Caregiving for Frontotemporal Dementia: What Families Need to Know

Can medical research unlock new treatment options?

There is currently no cure for FTD, and unlike Alzheimer’s, which now has several FDA-approved medications that can help manage symptoms or modestly slow cognitive and functional decline, there are no treatments available to slow or stop FTD’s progression. Compounding this challenge, FTD is a diagnosis made based upon symptom checklists for behavioral or language subtypes as there is no validated blood test, or biomarker, specifically associated with FTD.​

“People with FTD are often first diagnosed with a psychiatric condition because the earliest and most visible symptoms reflect changes in behavior, personality and emotion, rather than memory or physical function,” says Dr. Ryan Darby, director of the Vanderbilt Frontotemporal Dementia Clinic and associate professor of neurology at Vanderbilt University Medical Center in Nashville. “These symptoms can also be present in depression, bipolar disorder and other psychiatric conditions.”​

Diagnosis still relies on a combination of brain imaging showing atrophy in key brain areas, detailed neuropsychological testing and, in some cases, genetic testing in symptomatic patients to identify genetic forms.​

About one-fifth of people with FTD have an underlying genetic cause in more than a dozen genes. One of the most common is the GRN gene, which disrupts production of progranulin, a protein essential for brain cell survival, and can trigger the neurodegenerative process. Several research programs are investigating how gene supplementation could deliver a working copy of the GRN gene directly to the brain to slow, halt or alter FTD symptoms. ​

"This is one of the few forms of dementia where we understand the root cause at a molecular level," says Dr. David Cooper, chief medical officer at AviadoBio, one of several companies studying how gene therapy may impact FTD. "Gene therapy gives us a chance to intervene before more brain cells are lost, rather than chasing the damage after it's already occurred." ​

Debra and Kevin Rhodes in Nashua, New Hampshire. "Because he still looks and sounds like himself, people don't always see what I'm managing behind the scenes," says Debra.

Jesse Burke

How FTD impacts caregivers

For Kevin and Debra Rhodes, the earliest signs showed up in Kevin’s performance at work. Once highly motivated and successful in health care technology sales, Kevin unexpectedly lost a series of jobs in his late 50s, exhibiting increasing disorganization, poor judgment and uncharacteristic impulsivity. After Debra and their daughter alerted their primary care physician to what they were witnessing, a neurological referral led to answers, nearly three years after the symptoms started.​

“FTD didn’t just change Kevin’s behavior, it changed the entire rhythm of our lives,” says Debra of Nashua, New Hampshire. “One day I was his wife, and the next I was managing finances, decisions and safety, all while trying to protect his dignity and the man he’s always been.”​

For caregivers, FTD presents distinct and demanding challenges, yet the profound lack of support for those caring for people with the disease is often overlooked. Individuals may appear physically healthy and capable, even as their judgment deteriorates, complicating safety and supervision. Spouses are often the first to notice changes, only to be met with confusion, misdiagnosis or referral to marriage counseling rather than neurology. “Because Kevin still looks and sounds like himself, people don’t always see what I’m managing behind the scenes,” adds Debra. “Living with FTD means constantly walking a fine line, honoring his independence while knowing that, sometimes, I have to be the only adult in the room.”​

Rita B. Choula, senior director of caregiving at the AARP Public Policy Institute, knows these challenges well. She spent more than a decade caring for her mother, Theresa Bryant, who lived with behavioral variant FTD (bvFTD), a lesser-known, often misdiagnosed form of early-onset dementia. Initially told her mother had Alzheimer’s, Choula questioned the diagnosis after noticing striking changes in her mom’s personality and behavior. Bryant was ultimately diagnosed with bvFTD at age 60 and passed away at 72.​

Choula recalls how her once outgoing, empathetic mother gradually withdrew from social interaction and lost the emotional awareness that had long defined her. One of the defining moments was when Choula had her first child.

“Mom came to the hospital with my sister and appeared expressionless while holding her granddaughter for the first time— no joy, laughter or affection toward me or her first grandchild.” For Choula, this lack of emotion was deeply painful and confusing, especially since her mother was undiagnosed at the time.

The long and challenging journey to an accurate diagnosis shaped Choula’s commitment to improving awareness, support and advocacy for families affected by FTD. Choula, who serves on the board of The Association for Frontotemporal Degeneration, shares practical guidance for caregivers navigating this complex and frequently misunderstood disease.​

1. Trust what you are seeing​

FTD is frequently misdiagnosed, often taking two to three years for a clinical diagnosis. Choula emphasized that caregivers usually notice changes long before clinicians do. Abrupt shifts in personality, empathy, judgment or behavior that don’t fit a mental health diagnosis should be documented and raised repeatedly with health care providers.​

2. Advocate persistently for an accurate diagnosis

Choula stresses the importance of continuing to push for neurological evaluation when symptoms escalate or don’t align with psychiatric explanations, emphasizing that reassessing the diagnosis in light of new or atypical signs is essential to preventing misdiagnosis and delayed treatment.​

3. Behavioral symptoms are often the most distressing, not memory loss

​In behavioral variant FTD, memory may remain intact early on, while empathy, emotional connection and social awareness fade. “For caregivers, the loss of emotional awareness, especially during milestones like childbirth or family celebrations, can be profoundly painful,” explains Choula.​

4. Find an FTD specialist

​Look for neurologists or memory specialists at major academic medical centers or dementia research programs, as they often have FTD expertise. Organizations like t The Association for Frontotemporal Degeneration can also provide referrals to clinicians who specialize in FTD care. While you may need to travel farther to access these specialists, the quality of care your loved one receives is typically much higher.​

5. FTD creates unique challenges for couples and families

​Personality changes from FTD can deeply affect family dynamics and marriages, especially when someone who was once warm, empathetic and engaged becomes withdrawn, impulsive or emotionally detached. “A spouse might struggle with a partner who makes uncharacteristic social blunders, loses empathy or no longer shares affection, while children or siblings may feel confused, hurt or rejected,” says Choula. Caregivers need to remember that these behaviors are symptoms of the disease itself, not reflections of the person’s intentions or feelings, and that adjusting expectations and seeking support can help families navigate these unexpected shifts.​

6. Memory care facilities are often a poor fit

​Most dementia care environments are designed around memory loss, not behavioral symptoms. Choula noted that families frequently struggle to find in-home aides, group homes or memory care units with trained staff to support people with FTD, especially younger individuals. When identifying long-term care facilities, Choula recommends that caregivers ask the staff how they care for residents who may show more behavioral symptoms than memory loss, and how do they support residents who are younger and more physically capable.