When they can't get up anymore

Before the very end there is often a long stretch, weeks or years, when the person you love is mostly in a bed or a chair.

Losing the ability to walk is the illness advancing, not your failure. Doing this alone now stops being physically possible, and there is more free help for it than for anything else in dementia care: the help that already exists.

Their skin is the fragile part now

Pressure sores are far easier to prevent than to heal. Skin pressed against a mattress or chair too long loses its blood supply and starts to die, sometimes within hours, under clothing, with no complaint from someone who can no longer report pain.

Look every day where bone sits close to the surface: heels and ankles, knees, hips, tailbone, spine, elbows, shoulders and shoulder blades, the back of the head, the ears. Do it at the morning wash or the evening change.

Look for a discolored patch that does not change color when you press it. Healthy skin goes pale under your finger and colors back. The patch is usually red on white skin, and more often purple or blue on brown or black skin.

On darker skin, color is the least reliable signal, which is why these sores are found later and deeper in Black and brown patients. The federal Agency for Healthcare Research and Quality warns that color changes may be particularly hard to see there. Three checks that do not depend on color:

• More light than you think you need: a penlight or phone torch for the heels and the tailbone.
• Know their normal, and compare sides: one heel against the other, one hip against the other.
• Use your hand: a patch warmer or cooler than the skin around it, or hard, spongy, boggy or swollen.

What to do, and what not to:

• At the first mark, take all pressure off that spot, and tell the doctor or nurse. (Caught early it usually settles. Left alone it can go down to muscle and bone.)
• Do not rub or massage a reddened area, or massage lotion into it. Smooth moisturizer gently over bony places instead. (Rubbing damaged tissue makes it worse.)
• Wash gently with a soft cloth, no scrubbing, then blot dry. (Talc and strong soaps dry and irritate fragile skin.)
• Clean and dry the skin right after any incontinence, every time, and ask the doctor or pharmacist which barrier cream to use. (Moisture speeds the damage. Never skip this, even on days you skip everything else.)
• Keep the sheets smooth, dry and empty. (A pen, a hearing-aid case or a bunched-up seam under a hip does real damage overnight.)

Call the doctor the same day if a sore is painful, hot, swollen or draining pus, if the skin has broken open at all, or if there is a fever with it. That combination is an infection, not a slow-healing patch.

Turning them: the two-hour rule nobody can keep

Changing their position is the prevention. Trusted sources give different numbers:

• Alzheimer's Association: change position at least every two hours.
• National Institute on Aging: at least every two hours sitting up, at least every hour lying down.
• MedlinePlus: every one to two hours in bed. In a chair, small weight shifts every fifteen to twenty minutes.

At least every two hours is the floor everyone agrees on. Their nurse should set the schedule for their skin, mattress and risk.

No one person can turn someone every two hours, around the clock, for months. That calls for a pressure-reducing mattress, a hospital bed and other hands in the house: what is covered.

What makes each turn easier and safer:

• Changing the angle counts; a full roll is not always needed. Prop with pillows to take the weight off the spot that carried it, with a pillow between knees and ankles on their side.
• Float the heels on a pillow under the calves. Never under the knees, which pushes the pressure back onto the heels. (Heels are the second most common place these sores start.)
• Keep the head of the bed at about thirty degrees or lower when you can. (Propped high, the body slides down, and sliding tears the skin over the tailbone.)
• Move them on a draw sheet, with two people. That is a strong flat sheet folded under them from shoulders to thighs. (Dragging breaks skin.)
• Skip donut-shaped cushions, though they are sold everywhere. Use a foam or gel cushion sized to the chair, and ask about a pressure-reducing mattress or overlay for the bed.

Your back is the other patient

One wrenched back ends two people's life at home. These moves are the National Institute on Aging's, for moving someone with dementia:

• Bend at the knees and straighten with your thigh muscles. Back straight, no bending at the waist, no twisting; take small steps to turn.
• Hold them close to your body, feet apart or one in front of the other. (Reaching away from yourself is where backs go.)
• Never lift by pulling on their arms or shoulders. (Those joints tear, and it hurts them.)
• Give them a washcloth to hold while you move them. (Hands that hold something do not grab you or the furniture.)
• If they are weak on one side, stand on the weak side as they change position.
• Know your limit before you start a lift, and put on any brace or belt beforehand.

Ask for the free lesson at home. Medicare's covered home health includes "patient and caregiver education": a physical or occupational therapist can show you how to move this person, in this room, with this bed.

A hospital bed that raises to your height saves your back a hundred times a week. Getting one covered · what to buy yourself.

Joints that freeze: the ten minutes that prevent it

When someone stops moving, their arms and legs can slowly draw up and lock. This is a contracture: painful, permanent once it sets, and it makes washing, dressing and turning harder.

Gently move each arm and leg through its normal range, two or three times a day. (The Alzheimer's Association's advice. Right after a bath, while skin and muscles are warm, is easier and more comfortable.) Ask the doctor first, and ask for a physical therapist to show you once. (Technique decides whether it helps or harms. The visit is covered home health.)

Between sessions, pillows keep arms and legs from curling into one shape for hours, hands from staying clenched and feet from staying pointed.

The mouth is a lung problem

People in the late stage are especially prone to infection, pneumonia most of all, and good oral hygiene reduces the mouth bacteria that can lead to pneumonia (Alzheimer's Association). Chapter 3 calls brushing chest medicine. Now you do it for them:

• Brush after each meal with a soft toothbrush. If brushing is impossible or resisted, clean the gums, tongue and inner cheeks with a moistened gauze pad.
• Dentures out and cleaned every night, and check they still fit. (Weight loss changes the fit; a loose plate makes eating painful and unsafe.)
• For a dry mouth: ice chips if they are awake and alert, or wipe inside the mouth with a damp cloth, cotton ball or treated swab. Balm or petroleum jelly on the lips. (National Institute on Aging.)
• For eyes that no longer blink and clear normally: a dab of eye cream or gel around them, or a damp cloth over closed eyes.

If a day comes apart, drop something else. (This is two minutes against the illness's most common ending.)

Eating less now, or asked about a feeding tube? Read this before you decide. Eating less: the feeding tube question.

Pain they can't tell you about

By now most people cannot say "it hurts", and untreated pain is one of the quiet cruelties of late-stage dementia. Read pain and illness off the body:

• Groans, sighs, or crying out.
• Grimacing or wincing, especially when touched or moved.
• New agitation, aggression, trembling, or shouting.
• Lying in an odd position that guards one part of the body.
• Sleep that falls apart.
• A pale or flushed face, dry pale gums, mouth sores, swelling anywhere, or skin that feels feverish.

A new behavior in someone who cannot speak is a message. Pain, infection, a full bladder and constipation are the first four suspects, before anyone reaches for a sedative. Chapter 4 teaches the detective method; the medicine review names the drugs that make this worse.

Ask the doctor: "Would regular scheduled pain relief serve him better than as-needed?" (As-needed depends on somebody asking, and this person can no longer ask.) New muscle jerks or spasms? Tell the doctor promptly. (They have their own causes and treatments.)

Ask for the free help most families never claim. (Medicare home health, equipment, and hospice and what it measures.) The help you can claim. If it's just you, call the Alzheimer's Association helpline, 1-800-272-3900. (Staffed every hour of every day.)

What still reaches them

Speech usually goes in the late stage, but research tells us some core of who they are remains. Treating them as present is not fooling yourself. The world now comes mostly through the senses, so that is where you knock:

• Their own music, played not just on but for them.
• A few lines read aloud from a book that meant something.
• Old photographs held where they can see them.
• A favorite scent in the lotion you rub into their hands.
• Their hair brushed.
• A favorite taste on the tongue, even a spoonful.
• The window open, or the chair wheeled outside on a good afternoon.

This is the real care, and the part only you can do: anyone can be taught turning and washing, but no one else is the voice they have known for fifty years. On days the tasks swallow everything, ten minutes of hand-holding with the music on is the point of it all.

Verified July 2026. Skin, positioning, joint and mouth care: the Alzheimer's Association's late-stage guidance, the National Institute on Aging and MedlinePlus. Non-color skin checks: the Agency for Healthcare Research and Quality, with the red-versus-purple detail from the NHS. Home health, equipment and costs: medicare.gov. This is caregiving guidance, not medical advice; the nurse who sees your person's skin knows things this page cannot.