Hospice offers holistic care that focuses on maximizing the quality of one’s remaining life by addressing physical symptoms and the emotional and spiritual impact on the person and their family.

“Hospice is a wonderful program. People are so afraid of hospice because you hear about end of life,” said Heather Sellers, RN, BSN, CHPN, in a recent interview with AFTD HelpLine Specialist Ann Schoonover, MSW, LSW. But, as Heather put it, “I tend to think of hospice as: How do you want to live for the rest of your life?”

Many families on the FTD journey benefit from hospice services at the end of life. With a little foreknowledge of what hospice is, when it can be the right time, and how to find a provider, families can ensure they are confidently availing themselves of this unique service.

Hospice care, covered by Medicare, Medicaid, and most private insurance plans, is for people with a life-limiting illness who are expected to live six months or less, though it’s not uncommon for a person with dementia to remain in hospice longer as it can be difficult to determine the exact trajectory. In Heather’s case, she and her family cared for their mother in hospice for a year and a half.

Heather said that “the hospice team is a group of experts in symptom management and providing care to the wholeness of the person.”  The interdisciplinary hospice team generally includes a nurse, social worker, chaplain, and aide. Although 24/7 care isn’t provided, families have access to on-call support. It also includes a five-day respite benefit at a Medicare facility. Hospice will coordinate and provide equipment such as a hospital bed, bedside table, bedside commode, wheelchair, or oxygen concentrator, if needed. They can also provide some supplies like mouth swabs or adult briefs.

Hospice can be provided in a home or in a facility; the setting can change while the person is under service. Hospice workers will help coordinate any needed transitions.

A hospice nurse case manager herself, Heather had nevertheless not heard of FTD until her mother, Susan, was diagnosed after a lengthy period of unusual changes and misdiagnoses. Susan was eventually placed in an assisted living facility; after a period of decline there, Heather decided to bring her back home under hospice services.

Their journey with FTD was marked by challenges and sadness, of course, but Heather recalls hospice as a “beautiful experience” for her whole family. “There were so many emotions, but it really felt like living,” she recalled. “I could not have done it without hospice.”

In FTD’s late stages, the person diagnosed often becomes dependent on others for personal care, or experiences frequent hospital visits, infections, or other health issues, often at a time when communication abilities are minimal. Families frequently consider hospice at this point in the FTD journey. Heather told AFTD that in some cases the person’s medical team may initiate the conversation about hospice, but family members should feel free to broach that conversation with their providers as well.

Once a referral has been made, a nurse from the hospice agency will complete an evaluation and seek the required confirmation from two doctors to determine if the person is eligible. Some people will have other conditions such as ALS or a chronic condition that would be considered as well. If the person is eligible for services, the hospice team will guide the family on the next steps to sign onto hospice.

Medical professionals may require education about FTD, both in the evaluation stage and during hospice itself. Heather said that she didn’t feel prepared for how often she would have to explain how FTD symptoms and disease progression differ from those of Alzheimer’s disease. AFTD resources can help families share basic information about FTD and provide education opportunities for health professionals.

Hospice providers vary, so recommendations from friends, colleagues, or health professionals can be helpful. Look at agencies’ Medicare ratings, which are based on surveys from patients and families, both during and after service. Lack of a rating may indicate they don’t submit data to Medicare. Use Medicare’s Hospice Locator to find agencies in your area and see their ratings.

Reach out to hospice agencies directly to ask questions about their services and express any concerns. Families can also change hospice agencies if they wish or even choose to leave hospice after being enrolled.