The Care Team
When a loved one has a serious illness, life gets more complicated. The number of appointments, doctor visits and new healthcare professionals your family interacts with can escalate quickly. It can be overwhelming to try to understand who is who in the caregiving and medical world.
It takes a team of medical professionals to provide care to someone with FTD and assist your family. Since there is currently no cure or treatment to slow the progression of the disease itself, medical experts focus on treating FTD symptoms and promoting the best possible quality of life for the patient and his/her family. The goal is to minimize the impact of symptoms and keep the patient comfortable, pain-free and safe. There are medications that the physician can prescribe to address specific symptoms such as agitation or compulsive behavior. While medications can be helpful, many effective interventions require the expertise of people trained in behavior management or rehabilitation fields such as physical therapy, speech therapy or occupational therapy.
How do you understand the role of all the different doctors and other professionals who are there to help your loved one? Below is a list of some of the medical professionals who may be involved in helping you and your family care for your loved one.
The person most responsible for making sure the needs of the person with FTD are met is called the primary caregiver. For most families it is the well parent who keeps track of all the medical professionals, medications, appointments and therapies. The well parent also takes care of the household and other members of the family. Providing care for someone with FTD brings many new roles and responsibilities. It’s an exhausting, time-consuming and often frustrating job. While caregiving can be overwhelming, it can also bring a family closer together to work toward a common goal of the best possible quality of life for each member.
Primary care physician
This professional, sometimes called an internist or a family doctor, helps maintain your loved one’s general health. The primary care physician is usually the first doctor a person visits when they start to feel ill. They keep records of changes in your loved one’s health, and any other doctors who are part of your loved one’s treatment plan.
A neurologist specializes in injuries or illnesses that involve the brain and nervous system. A neurologist will order brain scans and psychological tests and interpret their results to determine which parts of the brain are damaged by disease. Neurologists will work with other specialists who can help in developing a treatment plan. They can also prescribe medications to help with a patient’s symptoms.
This medical doctor understands how the brain works and how it affects the way we think, feel and behave. A psychiatrist can also prescribe medications to help manage unusual thoughts and behaviors associated with FTD. He or she may also recommend prescribed medications to help family members cope with the feelings of stress and sadness from having to watch and care for a loved one who is sick, and can be very helpful to talk to in sorting out feelings.
A neuropsychologist is an expert in knowing how the brain controls our thoughts, feelings and actions – but they do not prescribe medication. Neuropsychologists use paper and pencil tests to help determine where and how FTD is affecting the brain. These types of tests are often done in the beginning stages of the disease to help doctors make a diagnosis. The tests may be administered throughout the stages of FTD to determine how the disease is progressing. Your loved one will perform tests that include answering questions and doing puzzles to show the relative strengths and weaknesses of their cognitive skills.
Speech and language pathologist
A speech and language pathologist (SLP) specializes in the evaluation and treatment of communication disorders and swallowing disorders. People diagnosed with primary progressive aphasia (PPA) and their families can benefit from working with an SLP to develop new strategies for communicating when speaking and writing skills begin to fail. Recommended approaches may include exercises, using a personalized communication book with pictures of key words or activities, and the use of electronic devices and software applications to compensate for declining language skills.
A physical therapist is consulted to assess balance and walking and to make recommendations to reduce the risk of falls. They may suggest changes to the home environment or show the patient and family exercises that will help to preserve strength or mobility as long as possible.
An occupational therapist helps people to learn or relearn how to do daily activities like dressing, bathing, grooming, and meal preparation, writing, and driving. They teach patients and caregivers how to adapt activities or provide training in assistive technology or orthotic equipment to help with everyday activities.
You may worry that because your mom or dad has FTD you will develop FTD too. Although most cases of FTD are not inherited, it is normal to be concerned. A genetic counselor is the expert who can help determine if your loved one’s illness is an inherited form of FTD. Learn more about the genetics of FTD by clicking here.
A social worker is trained to help families get the resources they need to work through the challenges of caring for someone with FTD. They provide information on financial and legal issues and make sure outside services, such as a home-health-nurse or family therapist, are contacted.
Elder care attorney
This is a specific type of lawyer who can help your family make legal decisions about money, wills and power of attorney (the legal right to make decisions for someone who cannot make those decisions on their own).
It is difficult to cope with the stress and emotions of having a family member with FTD. It can have a negative impact on your sleep, your appetite and your ability to stay healthy. A family therapist can help you take care of yourself. No one should feel embarrassed about needing help to cope with how their life has changed because of FTD. Talking with a professional is one of the best ways to get through a difficult situation so that it does not affect your health in a negative way.
Assisted living facilities/home health nurses
FTD is known as a “degenerative disease” which means the symptoms will continue to get worse until the person is no longer able to take care of himself or herself at all. Over time most families eventually reach a point where they can no longer meet the physical, medical and emotional needs of someone who is seriously ill. Fortunately there are trained Home Health Nurses who can care for a person with FTD by either coming into the home or who work in places where care can be provided 24-hours a day (assisted living facilities).
And anchoring the team…
There may be many different healthcare professionals involved in the care of your loved one over the course of the disease. Each one has special knowledge and skills that are important to the overall treatment team. But no one on the treatment team is more important than you and your immediate family. Together you know the person with FTD best and you know your needs as a family. Your observations and ideas are critical to the effectiveness of any care plan. Speak up and tell your healthy parent if you have suggestions or concerns for the well-being of anyone in your family including yourself.
Knowledge is power and being here on this website is a fantastic step forward in learning more about FTD, finding the support you need and fighting back against this disease. If you have energy for the cause, click here to learn more about how you can get involved. Join the AFTD Team and Fight This Disease!