Sharing dementia care: family, kids & care staff

1. Share what the doctor and main carer are seeing now.
2. List every task, from bathing to bills to the weekly call.
3. Let each person choose tasks that fit their skills, time and distance.
4. Agree how you will keep each other updated.
5. Set a date to meet again. Needs will change.

Free online care calendars let family, friends and neighbours sign up for visits, rides and meals. Ask for something specific, like “Can you sit with Dad on Tuesdays from 2 to 5?”

Caring for someone with memory loss often raises conflict between spouses, siblings and stepfamilies. People may disagree about how bad things are, what to spend, or who should do the caring.

Ideas that help

• Ask relatives who live far away to cover a week now and then, so the main carer gets a real break
• Invite the doctor or a social worker to join a family conference
• Notice unspoken rules, like “only daughters do the caring”, and question them
• Focus on what the person with dementia would want
• Talk to a counsellor or another caregiver about your own feelings before they boil over

• Does the person want to move? What about their spouse?
• Can your home be made safe, and will someone be home?
• How does everyone else in the household feel?
• How will it affect your job, money, children and health?
• What respite is available nearby?

The word “dementia” may mean nothing to a young child. Start with something they have seen, like Grandma forgetting their name.

Words you could use

• “Grandma has an illness in her brain that makes it hard to remember things.”
• “It’s not because of anything you did. You can’t catch it.”
• “She still loves you, even when she forgets your name.”

Older children often have more questions. Ask what they already know and what worries them, then give a clear, simple explanation. Correct anything they have misunderstood.

Tell them sadness, anger and embarrassment are all normal. There is no right way to feel.

Teens can usually understand dementia, but they may need more emotional support, especially alongside exams and friendships. Let them lead on how much they want to know and how.

• Point them to trustworthy sources. There is a lot of misinformation online
• Expect some embarrassment about the person’s behaviour in front of friends
• Offer roles they can choose, like making a music playlist, but don’t make them a stand-in carer

• Prepare them: “Grandpa might not remember your name today. That’s the illness.”
• Keep visits short, and pick the person’s best time of day
• Bring an activity: simple crafts, music, a photo album or a storybook to read aloud
• Show children how to talk kindly. They copy the tone adults use
• Let them step out if they feel overwhelmed

• Don’t ask a young child to look after or “babysit” the person with dementia
• Protect time for friends, school, play and homework
• Spend one-on-one time with each child
• Be honest about your feelings without overwhelming them

Some children don’t talk about their feelings but act out at home or school instead. Let them know they can always come to you, and loop in the school counsellor if needed.

• Is there fresh food, and are they eating regular meals?
• Are bills paid, or is there a pile of unopened mail?
• Has the home or their appearance changed?
• Is driving still safe?
• How is the local caregiver coping?

• Neighbours and friends who can drop by and call you
• The doctor’s office, with a signed release so they can talk to you
• The local Area Agency on Aging for meals, chores and transport
• Faith and community groups for visits and rides
• A geriatric care manager to assess needs and arrange services

• Book doctor, lawyer or bank appointments for when you are in town
• Talk to neighbours and local family about any changes
• Give the local carer real time off
• Leave time just to be together: music, a walk, an old film

Start with a short introduction, like “Hello George, I’m John. We used to work together.” Don’t quiz them with “Do you remember me?”

• Approach from the front and use their name
• Speak slowly, one idea at a time
• Be patient when words are hard to find
• Don’t correct or argue

• Visit regularly, even if they don’t always remember you came
• Bring music, a photo album or a simple activity
• Keep visits short, at their best time of day
• Go for a slow walk or sit outside together

• Bring a meal, or do a grocery run
• Give a ride to an appointment
• Sit with the person for an afternoon so the carer can rest
• Sign up for a regular slot on a shared care calendar

Dementia caregivers often feel alone and worn down. Ask how they are doing, listen without judging, and keep inviting them out, even if they often say no.

A one-page profile helps staff see the whole person. The Alzheimer’s Society’s “This is me” leaflet records background, important people and places, likes, dislikes and routines, and can be used at home, in hospital or in a care home.

Useful to know

• The name they like to be called
• Their work, family and the places that matter
• Daily routines: when they wake, bathe and eat
• What upsets them, and what calms them
• How they show pain or needing the bathroom without words

People with dementia may accuse staff of stealing, call them names or not recognise someone they saw yesterday. These words can sting, but they come from confusion and fear.

Ways to protect yourself

• Remind yourself: “This is the disease talking.”
• Step back, breathe and come back in a few minutes if it is safe to do so
• Talk it through with a colleague or supervisor after a hard shift
• Report physical aggression, and follow your workplace safety plan

The Healthcare workers guide and the Looking after yourself in care work guide have more on looking after yourself in caring jobs.

A change in caregiver or setting can bring temporary increases in confusion, sleep problems or wandering. Staff turnover in dementia care is high: about 79% a year for home care workers and 99% for nursing home aides.

A good handoff covers

• Mood and behaviour this shift, and what helped
• Eating, drinking, toileting and sleep
• Any signs of pain, falls or sudden change
• What the family asked or shared
• What the next person should watch for

Family members may feel guilt, grief or worry, and it can come out as criticism. Building a relationship as care partners helps everyone.

• Ask families for life-story details and what works at home
• Share good moments, not only problems
• Explain changes calmly and invite questions

The Alzheimer’s Association runs free support groups, led by trained facilitators, in person and online. Many areas have groups for adult children, spouses, children and people with early-stage dementia.

ALZConnected is its free online community, where people living with dementia, caregivers, family and friends can ask questions and share advice.

Telling a faith community about the dementia helps people keep reaching out. Familiar worship, prayer and sacred music can still bring comfort.

Faith and community groups can also help with visits and rides.

Your local Area Agency on Aging can connect you with meals, in-home help, transport, adult day programs and respite. Find it through the Eldercare Locator (1-800-677-1116).

Some communities run concerts, choirs and other activities for people with memory loss and their families. Ask your local Alzheimer’s Association chapter or Area Agency on Aging.

Anyone can call, any time: caregivers, family, friends, care staff and people living with dementia. Free and confidential, in more than 200 languages, and staff offer free one-on-one care consultations. Callers who are deaf or hard of hearing can use 711 relay.

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

A free U.S. government service that connects you to your local Area Agency on Aging, which can help long-distance families arrange local support.