Obtaining effective home and community-based FTD care services can be daunting. Know that the AFTD HelpLine is available to guide you through the process of securing professional care, while the Coordinating Care section of the AFTD website offers an introduction to home and community-based care options. These options can include:

It’s important to consider the cost of these services, and whether they are covered by insurance. Medicare and private insurance policies often cover short-term skilled home care with a visiting nurse, physical therapist, or occupational therapist, but only after an acute medical event such as a hospitalization or a medically necessary inpatient rehabilitation stay. These services are meant to be rehabilitative and end once the person has met their goals.

Medicare and commercial insurance do not cover the cost of home care provided by home health aides or adult day programs. However, in some states Medicaid waivers or other income-based programs can help cover these costs for qualified families, although you may have to go on a waiting list.

Long-term care insurance policies and veterans benefits can also help cover home-care costs for those who qualify. For others, these expenses must be paid privately. If private home care is considered medically necessary, the costs might be tax-deductible, so be sure to speak with your tax consultant first.

Adult day programs are another community-care option, providing daily care in a group setting with routine, structure, and activities. Some even offer transportation to and from the site. Respite care, meanwhile, is an option that provides short-term home or facility-based care so that family care partners can get a temporary break, and is offered in many states. AFTD offers Comstock Respite Grants to subsidize the cost of this short-term care option.

Your local Area Agency on Aging can provide a list of home care agencies and adult day programs near you, along with more information about respite care, income-based options, and Medicaid waivers. Use the Eldercare Locator, an online tool developed by the federal Administration for Community Living, to find an Area Agency on Aging in your community.

Don’t overlook word of mouth – friends, local religious organizations, and other informal networks can suggest resources. And there may be a support group for FTD care partners in your area, where others on the FTD journey can recommend care options that worked for them and help you navigate the process of obtaining outside care. Use AFTD’s website to find a support group near you.

Since FTD is not as well-known or common as other types of dementia and frequently develops earlier in life, FTD families must often adapt existing eldercare and/or Alzheimer’s-focused services for their loved one’s needs. AFTD provides educational resources that families can share with care providers who are willing to learn about FTD on the For Health Professionals section of our website. Specifically, you can share issues of the AFTD publication Partners in FTD Care so providers can better understand how FTD differs from other dementias.

Other Resources:

• Aging Life Care Association – Families can work with a professional care manager to help them find appropriate care options.
• Employee Assistance Programs (EAP) – These workplace benefits may offer consultations and assistance for family care partners.
• Family Caregiver Alliance – A helpful resource for learning about support and care options.
• AFTD Comstock Grants – Financial resources offered by AFTD.