Later stages & care decisions

• Assisted living: rooms or apartments with help for daily tasks. Some have special dementia (memory care) units.
• Group homes: a few residents with a caregiver always on site. They may not be inspected.
• Nursing homes: for people who need ongoing medical care. Some have dementia units with specially trained staff. They are inspected by states.

Watch for

• Do staff speak to residents with patience and respect?
• Do residents look clean and cared for?
• Does it look and smell clean? Are mealtimes calm?
• Is there a safe place to go outside?

Ask

• How many staff are trained in dementia care?
• What is a typical day like for someone with dementia?
• What does the fee include, and what costs extra?
• How often does a doctor visit? How do residents get to appointments?

Talk with other families who have someone living there. Medicare’s Care Compare tool and the Eldercare Locator can help you compare places.

• Meet staff before the move and share the person’s life story
• Bring familiar things: photos, a blanket, a favourite chair
• Listen to their worries, but don’t argue about why they need to be there
• Expect some extra confusion, poor sleep or wandering at first
• Visit regularly and build a partnership with staff

For residents’ rights and the free Long-Term Care Ombudsman program, see the Independence & care in later life guide.

Many families feel loss, sadness, guilt and even relief around a move. All of these are okay. A social worker can help you through it.

Remember

• You are still their caregiver. Your role changes, it doesn’t end
• You become their advocate and the person who knows them best
• Your visits can be about connection, not chores
• Choosing safe care is an act of love

• Hospital stays and doctor visits
• Skilled nursing home care for up to 100 days, in limited cases
• Hospice care at home, in a care home or in a hospice setting
• A cognitive assessment and care planning visit after a diagnosis
• A yearly wellness visit

Medicare does not pay for long-term care, also called custodial care: help with everyday tasks like bathing, dressing and eating, at home or in a nursing home. Since most long-term care is non-medical, most health insurance doesn’t cover it either.

Medicaid is run by each state for people with very low income and savings, including people who have used up most of their own money on care. For people who qualify, it covers all or part of nursing home costs, and most states also offer care at home.

Good to know

• Rules and limits differ by state
• Special rules help protect a spouse who still lives at home
• Not every nursing home accepts Medicaid, so ask early
• Talk to a legal adviser before giving away money or property, because strict rules apply

GUIDE is a Medicare dementia care model that began in July 2024. Participating programs offer care navigation, a 24/7 support line, caregiver training and respite of up to $2,500 a year for eligible people.

Ask the care team whether a GUIDE program is available near you. Eligibility varies.

Besides Medicaid, private long-term care insurance may help pay. Otherwise, families pay for long-term care themselves, often from savings.

The Caring for someone with dementia: the basics guide covers legal documents and money safeguards.

• Insurance cards and ID
• The care team’s current health summary and contacts
• Copies of advance directives
• A personal information sheet about the person
• A comfort item, like photos or a spiritual object
• A change of clothes, glasses and hearing aids

• Tell staff the person has dementia and how best to talk with them
• Explain what is normal for them, so staff can spot sudden change
• Mention any history of wandering, falls or seeing things
• Agree who will help with eating, bathing and toileting

• Have family, a friend or a hired carer stay as much as possible, including overnight if allowed
• Ask for a private room if insurance covers it
• Help them eat and drink. Older adults can become undernourished in hospital
• Help them get up and move when it is safe
• Turn down the TV and noise, and label the bathroom door
• Take breaks for yourself

Ask to talk with a discharge planner soon after admission. Ask about home health care, equipment, or a short rehab stay. Expect the person to need more help for a while after they get home.

• Ask a nurse or physical therapist to show you how to move the person safely
• Change position at least every two hours when sitting, and every hour when lying down
• Use pressure-relieving cushions and mattress pads
• Watch for red or darker skin on heels, hips, lower back and the back of the head
• Protect your own back: bend your knees and don’t twist

• Offer small amounts of soft food
• Sit beside them, not in front, and keep them upright
• Wait until they have swallowed before the next bite
• Use small sips from a cup instead of a straw
• Keep them sitting up for at least 20 minutes after eating

Choking can lead to pneumonia. Ask the care team for a swallowing check if eating seems hard.

• Groaning, sighing, moaning or crying
• Grimacing when touched
• Guarding a part of the body or sitting in an unusual way
• New agitation, restlessness or refusing food

Ask the care team for a pain check and a comfort plan.

• Tell a story or show photos
• Gentle touch or hand massage
• Familiar music, nature sounds or prayers
• Simply sitting with them

• Care for pain and other symptoms, with equipment
• Emotional and spiritual support
• Respite to give caregivers a break
• Grief support for the family
• Staff on call 24 hours a day

Teams can include doctors, nurses, aides, social workers, counsellors, clergy and volunteers.

Under Medicare, a doctor must certify that the person likely has six months or less to live if the illness runs its usual course. Hospice can be stopped at any time, and can continue past six months if the person still qualifies.

Hospice is usually covered by Medicare, and often by Medicaid and private insurance.

• Do you have a 24/7 phone line?
• Have you cared for people with dementia?
• How long have you been operating?
• What comfort services do you offer?
• Are you Medicare certified?

Ideally, talk about end-of-life wishes while the person can still share them, including whether they would want comfort-focused care or hospital treatment if they got very ill.

In late dementia, swallowing problems can lead to pneumonia. Ask the care team what to expect, and what the choices are, before a crisis comes.

When the person dies, carers often feel sadness, relief, loss of purpose and guilt all at once. These are normal. Hospice grief support is there for families.

The “Grief: understanding loss” guide and the When caregiving ends guide (on life after caregiving ends) can help in the months that follow.

Free and confidential, day or night, in more than 200 languages. Staff can help with care planning, housing and care options, legal and money planning, and caregiver stress. Callers who are deaf or hard of hearing can use 711 relay.

A free U.S. government service that connects you to your local Area Agency on Aging, legal aid and other local services. Medicare’s Care Compare tool can help you compare nursing homes.

Staff answer questions about Alzheimer’s and related dementias and refer callers to local and national resources.