FTD Care Roadmap

Download the FTD Care Roadmap (PDF)

Caring for someone with frontotemporal dementia (FTD) can bring many questions about what to do now and what to expect next. The FTD Care Roadmap offers practical information and resources to help people living with FTD, families, and caregivers navigate changing needs.

The FTD Care Roadmap was developed through a collaboration initiated by caregiver and advocate Emma Heming Willis, who partnered with dementia care centers, including the UCSF Edward and Pearl Fein Memory and Aging Center, part of the UCSF Weill Institute for Neurosciences.

You do not need to explore everything at once. Start with the area that feels most important now, and return to other topics as questions and needs arise.

Support Team

Living well with FTD or caring for someone with FTD requires support from a team. When thinking about who to include on your team, consider the following questions:

  • What if something happens to you? Who would you call in an emergency, and would they know what to do?
  • Who can help and who can make decisions? Would others know who to contact and who has decision-making authority?
  • Where is important information stored, and who can access it? How will information be organized and shared?

Create a contact list of who to call in these situations. Update it regularly and share it with your backup caregiver and your legal proxy decision-maker. Start a medical binder with important information, including the medication schedule, doctors, pharmacy, and a copy of insurance cards that can be handed over to your proxy if a transition needs to be made.

Your Personal Support Team

These are neighbors, friends, or family members who have agreed to help.

Family member or backup caregiver

This is the person who steps in to help the person with FTD if the primary caregiver is unable to. They need to know the person with FTD well enough to support them, understand the basic needs and routines, and be willing and able to respond on short notice. This is a significant ask. Have an honest conversation about what the role involves, and what resources are available to help (e.g., other friends and family willing to help, money to pay for care, public benefits). If there are young children in the home, consider having another backup plan for them (e.g., a friend or family member they can stay with temporarily).

Friend or neighbor

This is someone who lives close enough to arrive quickly in an emergency — ideally within minutes. Their role is not to provide ongoing care but to be a first responder: checking on the person with FTD, allowing emergency services in, or making a phone call. Ask someone you trust and who is reliably responsive. Make sure they have a key or access to your home, know the name and basic situation of the person with FTD, and know who to call next.

Legal proxy decision maker

This is the person named in legal documents, such as an advance directive or a durable power of attorney for healthcare and finances, who can make decisions on behalf of the person with FTD when they are no longer able to do so. These legal documents should be in place before a crisis occurs. If you have not set these up yet, make it a priority. To complete an advance directive for medical decisions, consider using this free website, Prepare for Your Care, which walks you through the process. To prepare to meet with an elder law attorney to name a financial caregiver or durable power of attorney for finances, consider using this free website, Plan for Clarity, to help you think through your options. For help finding an elder law attorney in California, contact California Advocates for Nursing Home Reform or a county-based legal referral service found on the California Bar Association website.

Resources: Prepare for Your Care, Plan for Clarity, California Advocates for Nursing Home Reform, California Bar Association

Important: Do not assume people know their role. Have a direct conversation with your neighbor, your backup caregiver, and your legal proxy. Make sure they have agreed, know what you are asking of them, and have copies of a contact list, medical information, and legal documents.

FTD Information and Advice

The AFTD HelpLine (1-866-507-7222) is staffed by FTD specialists and is available during regular business hours (Monday–Friday, 9 a.m.–5 p.m. ET). The AFTD is a helpful resource for guidance after a new diagnosis, learning about FTD, planning, connecting with resources, and managing behavior or safety concerns.

After-Hours and Emergency Contacts

There will be times when you need help outside of regular office hours. For example, when you feel overwhelmed, when a conflict escalates, or when something goes wrong. Keep these numbers handy for when you need them.

After-hours medical advice

Most primary care practices have an after-hours phone line for triaging urgent medical concerns. Call the after-hours number to report symptoms that cannot wait until the next business day, like a sudden increase in confusion, a possible fall injury, a medication concern, or a significant change in condition. Insurance companies often list a nurse triage number on the back of their cards as an additional option.

Alzheimer's Association HelpLine

The Alzheimer's Association HelpLine (1-800-272-3900) is available 24 hours a day, 7 days a week, and can help with behavioral concerns, safety questions, and resource information. This is not an emergency line. It can be a valuable resource when you need guidance and other supports are not available.

911

Call 911 for medical emergencies, threats to safety, serious injury, or if the person with FTD needs help that cannot wait. If you call 911, tell the dispatcher that the person has frontotemporal dementia.

988 Mental health crisis lifeline

Call or text 988 if you are experiencing severe distress, thoughts of suicide, or a personal mental health crisis.

Medical Providers

Your medical team manages the health of the person with FTD and supports caregivers in understanding and responding to changes over time.

Primary care provider

Primary care providers manage a person’s overall health, coordinate care among specialists, and are often the first to be called to report new physical symptoms or concerns.

Dementia specialist

A dementia specialist may be a neurologist, geriatrician, or psychiatrist who manages the neurological and psychiatric aspects of FTD, including behavioral symptoms and medications.

Proxy chart access

Many healthcare systems allow a designated family member or caregiver to access the patient's electronic health record through a proxy account. This means you can manage appointments, read visit notes, see test results, update medication lists, and send messages to the care team on behalf of the person with FTD. Ask about setting this up if you have not already.

Pharmacy and insurance

The pharmacy name and phone number, along with your insurance member ID and group number, are frequently needed for medication questions, prior authorizations, and sometimes for new prescriptions or refills.

Support Service Providers

Keeping a record of the support services you have used, even briefly, allows you to reach out to them quickly when the need arises again.

Care navigator, social worker, or care manager

Your primary care or dementia specialist clinic may offer consultation or ongoing support from a care navigator or social worker to help you address care needs, connect with resources, and plan ahead. A care manager may be available for free through county services or Medi-Cal, or privately through a professional organization such as the Aging Life Care Association.

Home health services

Home health provides skilled nursing, rehabilitation services, and limited personal care in your home. It is ordered by a physician for a specific medical need, such as after a fall or a hospital stay. Home health is intermittent, often used for a few weeks to a few months at a time. Using the same agency can provide continuity. You can search the Medicare Compare website to see home health service ratings.

Rehabilitation therapies

Speech therapy, physical therapy, and occupational therapy each address specific needs at different stages of FTD. Speech therapy helps with communication and swallowing. Physical therapy addresses balance, mobility, and fall prevention. Occupational therapy helps with daily activities and home safety. These services are intermittent and require a new referral from the primary care provider when needs change.

Respite care

Respite gives caregivers a break and provides socialization and support for the person with FTD. Respite care includes in-home respite through a private caregiver or home care agency, adult day programs, residential care homes, or assisted living facilities. Finding and vetting these services takes time and often involves some trial and error. It is helpful to investigate options while things are manageable, so you are prepared when a crisis arises. Most respite care is paid for out of pocket, and many families are not prepared for the costs. Learning about the cost of local services will help you understand your options and manage your resources accordingly. Your local Caregiver Resource Center can provide more information.

Legal and Financial Guidance

Legal and financial planning is one of the most important tasks for someone with FTD. Because FTD directly affects judgment and impulse control, legal protections often need to be in place earlier than expected.

Elder law attorney

An elder law attorney specializes in legal issues related to aging and disability, including durable power of attorney, advance healthcare directives, guardianship, Medicaid planning, and estate planning. These documents need to be completed while the person with FTD still has legal capacity to sign them. If this has not yet been done, it is a priority. This free website, Plan for Clarity, provides helpful guidance. To find an elder law attorney in California, contact the California Advocates for Nursing Home Reform or a county-based legal referral service found on the California Bar Association website.

Financial planner or advisor

A financial planner can help you understand long-term care costs, review insurance coverage, and plan for future financial demands. If the person with FTD has shown signs of impulsive spending or poor financial judgment, setting up home internet security and parental controls on devices can be helpful. Other protective arrangements, like limiting or removing access to accounts or credit cards, should be discussed with both the financial institution and an elder law attorney. A free consultation with a certified financial advisor may be available through a public library, a local financial empowerment center, a retirement investment account, a credit union, or a bank.

Additional Resources

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Learn About FTD

A diagnosis of FTD often raises more questions than it answers. What exactly is FTD? Why does it affect behavior or language rather than memory? Is it genetic? What does the future look like? This guide is designed to help you find reliable answers and connect with the people and resources at UCSF who can help you understand your specific diagnosis.

What is FTD?

Frontotemporal dementia (FTD) is a group of related conditions caused by the progressive degeneration of the brain's frontal and temporal lobes. These areas control behavior, decision-making, emotion, and language. In people under 60, FTD is the most common cause of dementia, and it affects as many people as Alzheimer’s disease in the 45-64 age group.

Because FTD primarily affects behavior and language rather than memory, it is frequently misdiagnosed as Alzheimer’s disease, depression, bipolar disorder, or obsessive-compulsive disorder. It often takes years to reach the correct diagnosis.

There is currently no treatment that reverses or stops FTD. However, medications and environmental strategies can help manage symptoms, and researchers at UCSF and elsewhere are actively working toward disease-modifying therapies.

Types of FTD

FTD is not a single disease but a spectrum of related conditions. The main types differ in which brain regions are most affected and what symptoms appear first.

bvFTD Behavioral Variant FTD

The most common FTD variant. Primary changes are in personality and behavior. Symptoms include apathy, loss of empathy, impulsivity, poor judgment, and socially inappropriate behavior. Memory is often relatively preserved in early stages.

AFTD diagnostic checklist: theaftd.org/disease-overview

svPPA Semantic Variant Primary Progressive Aphasia

Affects the ability to understand word meaning and recognize familiar objects or faces. Speech remains fluent but loses meaning. People may ask repeatedly what words mean.

AFTD diagnostic checklist: theaftd.org/disease-overview

nfvPPA Nonfluent/Agrammatic Variant Primary Progressive Aphasia

Affects the ability to produce speech and form grammatically correct sentences. Speech becomes effortful, halting, and simplified. Word comprehension is usually better preserved than speech output.

AFTD diagnostic checklist: theaftd.org/disease-overview

FTD-MND FTD with Motor Neuron Disease (FTD/ALS)

A small number of people with FTD also develop motor neuron disease with weakness, muscle wasting, and difficulty swallowing and breathing. FTD/ALS progresses more quickly than other FTD variants. It is strongly associated with mutations in the C9orf72 gene.

CBS / PSP Corticobasal Syndrome / Progressive Supranuclear Palsy

Related conditions that overlap with FTD but include prominent movement symptoms like stiffness, eye movement problems, falls, or unilateral limb difficulties. Both can co-occur with features of bvFTD or PPA. For more information, see CurePSP.

Each person’s experience of FTD is different. Two people with the same diagnosis can have noticeably different symptoms, rates of progression, and needs. Your UCSF care team can help you understand what your specific diagnosis means for you.

Detailed information on each type, including diagnostic checklists, is available from the UCSF Fein Memory and Aging Center, the Association for Frontotemporal Degeneration (AFTD), and CurePSP.

Symptoms and Stages

While each FTD type produces distinct symptoms, all forms cause a gradual decline in thinking and functional abilities. The pace of progression varies considerably from person to person.

Common early symptoms across FTD types

  • Changes in personality, social behavior, or judgment (bvFTD)
  • Loss of empathy or emotional responsiveness
  • Apathy or loss of motivation or ability to initiate activity (often mistaken for depression)
  • Difficulty finding words, or changes in the fluency or content of speech (PPA variants)
  • Impulsive decisions, poor financial judgment, or disinhibition
  • Repetitive or compulsive behaviors

How FTD progresses

FTD typically moves through mild, moderate, and advanced stages. In the early stages, a person can still manage most daily activities with minimal support. Over time, more help is needed first with complex tasks, then with basic self-care. In later stages, the person is fully dependent on caregivers.

Average survival after symptom onset is 7 to 10 years, though this varies by type. FTD with motor neuron disease tends to progress more quickly (2–3 years), while semantic variant PPA often progresses more slowly (around 12 years on average).

How FTD differs from Alzheimer’s disease

  • FTD typically begins with behavior or language changes; Alzheimer’s disease typically begins with memory loss
  • People with early FTD often retain their ability to remember recent events, while those with early Alzheimer’s typically do not
  • FTD more commonly affects people under 65
  • People with Alzheimer’s often become more sensitive to the emotions of others, whereas people with FTD often become less sensitive to the emotions of others
  • People with Alzheimer’s disease often find comfort in familiar places and old stories from the distant past, and often have consistent preferences over time, whereas the personalities and preferences of people with FTD often change significantly compared with how they used to be
  • A small group of people with FTD develops new creative abilities in art or music as language skills decline - a phenomenon that has been studied at the UCSF Fein Memory and Aging Center

A sudden or rapid change in behavior or function can signal a medical problem unrelated to FTD, such as an infection, a medication side effect, or delirium. Contact your care team promptly if you notice a new or unexpected change.

Genetic Risks

Approximately 20–40% of FTD cases have a genetic cause. About 80% of cases are sporadic, meaning they occur without a known inherited mutation. When FTD is genetic, it is inherited in an autosomal dominant pattern, meaning a first-degree relative has approximately a 50% chance of inheriting the mutation.

The three most common FTD genes

  • C9orf72 is the most common cause of genetic FTD. It can cause FTD, ALS, or both. A family history is not always present.
  • GRN (progranulin) usually causes behavioral variant FTD, but can also cause PPA, parkinsonism, or Alzheimer’s-like symptoms. Families typically have a strong history of FTD or PPA.
  • MAPT usually causes behavioral variant FTD. Families nearly always have multiple affected members across generations. It does not cause ALS.

Should our family consider genetic testing?

Genetic testing is a deeply personal decision with significant implications for the whole family. It can clarify the cause of a diagnosis and help family members understand their own risk, but it also raises complex emotional and practical questions that are best explored with support.

  • Testing should first be performed on the person with the FTD diagnosis. If a mutation is identified, testing can then be offered to healthy family members.
  • A negative test does not rule out FTD; it means a known mutation was not identified in the genes tested.
  • Genetic counseling before and after testing is strongly recommended.

The UCSF Fein Memory and Aging Center offers specialized genetic counseling through its Outpatient Genetic Counseling Clinic. Ask your care team for a referral.

More information: Familial FTD - UCSF Fein Memory and Aging Center | AFTD Genetics Overview

Research Opportunities

Participating in research is one of the most meaningful ways to advance understanding and treatment of FTD. Studies at the UCSF Fein Memory and Aging Center enroll people with FTD diagnoses as well as healthy family members, and some are open to people who do not yet know their genetic status.

Frontotemporal Dementia: Genes, Images and Emotions (GENIE)

The Fein Memory and Aging Center’s flagship longitudinal FTD study. Its purpose is to understand the clinical, genetic, imaging, emotional, and diagnostic features of FTD over time.

  • Open to: bvFTD, PPA (all variants), CBS, PSP, ALS, Alzheimer’s disease, and healthy aging
  • Involves: neurological examination, cognitive testing, MRI and PET imaging, blood draw, detailed family history, behavioral and personality testing, and questionnaires for participant and study partner
  • Participants are followed over time, contributing to a dataset that directly improves care for future patients
  • Learn more at memory.ucsf.edu/GENIE

Longitudinal Evaluation of Familial FTD (LEFFTDS)

This study focuses on families with a known FTD gene mutation in MAPT, GRN, or C9orf72. Healthy family members are also eligible to enroll, and participants do not need to know their genetic status to join.

  • Open to members of families with a known MAPT, GRN, or C9orf72 mutation, whether or not they have symptoms
  • Involves cognitive testing, neurological exam, MRI, blood draw, lumbar puncture, and questionnaires

Additional Research Studies and Clinical Trials

For a full list of UCSF studies currently enrolling people with FTD and related conditions: memory.ucsf.edu/research-trials

To learn more or express interest in participating, call 415-353-3266 or contact:

Participating in research does not affect the clinical care you receive. Your UCSF care team can help you understand which studies might be a good fit for you.

Understanding your diagnosis is an ongoing process, and it is okay not to have all the answers right away. Your UCSF care team is here to help you learn at your own pace and connect with the right support. Reach your care team through MyChart or by calling the UCSF Fein Memory and Aging Center at 415-353-2057. The AFTD hotline at 1-866-507-7222 is also an important source of support and community for families living with FTD.

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Safety & Finances

Taking steps to adapt to behavior changes, protect your finances, and stay safe can help you live as well as possible with FTD. Three questions that commonly arise after an FTD diagnosis include:

  • How can we get along despite the FTD?
  • How can we protect our resources to help us make it through this?
  • How do we stay safe while maintaining independence and joy?

This guide is designed to help you think through these questions and what you can do to make things easier for you and your family now and in the future.

1. Responding to Behavior Changes

FTD damages brain regions that govern insight, communication, behavior, judgment, and impulse control. People with FTD do not act differently on purpose; these changes are caused by the disease.

Low risk but annoying → Tolerate

Examples: Lack of interest or drive, repetitive vocalizations, unusual food habits, rigid routines.

These behaviors are uncomfortable and tend not to cause lasting harm. Learning to accept these changes is often the kindest and most practical response. Taking breaks and promoting caregiver wellness is important for building the capacity to tolerate difficult behaviors.

Socially challenging or embarrassing → Accommodate

Examples: Inappropriate comments in public, blunt remarks to family.

Use a courtesy card to explain FTD to others, choose quieter venues or slower times of day, bring activities or snacks to redirect, and prepare family members before visits. Practice self-compassion.

Distressing or risky → Redirect and de-escalate

Examples: Verbal agitation, wandering, emotional outbursts.

Assuming there is no immediate risk for harm, give the person space to calm down and try to regulate your own emotional response. Remove hazards and offer an enjoyable distraction, such as a snack or a walk. Consider what might have triggered the behavior and if changes to the environment or caregiving approach might help, for example, reducing noise or adjusting the schedule. If the behavior persists or worsens, consult with a medical provider.

Destructive or harmful → De-escalation and safety planning

Examples: Physically aggressive or threatening behavior.

Prioritize your safety. If possible, go outside with your phone. Avoid enclosed spaces like cars, bathrooms, and kitchens. If you can do so safely, purse your lips and exhale slowly while focusing on staying calm. Call someone for help, like a neighbor, friend, or the Alzheimer’s Association’s 24/7 helpline 1-800-272-3900. If there is a risk of imminent harm, call 911 and tell the dispatcher that the person has dementia. Afterward, consult with your medical team.

Important: A sudden change in behavior that is different from the usual pattern can be a sign of an underlying medical problem, such as an infection, a medication side effect, dehydration, or delirium. Contact your medical provider promptly if behavior or function changes suddenly or significantly.

2. Daily Routine

Daily routines help people with FTD function at their best. When the structure of the day is consistent and waking, meals, activities, rest, and bedtime occur at roughly the same time each day, energy is conserved, moods are lighter, and transitions are easier.

What makes a good routine

  1. Keep wake and sleep times consistent.
  2. Serve meals and snacks at around the same time each day.
  3. Keep meals simple and familiar while respecting strong food preferences.
  4. Set up the environment to support success. Lay out clothes the night before, store commonly used items in a consistent location, reduce visual clutter on tables and countertops, and hide visual cues that promote unwanted behavior (e.g., sugary snacks or car keys on the counter).
  5. Build in simple, enjoyable activities like taking a short walk, watching a familiar TV program, listening to music, or doing simple household tasks like sweeping, wiping counters, or gardening.
  6. Build in quiet time during the day, particularly in the late afternoon when people can become irritable.
  7. Create a bedtime routine to support good sleep.

Routine is as important for the caregiver as it is for the person with FTD. A predictable structure to the day makes caregiving more manageable and helps create natural moments of respite.

3. Protecting Finances

FTD impairs judgment and impulse control — the same brain systems that govern financial decision-making. This can lead to impulsive spending, giving money away, falling for scams, or difficulty managing bills. Financial problems are often one of the earliest signs of FTD, sometimes appearing before a diagnosis is made. The goal is to put protections in place soon after a diagnosis to avoid major financial losses and to simplify the role of a trusted financial caregiver.

Initial steps

  1. Automate routine bills so that utilities, rent or mortgage, insurance, and subscriptions are paid on time without requiring action.
  2. Ask your bank to send alerts for large withdrawals, unusual transactions, or low balances. Many banks offer this free of charge.
  3. Choose a trusted family member to help review monthly banking and credit card statements. Look for unfamiliar charges, unusual patterns, or missed payments.
  4. Ask the bank to add a trusted contact to the account. The trusted contact can be notified if the institution sees something unusual, without necessarily having access to the account.
  5. Fewer accounts are easier to monitor and manage. Consider consolidating accounts where practical.

Legal protections

These steps are easiest to complete while the person with FTD can participate in decisions.

  1. Use this free interactive website: Plan for Clarity, which is designed to help people plan for financial and legal needs later in life.
  2. Meet with an elder law attorney to establish a durable power of attorney for finances that takes effect only when needed (e.g., when the person with FTD needs help managing or protecting finances).
  3. For help finding an elder law attorney in California, contact California Advocates for Nursing Home Reform or a county-based legal referral service found on the California Bar Association website.

Preventing scams and impulsive spending

People with FTD are particularly vulnerable to phone, email, and in-person scams. Be alert to scams and take the following precautions in conversation with an elder law attorney.

  1. Consider registering for the National Do Not Call Registry.
  2. Consider working with the bank to reduce credit card limits and make it more difficult to impulsively move large sums of money.
  3. Consider setting up OpenDNS home internet security.
  4. Consider setting up parental controls on devices and monitoring social media accounts.
  5. Tools like teleCalm, EverSafe, Carefull, and True Link may be worth the cost in some situations.
4. Driving Safety

In California, physicians are required by law to report a diagnosis of FTD to the local public health department, which notifies the California Department of Motor Vehicles (DMV). The person with FTD will receive a letter from the DMV and must respond to it. The DMV may require a driving test or a medical evaluation before deciding whether to continue driving privileges.

How FTD can affect driving safety

FTD affects judgment, impulse control, and attention. These skills are essential for driving safely. Things to watch for include:

  1. Running stop signs or red lights without noticing.
  2. Driving too fast or too close to other vehicles.
  3. Getting lost on familiar routes.
  4. Difficulty responding quickly or appropriately to unexpected situations.
  5. Increased irritability or aggression while driving.
  6. Difficulty parking or judging distances.

If the person with FTD continues to drive despite identified concerns and an accident occurs, there may be significant legal and financial liability for both the driver and the family. Consider getting a formal driving evaluation through a specialized occupational therapist.

Driving cessation can be a significant loss. Careful conversations and deferring to medical providers and the DMV can help soften resistance. Removing visual cues like keys and arranging for alternative transportation services can make it easier to adapt. Taxis and rideshare apps like Uber or Lyft offer convenience, while paratransit and volunteer ride programs are affordable alternatives. Look for options in your area through your local Area Agency on Aging, county services, or by calling 211.

5. Home Safety, Falls, and Wandering

Most people with FTD live at home for many years after getting a diagnosis. Small changes to the home can reduce the risk of falls, accidents, and getting lost while promoting comfort and independence.

Strength and Balance

Maintaining physical strength and balance is one of the most effective ways to prevent falls and fall-related injuries.

  1. Daily walking, strength, and balance exercises.
  2. Supportive, well-fitting shoes with non-slip soles. Avoid using slippers or clogs that slide off easily.
  3. If you have had a fall or balance problems, ask your medical provider for a referral to physical therapy. A physical therapist can recommend exercises and suggest equipment or home modifications.

Home Accessibility

  1. Remove clutter, loose rugs, and obstacles from walkways. Clear pathways between the bedroom, bathroom, and kitchen.
  2. Use nightlights in hallways, stairs, and the bathroom at night.
  3. Install a grab bar next to the toilet and in the shower.
  4. Use non-slip bathmats or stickers.
  5. Consider installing a raised toilet seat, a handheld showerhead, and a shower bench.

Hazard Reduction

  1. Make sure smoke alarms are working.
  2. Label hygiene products and lock household cleaners out of reach to prevent accidental ingestion.
  3. Consider stove knob covers or a stove shut-off device if unsafe cooking becomes a concern. Remove or lock away sharp knives and other hazards as needed.
  4. Use a pill box and consider storing medications securely to prevent accidental double-dosing.
  5. Secure or remove firearms, tall ladders, power tools, toxic household chemicals, and other items that could cause harm.

Wandering

Wandering is often associated with restless pacing, compulsive walking, or an impulsive reaction to stress.

  • Medical ID and tracking devices. Consider getting a Medical ID with a QR code linking to your personal health and contact information. Smartphone apps, AirTags, Tile devices, and GPS trackers can help locate someone if they get lost.
  • Let trusted neighbors know about the diagnosis and how they can help if they see the person outside alone or acting unusually.
  • A video doorbell or a simple door chime on exterior doors can alert you when a door is opened.
  • If the person with FTD walks for long periods, ensure sun protection, hydration, snacks, and appropriate shoes and clothing. Periodically check feet for sores and rashes.

Some communities offer a home safety assessment and provide minor home modifications tailored to your needs. Ask your medical team for a referral.

Additional Resources

We have provided you with a lot of information and proposed many tasks. We know it’s a lot to process and may feel impossible at times. Your medical team can help you decide what to prioritize first and can connect you with additional support along the way. You do not have to figure this out alone.

UCSF

California

National

  1. AFTD HelpLine: 1-866-507-7222 or [email protected], specialists in FTD
  2. Alzheimer's Association HelpLine: 1-800-272-3900, available 24 hours a day
  3. AFTD, Behavioral Symptoms of FTD
  4. AFTD, Planning for Legal, Financial, & Health Insurance Issues
  5. UCSF, Behavior and Personality Changes
  6. Plan for Clarity for help with legal/financial planning
  7. CFPB Office for Older Americans: 1-855-411-2372 for information on protecting finances
  8. NCOA BenefitsCheckUp to find financial benefits and resources
  9. CDC Fall Prevention

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Community Resources

Navigating an FTD diagnosis means figuring out where to turn for help. This guide is designed to help you answer three questions that commonly come up after a diagnosis:

  1. What can UCSF offer to help us through this?
  2. How can we connect with people in a similar situation or find support services in the community?
  3. Where can we find reliable information about FTD?

You do not need to explore all of these resources at once. Your medical team can help you decide where to start.

1. UCSF Health Services

UCSF offers a range of services that can support people with FTD and their caregivers. Ask your medical team which of the following might be most helpful for your situation.

2. Community Support Services

Community organizations can offer peer connections, caregiver support, practical assistance, and help with navigating the road ahead. Many services are available locally and virtually.

Support for People Living with FTD

Virtual Early-Stage Peer Support and Engagement Groups

Support for Caregivers

Caregiver Support Groups

Bay Area Caregiver Resource Center

caregiver.org/bay-area

  • Caregiver education and training programs
  • Individual consultations to determine eligibility for legal/financial help, support groups, respite services, and individual counseling
  • Help with long-term care planning and referrals to community services

GUIDE Dementia Care Navigation Program

The GUIDE program is covered by Medicare A & B and provides monthly navigation support for people with dementia and their caregivers. Available July 2024 – June 2032.

San Francisco residents enrolled in UCSF Care at Home can ask their care team about GUIDE.

San Francisco Health Network primary care patients can ask their provider about the Dementia Care Aware GUIDE program.

Additional California Resources

  1. California Department of Aging — county-based nutrition, housing, transportation, long-term care, legal aid, elder abuse protection: aging.ca.gov/Aging_Resources
  2. Health Insurance Counseling & Advocacy Program (HICAP): cahealthadvocates.org/hicap
  3. Driving Safety — California DMV Senior Drivers: dmv.ca.gov/senior-drivers
3. FTD Research at UCSF

Participating in research is one way to contribute to progress in understanding and treating FTD, and some studies provide access to additional evaluations and support. To learn about participating in research at the UCSF Fein Memory and Aging Center, call 415-476-3722 or contact one of the teams below.

  1. Frontotemporal Dementia Research: [email protected]
  2. Clinical Trials: 415-353-3585 or [email protected]
  3. Learn more: memory.ucsf.edu/research-trials
4. Reliable Information

The following organizations and websites provide accurate, up-to-date information on FTD, caregiving, medical planning, and related topics.

FTD and Related Conditions

  1. Association for Frontotemporal Degeneration (AFTD) — HelpLine 1-866-507-7222: theaftd.org
  2. Progressive Supranuclear Palsy (PSP) Association — HopeLine 1-800-457-4777: psp.org

Caregiving and Aging

  1. Health in Aging — American Geriatrics Society: healthinaging.org
  2. Common Medical Problems in Dementia Caregiving — NIA: nia.nih.gov/caregiving
  3. Caregiver Tip Sheets — Family Caregiver Alliance: caregiver.org/caregiver-resources
  4. Long-Term Care in California — CANHR: canhr.org/fact-sheets

Planning

  1. Medical Planning: prepareforyourcare.org
  2. Legal and Financial Planning — Plan for Clarity: planforclarity.org
  3. Protecting Finances — CFPB Office for Older Americans: 1-855-411-2372: consumerfinance.gov/older-adults
  4. Financial Benefits and Resources — NCOA BenefitsCheckUp: benefitscheckup.org

You do not have to figure this out alone. Your UCSF care team is here to help you identify what matters most right now and connect you with the right support along the way. If you have not done so yet, contact the AFTD.

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Care for the Caregiver

Receiving an FTD diagnosis affects everyone in the household, not just the person diagnosed. How this news lands depends on your situation and what the months or years leading up to the diagnosis have been like. Caregivers may experience relief, grief, anger, anxiety, exhaustion, or many emotions at once. Whatever you may be feeling right now is okay. It can take time to process what the diagnosis means. Be gentle with yourself.

Many caregivers are managing multiple roles at once. Caring for children, maintaining a job, managing a household, and making dozens of decisions every day, all while absorbing the weight of slowly losing a partner, parent, or someone close to FTD. Protecting your own health and well-being, finding support, and recognizing your limits are essential for sustaining care over time.

Like endurance training, caring for someone with FTD requires pacing, fuel, support, and recovery. There are periods of intense effort, relatively steady stretches, and times when you will need to step back to restore yourself. Without rest, even the strongest athletes break down—and the same is true in caregiving.

This guide is organized around three questions:

1. How are you doing right now?

Caregivers of people with FTD are at high risk for depression, anxiety, social isolation, and burnout. The role is emotionally demanding, socially isolating, and prolonged. A key survival skill is noticing when you are not okay.

It can be helpful to name what you are feeling. Caregivers commonly experience:

  1. Grief. For the relationship as it was, for the future you had imagined, and for the person who is changing.
  2. Anger. At the unfairness, the inconveniences, the administrative barriers, and the lose-lose options.
  3. Anxiety. Worries about trying to manage everything, limited resources, uncertainty, safety, and mortality.
  4. Guilt. For losing patience, making mistakes, being the healthy one, and wishing things were different.
  5. Loneliness. Feeling unseen, misunderstood, stuck in a shrinking world of daily demands, loss of companionship with someone who is still physically present.
  6. Decision fatigue. The mental drain of using your brain for two or more people, and making continuous judgments across multiple roles and responsibilities.
  7. Physical exhaustion that may not fully resolve with rest. Caregiving demands that exceed resources, chronic sleep disruption, or the weight of grief.

These experiences are common among FTD caregivers. If you are experiencing persistent sadness, anxiety, or a sense that you cannot go on, please talk to your own doctor or a mental health professional. Caring for yourself is essential for caring for the person with FTD.

The HALT check-in

HALT is used in self-help recovery groups to help people pause and ask themselves: How am I doing right now? The version below has been adapted for caregivers.

H — Hungry / Hurting / Health

Am I Hungry, Hurting, or ignoring my own Health?

Your body needs fuel and care. Appetite changes and discomfort may also be related to difficult emotions. Keep nutritious snacks handy. Get regular health check-ups and address any physical pain that affects your mood or sleep. Continue to schedule your regular doctor, dental, and mammogram appointments. Maintaining your health is very important.

A — Angry / Anxious

Am I Anxious or Angry about something?

Talk to yourself in the 3rd person: “She is angry right now.” Or visualize yourself playing a character in a movie. Slow your breathing. Step back and ask yourself what need is going unmet. Is it within your control to change it?

L — Lonely / Low

Am I feeling Lonely or in a Low mood?

The impulse is to withdraw. Do the opposite, reach out. Smile, go to the store, act friendly, give a compliment. Text or call someone. Pet an animal. Try a support group.

T — Tired

Am I Tired?

Rest when possible, take naps. Ease expectations and accept help. Prioritize sleep. Talk to your doctor about tiredness that does not improve with rest.

These states tend to impair a person’s judgment, limit patience, and make caregiving more challenging. Checking in with yourself regularly will help you notice when you are struggling, identify what you may need in that moment, and respond more effectively.

Build restorative activities into your daily life

  1. Practice doing one small thing each day that is for you, like a walk, a phone call, or a quiet moment.
  2. Learn to accept help when it is offered, and to ask for it when it is needed. Keep a list of tasks that can be delegated relatively easily (e.g., package returns, technology assistance, transportation, meals, outings).
  3. Connect with other FTD caregivers who can understand your situation, try joining a support group, participating in online communities, or calling the AFTD HelpLine at 1-866-507-7222, Mon-Fri, 9-5 ET.
  4. Contact the Bay Area Caregiver Resource Center for individual consultation, counseling, and respite.
2. How do you want to show up as a caregiver?

Difficult days are unavoidable for FTD caregivers. How you show up, the energy you bring, your tone, body language, and expectations, can raise or lower the level of tension in the air and influence how the day unfolds. It’s not about being perfect or inauthentic. It’s about being intentional with what you have to give, doing your best, and practicing self-compassion when things don’t go as well as you hoped.

STOP before starting

  1. Stop.
  2. Take a deep breath to ease any tension.
  3. Observe how you are feeling.
  4. Proceed calmly and use a warm, unhurried tone even when you feel rushed.

Adapt how you communicate

FTD affects the brain areas that process language, social cues, and complex thinking. Adapting how you communicate helps reduce frustration for both of you.

  1. Slow down and simplify. Use short sentences. Give instructions one step at a time.
  2. Use yes/no and either/or questions. Instead of “How are you?” try “Was this a good day?” Instead of “What do you want for lunch?” try “Would you like soup or a sandwich?”
  3. Use statements and invitations instead of questions. “Come with me,” “It’s time to get dressed,” or “Can you help me…” tends to work better than “Do you want to…?” which invites refusal.
  4. Repeat what the person says as a question. To promote active listening and understanding.
  5. Avoid arguing or correcting. If the person says something that is not accurate, respond with a vague comment and redirection, “Hmm, that’s weird. Did you see the neighbor today?” or, “Huh, that doesn’t feel good. I’m sorry. Can we listen to The Beatles?”
  6. Use environmental strategies to block access, remove hazards, and reduce nagging.
  7. Limit information sharing to avoid unnecessary anxiety or distress. For example, do not tell the person about an appointment weeks in advance if they will ask about it repeatedly. Give them enough notice so that they have time to get ready on the day, and apologize for ‘forgetting’ to tell them earlier.

Use RAIN to weather intense feelings

  • Recognize how you feel, for example, hot and tight with anger, or cold and nauseous with fear or anxiety.
  • Allow the experience to be there, observe without trying to fix it.
  • Investigate how your body feels and ask what it might need, what it might believe, or what it might be trying to tell you.
  • Nurture yourself with compassion, say something like, “I’m sorry, this is hard. We will get through this.”

Keep showing up

  1. Think about difficult experiences you have had in the past. What was helpful to you back then? Could the things that brought you comfort and strength back then be helpful to you now?
  2. Focus on the present moment and what you need to do to get through the day. Sometimes we need to conserve energy and do only what's necessary. This is normal. Take it as easy as possible on some days.
  3. Step back and reflect on the life you have shared with the person you care for. Think about the events that brought you together and use mental subtraction to imagine life without them someday. This practice can help deepen your appreciation for your relationship and for the impermanence of your situation.
  4. Practice relaxing your body. Take a bath or shower. Go for a walk in nature. Try a body scan meditation.
  5. Work on expanding your tolerance for discomfort and your ability to cope with stress. Sleep, mindfulness practices, pleasant activities, a healthy lifestyle, social support, taking breaks, and reflecting on your values are all useful for coping. What works for you may change over time, and getting help from a therapist or counselor may be worthwhile along the way.
3. What are your strengths and what are your limits?

FTD caregiving is a team effort. While the primary caregiver usually plays a central role, sustaining care over time requires learning how to share responsibilities and coordinate support. This means understanding your strengths and limits, recognizing current and future needs, knowing what resources are available, and communicating clearly with others. Timing, flexibility, and shared accountability are all important to making care more manageable.

Prioritize your needs and try to accept what you cannot change

There are the things we deeply hope and wish for, and there are the things that get us through the day.

It can be difficult to take an honest look at what is essential and what is most likely to support you over time. Caregiving often involves difficult choices—sometimes this means reshaping former hopes and dreams to fit what is possible now. Although it may be painful at first, learning to accept what you cannot change can make things feel more manageable over time. The goal is to notice what tends to wear you down, and to find the kinds of support that can help ease those areas. This will look different for each person and may include:

  • Help with daily tasks, such as laundry, housekeeping, errands, meals, transportation, yard work, or home and auto maintenance.
  • Assistance with organization, including bookkeeping, technology, researching and vetting devices or services, and managing schedules.
  • Social support for you or the person you care for, such as coffee or lunch dates, walks or hikes, special outings, or regular visits or calls.
  • Legacy-building activities, such as recording audio or video interviews, organizing photos and meaningful items, or capturing moments through photos and videos.
  • Care for the person, including supervision, companionship, mobility assistance, and personal care.
  • Care for the caregiver. When you notice yourself losing your temper, feeling burnt out, or feeling overwhelmed, seek help and find a way to take a break, even if it means making compromises in other areas.

Practice getting help before you think you need it

Getting the kind of support you want often means learning to teach others what you and the person you care for need. Caregivers are often surprised by what other people do not know and may begin to feel that no one else can really help them.

Although teaching others how to help takes time and effort, it often leads to better support over time.

Building reliable working relationships with volunteer and paid helpers includes setting reasonable expectations, staying flexible, maintaining open communication, and offering positive feedback. Here are strategies that have worked for other caregivers:

  • If the person you care for resists outside help, emphasize that you are the one who needs support.
  • Create a document (like this one) to summarize important information about the person’s care needs.
  • Assign specific tasks to specific people rather than making general requests — “Can you take him to his appointment on Thursday?” is easier to act on than “I could use some help”.
  • Tell the person what to expect and how to respond in advance, for example, “He may say rude comments and eat food off of your plate. Plan to go to the restaurant when it is not busy, bring courtesy cards to give the server, and bring this bag with his favorite mints and magazines.”
  • Check in regularly and keep a communication log to document concerns, successes, observations, and updates. This could be a paper notebook, a shared electronic document, or a care coordination app such as CaringBridge, TimeTree, or CaringVillage.
  • Learn about working with family members: https://www.caregiver.org/caregiver-resources/caring-for-another/working-with-siblings/
  • Learn about hiring in-home help: https://www.caregiver.org/resource/hiring-home-help/

Plan for long-term care

FTD is a progressive disease, and the level of care needed will increase over time. Most people will need a few years or more of paid in-home or residential care. Families are often surprised by the high cost of this care and that Medicare does not cover it. In some areas, the demand for care is greater than the supply, some services may not be available, or there could be a long waitlist. High-quality, affordable care is often scarce. This is why it is so important to investigate options in your area before you need them. Join a support group and learn how other caregivers navigate long-term care challenges.

  1. Ask your UCSF provider to recommend a reputable placement advisor who can help you explore assisted living options.
  2. Ask a friend or family member to go with you to visit day programs or residential care facilities.
  3. Learn about Medi-Cal for long-term care and eligibility criteria, including spousal impoverishment protections: CANHR Fact Sheets.
  4. Sign up for free Health Insurance Counseling & Advocacy: HICAP to learn about Medicare benefits.

Caring for someone with FTD is one of the hardest things a person can do. It will ask more of you than you expect. On some days, you will also discover strengths and capabilities you did not know you had. You do not have to do this alone, and you do not have to do it perfectly. You just have to keep showing up, one day at a time.

Key Resources

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Stay Active

FTD can leave the person living with the disease and the person caring for them feeling lonely, inactive, and somewhat lost. Brain changes often disrupt a sense of connection by causing the person with FTD to become more self-focused, drawn to repetitive routines or immediate pleasures, and less aware of others’ experiences. These behavior changes may feel hurtful or confusing, even when caregivers understand that they are caused by the disease.

Despite these changes, shared positive experiences are possible and important for supporting the well-being of both people. Individuals with FTD may develop a new interest in music, art, or religion and tend to respond well to humor, physical comedy, sensory activities, and favorite foods. Strategies that often work for someone with Alzheimer’s disease, like reminiscing or talking about feelings, tend to be less effective for people with FTD. The activities and ideas below are designed specifically with FTD in mind.

There is no single approach that works for everyone. Discovering what brings joy often requires curiosity and some trial and error. Keep activities simple, match them to the person’s current abilities, and adjust the activity, the approach, and expectations as things change.

1. Build a Consistent Daily Routine

A predictable structure to the day reduces stress, preserves energy, and helps things run smoothly. Routine also creates natural opportunities for pleasant activities and connection throughout the day.

A sample daily structure

  1. Morning ramp-up, keep a consistent wake time and routine for dressing and grooming.
  2. Chores and movement, light household tasks, and short bursts of activity.
  3. Pleasant activities like music, games, creative projects, or outings.
  4. Mealtimes occur at consistent times and meet nutritional needs while respecting food preferences.
  5. Evening wind-down, calming activities, and a consistent bedtime routine for hygiene.
  6. Toileting and hand-washing routine after waking, before and after meals, and before sleeping.

Tips for supporting routine

  1. Minimize clutter and keep items needed for daily tasks in a consistent, easy-to-find place.
  2. Use a short visual checklist to reinforce steps in a routine.
  3. Use encouragement and positive feedback, and avoid criticizing mistakes.
  4. Use simple verbal prompts or visual cues to support success.
  5. If going out, bring FTD Awareness Cards to discreetly share with others as needed.
2. Chores as Purposeful Activity

Simple household tasks may give the person with FTD a sense of purpose and contribution. They also provide light physical activity and cognitive stimulation. The goal is participation, not perfection.

Ideas

  • Make the bed.
  • Garden or pick up leaves.
  • Arrange flowers.
  • Peel vegetables.
  • Sweep the floor or patio.
  • Wipe counters and tables.
  • Dry dishes or fold laundry.
  • Sort items like books, utensils, nuts and bolts, or buttons.
  • Hand-shred paper or junk mail.
  • Brush a pet or water plants.
  • Take out the garbage.
  • Decorate the house for a season or holiday.
3. Movement and Exercise Snacks

“Exercise snacks” are short bursts of movement woven throughout the day, typically lasting 5 to 10 minutes. Research suggests these brief bouts of activity support cardiovascular health, mood, and cognitive function, and are easier to sustain than longer workouts.

Examples of exercise snacks

  1. 5 minutes of brisk walking or stair climbing.
  2. Tossing a ball or balloon back and forth.
  3. Carrying a weighted bag or box.
  4. Simple repetitions: sit-to-stands, step-ups, jumping jacks, cat-cows, or bird-dogs.

Short exercise videos (10 minutes or less)

  • Quick Fit with Cassy: pbs.org/show/quick-fit-cassy
  • Silver Sneakers: youtube.com/@silversneakers
  • Chair Yoga Dance with Sherry Zak Morris: youtube.com/chair-yoga
  • Eccentric Exercises: youtube.com/eccentric-exercises
4. Humor

People with FTD often retain (or develop) an appreciation for slapstick, physical comedy, and absurd humor. Shared laughter is one of the most reliable ways to connect, even when communication becomes difficult.

Ideas

  • Watch slapstick or physical comedies like Charlie Chaplin, Buster Keaton, I Love Lucy, The Three Stooges, Mr. Bean, Jim Carrey, Jackie Chan, or Melissa McCarthy. Examples: youtube.com/slapstick
  • Watch blooper clips or funny home videos.
  • Read a comic strip or joke book together.
  • Ask “Would you rather…” questions with ridiculous options (e.g., Would you rather eat hairy pickles or slimy onions for dinner?).
  • Make funny faces together, especially with children or grandchildren.
  • Put on a silly prop during chores, like a crown, cape, oversized hat, or sunglasses.
  • Speak in a funny accent or impersonate a character from a favorite show.
  • Play with a pet.
  • More on the benefits of laughter: helpguide.org/laughter
5. Music

Music engages multiple areas of the brain and often remains accessible when other abilities decline. People with FTD may develop a heightened interest in music, sometimes listening to the same song or playlist on repeat. Caregivers can lean into this as a source of connection.

Ideas

  • Sing along to music in the car.
  • Sing familiar oldies, pop, folk, holiday, or gospel songs together.
  • Join a choir or singing group.
  • Dance to upbeat music.
  • Listen to a playlist of favorite music, with or without headphones.
  • Play calming background music during meals or transitions.
  • Play hand drums or drum rhythmically on a large exercise ball. Example: group drumming for dementia: youtube.com/drumming
  • Attend a live music performance.
6. Art and Creative Activities

Some people with FTD develop new or intensified creative or artistic abilities. Art and craft activities can provide engagement, a sense of accomplishment, and a channel for expression when words become harder.

Ideas

  • Paint, draw, or color.
  • Create collages with paper or magazine clippings.
  • Mold clay or play-dough.
  • Make shadow puppets.
  • Knit, lace, or simply roll balls of yarn.
  • Visit an art museum.
  • Look at coffee table art books.
  • Read poetry or scenes from a play out loud.
  • Make up a story together about a photograph. TimeSlips offers a creative storytelling approach designed for people with dementia.
  • Build with Legos. Brick by Brick Bonding has guidance on choosing appropriate sets.
7. Games and Leisure

Simple games and leisure activities provide engagement and can be a comfortable, low-pressure way to spend time together. Aim for activities that match the person’s current abilities to promote success.

Ideas

  • Do a puzzle (35-piece jigsaw, simple word search, or sudoku).
  • Play a simple game like Jenga, blackjack, dominoes, Connect Four, matching, or bingo.
  • Polish rocks or sand wood blocks.
  • Watch fish in an aquarium, birds at a feeder, or animals on a nature show.
  • Watch sports or a documentary related to personal interests.
  • Listen to an audiobook.
  • Read an old encyclopedia or trivia book.
  • Go for a walk or a drive.
  • Sit in a swing, rocking chair, or glider.
  • Blow bubbles or toss a ball, frisbee, or balloon.
  • Use prayer beads, an electric candle, or mood lights.
  • Write a card or letter to a family member together, a bucket list, or a list of favorite memories.
  • Go out for coffee or lunch with a friend.
  • Attend a local memory café — contact your local Area Agency on Aging to find one near you.
8. Motivating Rewards

People with FTD are often responsive to immediate, concrete rewards. The following can help someone with FTD initiate or stay engaged in activities, ease transitions, or simply add pleasure to the day.

Social rewards

  1. Give compliments and positive feedback.
  2. Outings like shopping, coffee, lunch, or a memory café. Avoid busy locations or times of day, and bring FTD Awareness Cards to discreetly share if needed.

Food and beverage rewards

Finger foods and small treats work well; they are immediate, sensory, and easy to offer during an activity.

  • Fresh or dried fruit, veggie sticks with hummus, olives, nuts, or cheese cubes.
  • Peanut butter pretzels, popcorn, or dark chocolate.
  • Carrot muffins, lentil brownies, or yogurt parfait — see Nutrition in Disguise recipes for healthy options that feel like treats.
  • Cup of tea, hot cocoa, fruit smoothie, or a popsicle.
  • Xylitol mint or gum.
  • Strong mint, spicy cinnamon, or sour lemon hard candy.

Tactile rewards

  • Massage or gentle affectionate touch, if welcomed and appropriate.
  • Hair brushing or nail grooming, if enjoyable.
  • Faux fur or soft-textured blanket or cushion.
  • Squeeze ball, Koosh ball, or other fidget device.

Staying connected with someone with FTD may look different from what it did before the diagnosis, but it remains possible. Moments of shared laughter, a calm routine, music, and simple pleasures can help tip the balance of daily experiences toward something that feels sustainable.

Additional Information

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How the FTD Care Roadmap was developed

The FTD Care Roadmap grew out of caregiver and advocate Emma Heming Willis’ experience following her husband’s FTD diagnosis. Recognizing the need for clearer guidance about what comes next, Willis brought together dementia care centers, including the UCSF Edward and Pearl Fein Memory and Aging Center, part of the UCSF Weill Institute for Neurosciences, to develop a practical resource for families navigating FTD.

The Roadmap brings essential information, resources, and strategies into six areas that families can explore as their needs change. Its illustrated format was intentional. Rather than creating another clinical handout, the team wanted to make something useful and beautiful—something families might want to keep nearby, display on a refrigerator, and return to over time. Working with artist Carissa Potter, the team created artwork intended to bring warmth and a sense of calm to information that can otherwise feel overwhelming.

The FTD Care Roadmap was also developed as a model that other dementia care programs can adapt for their communities. Organizations can use the same core structure while tailoring resources, links, and artwork to reflect local services, cultures, and communities. Working with local artists can help each Roadmap feel connected to the community it serves.

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