When is it time for hospice with dementia? Signs and next steps

It's time to ask about hospice when your parent's doctor thinks he may have six months or less to live if the dementia follows its usual course. In late-stage dementia, the changes that usually start that conversation are trouble swallowing, weight loss, no longer walking, needing help with everything and infections like pneumonia that keep coming back. If you're wondering when is it time for hospice with dementia, the honest answer is: probably sooner than you think. You can ask for a hospice evaluation yourself. You don't have to wait for the doctor to bring it up.

Asking is not giving up on him. It's asking for more help, at home or wherever he lives, from people who do this every day.

When is it time for hospice with dementia?

The Alzheimer's Association describes late-stage dementia this way: the person has trouble eating and swallowing, needs help walking and eventually can't walk, needs full-time help with personal care and is vulnerable to infections, especially pneumonia. The National Institute on Aging adds that swallowing problems raise the risk of choking and of food getting into the lungs, which can cause pneumonia.

When you see several of these together, it's reasonable to ask. Families often notice it in small ways first. He sleeps through lunch most days. He coughs when he drinks. The memory care nurse mentions his weight at every visit.

Nobody can give you an exact timeline. The NIA says doctors have a hard time predicting how long an older, sick person will live, and that people sometimes start hospice too late to get the full benefit. Starting earlier can mean months of help instead of days.

Hospice eligibility for dementia under Medicare

Medicare.gov lists one set of conditions for everyone, whatever the illness. Your parent needs Medicare Part A and must meet all of these:

1. His hospice doctor and his regular doctor, if he has one, certify that he's terminally ill, with a life expectancy of six months or less.
2. He accepts comfort care instead of care to cure the illness.
3. A statement is signed choosing hospice instead of other Medicare-covered treatment for the terminal illness. If he can't sign, ask the hospice who can sign for him under his health care proxy or power of attorney.

Only those doctors can make the certification. You'll see checklists online with specific scores and stages. Treat them as background, not as the rule. The decision rests on the doctors' judgment about his prognosis, so the useful step is asking for an evaluation.

How long can someone with dementia stay on hospice?

Medicare.gov says hospice comes in two 90-day benefit periods, then an unlimited number of 60-day periods. The Medicare hospice booklet says that if he lives longer than six months, he can keep getting hospice as long as a hospice doctor recertifies that he's terminally ill at the start of each new period. The NIA adds that a person can leave hospice for a while and return later if the doctor still believes the prognosis is six months or less.

What does hospice do for dementia patients?

Hospice brings a team to wherever he lives. Medicare.gov says he can usually get hospice at home or in the facility where he lives, like assisted living or a nursing home. He doesn't have to move.

The Medicare booklet lists what the hospice plan of care can include:

• Doctor services and nursing care, with a hospice nurse and doctor on call 24 hours a day, seven days a week.
• Hospice aide and homemaker services.
• Medical equipment and supplies, like a wheelchair, walker or bandages.
• Drugs for pain and symptom control.
• A social worker, dietary counseling and physical, occupational or speech therapy.
• Short-term inpatient care when symptoms can't be managed at home.
• Short-term respite care. If you need rest, he can stay in a Medicare-approved facility for up to five days at a time, on an occasional basis.
• Grief and loss counseling for you and the family.

Medicare.gov says you pay nothing for hospice care from a Medicare-approved provider, other than up to $5 per prescription for outpatient drugs and 5% of the approved amount for inpatient respite. The respite guide covers other ways to get a break before and during hospice.

What hospice doesn't cover

Families are often caught off guard by these.

• Room and board. Medicare.gov says Medicare doesn't cover room and board for hospice at home, in a nursing home or in a hospice inpatient facility. If he's in memory care, the monthly bill continues.
• Round-the-clock help. The NIA notes that day-to-day care of someone dying at home is still done mostly by family and friends, with the hospice team coaching and visiting. Ask exactly how many aide hours a week he'll get.
• Treatment to cure the illness, and care from providers the hospice didn't arrange. Call the hospice before any ER trip or new appointment, or you might owe the full cost.

Original Medicare still pays for care of health problems unrelated to his terminal illness, with the usual deductibles and coinsurance. And the booklet is clear that he always has the right to stop hospice care at any time.

If it's too early for hospice, ask about palliative care

If the doctor says he doesn't qualify yet, ask about palliative care. The NIA describes it as care focused on comfort and quality of life for anyone with a serious illness, including dementia. It can start at any stage, alongside other treatment. A palliative team manages symptoms, coordinates his care and helps you plan ahead. The NIA notes it can move to hospice later if his doctor thinks he's likely within six months.

Choosing a hospice

You choose the agency, and they differ. Find Medicare-approved hospices on Medicare.gov's Care Compare tool, or ask his doctor. Call two or three and ask:

• If we call at 2 a.m., how quickly does a nurse come?
• How many nurse and aide visits will he get each week?
• Have you worked with his memory care community, and who coordinates between your staff and theirs?
• Where would he go for respite, or for symptoms we can't manage at home?
• What do you want us to call you for instead of 911?
• What grief support do you offer the family afterward?

Take Marcus, whose father was in memory care and had lost 12 pounds over the summer. Marcus called three hospices on a lunch break. One said a nurse could come within the hour at night. That's the one he picked, and the memory care staff knew their nurses by name.

What to say

These lines help you start the conversation and keep it on track.

• To the hospice intake nurse: "He has late-stage dementia, he's stopped walking and he's losing weight. What do you need from his doctor?"
• To a sibling who says it's too soon: "Hospice is more help, not less. The nurse can talk you through it. I'll set up a call."
• To your dad, if he's anxious: "Some new nurses are coming to help you feel comfortable. I'm right here."
• To yourself: "Asking for hospice is a way of looking after him."

If the guilt comes anyway, and it usually does, the guide on caregiver guilt is for that.

Questions caregivers ask

Does dementia qualify for hospice?

Yes. Dementia can be the terminal illness for hospice, and the Medicare conditions are the same as for any illness: his doctors certify a prognosis of six months or less, and he chooses comfort care.

How long are dementia patients in hospice?

It varies. Dementia often declines slowly, and Medicare allows unlimited 60-day periods as long as a hospice doctor recertifies him. Some people stay months. Some leave hospice when they stabilize and come back later.

Is hospice good for dementia patients?

The NIA reports that families who use hospice are more satisfied with end-of-life care, and that hospice patients are more likely to have their pain controlled and less likely to get tests or medicines they don't need. For many families, the biggest change is having a nurse to call at night.