Barbara Whitmarsh has had the full life of a scientist, wife and mother stolen from her by a rare form of dementia called Frontotemporal Degeneration, FTD. Her husband Robert has taken on the role of caregiver as his wife's ability to function and connect with others erodes. Gerontologist Dr. Freddi Segal-Gidan discusses FTD and how it differs from other dementias.

Frontotemporal Degeneration, ALS & Neurodegenerative Family Support

ALS is not always “just” a movement disease.

When most people hear ALS, they think of muscle weakness, loss of speech, feeding tubes, breathing machines, and the devastating loss of movement.

But for many families, ALS also brings changes in thinking, behavior, language, judgment, personality, or emotional regulation. These changes may be part of Frontotemporal Degeneration, often called FTD.

FTD is a group of brain disorders caused by degeneration in the frontal and/or temporal lobes of the brain. It can affect behavior, decision-making, personality, language, movement, and daily functioning. It is also the most common form of dementia for people under age 60.

For some families, ALS symptoms come first.
For others, FTD symptoms come first.
For some, both happen together.

This is known as FTD-ALS or the ALS-FTD spectrum.

What is FTD?

  • Frontotemporal Degeneration is different from Alzheimer’s disease. While Alzheimer’s often begins with memory loss, FTD more commonly begins with changes in behavior, personality, language, judgment, or motivation. A person may appear physically healthy while their brain is already being affected.

    • Sudden personality changes

    • Loss of empathy or emotional connection

    • Impulsive or inappropriate behavior

    • Apathy, withdrawal, or loss of motivation

    • Trouble planning, organizing, or making decisions

    • Difficulty finding words or understanding language

    • Changes in eating habits, hygiene, or routines

    • Poor financial judgment or unsafe decision-making

    These symptoms are often misunderstood. Families may be told their loved one is “being difficult,” “depressed,” “selfish,” or “not trying.” In reality, these changes can be symptoms of brain disease.

  • Researchers now understand that ALS and FTD can overlap. FTD and ALS can occur in the same person, and a shared genetic connection, especially changes in the C9orf72 gene, is one of the most important links between inherited ALS and inherited FTD.

    The ALS Association notes that up to 50% of people with ALS may experience some level of cognitive and/or behavioral change, while up to 20% may meet criteria for dementia. When dementia occurs in ALS, it most often resembles FTD.

    • Weakness in arms, hands, legs, or feet

    • Falls or changes in walking

    • Slurred speech

    • Trouble swallowing

    • Breathing difficulties

    • Loss of hand function

    FTD-related cognitive, behavioral, or language symptoms, such as:

    • Personality changes

    • Impulsivity

    • Apathy

    • Loss of insight

    • Trouble managing finances or medications

    • Word-finding problems

    • Difficulty understanding speech or written language

    FTD-ALS is especially hard on families because it can affect both the body and the decision-making center of the brain at the same time. Caregivers may be managing medical equipment, mobility loss, communication changes, safety concerns, and major personality or behavioral changes all at once.

Why this matters to Rise for ALS

At Rise for ALS, we know ALS does not always stay inside one neat diagnosis box.

Some families are facing ALS.
Some are facing FTD.
Some are facing both.
Some are still waiting for answers while symptoms keep changing the rules.

We support families affected by ALS, FTD-ALS, and related neurodegenerative diseases because the needs often overlap: care, equipment, transportation, communication support, caregiver education, emotional support, and community connection.

How we support families

Rise for ALS exists to raise funds, visibility, and community support for families in the Chattanooga and North Georgia region affected by ALS and related neurodegenerative diseases.

Depending on available funds and resources, support may include:

  • Caregiver connection
    Helping families feel less alone and more understood.

  • Resource navigation
    Connecting families with ALS, FTD, genetic counseling, hospice, palliative care, equipment, and local support resources.

  • Equipment and accessibility help
    Supporting needs such as mobility equipment, ramps, home modifications, adaptive tools, or transportation-related barriers when possible.

  • Family support grants or assistance
    Helping with urgent needs when funding allows.

  • Education and awareness
    Teaching the community that ALS can affect more than movement, and that FTD is not “bad behavior.” It is brain disease.

  • Collaboration across neurodegenerative communities
    We believe families facing ALS, FTD, Huntington’s disease, Parkinson’s-related disorders, genetic neurodegenerative diseases, and other serious neurological conditions have overlapping needs and deserve stronger networks of support.

A note for caregivers

If your loved one is acting unlike themselves, making unsafe choices, losing empathy, struggling with language, or seeming unaware of serious symptoms, you are not imagining it.

You are not failing.

You may be seeing the cognitive or behavioral side of a neurodegenerative disease.

Please talk with a neurologist familiar with ALS, FTD, or cognitive-behavioral changes in motor neuron disease. Families may also benefit from genetic counseling, especially when ALS, FTD, or dementia appears in multiple relatives. AFTD notes that when FTD and ALS appear in the same person or family, an inherited genetic cause is more likely, and genetic counseling is strongly recommended for those interested in learning more.

Our belief

A diagnosis may begin in the brain, the body, the voice, the hands, or the legs. But the burden lands on the whole family.

Rise for ALS is here for the people living inside that burden; the patients, caregivers, children, spouses, siblings, friends, and families trying to build care around a disease that keeps taking.

We cannot fix every broken system.
We cannot cure these diseases yet.
But we can show up.
We can connect families.
We can raise money.
We can tell the truth.

And we can make sure fewer people face ALS, FTD, or neurodegenerative disease alone.

Helpful resources

For more information about FTD, ALS, and FTD-ALS, families may want to explore the links we have attached under “Patient and Caregiver Resources”.

  • The Association for Frontotemporal Degeneration

  • The ALS Association

  • National Institute of Neurological Disorders and Stroke

  • A neurologist familiar with ALS, FTD, or cognitive-behavioral neurology

  • Genetic counseling services when there is a family history of ALS, FTD, or related dementia