Quality health care depends on finding the right health professionals, advocating for services, arranging payment and following up. Health care systems can be very disjointed; navigating them may be frustrating and time-consuming. Very often it will fall on the primary caregiver to anchor the effort, but he or she will need support and assistance from others. Several aspects of frontotemporal degeneration are especially important to consider when thinking about how to best coordinate and manage care:
Use a single point of contact for healthcare providers.
People can live for many years with FTD and benefit from a broad range of treatments and therapies. You will likely have to engage many different providers over time. It is easiest when one person in a family is the point of contact for all providers. Keep your phone numbers, e-mail addresses and other contact information as consistent as possible and if you must change your address or contact number, be sure to take advantage of whatever forwarding services are available.
Maintain a consistent schedule of routine healthcare.
Having FTD does not mean someone is immune to all the other ailments and illnesses. It may, however, make it difficult for the person to understand or communicate changes in their physical well being. Routine problems like the common cold or a toothache can trigger changes in behavior or functioning that appear to be the result of FTD, but are unrelated and easily treatable. Additionally, planning, scheduling, and participating in office visits may elicit resistance, confusion, and anxiety from someone with FTD. Establishing as much routine and consistency as possible around these necessary events can reduce the potential stress for everyone involved, and result in higher quality care.
Address treatment and diagnosis simultaneously.
FTD can be a very difficult disease to clearly diagnose. For a variety of reasons, the diagnostic process can be excruciatingly long and confusing, even for the doctors making the diagnosis. Moreover, FTD is a progressive disease and will change over time, so diagnostic details may also change. Be prepared to coordinate care for treatment even while you are coordinating care to establish or clarify diagnosis.
Ask about obtaining medical records when you schedule appointments.
Everyone has access to their own medical records, but sometimes you have to request them. What forms to fill out and where to send them, consent requirements for release of records to a caregiver, processing and copying fees, may be determined by administrative policy, federal, state and local laws. Request records routinely. Storing medical records you don’t need is much easier than getting old records you end up needing.
Keep paperwork organized and accessible.
Create a permanent and accessible healthcare file. It should include lists of current and past healthcare providers, current and discontinued medications and dosages, copies of medical records and relevant legal documents, and insurance information and payment receipts. Having organized healthcare records can make it easier on you and everyone else involved in the care of your loved one.