Working with the Doctor on Frontotemporal Dementia

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​​iStock_000011047279XSmall-300x199.jpgCaregivers who are handling the challenges associated with frontotemporal dementia may feel a little overwhelmed at times, especially when the diagnosis is new. There's so much that a person needs to learn, and the early days after a diagnosis can be especially difficult.

Frontotemporal dementia is marked by a progressive decline in behavior and/or language and can be a sensitive issue for both the patient and the caregivers. Learning to work in the most productive way possible with the doctor is important.

With that in mind, here are a few tips that may make things a little easier.

Determine in advance how the loved one feels about having a caregiver in attendance during a doctor visit. It is better if the caregiver is able to be there to discuss matters, offer clarification, or provide a different point of view. If the patient is comfortable with this, make sure that the patient conveys this information to the doctor. If the patient concedes that the caregiver may be in the room but doesn't want the caregiver to speak, the caregiver can let the doctor know that s/he would like to speak separately when possible to provide additional information.

Seek cooperation. A person with frontotemporal dementia is likely to need to see a range of specialists, such as a neurologist, speech pathologist, occupational therapist, etc. The caregiver may need to work with the primary care doctor to ensure that an appropriate health care team is put in place – preferably one that has some experience in frontotemporal dementia already. The caregiver may also need to work with the primary care doctor to obtain referrals to specialists, depending upon the restraints of the individual's insurance policy.

Report changes, but recognize that they may not be related to the dementia. Doctors need to know what is different from one visit to the next, so it's important for a caregiver to keep a daily diary of observations that can be useful in this respect. However, the caregiver shouldn't assume that noted changes ar​​e due to frontotemporal dementia; that's for the doctor to determine. There may be other factors, such as a change in routine or the state of a patient's general health, that account for alterations in behavior, mood, ability, etc.

Be knowledgeable about medications. Many symptoms of the disease are treated with drugs, so the caregiver needs to know what each drug is for, what it is meant to address, what side effects are likely, etc. Keep a record in the diary of any observations that may be related to medication.
Give more information. It's best to let the doctor have too much information rather than too little. If a caregiver is hesitating about whether or not to share something, s/he should share it. The doctor will determine if it is relevant.


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