Looking after yourself as a carer

What carer burnout looks like

Carer burnout is the cumulative result of unrelenting demand, disrupted sleep, social withdrawal and grief. It is common: studies of family carers of people with dementia consistently find rates of depression and anxiety at two to three times the general population, with measurable effects on cardiovascular risk, immune function and life expectancy.

Recognising the signs early matters:

• Persistent exhaustion that does not lift with a night's sleep;
• Loss of interest in things you previously enjoyed;
• Withdrawing from friends and family;
• Sleep disturbance, particularly early waking;
• Irritability with the person you care for or with others;
• Recurrent physical symptoms (headaches, back pain, gastrointestinal upset);
• Changes in eating or alcohol intake;
• Feelings of guilt, resentment, or being trapped.

If two or three of these are present and persistent, you are not coping well; you are burning out. Help exists and is appropriate.

The foundations of self-care

Sleep

Sleep deprivation is the most common driver of carer burnout. If the person you care for wakes through the night, your sleep gets cut. Practical steps:

• Use night-time respite or a paid carer for two nights a week if you can afford it; the difference is often dramatic;
• Sleep in a separate room where this is possible and safe;
• If the person has REM Sleep Behaviour Disorder, treating it (see sleep disturbance) often helps both of you;
• If you are not sleeping, see your GP. Insomnia is treatable; chronic sleep deprivation accelerates everything bad.

Exercise

30 minutes of brisk walking most days reduces depression, anxiety and cardiovascular risk by margins similar to medication. A walking group or class adds the social element. See exercise.

Nutrition

It is easy to skip meals, default to convenience food, or cook only for the person you care for. Build in three regular meals, prioritise vegetables and whole grains, and keep up your fluid intake.

Alcohol

Alcohol intake often increases in carers. Within the UK 14-unit weekly limit is the sensible target. If you find yourself drinking to cope, that is a sign to seek support.

Time off, properly

"I cannot leave them" is the universal carer line. With planning, almost everyone can. The options:

• Daytime respite: a friend or family member, a paid carer for a few hours, a day-care service, a Memory Cafe (the person you care for attends with the carer in attendance can also count as social respite);
• Sitting services: the local Age UK, Crossroads Care or local charity sitting service provides a few hours of company so you can go out;
• Overnight respite: a short stay (a few nights to two weeks) in a care home or specialist respite unit;
• Longer respite breaks: a week or two, planned in advance, sometimes funded through a Carer's Assessment.

The general guideline is at least half a day off each week and at least a week off each year. Take it.

Mood and mental health

Depression and anxiety in carers respond well to the same approaches recommended generally: psychological therapy, sometimes medication, plus exercise and social engagement. Do not wait until you are in crisis. If two of the burnout signs above have been present for two weeks or more, book a GP appointment.

If you are having thoughts of self-harm, contact the Samaritans (116 123) or NHS 111. In immediate crisis, call 999.

Peer support

Other people who have done this know things the rest of us do not. Carer-only support groups (run by the Alzheimer's Society, Dementia UK, Carers UK and many local organisations) provide a place to share what is hard. The Alzheimer's Society Talking Point online community is free, 24-hour and accessible from any device.

Specialist dementia carer support is available from Admiral Nurses through Dementia UK's helpline (0800 888 6678) and, in some regions, through home visits.

Working as a carer

From April 2024, the Carer's Leave Act gives employees one week of unpaid carer's leave per year. You also have rights to flexible working and emergency time off for dependants. Talk to your line manager and HR. Many employers have specific carer policies. Carer's Allowance is available where you are providing 35 hours or more of care a week to someone in receipt of certain qualifying benefits.

Anticipatory grief

The loss in dementia happens slowly, over years, and starts long before death. Carers often describe grief for the person while the person is still alive: grief for the partnership that has changed, the conversations no longer possible, the personality that has shifted. This is anticipatory grief, it is normal, and it is exhausting.

Naming it helps. Talking about it helps more. Counselling, support groups and peer conversation are all appropriate, both during the caring years and in the bereavement that follows.

When you cannot keep doing this at home

Many carers can keep someone at home throughout dementia. Many cannot. Neither is a measure of love. The factors that most often push families to consider residential care include incontinence, falls, night-time wandering, severe behavioural symptoms, and physical demands that exceed what the carer can sustain. Planning ahead, before crisis, gives the best outcomes. See care homes and residential options.

A weekly minimum

If you can set just three things for yourself each week, make them:

• Half a day off, somewhere away from the house;
• Three brisk walks or equivalent exercise;
• One conversation with someone who knows what you are going through (in person, by phone, or online).

These three things meaningfully reduce burnout in trials and in practice. Everything else is on top of that.