Frontotemporal Lobar Degeneration (FTLD)

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• Caregiving Challenges
• Strategies for Coping
• Safety
• Environment
• Support and Educational Resources
• FTLD Support Groups

Caregiving Challenges
For many families, obtaining a diagnosis of FTLD is a stressful and confusing process. At the same time, many families tell us that the diagnosis brings clarity to the cause of an array of unique symptoms. We hope this information will add to your insight and knowledge about FTLD. As with most conditions, the features and course of FTLD can be highly individual.

The nomenclature of Frontotemporal Lobar Degeneration (FTLD) can be confusing. Frontotemporal dementia (FTD) and Pick’s Disease may be used interchangeably. In general, FTLD is a progressive neurodegenerative condition that has three clinical subtypes.

1. In one type of FTLD, patients present with more behavioral disruptions, often demonstrating problems with interpersonal skills and social conduct, having difficulty organizing and completing tasks, and showing poor judgment.
2. A second type is called Progressive Non-fluent Aphasia (PNFA) and involves problems with the production of speech.
3. The third type is referred to as Semantic Dementia (SD) in which the patient has with trouble comprehending and understanding what words and objects mean.

Behavioral symptoms may emerge in both PNFA and SD as the disease progresses.

As you can see, FTLD is a term that has been used to describe a variety of specific disorders that differ greatly in their presenting symptoms. As a result, the needs that you provide as a caregiver will vary in order to address the specific nature and symptoms.

Caregivers often wonder about the rate of progression of the disorder. Research on FTLD has shown that the average time from diagnosis to death is 3.5 to 6 years, although there are many individual factors that can impact this. For example, people who develop motor neuron disease seem to progress more quickly.

FTD patients show symptoms that can affect behavior. Many times the patient’s behavior is rigid, bizarre, and socially inappropriate, which can cause frustration and embarrassment for the caregiver. Patients may show a decrease in their drive and motivation, called apathy. Some patients have an increase in appetite and carbohydrate cravings. Caregiver research has shown that behavioral symptoms are often more stressful for families than cognitive symptoms.

It is common for FTD patients to lack self-awareness and insight into their problems, and they may state confidently that there is nothing wrong with them.

Communication abilities can be affected in FTLD. The patient may have trouble expressing speech or have trouble with comprehension and the meaning of what is being said.

FTD patients may also show a loss of empathy, which is an aspect that is extremely difficult for some families to accept. For example, they may become self-centered and unable to recognize and respond to the emotions of another person. As a caregiver, it may help to learn that this is due to damage to the brain, structures like the amygdala and the frontal lobes, and not directed at them personally.

FTLD often causes profound alterations in relationships. Emotional blunting, apathy, inappropriate behaviors and difficulty with communication are just some of the variables that can impact the quality of a relationship. Because of the disease, the spouse/partner must take over decision-making that was once shared. Families are required to make many adaptations in response to the behavioral and personality changes associated with FTLD.

Strategies for Coping
In FTLD, the family plays an essential role in caregiving and the diagnostic process. Some families find it helpful to identify all the involved caregivers, pinpoint their strengths, and make decisions in how to share responsibilities. For example, some people are especially good with legal issues and can take the lead in completing any legal/financial decisions. In a sense, caring for the individual may require a team to divide the work. It is also important that patients, families, and clinicians work together to make decisions concerning treatment.

Early planning can decrease stress and produce successful choices. Planning for the future can help facilitate smooth transitions for both the patient and the family. Talking with other FTLD families and healthcare providers helps to understand what lies ahead and the decision-making that may be necessary. Early planning allows the patient to participate meaningfully in decision-making.

Relationships can be significantly disrupted due to the patient’s behavioral and personality changes. It can be helpful if the caregiver decreases expectations of emotional warmth and support from the patient and instead has these needs met elsewhere; hence the importance of a nurturing and attentive support system for the caregiver. Some caregivers find benefit in keeping a personal journal about their experiences and feelings. Some find it useful to meet regularly with a counselor or therapist or a Support Group. Some of our families have participated in a “Buddy System” in which they communicate with another family caregiver (by phone, in person or on-line) in order to share problems and solutions. It is very typical for family caregivers to ignore their own physical and emotional health. It is vital that family caregivers take the time for regular medical checkups and to engage in pleasurable activities.

Behavioral symptoms are among the most stressful issues that families have to deal with in dementia. It can be helpful to view behavior as a form of communication; for instance, agitation may mean the patient is becoming overwhelmed and frustrated. It is also helpful to think about whether the behavior is a problem or not. Is it annoying (for example, playing solitaire on the computer for hours at a time) or unsafe (for example, physical aggression towards you)? This will help you to decide if you can just try to ignore the behavior or need to take steps to try to stop it. Is there a trigger that appears to start the behavior? For some people an important tool in FTLD is a behavior log. Making note of the type and timing of behavioral changes can be helpful in identifying patterns and causes of behavior symptoms. In managing or modifying the behavioral symptoms look first at the person’s environment. Can the behavior be accommodated and accepted? Will alteration of some aspect of the environment help in diminishing the problematic behavior? A next step is to try and diminish the problematic behavior. For example, rewarding positive behaviors and ignoring the negative ones may be helpful. Many patients with FTLD have preserved memory function; this can be a strength in behavior modification. Medications should be evaluated carefully when behavioral symptoms exist. Some medications may make the symptoms worse, while others may help diminish them. It may be reassuring to know that many behavioral symptoms diminish over time.

Modify social and interpersonal events to minimize any embarrassment you might experience. Patients with FTLD may make socially inappropriate comments to others, may lose awareness of the “typical” social boundaries, and/or may exhibit rigid, bizarre habits. Going out in public can be overwhelming and frustrating for the family. There are tips we have learned from our families. When dining in a restaurant, position the patient between family and friends to limit the amount of contact with the public. Some families prefer to go to restaurants where the patient is known and they can be seated at a table which limits patient exposure to others. Some of our families carry a business-type card with a short phrase “My family member suffers from an Alzheimer’s-like brain disorder” which can be handed out discreetly to explain any unusual behaviors or comments. We provide many of our families with a physician letter that briefly explains the medical causes for the behavioral symptoms or communication difficulties which can be shown if needed to shop owners or others.

Successful communication is vital. Be clear and concise in your manner of communicating. Comprehension, the ability to follow and understand conversation, may become progressively impaired. Be aware of the amount of information you are trying to communicate and whether the patient is having trouble understanding what is being said. You may need to break information into more discreet phrases and be specific. Physical gestures and cues can be helpful in getting the message across. For instance, pointing to the door when it is time to leave the room can help with comprehension. Speaking positively, rather than negatively may be easier for both you and the patient. For example, rather than saying “don’t do that” say “please do this”. Patients with the language and speech subtypes (PNFA and SD) may benefit from working with a Speech Therapist. The therapist can provide exercises and adaptive techniques. If taking phone messages at home is a problem for the patient, some families instruct others to call them on a personal cell phone. If the patient has problems or confusion with mail delivery at home, some families elect to use a PO Box.

Frustration is a normal emotional response when caring for a patient with FTLD. However, feelings of extreme frustration or anger will have a negative effect on your relationship and may have upsetting consequences. Monitor your emotions and behaviors and make sure that you are providing yourself with emotional, physical and mental well being. Many well-intentioned family and friends would like to help, but may wait to be asked. Do not hesitate to ask for help. It is OK to ask others to make a commitment to help, for instance, prepare a weekly meal, or take the patient to an exercise class. Also consider hiring a caregiver for respite care.

Safety
Safety is a critical issue due to problems associated with communication, impulsivity, disinhibited behavior, and lack of personal awareness. For example, supervision may be needed when performing tasks such as cooking, using tools, and smoking. While ensuring safety, it is important to let the individual remain as independent as possible in order to foster self-esteem. Judgment and decision-making skills often change dramatically in patients with FTLD. These changes may impact driving, childcare and other critical functions.

Safety can be an issue for patients with motor control problems, resulting in impaired balance and falling. Physical therapy can help with strengthening and improving balance. An Occupational therapist can complete a Home Safety Evaluation which provides guidelines for adapting the home environment to meet the safety needs of the patient.

For more detailed information on safety:

• The Department of Motor Vehicles
• The Alzheimer’s Store provides useful safety products that may be useful with FTLD patients.

Environment
A well planned and safe environment is essential when caring for an individual with dementia. In the home, one of the first goals is to simply create a calm and reassuring environment that reduces stress for the patient, and in turn, for the caregiver. It is important to create a safe home environment by realistically evaluating whether there are hazards present. Adaptations to the environment may be necessary.

In the community, it may be reassuring to notify local law enforcement of potential problems involving agitation, wandering, or poor judgment. Including neighbors and shop owners who have contact with the patient may be helpful as well.

For more detailed information:

• American Association for Retired Persons (AARP)
• Abledata

Support and Educational Resources
As with any type of dementia, the role of the family caregiver is extremely important. FTLD is a progressive disorder and affects the patient’s ability to function independently. Educating oneself about the symptoms of the disorder and taking advantage of available resources are good ways to know what to expect and to cope with caregiving demands. The caregiver needs to be sure that they are also caring for themselves physically, mentally, and emotionally.

Visit our Resources on FTD section.

FTLD Support Groups
The UCSF Memory and Aging Center holds a free monthly FTD Support Group for family members and caregivers. This group is free and meets monthly.

Online information and support:

• Pick’s Disease Support Group
• The Association for Frontotemporal Dementias
• Family Caregiver Alliance

Book Reference
Radin L, Radin G. What if it’s Not Alzheimer’s? Prometheus Books, New York, 2003.

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