Caring for Persons With Frontotemporal Dementia (FTD)

Frontotemporal dementia (FTD) is an umbrella diagnosis with many subtypes. According to the Diagnostic and Statistical Manual of Mental Disorders, fourth edition (DSM-IV), diagnosis is mainly clinical and based on identified changes in behaviors and language, and includes the use of image exams and neuropsychological tests. The frontal and temporal lobes of the brain are affected, and the symptoms relate to the lobe most affected.

Symptoms include:

• Changes in personality
• Changes in behavior
• Changes in a person’s ability to use or understand language, and/or
• Changes in motor skills.

In addition to the above clinical symptoms, the individual may also have problems with executive functions such as planning, organizing, sequencing, and judgment. FTD often strikes people in the prime of their lives, when they’re working and raising families. This is a progressive disease in which the symptoms tend to worsen each year, eventually requiring 24-hour assistance. Persons can live with frontotemporal disorders for two to 10 years (six to eight years average).

FTD often goes undiagnosed or misdiagnosed for years. In the early stages, people have one type of symptom (language or behavior deficits), which results in a subtype diagnosis. As the disease progresses, other types of symptoms appear as more parts of the brain are affected. Currently there is no cure or prevention; however, medications for depression and/or cognitive enhancement may be used.

Subtypes include (but are not limited to):

• Primary Progressive Aphasia (PPA)— Language deficits. This is the loss of language abilities beginning with the use of nouns and verbs in both verbal and written form. Communication becomes increasingly difficult, followed by the inability to comprehend the written or spoken word.


• Pick’s Disease—Behavior changes. Symptoms include progressive behavior/personality decline; inappropriate/impulsive behaviors; emotional flatness or excessive emotions.


• Corticobasal syndrome (CBS)—Motor skill and movement problems. Symptoms include muscle rigidity; fine motor difficulties; language or spatial orientation problems.

The Challenge of FTD for the Person

Many challenges exist for the individual who is living with FTD. Because FTD often strikes at a younger age, the person may still be in the midst of her most significant earning potential period of life. FTD can affect the ability to perform job responsibilities, and therefore hinder a person’s ability to earn a living and accumulate for retirement.

With PPA, for example:

• The person experiences frequent frustration and loneliness related to the decline in his ability to communicate through words or writing, and a decline in understanding the written or spoken word. He knows what he wants to communicate and can see the misunderstanding in others. Gestures and pantomime become more difficult and ineffective in communication.


• Memory impairment is not an initial symptom, and yet those with PPA/FTD who are in the earlier stages may be perceived by others as having Alzheimer’s disease. This can occur because their communication deficits may create a perception of them not knowing how to do something or not remembering things.


• As the ability to comprehend is affected, the person may experience increased frustration and emotional pain related to the responses of others.

The Challenge of FTD for Caregivers

Families, friends, and significant others will face many challenges as the person you know and love changes. Family relationships, loss of work, declining health, financial decisions, and long-term care are only some of the issues to be dealt with.

• With behavior changes, family members will need to deal with embarrassing and often alienating moments with friends and within the community.


• A caregiver may suffer the gradual loss of his parent.


• Basic work skills (employment or at home) such as organizing, planning, and following directions will become almost impossible for the person with FTD. Thus, such tasks will need to be added to the tasks of the caregiver.


• Durable power of attorney for health care, finances, and legal matters needs to be addressed as soon as diagnosis is confirmed.


• Personal lifestyle changes will be ongoing. The stress of providing care for someone with FTD can be incredibly difficult both physically and emotionally.

Compassionate, Therapeutic Care and Strategies to Enhance the Function and Quality of Life of Those Living With FTD and Their Loved Ones

Care providers must first stay healthy themselves in order to create a compassionate and therapeutic environment for loved ones with FTD.

• It is essential to have regular help from family or friends for a few hours, a day, or overnight. This will reduce stress levels and renew your patience and positive energy.


• Join a support group online or in your community. Being with others who have similar experiences helps with strategies and provides strength for every step of the journey.


• Spend time (or journal) remembering who the person with FTD was and still is. The person you love remains. Be angry at the disease, not the person.


• Consult with and receive services from professionals who can help. For example, a speech language pathologist may be able to teach adaptations to enhance your loved one’s communication abilities. An occupational therapist may teach you or your loved one how to redirect behaviors and how to modify daily activities for the person to maintain her highest level of independent function possible. It’s important to encourage and facilitate the person with FTD to participate in every task she used to perform. Engagement in even small portions of a familiar activity/task will help maintain skill, provide dignity and happiness, and help slow the progression of the disease.


• Limit instructions to one-step directions. For example, say, “Please put the forks on the table,” not “Please set the table.”

Understanding FTD and learning more about each subtype of the disease assists in separating the disease from the person and enables care providers to enhance and maintain quality of life every step along the way.

The Association for Frontotemporal Degeneration is a valuable resource for additional information about FTD.

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