Florida programs that help with dementia care

The front door: Elder Helpline and your local ADRC

Most Florida dementia care programs are funded by the Department of Elder Affairs (DOEA) and run through a network of 11 Area Agencies on Aging.

Each of those agencies also serves as the Aging and Disability Resource Center (ADRC) for its region, and 47 Community Care for the Elderly lead agencies deliver services locally. You do not need to figure out which program fits before calling. Call the Elder Helpline at 1-800-96-ELDER (1-800-963-5337) or your ADRC directly, describe your loved one’s diagnosis and needs, and ask to be screened for every program they might qualify for.

Alzheimer’s Disease Initiative (ADI)

Created by the Florida Legislature in 1985, the ADI is the state program built specifically for families living with Alzheimer’s and related dementias. It has four parts:

• Respite care. In-home, facility-based and emergency respite, plus extended respite of up to 30 days. Eligible: people 18 and older with a diagnosis of probable Alzheimer’s or a related dementia that affects daily living.

• Caregiver support services. Case management, specialized medical equipment and supplies, caregiver counseling and support groups, and caregiver training, delivered through the Area Agencies on Aging.

• Memory Disorder Clinics. The Legislature has authorized 17 clinics across 13 service areas. They provide diagnostic evaluation and referrals, training for caregivers and professionals, and research. DOEA publishes a map of clinic locations on its ADI page.

• State of Florida Brain Bank. Coordinates brain tissue donation for dementia research, in collaboration with Mount Sinai in Miami.

ADI respite pairs well with private care: some families use ADI hours for a regular weekly break and add private companion visits when they need more. Our Florida respite guide covers how to plan breaks.

Community Care for the Elderly (CCE)

CCE helps Floridians who are 60 or older and functionally impaired stay in the least restrictive setting that meets their needs. Functional impairment is determined by a comprehensive assessment and reassessed every year. Elders referred by Adult Protective Services who need immediate services receive primary consideration.

Depending on assessed need and local funding, CCE can provide adult day care, case management, chore and homemaker services, companionship, personal care, home health aide services, home-delivered meals, emergency alert response, respite, shopping assistance, transportation, escort, counseling, legal assistance and consumable medical supplies, among others. CCE is delivered by local lead agencies under contract with each Area Agency on Aging. Ask your ADRC about wait times in your county and whether a co-payment applies.

Home Care for the Elderly (HCE)

HCE supports an older adult living at home with a family member or other caregiver, as an alternative to a nursing home. Your loved one must be 60 or older, at risk of nursing home placement, within the Institutional Care Program income and asset limits, receiving SSI or eligible as a Qualified Medicare Beneficiary or Specified Low-Income Medicare Beneficiary, and living with an approved adult caregiver.

• Basic subsidy: $160 a month to help with support and some medical costs.

• Special subsidies: for some participants, help with items such as incontinence supplies, medications, medical supplies, wheelchairs, home modifications, home health aide or home nursing services.

• Case management when needed.

Older Americans Act services and caregiver support

Federal Older Americans Act (OAA) funding flows through DOEA to the Area Agencies on Aging, which typically work through local lead agencies. Services for people 60 and older can include meals and in-home help. For family caregivers, the National Family Caregiver Support Program is especially relevant: it serves caregivers of adults 60 and older and caregivers of people of any age with Alzheimer’s or a related disorder. It offers information, help accessing services, counseling, support groups and training, respite, and limited supplemental services. Some services, such as respite, may require the person receiving care to meet a frailty threshold.

More Florida dementia care programs worth knowing

These programs do not pay for care directly, but each one can save a family time, money or worry.

SHINE: free Medicare counseling

SHINE (Serving Health Insurance Needs of Elders) is run by the Department of Elder Affairs with the local Area Agencies on Aging. Trained volunteers offer free, unbiased and confidential one-on-one counseling about Medicare, Medicaid and other health insurance. It is a good call to make before choosing a Medicare plan for someone with dementia, or when you are unsure what a plan will cover. Reach SHINE through the Elder Helpline at 1-800-96-ELDER.

The Florida Special Needs Registry

Hurricane planning is part of dementia care in Florida. The Florida Department of Health keeps a statewide Special Needs Registry, working with county health departments and local emergency management agencies, so people with special needs can get information about evacuation and sheltering. Registering does not guarantee a spot in a special needs shelter, so it belongs alongside a family plan, not in place of one. Our hurricane season guide covers the rest of that plan.

The Long-Term Care Ombudsman Program

If your loved one moves to a nursing home, assisted living facility, adult family-care home or continuing care retirement community, Florida’s Long-Term Care Ombudsman Program can help. Its volunteers and staff, working from 13 district offices, investigate and resolve residents’ complaints and advocate for their rights, free of charge and in confidence. The program’s toll-free number is 1-888-831-0404.

How Florida dementia care programs fit together: an example

Here is how the pieces often combine, using a made-up family as an illustration. A husband in Broward County is caring for his wife, who was recently diagnosed. He calls the Elder Helpline, which connects him to the Broward ADRC for a screening. While they wait for an opening, he joins a caregiver support group and books an evaluation at a Memory Disorder Clinic to confirm the diagnosis.

When ADI respite becomes available, he uses it for a regular weekly break, and adds a few hours of private companion care on another day so he can keep his own doctor appointments. A SHINE counselor helps him review her Medicare coverage, and he adds her to the Special Needs Registry before hurricane season. Every family’s path is different, but starting with one phone call and asking about every program at once is almost always the fastest route.

Find your Area Agency on Aging / ADRC

Note that Manatee County (Bradenton) is served by the Tampa-area agency, while neighboring Sarasota County is served by the Southwest Florida agency. Our city pages list more local resources for each area.

Tips for getting help from Florida programs faster

1. Have the diagnosis in hand. A doctor’s note confirming Alzheimer’s or another dementia helps with ADI eligibility. If you do not have one, ask about the nearest Memory Disorder Clinic.

2. During screening, describe the hardest parts of the day in full: nighttime waking, wandering, falls, refusing care, and how much sleep you are getting.

3. Ask about every program at once: ADI, CCE, HCE, caregiver support and the Medicaid Long-Term Care waitlist.

4. Ask how long the wait is in your county and what you can get in the meantime, such as support groups or caregiver training.

5. Write down the name of everyone you speak with and the date.

State-funded programs have limited budgets, so many families combine them with private care. See the full paying for dementia care overview and our Florida dementia resources list. Program rules and funding change; confirm details with DOEA or your ADRC.