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.
Learning skills and gaining confidence
There are many challenges that come with confronting a diagnosis of frontotemporal degeneration. They are difficult, but valuable opportunities to become a more confident and effective coordinator and caregiver. Here are some things to keep in mind as you go along:
Don’t take it personally.
FTD robs people of their self-control and ability to make rational decisions. Challenging, disturbing, and problematic behaviors are symptoms of the disease, and not deliberate actions or personal attacks. This can be critical to learning how to cope with the behaviors and respond appropriately.
Frontotemporal degeneration is rare.
FTD is not well known, nor understood even within the health care community. Well meaning providers may label all dementia as Alzheimer’s, and treat anything that does not fit their understanding of that disease as a psychiatric condition like depression, or obsessive-compulsive disorder. You may need to educate healthcare and other service providers on the similarities and the differences between FTD and other diseases, even as you are educating yourself.
The person is more important than the name of the disease.
Currently, there are no specific treatments or medications approved for FTD. Much of what is known about treating FTD is based on what works for other related diseases or psychiatric conditions. Just because a treatment or facility is labeled “Alzheimer’s” does not mean it won’t be helpful to someone with FTD, but some treatments, especially drugs, do nothing and can even be harmful for FTD patients. Pay attention to what works and what does not work for your loved one and be prepared to advocate for changes in medications and services.
There’s a lot to learn.
Keep on educating yourself; not just about the disease, but also on what resources and services are available to caregivers and patients, how they work and how to take advantage of them. Stay current with key research developments that may offer new opportunities for patients. Knowledge can be your best tool for finding quality care for your loved one, and will help you be a more effective advocate and caregiver.
You are not alone.
Become aware of resources for caregivers that provide information and support (see useful links). Look for helpful people with expertise in finances, law, and medicine, to guide you through the service systems. There are also current and former FTD caregivers out there who are willing to share what they have learned. Sometimes, just talking to someone who understands is more helpful than all the doctors and lawyers in the world.
You are advocating for someone with a serious medical condition who deserves respect and competent care no matter how poorly others understand their symptoms. As the primary caregiver you will have the most intimate knowledge of what does or does not work for your loved one, and any changes that occur in his or her condition. Ask questions and speak up; your opinion is valuable and needs to be heard.
Take care of yourself.
You are in it for the long haul. Pace yourself, and finds ways to reenergize. Ask friends and family for the help that you need. Many people want to help, but may not know what to do. Speak up. Taking care of yourself is essential.