Hospice for dementia: when it’s time, and what changes

Dementia is a leading cause of death in the United States, yet it often isn’t recognized as a terminal illness.² Because it changes slowly, over years, it can be hard to see when the end of life is getting close, and families can find themselves making hospital decisions in a hurry. This note explains what research shows about the last stage of dementia, the guideline doctors use to decide when hospice fits, and what hospice adds for the person and the family.

The short answer

• In a study of nursing home residents with advanced dementia, more than half died within 18 months.²
• Eating problems, fevers and pneumonia were common in that last stage, and each was followed by high mortality over the next six months.²
• The hospice guideline for dementia looks for stage 7 on the Functional Assessment Staging scale, with specific losses, plus a serious complication in the past year.¹
• Residents whose families understood the prognosis were much less likely to go through burdensome treatments at the end of life.²
• Hospice comes to wherever the person lives, including a nursing home.⁵

What the research shows

The best-known study of the last stage of dementia followed 323 nursing home residents with advanced dementia, in 22 nursing homes, for 18 months.² Over those 18 months:

• 54.8% of the residents died
• 85.8% developed an eating problem
• 52.6% had a fever
• 41.1% had pneumonia

After pneumonia, a fever or an eating problem, a large share of residents died within six months.² Distress was common too: 46.0% had shortness of breath and 39.1% had pain.² In the last three months of life, 40.7% went through at least one burdensome intervention: a hospital stay, an emergency room visit, IV therapy or tube feeding.²

The finding that matters most for families came next. When the person’s health care proxy understood the poor prognosis and the complications to expect, the resident was far less likely to receive those burdensome interventions near the end.² Knowing what’s coming changes what happens.

The hospice guideline for dementia

The Medicare contractor that reviews hospice care in California publishes a guideline for dementia due to Alzheimer’s disease and related disorders.¹ It looks for stage 7 or beyond on the Functional Assessment Staging scale, the last stage on that scale, with all of these:

• Can’t walk without help
• Can’t dress without help
• Can’t bathe without help
• Loss of bladder and bowel control, on and off or all the time
• No consistently meaningful speech, with six or fewer words that can be understood

It also looks for at least one of these in the past 12 months: aspiration pneumonia, a kidney infection, sepsis, several deep pressure sores, fever that comes back after antibiotics, or not being able to eat and drink enough, with a 10% weight loss over six months or a low albumin level.¹

These are guidelines to help doctors, not a test the person has to pass.⁴ The coverage policy itself says some patients may not meet these guidelines, yet still have a life expectancy of six months or less.¹ Other illnesses, like heart failure or kidney disease, can add to the picture.¹

Changes families see near the end

• Eating less. Chewing and swallowing get harder, and the person may cough with meals or turn food away. Eating problems were the most common complication in the study.²
• Infections. Pneumonia and fevers come more often.²
• Breathlessness and pain. Both were common in the study.² A person with advanced dementia may not be able to say they hurt. Watch for frowning, moaning, guarding a part of the body, restlessness or pulling away during care, and tell the nurse.

Eating, and the feeding tube question

When eating gets hard, families may be asked about a feeding tube. The American Geriatrics Society’s guidance is direct: feeding tubes are not recommended for older adults with advanced dementia.³ Hand or spoon feeding provides the same nutritional benefits, and tube feeding can lead to harmful side effects, including worse pressure sores.³

Careful hand feeding takes time. Offer small bites of favorite foods, sit the person upright, and keep the room calm, since environments with less noise and clutter make eating easier.³ When eating slows near the end, comfort comes first: small tastes, sips and good mouth care.

The best time to decide about a feeding tube is early, before a crisis, guided by what the person said they would want.³

Questions to ask the doctor

The study’s lesson is that understanding the prognosis helps families choose care that fits.² Ask the person’s doctor directly, and bring the health care proxy with you.

• What stage is the dementia now, and what changes do you expect next?
• If pneumonia or a fever comes back, what would treatment involve, and what would it mean for comfort?
• Does the hospice guideline fit now, or could another illness count too?
• If it isn’t time yet, what should we watch for?
• Should we fill out a POLST now, so the person’s wishes travel with them?

Write the answers down, and share them with everyone who helps make decisions.

What hospice adds

Hospice care is usually given at home or wherever the person lives, including a nursing home.⁵ For dementia, the team brings:

• A nurse who manages pain, breathing and other symptoms, and comes out when something changes
• An aide who helps with bathing and personal care⁴
• A social worker and a chaplain for the family’s questions and the weight of a long goodbye
• Medicines and equipment for comfort, like a hospital bed, covered under the hospice benefit⁵
• Respite care, a short inpatient stay of up to five days in a row so a family caregiver can rest⁶
• Grief support for the family after the death⁴

With hospice, the first call when something changes goes to the hospice team, which can bring care to the bedside. Medicare requires a hospice to have nursing services, physician services, and drugs and biologicals routinely available 24 hours a day, 7 days a week.⁷