top of page

Help and Support

The early age of onset of many Frontotemporal degeneration (FTD) spectrum disorders and the changes in behavior and language that can accompany them can make living with FTD a challenge for both caregivers and patients.  Patients with FTD can be otherwise young and physically healthy, making behavioral management even harder.  Although most people are sensitive to the memory struggles that accompany a diagnosis of Alzheimer’s disease, the communication difficulties and unusual behaviors found in many forms of FTD can leave caregivers and patients feeling socially isolated and misunderstood.  In this section, we offer suggestions for symptom management as well as resources that will improve coping.

    DRIVING IS A COMPLEX, HIGHLY DEMANDING ACTIVITY Driving involves performing multiple activities at the same time. We must pay attention to other traffic as well as pedestrians, and instantaneous decision-making and judgment are needed to avoid potential dangers and threats. Often it is necessary to infer the intentions of other drivers and pedestrians in order to anticipate and avoid a potentially dangerous situation. Decision-making and judgment involves more than simply braking, and multiple factors must be weighed and judged very quickly in order to make a rapid response. Traffic signals and signs must be detected and interpreted as well. At the same time, we have to steer the car in a spatially appropriate manner to minimize the risk of hitting objects or injuring other drivers and pedestrians. Steering must be coordinated with speed to optimize safe driving. FRONTOTEMPORAL DEGENERATION IS A SIGNIFICANT RISK FACTOR FOR DANGEROUS DRIVING Receiving a diagnosis of Frontotemporal degeneration (FTD) should not entail an immediate end to driving, but the progressive nature of the condition will render all patients unable to drive eventually. In particular, the changes in behavior and impairment in judgment characteristic of FTD mean that individuals often pose a significant risk behind the wheel. Medical studies of simulated driving indicate that individuals with FTD have significant difficulty with behavior and rapid judgment that place them at very high risk for injuring or killing themselves and others. The surest way to assess a person’s ability to drive safely is through a driving evaluation by a professional. During a comprehensive driving evaluation, a neuropsychological assessment evaluates specific aspects of cognition and behavior that contribute to safe driving such as dual-tasking and executive functioning, visuospatial processing, and information processing speed. Knowledge of driving rules and recognition of driving signs are assessed. Often a driving simulator resembling an arcade game is used to assess some of the simpler aspects of driving. Finally, an on-road driving is performed. TECHNIQUES FOR REDUCING AND ELIMINATING DRIVING For many people driving signifies independence, so it can be difficult to convince a loved one with FTD to give up the car keys. This is why it is important to begin discussing the prospect of gradually limiting and finally ceasing driving early on in the course of the condition rather than later. This approach will provide more time to implement driving plans and reduce distress later on. Effort should be made to actively include your relative or loved one in this discussion early in the course of FTD, as this will increase the likelihood of adherence to the driving guidelines that will become necessary and give them a chance to voice their own concerns. Caregivers should take opportunities to observe and document changes they notice in the ability to drive and to share these observations in a non-judgmental manner with the patient, other family members or healthcare providers. The most effective way to limit or stop an individual with FTD from driving is to do so gradually during the early stage of the disease. Families, friends or other caregivers can work to reduce patient’s need to drive by providing rides. Friends or family members called upon to assist with rides will be most helpful if the appointments are made at the driver’s convenience, but this can be quite inconvenient to assistants. An alternative is to schedule regular assistance at times of the day that are traditionally most helpful for performing activities such as shopping. Additionally, caregivers can arrange for alternative modes of transportation. Public transportation is often ideal for those with mild dementia, but may be too complicated for those in later stages of dementia. Community transit services are available in many communities, and these can be scheduled for convenient times. In using taxis, it is helpful if the driver has explicit instructions and if the patient has someone to meet at the beginning and end of each ride.
    Caring for a person living with Frontotemporal degeneration (FTD) can be very challenging—individuals with FTD can experience language and processing difficulties as well as disturbing personality and behavior changes. Non-medical interventions can be an important strategy in helping an individual with FTD maintain independence for as long as possible and manage difficult social situations. Non-medical interventions refer to an approach of managing behaviors that encourages manipulation and control of the environment rather than the administration of medications. Non-medical interventions can be used alone or in conjunction with medical therapies for symptom management. Non- pharmacological approaches are often the first line of therapy in mild stages of dementia.
    Currently there are no curative treatments available for Frontotemporal degeneration (FTD). The current goal of therapy in treatment of FTD is symptomatic relief. While the medicines listed below may be useful in some individuals, other individuals may worsen with a medication. The medicine may also have an adverse effect if administered at an inappropriate dosage or if it interacts with another medication that is already being taken. The utility of a medication for an individual patient should be reviewed with a physician who knows the individual well. All medications have side effects and possible allergic responses that should be discussed with the prescribing physician. These medications represent only a sampling of available medication regimens, and the inclusion of a medication on this list does not represent an endorsement of its use. ANTIDEPRESSANTS: There are many medications on the market used to treat depression. Depression, anxiety, and obsessive behavior are common in FTD. These symptoms can be treated in some individuals with a specific class of antidepressants called Selective Serotonin Reuptake Inhibitors (SSRI). These drugs work to increase the amount of serotonin in the brain. Low levels of serotonin are thought to contribute to anxiety and depression. Another antidepressant, trazadone, is one of the few medications shown to be beneficial in a small, double blinded, placebo controlled trial in FTD. NEUROLEPTICS: Also known as antipsychotics, these medications can be effective in treating some symptoms of FTD. Agitation and psychosis are symptoms most often treated with neuroleptic drugs. Newer generation antipsychotic drugs, such as quetiapine (Seroquel) and olanzapine (Zyprexa) are typically well tolerated. Some older antipsychotic agents, while effective, can have significant side effects for motor functioning. ANTICONVULSANTS: Anticonvulsant medications can serve as "mood stabilizers." Some of these medications may be used alone or in conjunction with an antipsychotic medication to help manage agitation. Divalproex sodium (Depakote) and carbamazepine (Tegretol) may be helpful in managing some of the extreme behavior symptoms when a neuroleptic medication alone is not effective. MEDROXYPROGESTRONE: Sexual disinhibition can be a symptom that is particularly distressing. Medroxyprogestrone is a derivative of the hormone progesterone. This may be useful for calming sexual urges that can be seen in some individuals with FTD. DOPAMINERGIC AGENTS: Some reports describe improved speech fluency and improved initiation with the use of medications that supplement the dopamine brain neurotransmitter system. These medications are borrowed from Parkinson's disease. These medications, in small doses, also may help reduce some of the involuntary movements seen in some individuals with FTD. There are well-known side effects associated with these medications that can limit their usefulness. CHOLINESTERASE INHIBITORS: These drugs have been approved by the FDA to treat mild to moderate Alzheimer’s Disease. Cholinesterase Inhibitors are designed to increase the level of acetylcholine in the brain. Acetylcholine is a neurotransmitter that helps to carry messages between brain cells. It is important for memory, judgment, and attention. This class of medications may help with naming in primary progressive aphasia, but can worsen the social disorder of patients with FTD. OTHER: Namenda (Memantine) is approved for use with vascular forms of dementia and moderate to severe Alzheimer's disease. While clinical reports suggest that this medication may be helpful in some FTD patients, a recent double-blind placebo-controlled trial failed to demonstrate any efficacy for this medication.
    Power of Attorney Frontotemporal degenerative (FTD) disorders can affect an individual’s ability to communicate verbally, limit thought processes and impair judgment. As FTD disorders progress, it will become more challenging for the affected individual to make sound decisions for his/herself regarding personal health care, financial and legal matters. It is important that discussions about who will make decisions on behalf of an individual with FTD. Ideally these discussions should begin early in the course of the condition, when a loved one with FTD is most fully able to participate and determine who is in the best position to look after personal interests when he/she is no longer able to do so. What is Power of Attorney? Power of Attorney (POA) is a written authorization granting another person the power to act on behalf of an individual in private affairs, business or other legal matters. A power of attorney specifically defines which aspects of the individual’s life will be managed by another. The individual authorizing another to act on his/her behalf is called the principal or grantor of the POA. The individual authorized to act on the principal’s behalf is referred to as the agent or attorney. How do I choose a Power of Attorney? An individual initiating the POA must have capacity for such decisions at the time the POA is written. Capacity is defined in most states as the ability of an individual to understand the nature and consequences of granting power of attorney to another. Some states and jurisdictions are able to grant a Springing Power of Attorney that only becomes effective when a specified event occurs, such as the principal becoming incapacitated. Under common law, a traditional power of attorney becomes ineffective if the principal dies or becomes incapacited. This can be avoided if the principal specifies that the POA is to remain valid even in the event of their incapacity. This type of durable power of attorney becomes effective when it is signed by both parties and stays in effect throughout the period the principal is unable to make decisions for him/herself due to physical or mental illness. The principal granting the power of attorney may revoke it at any time as long as they are still determined to have capacity. What is a Health Care Power of Attorney or Health Care Proxy? In some areas of the country, a durable power of attorney can also serve as a health care power of attorney or health care proxy. A health care POA or health care proxy designates the person who can make health care decisions for the principal if they are unable to communicate their wishes. A health care proxy is able to make decisions on the principal’s behalf regarding routine as well as end-of-life care. A loved one may chose a single person to serve as durable power of attorney for all decisions or may opt to designate one individual to handle health care decisions and a different individual to handle financial and legal decisions. Guardianship What is Guardianship? If a loved one does not designate a power of attorney, it may become necessary to ask the court to appoint a guardian to manage their affairs. Guardians are given the legal authority to care for the personal and property interests of another person, who is referred to as a ward. The following criteria generally must be met for a court to appoint a guardian: The individual is not able to make decisions regarding his/her own affairs The individual has not executed, or does not have the mental capacity to currently execute, a power of attorney Serious harm may come to the person if a guardian is not appointed Types of Guardianship Courts can grant guardianship of the person, guardianship of the person’s estate or property or combined guardianship for both. A guardian who has been given responsibility by the court for both the personal well-being and financial interests of the ward is known as a general guardian. The court can choose to appoint one individual as guardian of the person and a different individual as the guardian of the person’s estate. How do I obtain Guardianship? If you believe that your loved one needs a guardian to prevent serious harm to their person or their estate, you will need to hire an experienced attorney and petition the court for guardianship. Guardianship takes significant control away from an individual and in the court’s eyes should only be pursued when other strategies have been seriously considered. Legally Authorized Representative What is a Legally Authorized Representative? The U.S. Department of Health and Human Services defines a legally authorized representative as “any individual person, judicial body or other body of individuals who are legally authorized under state and federal law to consent to research participation on behalf of a designated person.” A legally authorized representative can be appointed when an adult is unable to make or communicate an informed decision due to mental or physical impairment. Who is Eligible to serve as a Legally Authorized Representative? In the state of Pennsylvania, the following individuals may be considered legally authorized representatives of a potential research subject and capable of providing surrogate consent: A court-appointed guardian authorized in a current court order to consent to the subject's participation in the research. A health care agent appointed by the subject in a power of attorney. A "health care representative" when the individual cannot speak for his/herself and where there has been no guardian appointed by the court and no health care power of attorney designated. (PA Act 169). Any of the following relatives, in descending order of priority, who is reasonably available, may also act as the subject’s health care representative: The spouse (unless an action for divorce is pending) Adult children (18 years of age or older) A parent. An adult sibling An adult grandchild An adult who has knowledge of the potential research subject’s preferences and values, including but not limited to religious and moral beliefs, who is able to assess how the patient would make decisions Getting Started It is always best if you and your loved one consult with a lawyer who has experience in drafting powers of attorney. Resources for finding a lawyer in your area: National Academy of Elder Law Attorneys, Inc. Pennsylvania Bar Association
    SUPPORT Caring for a person who has been diagnosed with Frontotemporal degeneration (FTD) can be physically exhausting as well as emotionally stressful because of the extreme personality changes and language difficulties that can accompany these disorders. Building a support system is necessary for caregivers to enhance their coping strategies. Talking to other caregivers can be helpful in terms of sharing experiences, identifying resources, and problem solving. Having the opportunity to speak with others living with a similar experience can also be therapeutic. Caregiver support groups are a good source of education about FTD spectrum disorders and vital social connection. There are several options for support groups including face-to-face, online and telephone support groups. For a list of support groups visit the Association for Frontotemporal Degeneration (AFTD's) support page. Caring for a loved one with FTD may be different than caring for one with Alzheimer’s Disease or other dementias. While memory loss is the primary feature of Alzeihmer’s Disease, caregivers of those with FTD often have to cope with unpredictable behavior, lack of empathy and caring from their loved one, lack of available resources and may have to educate the friends and family who are unfamiliar with FTD. Depression, anxiety, social isolation, fatigue, irritability and grief are signs of caregiver stress. It is important to pay attention to these feelings and seek necessary treatment. Calling on the help of others can be difficult for caregivers. Often caregivers are hesitant to ask for help. Getting support from others will be invaluable. Create a circle of support or a list of friends, family and colleagues who you can call on for help. Start by asking small requests. Reaching out will be difficult at first, but the more you ask, the easier it will become. RESPITE Caring for someone who has Frontotemporal degeneration can be physically and emotionally demanding. Respite care is the short-term provision of care that is designed to give relief to caregivers. This can be done in the home, daycare facility or residential facility setting. Respite care may be done by volunteers or paid health aides and other trained staff. Many caregivers use informal respite such as help from family or friends. Others seek out professional respite services offered by nursing organizations such as short term stays in nursing homes or assisted living facilities.
bottom of page