Comfort first
Path 2: Comfort first. The other path: Keep looking for causes.
- Ask the doctor, "Please refer us to palliative care." (Any stage. They keep every treatment.)
- Ask for a hospice talk before you think it is time. (The first talk is free and commits you to nothing.) How to start.
- Put the hospice number on the fridge. For symptoms they are already managing, call hospice before 911. (Care the team did not arrange can cost the full price.) Trouble breathing, chest pain, a seizure, or anyone in danger: call 911.
- Near Phoenix? Call Hospice of the Valley's dementia line, 602-636-6363. (Free help at home, at any stage.)
Two kinds of comfort help
| Palliative care | Hospice | |
|---|---|---|
| Who | Any stage of a serious illness, dementia included | Six months or less to live, if the illness runs its normal course |
| Other treatment | They keep every treatment, Path 1 doctors included | Treatment aimed at curing the dementia is not covered; other care is |
| Where | Hospital, nursing home, clinic or home | Where they live; a nurse and doctor on call day and night |
| Cost | Like doctor visits: 20% after the deductible. Medigap or Medicaid may cover it. | $0, up to $5 a prescription. Not room and board. |
| Sedating drugs | Ask what each is for. Say no, or ask for the lowest dose. | Often started within days. Ask the same questions. |
| Stopping | Most medicines can be lowered or stopped. Ask for a taper plan. | Only you or their agent can stop it. No waiting to come back. |
| What studies found | Far fewer hard treatments when families knew what to expect | Far more often died where they wanted. Pain was common either way. |
Why we say this: in nursing homes, about half got a Valium-type drug within days of starting hospice.
Not sure, or told "not yet" for hospice? Start with palliative care. (It can lead to hospice later. Medicare's guidelines picked out only 1 in 5 who died within six months.) getpalliativecare.org.
How to start, step by step
- Tell the doctor, "We want comfort first." (Or call a hospice yourself; it contacts the doctor.)
- Ask for the free talk with a hospice doctor.
- The doctors certify six months or less. (For dementia they look for FAST stage 7 plus a complication.)
- You sign, or their agent or guardian does. (With neither, Arizona's order: spouse, most of the adult children, parent, domestic partner, sibling, close friend.)
- Read the written list of what they will not cover. (Due within 5 days for starts since October 1, 2026. Ask about donepezil and memantine by name.)
- A nurse comes within 48 hours, sooner if you ask.
- Agree visits in days per week. (Ask when the bed, supplies and comfort kit will come.)
If it's just you: the Alzheimer's Association helpline, 1-800-272-3900, answers day and night.
Stopping, coming back, and live discharge
- Never sign a form to stop hospice that you did not ask for. (If you stop, days left in that benefit period are lost. Changing hospice, once per period, is not stopping.)
- Ask at the start: "What is your plan if she steadies?" (Recently, about 1 in 5 hospice patients left alive. In dementia, hospice at home made that far more likely.)
- Disagree with a discharge? Ask Medicare's quality organization for a fast review. (The hospice should give you a notice with the number.)
- Discharged? Ask the doctor that day for home health and palliative visits. (Regular Medicare restarts at once; hospice can restart when they qualify. It is not your failure.)
The four levels of hospice care
Every Medicare hospice must offer all four. Ask for the rare three by name.
- Routine home care: visits and the 24-hour line, wherever they live.
- General inpatient care: a short stay for symptoms home cannot manage.
- Inpatient respite: up to 5 days so you can rest. A 5% copay, capped at $1,736 in 2026. Not if they live in a facility.
- Continuous home care: nurses at least 8 hours a day in a crisis near the end, at home or in their facility. Not for caregiver exhaustion alone.
Choosing a hospice
Start with the four questions on choosing one, then ask:
- "How many people with dementia are you caring for now?"
- "How long have you been open? Are you accredited?" (New Arizona hospices have been under extra Medicare checks since July 2023, after fraud reports.)
- "How fast can you start? Where is your inpatient unit?"
- "How often do you give crisis-level care?" (In Medicare's data: Hospice of the Valley 1.7% to 2.4% of its days; Arizona 0.2%.)
- "What is in your comfort kit, and who teaches me?" (What to ask.)
- "If he gets pneumonia, what do you do?" (Both choices are faithful.)
- "Are you nonprofit or for-profit, and who owns you?"
- Never accept a gift for signing up, or "free" housekeeping. (Medicare's booklet names both as fraud warnings.)
Treat Care Compare's stars as one clue. (They come from family surveys. No rating means too few surveys.)
Help in the Phoenix area
- Hospice of the Valley, Supportive Care for Dementia: 602-636-6363. (Palliative help at home, any stage, free through a federal grant. A nurse or social worker answers day and night.)
- Hospice of the Valley hospice: 602-530-6900. (Nonprofit. Anyone can refer. Nine inpatient homes, including Levine Home, 3811 N. 44th St., with dementia expertise.)
- Banner Dementia Care Partners: 623-832-6500, option 6. (Medicare's GUIDE program: no cost in Maricopa and Pima counties with Original Medicare, outside a nursing home.)
- In the hospital? Ask for a palliative care consult. (Banner University Medical Center Phoenix, 602-839-2000, and six HonorHealth hospitals have teams.)
- A veteran? Phoenix VA main line, 602-277-5551. (Palliative care, and hospice at home or in its Community Living Center.)
GUIDE has limits. (Not for people on hospice, in Medicare Advantage, or living long term in a nursing home or memory care.)
Help near Payson
Hospice of the Valley and Banner's dementia program do not reach Gila County. These do:
- Compassus hospice, Payson: 928-256-4738. (The region's only inpatient hospice unit. Fewer week-long gaps in nurse visits than Arizona overall; 85% would recommend. For-profit.)
- For palliative care, ask your Payson doctor for the care-plan visit, code 99483. (It covers advance planning and palliative needs. Banner Health Clinic Payson, 928-596-4500.)
- Skilled nursing at home: Banner Home Care Payson, 928-596-4777. (Nonprofit, 4 stars; 83% would recommend.)
- Respite and support: Central Arizona Aging, 800-293-9393. (In-home respite in Gila County. Caregiver group: Banner Payson High Country Seniors, 1st and 3rd Wednesdays, 1:30pm.)
Arizona's orange form: no CPR
- Chosen no CPR? Ask the doctor or hospice for the Prehospital Medical Care Directive. (It tells EMTs and ER staff not to resuscitate. Orange paper only; an orange "Do Not Resuscitate" bracelet is allowed.)
- Their agent or guardian signs if they no longer can.
- Keep it on the fridge beside the hospice number. (Paid direct-care workers may follow it once a hospice plan of care is ordered.)
- Choosing CPR is faithful too. (Without the paper, the default is full intervention: medical lines in the late stage.)
The law: A.R.S. 36-3251.
Even to your old age, I will be the same, and I will bear you up when you turn gray. I have made you, and I will carry you; I will sustain you and deliver you.
Isaiah 46:4Our biases, out loud: we lean on Medicare's rules and mainstream US sources, and name Hospice of the Valley most because we could verify its programs; others may be as good. The AI assistant that helped research this leans toward establishment sources and hedged wording.
Checked 14 October 2026. Sources.