Preparing to Talk to the Doctor

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Partners in FTD Care
Fall 2019

Effective pharmacological management of FTD depends on careful, ongoing observation of problematic behaviors and frank discussions between care partners and doctors. The participation of the person diagnosed (to the extent they are able) and their care partners is essential to developing and implementing any medication plan. At each medical visit, care partners should be prepared to discuss all medications their loved one takes (particularly if there has been a recent adjustment) and any notable side effects, as well as recent behavioral or symptomatic changes. Considering the following questions will help to prepare for appointments with the prescribing physician:

What behaviors trouble you the most? For each behavior:

  • Provide specific examples.
  • Rate its severity on a scale of 1-10 (1 indicates little bother, 10 a great deal of bother).
  • Specify its frequency (several times a day, daily, weekly, etc.).
  • Specify the behavior’s duration (10 minutes, 1 hour).
  • Indicate whether the behavior raises safety concerns for the individual, family members or others.
  • Identify possible triggers of the behavior, including the presence of other individuals, environmental factors (noisy location, unfamiliar place, visual trigger), and time of day.
  • Describe how you attempted to manage the behavior—what makes the behavior better or worse?

What can I expect if medications are used to manage behaviors associated with FTD?

  • Set realistic goals with the physician. Discuss which behavior(s) may be helped by medications, possible side effects and your expectations for treatment.
  • Understand how medications are managed. The physician will usually start with a low dose and wait a sufficient amount of time before increasing it. Some medications take several weeks before they take effect.
  • Recognize that symptoms and behaviors of FTD change over time. Continuing re-evaluation allows for adjustments in the type of medication or dosage. As the disease progresses, specific medications may no longer be needed.
  • Continue to use proven behavioral management approaches in conjunction with medications—consult past issues of AFTD’s Partners in FTD Care for more information on specific challenging behaviors.

What observations help determine the effectiveness of a specific medication?

  • Record changes in the severity and frequency of specific behaviors. While the targeted behavior may not stop, reduced severity and frequency indicate an effective medication has been prescribed. Conversely, increased behavioral problems could suggest the need for a different medication.
  • Note any variations in activities of daily living, such as changes in appetite, weight, sleep patterns, walking, falls, swallowing, and thinking abilities.
  • Present your observations in writing to the physician or office staff before being called into the clinic room if your loved one becomes upset during discussions of behaviors.

Communication and coordination across the care team is especially important in FTD due to variable understanding of the disease among providers. If medications are managed by a neuropsychiatrist or neurologist at a specialty clinic, that provider should (if possible) communicate with primary care physicians and other care providers who are treating the patient in the community. Providers and care partners should know the possible troubling side effects and when to follow up. If a person diagnosed needs more urgent care or hospitalization due to unmanageable behaviors, the medical care provider should call ahead to the emergency room or hospital to share this information with inpatient staff.

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