Sharing care with siblings and family

Dementia care is usually a family job. Nearly 13 million people in the United States give unpaid care to someone living with dementia. About 6 in 10 of them say their emotional stress is high or very high.¹ Much of that stress comes from carrying the load alone, or from not agreeing on what to do.

This page shows you how to bring family together, split up the work, handle disagreements, and talk about money. The goal is not a perfect family. The goal is good care for the person, and a main caregiver who does not burn out.

Why sharing care is hard

In most families, one person ends up doing most of the care. Often it is a spouse, or the adult child who lives closest.⁶ Other relatives may live far away, have young children, or have demanding jobs. Some may simply not see how much help is needed.

This can lead to strong feelings on all sides. The main caregiver may feel worn out and resentful. Brothers and sisters may feel left out of decisions or not kept up to date.³ Old childhood roles and rivalries can come back, too.³

Some relatives deny that anything is wrong. Denial can be a way of not facing the loss of a parent. It can be very frustrating for the people doing the daily work.³ If you are feeling sadness for someone who is still here, see grieving someone still here.

These reactions are common. They do not mean your family is failing. They mean you need a plan.

How to hold a family meeting

A family meeting is a planned talk about the person's needs and who will help with what. One person usually starts the process.²

1. Decide who to invite. Include everyone who helps now or may help later. This can include close friends, neighbors or a paid aide.²
2. Decide whether the person with dementia attends. Some families meet first without the person to talk about hard topics. Then they hold a second meeting with the person present.² In the early stage, the person can often share their own wishes. Their voice matters.
3. Pick a time and place. Choose a quiet, comfortable spot with few distractions. Let far-away relatives join by phone or video.²
4. Send an agenda ahead of time. Ask others to add topics. This helps people come ready.²
5. Start with facts. Share the latest report from the doctor. Describe a typical day and what has changed.
6. Let everyone speak. Then list the problems before trying to solve them.²
7. Make a task list and assign jobs. Write down who will do what, and by when.
8. End on time. Close with a short summary and set the date for the next meeting.²

What to put on the agenda

Family Caregiver Alliance suggests topics like these:²

• The latest medical news and what to expect next
• What the person with dementia wants and needs
• Daily care, and whether the person may need to move in with family or into a care home later
• How much time each person can give
• Money: care costs, lost work time, and outside help
• Who makes medical and money decisions, and how
• What the main caregiver needs, such as breaks, meals, errands or someone to talk to

You do not need to cover everything at once. Pick two or three topics per meeting.

Keep meeting over time

Dementia changes over time, so the plan will need to change too. Many families meet on a schedule, such as once a month. They also meet when something big happens, like a fall or a hospital stay.²

After each meeting, send a short written summary of who agreed to what. A shared calendar, group text or email list helps keep everyone up to date.² Our care circle tool can help you list helpers and tasks in one place.

Dividing the work

There are many ways to help. Not all of them are hands-on. Match each job to each person's skills, time and other duties.^3,6

People who live far away can still do a lot. They can manage bills online, research services, set up respite care, or come to stay so the main caregiver can rest.⁶ See long-distance caregiving for more ideas.

Tips for asking for help

If you are the main caregiver, asking can feel hard. Many caregivers say later that they did too much alone.⁶

• Make a list of tasks, big and small. Let people choose what they want to do.⁶
• Break big jobs into small pieces.⁶
• Be specific: "Can you take Mom to her Tuesday appointment?" works better than "I need help."
• Expect some people to say no. Try not to take it personally.⁶

If you are not the main caregiver

Ask the main caregiver what would help most. Then do it, on time. Call or text often, even when you cannot help in person.⁶ Do not second-guess daily choices from far away. If you have concerns, raise them kindly and privately, or at the next family meeting.

When there is conflict

Some disagreement is normal. Families often argue about where the person should live, how much help to hire, money, or whether the person is "really that bad."

These steps can help:

• Stick to one or two issues at a time. Long-standing family problems will not be solved in one meeting.²
• Try a plan for a set time. For example, "Let's try adult day care three days a week for two months, then talk again." A trial feels less final than a forever decision.²
• Accept "good enough." Waiting for a perfect solution can stall everything.²
• Bring in a neutral helper. A social worker, counselor, faith leader, care manager, or hospital discharge planner can lead the meeting. This helps most when there is a history of conflict or a crisis.^2,3
• Let go of what you cannot control. You cannot make a sibling help. You can control how you respond, and you can look for outside help instead.³

The Alzheimer's Association Helpline at 1-800-272-3900 is free and open 24 hours a day, every day. A care consultant can help you make a plan, and interpreters are available in more than 200 languages.⁷

If arguments are taking a toll on your mood or health, read caregiver stress and burnout and setting boundaries as a caregiver. Counseling or a support group can help, too.²

Talking about money

Money is often the hardest topic. Raise it early, before a crisis. Families bear about 70% of the total lifetime cost of dementia care, through out-of-pocket costs and the value of unpaid care.¹ For typical prices, see what dementia care costs.

Questions to talk through

• What income, savings and insurance does the person have?
• Who will pay bills, and who can see the accounts?
• Will family members chip in? If so, how much, and is it a gift or a loan?
• Will anyone be paid for giving care?
• What happens if the person's money runs low? Could Medicaid help later?

Get the legal papers in place

While the person can still make decisions, help them sign a durable power of attorney for money and an advance directive for health care. These name who can act for them later. Without them, a family may have to go to court for guardianship.

The Consumer Financial Protection Bureau (CFPB) has free guides for people managing someone else's money. There are guides for agents under a power of attorney, court-appointed guardians, trustees, and people who handle Social Security or VA benefits for someone.⁵ They are a good shared starting point for the whole family.

Paying a family caregiver

Some families pay a relative who gives up work to give care. A personal care agreement is a written contract that spells out the caregiver's tasks, hours and pay.⁴ It can help prevent fights over money and inheritance.⁴

Family Caregiver Alliance notes some key points:⁴

• The agreement should be in writing and signed.
• Pay should be for future care, not for care already given.
• Pay should be fair. That means no more than a local agency would charge for the same work.
• The caregiver may owe taxes, since this is treated like a job.
• Medicaid looks back at money given away or spent, for up to five years. A well-documented agreement can show the payments were for real care, not a way to hide money.

Rules differ by state. Talk with an elder law attorney before you sign, especially if the caregiver also holds the power of attorney.⁴ For tax help, see tax help for caregivers.

Common questions

Should the person with dementia be part of family meetings?

Often, yes, especially in the early stage. They have the right to share their wishes about care, money and where they live. Some families hold a short first meeting without the person to sort out painful topics, then include them.² Keep the meeting calm, short and focused. See talking with someone who has dementia.

My sibling refuses to help at all. What can I do?

Tell them clearly what you need, and offer small, specific jobs. Some people help more with money, paperwork or phone calls than with hands-on care.³ If they still say no, try to let it go and look for outside help, such as respite care, adult day care or in-home care.³

Is it fair for the caregiver to get paid from Mom's or Dad's money?

It can be, if the family agrees and it is done properly. A written personal care agreement, fair pay and good records protect everyone. They also matter if the person may need Medicaid later.⁴

I work full time. How can I help?

You can still take on tasks like bills, research, rides on weekends, or regular calls. See working while caregiving for leave rules and other options. If you also care for children, see caring for parents and children at once.

For more on every part of the caregiving journey, go back to caring for someone with dementia.

When to get help

• Someone is in danger right now: call 911.
• You or a family member is in emotional crisis or thinking about suicide: call or text 988, any time.
• You think a family member or anyone else is taking the person's money, neglecting them or hurting them: in Virginia, call the Adult Protective Services hotline at 1-888-832-3858, open 24 hours a day.⁸ In other states, contact your local adult protective services.
• You need local services for older adults and families: call the Eldercare Locator at 1-800-677-1116 to find your Area Agency on Aging.⁹
• You need dementia advice or a care plan: call the Alzheimer's Association Helpline at 1-800-272-3900.⁷

Education only. This page is general information written from the sources listed. It is not medical, legal or financial advice and does not replace a doctor, therapist or lawyer who knows your situation. How we write and check pages.