Caring for someone with dementia: the basics

In the early stage, many people still live on their own, drive, work and see friends. They may struggle to find words or names, lose valuable things, forget what they just read, or find planning harder. Family often notices before the person does.

What caregivers often do now

• Back the person up, rather than take over
• Help set up routines, reminders and automatic bill payments
• Make legal, money and care plans while the person can still take part
• Keep up the activities and friendships that matter to them

The middle stage is usually the longest and can last many years. The person may forget parts of their own history, get mixed up about the day or place, have trouble with bladder and bowel control, sleep differently, wander, or show changes in mood and behaviour.

Early in this stage it becomes unsafe for most people to be left alone, and they will need someone around the clock.

What caregivers often do now

• Notice what the person can still do, and break tasks into small steps
• Help with bathing, dressing and toileting
• Make the home safer and plan for wandering
• Start regular breaks, such as an adult day program or respite care

In the late stage, the person needs help with all personal care. Walking, sitting and later swallowing may become hard, and words may be few. People at this stage catch infections, especially pneumonia, more easily.

This stage can last a long time. A person who lives from age 70 to 80 with Alzheimer’s spends, on average, about 40% of that time in the severe stage.

Learn about the type of dementia, its stages and what tends to change. Knowing that forgetfulness is a symptom, not a choice, helps you respond with patience.

The Dementia: understanding it guide explains types, signs and how a diagnosis happens.

Early on, many people still dress, bathe and walk on their own, and some still drive, volunteer or work. Your role is often support, company and helping plan ahead, rather than hands-on care.

If the person you care for is in the early stage, the Living with early dementia guide is written for them, and may help you both.

The Alzheimer’s Association 24/7 Helpline (1-800-272-3900) can talk through what you are facing and connect you with local programs, support groups and free care consultations.

The sooner plans for the future are made, the better prepared everyone will be. Talking about wishes while the person can still share them avoids painful guessing later.

See “Legal and money planning, early” below.

Look over the home for dangers, and stay in touch with regular calls or visits. Watch for signs that more supervision is needed, such as missed meals or unpaid bills.

The Daily care & safety at home guide has a room-by-room checklist.

• Accept help when it is offered
• Connect with other care partners in a support group
• Keep time for your own rest, health and interests

The Caring for yourself as a dementia carer guide goes deeper.

When your partner has dementia, the relationship slowly changes shape. You may take over jobs they always did, lose the person you talked things through with, and wonder whether you still feel married.

What can help

• Keep small couple rituals that still work, like holding hands on a walk
• Let others do some hands-on care so you can still be a partner, not only a carer
• Look after your own health and appointments. Many spouse carers are older too

The Independence & care in later life guide has more on caring for a partner in later life.

Over a third of dementia caregivers in the U.S. are daughters, and about a quarter of dementia caregivers are also raising children. Many are working too.

Helping a parent bathe, or deciding they can no longer drive, can feel like the roles have flipped. It is common to ask yourself whether you still feel like a son or daughter, or more like a parent to your parent.

Children often sense that something is wrong before anyone tells them. They need simple, honest explanations and permission to have mixed feelings.

The “Sharing dementia care: family, kids & care staff” guide has words for each age and tips for visits. Young people doing a lot of caring may also find the Growing up too fast guide helpful.

Friends and wider family may not know how to act around someone with dementia. A short introduction helps, like “Hello George, I’m John. We used to work together.” Don’t correct or argue, and be patient when words are hard to find.

Practical ways to help

• Visit regularly, even if they don’t always remember you came
• Bring music or a photo album instead of relying only on talk
• Offer a specific job: a meal, a ride, or an afternoon so the main carer can rest

Home care aides, nurses and care home staff often see the person more hours a week than family does. Good dementia care starts with knowing the person, not only the diagnosis.

The “Sharing dementia care: family, kids & care staff” guide has a section for care staff on person-centred care, hurtful words and shift handoffs.

Person-centred care means building care around the individual through a real relationship. Their life story, habits and preferences tell you what is likely to calm or upset them.

The “All about me (for care staff)” worksheet in the “Sharing dementia care: family, kids & care staff” guide helps you write this down.

Look for strengths and build on them. Someone may no longer manage bills alone but can still balance a checkbook while you give it a final look.

As things change, break tasks into small steps so they can keep doing parts of them.

• Safety first: step in at once if there is real danger
• Assume they can do it, and look for the cause of frustration before taking over
• Agree on a signal or phrase that means “I’d like help now”
• Ask what support they want, and keep checking it still feels right

A planned day means less time deciding what to do and more time for things that matter. Regular wake-up and bed times can also help with sleep problems and late-day restlessness.

The Daily care & safety at home guide shows how to build a daily routine.

Offer choices, talk to the person rather than about them, and avoid baby talk. Losing independence and privacy can be very hard, so encourage them to do as much as they can.

• What stage do you think we are in, and what changes should we expect next?
• Could pain, an infection, constipation, poor sleep or a hearing or vision problem be behind these changes?
• When should we call you, and when should we go to the ER?
• Can you refer us to a social worker, occupational therapist or physical therapist?
• Is there a dementia care program or care navigator we can use?
• Who can I talk to about my own stress as a caregiver?
• Please ask the care team about treatment options.

Hearing loss, poor eyesight and mouth pain can make confusion, communication and eating harder. Keep up regular hearing, eye and dental checks.

Ask the person, while they are able, to sign a release so their doctors can speak with you. This is especially important if you live far away.

This lets the person name a trusted agent to manage money and property. “Durable” means it still works after the person loses the ability to decide. Naming a backup agent is wise.

The person keeps the right to make their own choices for as long as they legally can.

This names someone to make health decisions, like choosing doctors, treatments and where to receive care, when the person no longer can. Couples who aren’t legally married can be left out without it.

The “Planning ahead: wishes, advance directives & legacy” guide explains living wills and health care proxies in more detail.

A living will says what treatment the person would or wouldn’t want near the end of life. Medical orders, often called POLST or MOLST forms, turn some of these wishes into instructions for emergency staff.

In late dementia, swallowing problems can lead to pneumonia. Talking early about whether the person would want comfort-focused care or hospital treatment spares families painful guessing later.

A will names an executor and who receives the estate, and only takes effect after death. A living trust names a trustee to manage property, and may help avoid probate depending on state law.

If the person can no longer sign documents, a court may need to appoint a guardian or conservator. This takes time, needs an attorney and a court hearing, and the rules vary by state. Early planning can often avoid it.

Families who can’t afford a lawyer can ask the Eldercare Locator, state legal aid offices or local bar associations for help.

Warning signs

• Unopened or unpaid bills
• Lots of new purchases or unexpected deliveries
• Money missing from accounts
• Signatures that don’t look right, or papers signed without understanding

Protective steps

• Set up automatic bill payments
• Lower card limits and cancel unused cards
• Keep small amounts of cash on hand
• Have a trusted person check statements every month
• Add their number to the National Do Not Call Registry

If you suspect a scam, call the National Elder Fraud Hotline at 1-833-372-8311, or your local police.

Anyone can call: caregivers, family, friends, care staff and people living with dementia. Calls are confidential, and help is offered in more than 200 languages. Deaf, hard of hearing or speech-impaired callers can dial 711 for relay.

They can help with

• Behaviour changes, communication and safety
• Caregiver stress
• Care planning, respite, housing and care options
• Legal and money planning
• Free one-on-one care consultations with a dementia expert

A free U.S. government service that connects you to your local Area Agency on Aging for meals, in-home help, transport, adult day care and respite.

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

Offers fact sheets in several languages and helps caregivers find services in their state.

• MedicAlert + Alzheimer’s Association Safe and Found: 1-800-432-5378 (a fee may apply)
• National Elder Fraud Hotline: 1-833-372-8311 (weekdays, 10am to 6pm ET)