The first step to treatment of any illness is getting the correct diagnosis. While there are currently no treatments available to stop or reverse frontotemporal dementia, getting the right diagnosis prevents you from receiving incorrect or potentially harmful medications and also provides an opportunity to join a clinical trial where you may be eligible for new treatments.
As part of the initial evaluation, your doctor should carefully review all your medications - prescription, non-prescription (over-the-counter), alternative, nutritional supplements and recreational drugs such as alcohol, caffeine, tobacco, etc. Sometimes a bothersome symptom can be explained by a drug side effect or drug-drug or drug-disease interaction.
Once you have a diagnosis, as a patient or caregiver you should ask your doctor for resources where you can learn more about the disease and find others who are going through a similar experience. Frontotemporal dementia, particularly the behavioral type, can create safety issues in the home and around driving. Patients might leave pots on the stove, wander outside while inappropriately dressed, get lost, have aggressive outbursts or exhibit other potentially risky behaviors. You may need to remove dangerous items from the home and take away driving privileges.
Often times, adjusting expectations and making changes to the environment can help improve the patient's behaviors. Learning to roll with disruptive but non-dangerous behavior takes patience, but sometimes saving your energy for more serious matters is the best strategy. Review our Practical Tips [1] section for ideas to help manage symptoms and daily routines. Support groups are another great way to learn non-medical ways to manage the disease - other caregivers often have great ideas.
End-of-life planning [2] should begin as soon as there is a diagnosis so that everyone can participate. The documents can always be updated or changed at a later date, but it helps everyone to begin the discussions early and create at least simplified legal documents.
An exercise program that combines both strength training and aerobics is important for maintaining cognitive health. Cardiovascular exercise 2-4 days/week for approximately 30 minutes each time is beneficial. A regular walk is one form of cardiovascular exercise and does not require membership to a gym. A common saying at the Memory Aging Center is, “What is good for the heart is good for the brain.” Individuals should consult with their physician before beginning any exercise program. Regular exercise can help you and your loved one maintain your ability to function for a longer time. Don't only think about the patient getting exercise, consider a formal regimen for yourself.
Getting enough sleep also helps maintain optimal cognitive performance.
Medications for behavioral symptoms should be started at a low dose and then increased slowly based on the patient’s response and the presence of side effects. It is only fair to note that very few clinical studies exist examining the benefits of the following medications, and the following information is base primarily on clinical experience.
While originally created to treat depression, certain antidepressants are effective in treating anxiety disorders, preventing panic attacks and obsessive compulsive behavior. One group of antidepressants called selective serotonin reuptake inhibitors (SSRIs) may be useful in reducing the aggressive impulses, poor impulse control and carbohydrate craving associated with early Pick’s/FTD. People with FTD usually do not experience many side effects with SSRIs, and they are generally considered the best available medications for controlling problematic behaviors.
Examples of SSRIs include:
Other antidepressants (not SSRIs) that may be useful:
Antipsychotic medications block the effects of dopamine, a chemical messenger that can increase hallucinations, delusions (false beliefs) and can alter rational thought. Low doses of these medications can help manage aggressive, irrational and compulsive behaviors that may develop with frontotemporal dementia. The potential benefit of antipsychotics must be weighed against potential risks including weight gain, slowing of movement and thinking, accelerating heart disease and, in rare instances, death. Typical antipsychotics are associated with muscle problems and should be avoided, since patients with FTD are likely to show muscle stiffness and trembling.
Examples of atypical antipsychotic medications include:
Other classes of drugs that might be useful, but have not been studied in Pick's/FTD are anti-anxiety drugs and anti-seizure medications used as “mood stabilizers.”
People with either of the language variants may benefit from speech therapy to help them adjust to their language difficulties and learn alternate ways to communicate. Maintaining adequate communication can decrease frustration, a common problem in FTD. Unlike many people who develop aphasia from head injury or stroke, people with FTD will not improve with time, but a therapist may be helpful in maximizing existing abilities and exploring other ways to communicate. Non-verbal techniques for communicating, such as gesturing, pointing to pictures, etc., may help people with SD or PNFA express themselves. Aphasia identification cards [3] explaining that the person has a language problem can aid in communicating the person's condition to others. Many speech pathologists and occupational therapists have their own practices, while others are available through local hospitals and medical centers. Ask your doctor for a referral.
Memantine (Namenda®), a NMDA-receptor antagonist, is approved for treating Alzheimer's. Preliminary evidence suggests it may provide some benefit for people with Pick's/FTD as well. The Memory and Aging Center will soon complete a research trial on memantine [4].
Cholinesterase inhibitors, such as donepezil (Aricept®), rivastigmine (Exelon®) and galantamine (Razadyne®), are prescribed for people with Alzheimer's disease. They seem to work by helping people to improve attention and working memory by increasing the amount of acetylcholine, a chemical in the brain. Unfortunately most people with frontotemporal dementia do not benefit from these medications and may even become more agitated when they are tried. Generally, cholinesterase inhibitors are not recommended for patients diagnosed with FTD.
Benzodiazepines, used to treat anxiety, insomnia, agitation, seizures and muscle spasms, have been linked to increased behavioral problems and impairment in both memory and psychomotor skills.
Common benzodiazepines:
Typical antipsychotics such as haloperidol (Haldol®), fluphenazine (Prolixin®) and chlorpromazine (Thorazine®) are associated with muscle problems and should be avoided, since patients with FTD are likely to show muscle stiffness and trembling from the disease.
If you are concerned about any of the medications you are taking, ask your doctor or pharmacist to review them for you. It is always a good idea to take all your medications with you to each doctor's appointment so the types and dosages can be reviewed.
Links:
[1] http://memory.ucsf.edu/ftd/ftd/livingwithftd/practicaltips
[2] http://memory.ucsf.edu/ftd/ftd/livingwithftd/preparingend
[3] http://memory.ucsf.edu/ftd/ftd/files/pdf/ftd/AphasiaCards.doc
[4] http://memory.ucsf.edu/ftd/ftd/research/clinical/memantine/multiple
[5] http://memory.ucsf.edu/ftd/ftd/node/118
[6] http://memory.ucsf.edu/ftd/ftd/node/68
[7] http://memory.ucsf.edu/ftd/ftd/node/582
[8] http://memory.ucsf.edu/ftd/ftd/node/258
[9] http://memory.ucsf.edu/ftd/ftd/node/24
[10] http://memory.ucsf.edu/ftd/ftd/node/227