In-home care for frontotemporal dementia

Why FTD care looks so different from Alzheimer’s care

Frontotemporal dementia (FTD) damages the parts of the brain that handle behavior, judgment and language.

The Association for Frontotemporal Degeneration (AFTD) estimates about 60,000 cases in the U.S., with most starting between ages 45 and 64, and notes it takes an average of 3.6 years to reach an accurate diagnosis. It is often mistaken for depression, a midlife crisis, or a psychiatric illness.

In the behavioral variant (bvFTD), memory can stay fairly good early on while personality changes. The AFTD describes symptoms such as:

• Disinhibition: rude comments, ignoring personal space, impulsive spending, taking things from stores, inappropriate touching.
• Apathy: losing interest in work, hobbies, hygiene and people.
• Loss of empathy: little reaction to others’ feelings, even a death in the family.
• Compulsive or repetitive behaviors: repeating phrases, rigid routines, hoarding.
• Eating changes: binge eating, cravings for sweets or carbohydrates, eating only certain foods, putting objects in the mouth, drinking more alcohol.

Other forms, primary progressive aphasia (PPA), mainly affect language first; see aphasia in our glossary. Often a person has anosognosia: they don’t recognize that anything has changed, which makes every conversation about help harder.

What’s hard about caring for frontotemporal dementia at home

• The person is younger and physically strong. They may walk for miles, drive when they shouldn’t, or resist redirection physically.

• Behavior, not memory, is the daily problem in frontotemporal dementia care. Public outings can be embarrassing or risky; finances can be emptied by impulse buying or scams.

• The family grieves a living personality change. Spouses often describe living with a stranger.

• Many services are built for older adults with Alzheimer’s. Day centers and facilities may not be set up for a restless 58-year-old.

AFTD notes that behavioral and environmental strategies are the main approach, that reassurance and distraction usually work better than confrontation, and that medication options are limited. Talk with your loved one’s doctor about treatment.

Frontotemporal dementia care: what a companion does differently

• Gives the day a job. Purposeful activity reduces boredom-driven behavior. Think yard work, washing the car, sorting hardware, walking a dog, helping cook a meal, or a regular gym routine. Our memory and engagement visits are built around what your loved one already cares about.

• Uses routine as a tool. People with bvFTD often do best with the same sequence every visit. Companions keep to it rather than offering lots of choices.

• Redirects instead of correcting. No arguing or lecturing about a rude remark. A calm change of subject or location usually works better.

• Manages outings with a plan. Quieter times of day, short trips, a set route, and a ready exit. Some families give companions a small card explaining the condition to hand to strangers when needed.

• Guards food and money. Keeps snacks portioned, notes eating changes, and doesn’t let your loved one make purchases or share card numbers. See our scam and exploitation guide.

• Is matched for energy and temperament. We look for steady, physically capable companions who are comfortable with blunt or unpredictable behavior and won’t take it personally.

If behavior becomes aggressive or unsafe, a companion steps back, keeps everyone safe and calls the family. Our guide to agitation and aggression has more on de-escalation, and perseveration explains repetitive behaviors.

What a good FTD visit can look like

Here is one example of a four-hour afternoon visit for a 60-year-old former contractor with bvFTD. The companion arrives at the same time each day and starts with the same greeting. They walk the dog together on a set route before the heat peaks, then spend an hour on a “project,” such as sanding and painting a planter, with tools laid out in advance.

Snack time is one portioned plate, not open access to the pantry. After a rest with a familiar ballgame on TV, they wash the car. The companion writes a short note for the family: mood, what went well, anything new. Nothing in that afternoon is a test or a quiz. It is a day with work in it.

Supporting the spouse or partner

FTD caregivers often say the hardest part is feeling alone: friends drift away, and people don’t understand why a “healthy-looking” person needs care. Regular respite matters, and so do peers who understand. AFTD’s HelpLine can help you find FTD-specific support, and our spouse caregivers page covers protecting your own health.

Florida and national FTD resources

• AFTD HelpLine: 1-866-507-7222, for questions about diagnosis, care and support groups.

• Memory Disorder Clinics: Florida’s 17 state-funded clinics provide diagnosis and referral. Examples include the Mayo Clinic Memory Disorder Clinic in Jacksonville, the University of Florida clinic in Gainesville, the University of South Florida clinic in Tampa and the Frank C. & Lynn Scaduto MIND Institute at Miami Jewish Health.

• Disability: Frontotemporal Dementia and Primary Progressive Aphasia are on Social Security’s Compassionate Allowances list. See our early-onset dementia page for work and benefits.

• Respite: Florida’s Alzheimer’s Disease Initiative serves adults 18 and older with related dementias. Call 1-800-96-ELDER.

Signs you need more help

• Run-ins with police, store security or neighbors.
• Money disappearing through spending, gambling or scams.
• Unsafe driving or refusing to stop driving.
• Physical aggression, or a caregiver who feels afraid.
• Weight gain, choking risk from stuffing food, or drinking more alcohol.
• The spouse is isolated because friends and family have pulled away.

When home is no longer safe, compare options in in-home care vs. memory care and ask each facility directly about its experience with younger residents with FTD. For budgeting, see our Florida cost guide, and check our areas to see if we serve your county.