Hospice for Dementia at Home vs. in Memory Care: What Changes

If someone with dementia lives in memory care, a common worry is whether hospice means moving them, or whether it will replace the staff who know them. For most families, neither is true. Hospice comes to the person. What changes is who does what, and who pays for what.

Where can hospice care be provided?

Medicare.gov says you can usually get Medicare-approved hospice care in your home or in another facility where you live, such as an assisted living facility or a nursing home. If you meet certain conditions, hospice care can also be provided in an inpatient hospice facility. The Alzheimer’s Association likewise says hospice care can be provided at home, in a hospital, or in a residential community. To be eligible in the first place, the person has to meet Medicare’s hospice standard; see our guide on when someone with dementia is eligible for hospice.

What stays the same wherever the person lives?

The hospice team and its purpose. The Alzheimer’s Association describes a team that includes a doctor, nurse, social worker, aide, clergy, and trained volunteers who address the physical, emotional, and spiritual needs of the person and the family, focusing on comfort and dignity instead of cure. Medicare says that once you choose hospice, you and your family work with the hospice team to set up a plan of care, and the hospice benefit should cover what you need under that plan. See what hospice is.

What changes at home?

At home, the family (or hired caregivers) continues to provide the day-to-day care, such as meals, bathing, supervision, and nights. Hospice adds its team: nurse visits, comfort and symptom management, support for the family, and help planning. In practice, families often find that the daily workload remains largely theirs, so it’s worth asking the hospice exactly how often each team member will visit, who to call at night, and what help is available if caregiving becomes too much. Medicare notes that if the hospice team decides the person needs short-term inpatient or respite care, they arrange it and Medicare covers that stay. See caregiver burnout and respite care.

What changes in a nursing home?

There’s a federal rule for this. Under 42 CFR § 418.112, a hospice and a nursing facility must have a written agreement spelling out how hospice services will be provided there. The agreement must provide that the facility continues to furnish 24-hour room and board and meets the personal care and nursing needs the person would have received from a primary caregiver at home, in coordination with the hospice. The hospice must have a written plan of care, and each side designates a member of its interdisciplinary team to coordinate care. In other words, hospice adds to what the nursing home does; it doesn’t replace it.

What about assisted living and memory care communities?

The federal rule above is written for nursing facilities. Assisted living and memory care communities are generally regulated by states, so the details differ. Medicare.gov says hospice can be provided in an assisted living facility where the person lives, but how the community and hospice coordinate varies. Ask the community directly: Do you work with hospice agencies? Do you have a preferred agency, and can we choose a different one? Who provides daily personal care once hospice starts? Is there a charge for extra help?

What does Medicare pay for, and what doesn’t it?

This is the part that surprises families most. Medicare.gov says Medicare covers hospice services but won’t cover room and board once the hospice benefit starts: it doesn’t cover room and board if you receive hospice care in your home, or if you live in a nursing home or a hospice inpatient facility. If the hospice team arranges short-term inpatient or respite care, Medicare covers that stay. Medicare also generally doesn’t cover care you get as a hospital outpatient or inpatient, or ambulance transportation, unless the hospice team arranges it or it’s unrelated to the terminal illness; if the hospice team decides inpatient hospital care is needed, they must make the arrangements, or you could be responsible for the cost.

For people in facilities, that means the monthly memory-care, assisted living, or nursing-home charge generally continues. The Alzheimer’s Association notes that Medicare does not cover the cost of long-term care. Medicaid is often the source that pays nursing-home room and board for people who qualify under their state’s rules, according to U.S. News, so ask a social worker or elder law attorney about eligibility. See Medicare and hospice coverage and planning ahead after an early dementia diagnosis.

Does the person have to move to get hospice?

No, and moving someone with dementia can be disorienting. The Alzheimer’s Association points out that even a temporary transfer to a hospital can be disorienting and sometimes harmful, which is one reason to ask whether care can be provided in familiar surroundings. Hospice is designed to come to the place they already call home.

What questions should we ask a hospice about dementia care?

• How often will the nurse, aide, social worker, and chaplain visit, and can that change as needs change?
• Who do we call at night or on a weekend, and how fast will someone respond?
• How do you work with the memory-care or nursing staff who know my relative?
• What medications, equipment, and supplies related to the diagnosis are covered?
• What happens if symptoms can’t be managed where they live?
• What support is available for our family, including after the death?

What if we’re not sure it’s time?

You can ask for an evaluation, and if the answer is “not yet,” that’s okay. See our guide on when to consider hospice. If you’re planning for yourself, record your wishes about where you’d want care in a Final Day Plan.

See also Feeding tubes and dementia and How to say goodbye to someone with dementia.

This is general educational information, not medical or legal advice. Coverage rules, facility regulations, and costs vary - the hospice, the facility, Medicare (1-800-MEDICARE), and a social worker or elder law attorney can address your specific situation.