They may eat a lot of the same foods every day or need reminders to take showers or change their clothes. They may seem more moody or nervous. They may also become unsteady on their feet or clumsy with their hands.
At this point it may be unsafe for the person to go out on their own or be home alone because they start to lose the ability to make good decisions. They may no longer notice how you feel or seem to care. Some people may develop verbally or physically aggressive behaviors which are especially important to address.
These odd behaviors and changes are caused by the disease. Even though you know it is the progression of FTD that causes someone to act and do things differently, it can still be upsetting, embarrassing and painful for you, family and friends to watch as your loved one changes.
FTD will continue to progress and damage the brain. As this happens the disease will eventually enter the late stage and symptoms will be severe. In the late stage even really simple things become hard or impossible. People may need assistance just to eat with a fork and knife, or they may require food that is soft and easy to swallow. They may forget how to use the bathroom. They may no longer be able to walk on their own and need a wheelchair. At this stage it isn’t unusual for the person to forget important things and/or not recognize family members or close friends.
At this stage, the person may act more like a child and will need someone to take care of them. It may become too difficult to take care of them at home and your family may decide the person would be safer and more comfortable living in an assisted living facility where professional caregivers can take care of them.
There are no treatments that will slow or stop the progression of FTD once it has started. However, the doctor may be able to prescribe medication to reduce some symptoms and you can learn ways to make changes at home and in how you interact with the person that help as well. The disease makes it impossible for someone with FTD to change their behavior, but you can adjust and learn new ways to cope. This is a very hard time for you and your family. It is important for you to continue to do things for yourself and in your life that are positive.
FTD changes the way a person acts and thinks but it does not change their love for you. They may unable to share with you how they feel but you can be sure of two things: 1) It’s not your fault, and 2) They cannot control how they are changing.
It is common for you to feel angry, sad, confused or scared, but here are some ways to take care of yourself:
- Express and release your feelings by talking with someone you trust, writing in a journal, exercising, playing music or sports or doing things you enjoy.
- Make time for friends and activities that make you happy. Get involved in school clubs and sports or other activities that interest you.
- Don’t beat yourself up when you become impatient with your loved one who has FTD. It’s natural for this situation to wear you down, especially because the person with FTD may still look and even sometimes act normal. It is a very difficult disease to understand – even for experts. So allow yourself to feel frustrated, angry and confused.
- Connect with other teens who also have a loved one with FTD or another serious illness. It can be tremendously helpful to talk with someone who understands what you are going through.
For more information on how to cope with the changes and stress, visit Changes & Coping.