Caring for someone with schizophrenia without burning out

Caring for someone with schizophrenia is rarely a short effort. In a European survey of 1,111 family carers of people with severe mental health conditions, carers spent on average 22 hours a week caring, for about 15 years.¹ It shows in their health. Carers of people with schizophrenia have more anxiety, depression and sleep problems than people who care for no one.²

You can do a lot to protect yourself: notice overload early, use the help and time off you are entitled to, and make plans before a crisis rather than during one. Dutch guidance for relatives (opens in a new tab) puts the reason in its subtitle: a strong relative supports the recovery of the person they care for.³

Recognise overload early

Overload builds slowly, and much of it stays invisible. MantelzorgNL, the Dutch association for carers, points out that you are not only caring for someone, you are also worrying about them, and the worrying often goes unseen by others.⁴ Signs to take seriously:

• In your body: tiredness, headaches, pain in your neck, shoulders or back, or a change in appetite.⁵
• In your mind: poor sleep, constant worrying, guilt, trouble concentrating, or feeling tense and quick to become emotional.⁵
• In what you do: restlessness, irritability, drinking or smoking more, or using sedatives or stimulants.⁵
• In your life: doing more and more than you agreed to, while your social life shrinks.⁴

If several of these apply, act now rather than waiting until you can no longer cope.⁵ In the Netherlands, noticing overload in relatives in time is part of the job of every professional involved in your relative’s care, so you can raise it with them too.⁶

Look after your own health

• See your GP about yourself. You can talk to your GP or a social worker about how you are doing, not only about your relative.⁴
• Keep something of your own. Your own load affects the atmosphere at home. In a study of 50 relatives of people with schizophrenia, relatives who were critical or over-involved carried almost twice the burden of care, and relatives who went out to work were less likely to be in that position. The person’s symptoms made no difference.⁷ Warmth at home goes with a lower risk of relapse.⁸
• Learn about schizophrenia. Courses for families explain the diagnosis and teach practical ways of coping. They reliably improve families’ understanding of the situation and their ability to cope.⁹
• Meet other families. Support groups improved how carers experienced caring.¹⁰
• Train your attention. Mindfulness courses reduced carers’ stress in 13 studies.¹¹

Share the care

• Ask for specific help. Family and friends can take over a task, such as a weekly visit or a lift to appointments, if they know what you need.
• Ask your municipality. Dutch municipalities must support carers, for example with respite care or with practical and emotional support.¹² When your relative applies for support, the municipality usually holds an assessment meeting at home (keukentafelgesprek). Join it, and say what you need as well. If that is hard to say in front of your relative, you can ask for a separate meeting.¹² Some municipalities also help carers with practical tasks, such as housework.⁵
• Hand over the paperwork. Some supplementary health insurance policies pay for a carer’s broker (mantelzorgmakelaar), who takes over forms and arrangements for a number of hours a year.⁵
• Take breaks. Respite care (respijtzorg) lets someone else take over for a while,⁵ although many carers find it hard to arrange.^13,14 In the Netherlands, it can be funded through the municipality, the long-term care office (Wlz) or supplementary health insurance.¹⁵
• In Belgium, get recognised as a carer. Recognition (mantelzorgstatuut) is requested through your health insurance fund and opens the way to carer’s leave.¹⁶ The recognition that gives access to carer’s leave requires at least 50 hours of care a month and is valid for two years.¹⁷

Arrange time off work

Talk to your employer about your situation, for example about working flexible hours.⁵

In the Netherlands, employees have two kinds of care leave. Short-term care leave is up to twice your weekly working hours in 12 months, and your employer pays at least 70% of your salary. Long-term care leave is up to six times your weekly hours in 12 months, unpaid. If you work 32 hours a week, that comes to 64 hours of short-term and 192 hours of long-term leave. Your collective labour agreement may set different rules.^18,19

In Belgium, recognised carers working in the private sector can take carer’s leave, and the employer cannot refuse or postpone it. An allowance is paid through the RVA.¹⁶ For requests made from 1 July 2026, the leave lasts up to six months full-time, 12 months half-time or 30 months at one-fifth time per person you care for, up to the equivalent of six months full-time over your whole career.²⁰

Across the European Union, workers have the right to at least five working days of carer’s leave a year, although EU law does not require it to be paid.²¹

Make a plan with your relative and the team

The Dutch guideline for schizophrenia recommends that professionals provide care together with the family, unless there are serious reasons not to.²² You can refer to it when you ask the team to involve you. You also decide which role you take on; in the words of EUFAMI (opens in a new tab), the European federation of family associations, families have “the right not to be involved directly with their relative’s care.”²³

Agreements are easiest to make in a calm period, because a refusal made during a crisis does not necessarily reflect what your relative wants in the longer term.²⁴ Worth arranging:

• A plan for early warning signs. The Dutch guideline for schizophrenia also recommends that your relative, the family and the team draw up a personal plan (signaleringsplan) for recognising the first signs of a relapse. In a Dutch study, people felt more in control with such a plan, although it did not significantly reduce relapses.²⁵
• Whom to call, and what to do, when those signs appear.²⁶
• What the team may share with you, recorded in the file or on a crisis card.²⁴
• What you will and will not take on.²⁷
• Family intervention. In these meetings, your family and a trained professional work through everyday problems together. Across 32 trials in schizophrenia, it lowered the risk of relapse.²⁸ UK guidelines recommend at least 10 sessions over three months to a year.²⁶

In the Netherlands, professionals need your relative’s consent to share details of their treatment. Without it, they can still listen to you, give general information about schizophrenia and its treatment, and point you to support, including the family confidant (familievertrouwenspersoon).²⁹ You can always share your own worries and observations, in confidence.³⁰ In Belgium, your relative can name you as their trusted person (vertrouwenspersoon), who may receive information about their health if they explicitly ask for it; a written mandate is strongly recommended.³¹

Make a backup plan for yourself

If you fall ill or cannot be there, someone else needs to know what to do. MantelzorgNL suggests a simple one-page plan:³²

• what support is essential, and what can wait
• the agreements with your relative’s treatment team
• who lives nearby, can check in and has a key
• a folder with the medication list, the contact details of the GP and the treatment team, and other important phone numbers

Where to find support

In the Netherlands:

• Ypsilon runs an advice line, (088) 000 21 20, on Monday, Tuesday, Thursday and Friday from 10:00 to 16:00, open to non-members, and peer groups across the country.³³
• The family confidant service, independent and free: 0900 333 22 22.³⁴
• The Mantelzorglijn, for all carers: 030 760 60 55.³⁵

In Belgium:

• Similes Vlaanderen runs a listening line, 016 244 200, and peer groups.³⁶
• Similes Wallonie answers on 04 344 45 45, Monday to Friday from 9:00 to 16:00.³⁷

Peer groups for relatives in the Netherlands and Belgium are on the Find support (opens in a new tab) map.

You don’t have to do all of this at once. Pick one step and take it this week.