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  • Writer's picturePenn FTD Center

Dear Nurse: Physical, occupational, and speech therapy

Dear Nurse,

It's frustrating that there aren't more treatment options available. What else can we do?

We often hear from caregivers of people with FTD and related disorders that they feel frustrated there are not more treatment options available for their loved one.  Although the FTD Center hosts some clinical trials of medications and therapies intended to slow or help with symptoms of the progression of the disease, the targeted nature of this research means not all patients will qualify, and benefits are not assured.  There are some medications that help with symptoms of FTD.  They can address problems with mood, movement, and pain. Unfortunately, they are not always able to ameliorate problems caregivers face at home and they cannot fully address some patient safety concerns.

Luckily, there are things that you can do to manage the symptoms of these diseases which can make a big difference in quality of life for you and your loved one.  Physical, occupational and speech therapists rely on extensive training, evidence-based techniques and an individualized approach which use your loved one’s strengths to help them feel better and do more. These therapies are helpful for people at all stages of disease and can address the most common problems faced by people with FTD and related disorders: problems with speech, movement, and behavior.  In most cases therapists can travel to your home to provide care to your loved one in a familiar environment.

How can physical therapy help?

Physical therapists are licensed health professionals with a doctorate degree.  They specialize in healthy movement, focusing on increasing strength and stability.  They are especially helpful for people whose disease has impacted their ability to get around.   They can help people who are at risk for falls to improve their balance and avoid injuries and hospitalization.

In early stages of disease, physical therapists can help to develop a modified exercise plan which is appropriate for the individual to support cognition and wellness.  This can be helpful even to patients who only have behavioral symptoms; for example, people with behavioral frontotemporal degeneration often appreciate the structure of a regular exercise routine. A physical therapist is typically the most appropriate person to help set this routine in place.

As the disease progresses, physical therapists can enable people to stay independent for longer.  If the patient becomes unable to walk without assistance a physical therapist can safely assist them with passive movement activities which can make the person much more comfortable.  Physical therapists are often helpful in assessing whether people with communication difficulties are in physical pain and can provide strategies to caregivers to address and prevent pain.

How can occupational therapy help?

Occupational therapists are licensed health professionals with at least a master’s degree.  The goal of occupational therapy is to help people take part in everyday things they want and need to do.  Whereas physical therapy focuses on comfort and being able to move around better (being active), occupational therapy focuses on being able to do things (taking part in activities).

Occupational therapists can evaluate your loved one’s environment – including your home – and find ways to make it easier for them to navigate and use.  Occupational therapists can also provide education and training to caregivers to show them how they can help make daily activities more doable for their loved one.  In early stages of disease, occupational therapists can find ways to make homes safer and adapt hobbies to allow the person to continue to enjoy them.  In later stages of illness occupational therapists may work on daily activities such as bathing and taking meals to make them more comfortable for the patient and caretakers.

Caregivers often have concerns about helping their loved one get dressed, bathe and use the toilet. It’s common for people with FTD and similar illnesses to need help with taking clothes on and off.  An occupational therapist can help simplify this process.  They can also discuss ways to make going to the bathroom safer, such as adding grab bars around the toilet or using an elevated toilet seat.  They are skilled at reviewing using the bathroom as a step-by-step process in a way that people with dementia are able to understand and make things easier.  Problems with incontinence and personal hygiene are often improved with the help of an occupational therapist.

How can speech therapy help?

Speech-language pathologists are licensed health professionals with at least a master’s degree. They specialize in communication and are also able to help facilitate healthy eating.  It is very common for people with all types of dementia to experience problems with swallowing as their disease progresses.  This makes it difficult to maintain a healthy weight.  Moreover, people who have difficulty swallowing are at risk of inhaling food into their lungs which could lead to a life-threatening infection. This type of infection is called aspiration pneumonia. Speech-language pathologists can reduce these risks.

For people with Primary Progressive Aphasia, a type of dementia which particularly affects language, working with a speech-language pathologist is beneficial at all stages of the disease.  However, anyone who is having problems with communication can benefit from speech therapy. A speech-language pathologist will work with the person to identify key phrases such as “yes,” “no” and “I love you” and strengthen that person’s ability to communicate even as other speaking skills may decline over time.  They can also help find non-verbal ways to communicate more effectively or evaluate patients who may benefit from using assistive devices to communicate.  For example, they can teach someone to use a tablet to write what they want to say or select a phrase they want to use from a list of options.  This process can make it much easier for caregivers to work with their loved one throughout the course of the illness.

How do I get connected with a therapist?

Your primary care physician or neurologist can write a prescription for physical therapy, occupational therapy or speech therapy.  You might not need a prescription for some types of therapy; however, health insurance companies typically require a prescription to authorize payment.  You should call your insurance company and ask them about cost as insurer polices vary.

Just as you might go to a few doctors before finding one you liked best you should expect that the first therapist you visit might not be the best fit for your family.  If you are seen by a doctor at UPenn, you can call Penn Neurology Social Work at 215-360-0254 to request recommendations of therapists in your area.  Another option is to visit the Alzheimer’s Association’s Community Resource Finder and search for home health care.  Many home health care agencies offer therapies as part of their services.

Is therapy worth it?

Physical, occupational and speech therapies are among the most effective interventions currently available for people with FTD and related diseases.  Unlike medications, side effects of therapy are minimal, and therapists use evidence-based treatments (those that have proven effective for many people).  They are some of the most prescribed and highly recommended treatments by our clinicians at the Penn FTD Center.  Therefore, these therapies are some of the best options for people with FTD and their caregivers to improve their quality of life.

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