A Carer's Guide

You are a carer

Most people don't wake up one morning and decide to become a carer. It creeps up: a few more phone calls, a little more shopping, popping in to check the cooker is off, helping with a bath. One day you realise the person you love could not manage without you.

That makes you a carer, whether you live together or not, whether you're a spouse, a son or daughter, a neighbour or a friend. Recognising that matters, because it unlocks support, rights and help that are there for you too.

Communicating well

Dementia slowly changes the way someone processes words, tone and expression. Small adjustments in how you talk together can make a big difference to how safe and understood they feel.

• Get their attention gently before you speak, make eye contact, use their name, sit where they can see you.
• Speak a little more slowly, in short sentences. Stick to one idea at a time.
• Ask one question at a time, and give them time to answer. Silences are fine.
• Use closed questions 'Would you like tea or coffee?' rather than open ones 'What do you fancy?'.
• Back up your words with a smile, a touch on the hand, a photograph, a cup of tea, whatever helps the meaning land.
• Try not to argue with a mistaken memory. Step into their world rather than pulling them into yours.

When words become harder, tone and body language matter more. A calm face and warm voice will say 'you are safe with me' even when the sentence itself hasn't quite landed.

Day-to-day life

Routine is kind to a tired brain. Try to keep the shape of the day broadly the same, getting up, meals, a walk, quiet time, bed time, even if the details flex.

Eating and drinking

People with dementia often forget they are hungry or thirsty, or lose interest in food they used to love. Small meals, finger foods and familiar favourites often work better than a full plate. Eating together, if you can, helps a lot. Keep a drink in sight at all times; dehydration makes confusion much worse.

Washing and dressing

These are deeply personal tasks and can feel exposing. Offer choices where you can 'the blue jumper or the green?', lay clothes out in order, and keep the bathroom warm and well lit. Strip-washes, bed baths or a shower stool can all be easier than an unfamiliar bath. An occupational therapist can suggest adaptations.

Sleep

Disturbed sleep is common. Daylight, gentle exercise and a set bedtime routine all help. A nightlight on the landing, a familiar photograph by the bed, or a clock showing the time and whether it's morning or evening can settle nighttime confusion.

Meaningful activity

People with dementia do better when the day has shape and purpose. That doesn't mean entertainment, it means being useful, involved, connected. Folding the washing, stirring the soup, walking the dog, listening to music from their youth, looking through photographs. The activity matters less than the feeling of being part of things.

Staying safe at home

Most people with dementia want to stay in their own home for as long as possible, and small changes can make that much safer.

• Keep the layout familiar. Resist the urge to tidy or rearrange.
• Good lighting everywhere, especially in hallways, on stairs, and at night.
• Reduce trip hazards: loose rugs, trailing cables, cluttered floors.
• Label cupboards with words or pictures if it helps.
• Consider a smoke alarm, a gas safety valve and a kettle with an auto cut-off.
• A key safe by the front door means family, carers or paramedics can get in quickly in an emergency.
• Telecare (pendant alarms, fall sensors, door sensors) can add an extra layer of reassurance, Suffolk County Council can advise.

An occupational therapy assessment through your GP or the council is one of the most useful things you can ask for. A Disabled Facilities Grant may help pay for bigger changes such as grab rails, a walk-in shower or a stair lift.

Difficult moments

Every carer has days when nothing they do seems to help. Try to remember that difficult behaviour is almost always communication. Something is wrong, pain, thirst, fear, boredom, a full bladder, too much noise and they cannot easily tell you what.

Repeated questions

Answer kindly each time as if it were the first. Under the question is usually a feeling: anxiety, uncertainty, wanting reassurance. Sometimes a calm cuddle, a written note or a change of activity helps more than another answer.

Agitation or restlessness

Check the basics first: is there pain, are they too hot or cold, do they need the loo, are they hungry or thirsty? Lower the noise and light. Step back, take a breath, and try again in a gentler voice.

Sundowning

Many people become more anxious or confused as the day draws in. Close the curtains before dusk, put the lights on early, play familiar music, offer a warm drink. A predictable evening routine is one of the best medicines there is.

Not recognising you

It hurts. It is also very common, and it passes in and out. Try not to take it personally. Introduce yourself warmly 'Hello Dad, it's Sara', talk about shared memories, and show rather than test 'I'm just going to put the kettle on' rather than 'Do you know who I am?'.

Walking or wandering

Often there is a reason: looking for a person or a place, needing to be useful, feeling restless. A walk together, a job to do, or simply a chat can reset things. For safety, consider a GPS tracker, the Herbert Protocol form (filled in with the police in advance), and letting neighbours know.

When to ask for help

If someone becomes very distressed, aggressive, or hallucinates in a way that frightens them, talk to the GP. Sudden changes are often a sign of a urinary infection, pain or a medication issue all of which can be treated.

Looking after you

Caring is a marathon, not a sprint. If you run yourself into the ground, there is no one left to do the caring. Your wellbeing is not an optional extra it is part of the job.

Signs of carer burnout to take seriously:

• Constant exhaustion, even after rest
• Trouble sleeping, or waking early with a knot of worry
• Irritability, tearfulness or feeling numb
• Headaches, back pain, stomach problems that won't shift
• Drinking more, eating less, or losing interest in things you used to enjoy
• Feeling resentful, guilty, or as though you are disappearing

None of these feelings mean you are failing. They mean you are human, and you need support. Please speak to your GP, to us, or to one of the helplines at the end of this page.

Asking for and accepting help

Most carers wait much longer than they should before asking for help. By the time they do, they are often worn thin. Try to build support in early and lightly, before a crisis.

• Friends and family. When someone says "let me know if I can do anything", take them up on it. Give them a specific job: a weekly shop, an hour sitting with Mum on a Wednesday, a lift to the memory clinic.
• Home care. Even a short daily visit to help with washing, dressing or medication can transform your week. Start with an assessment from Suffolk County Council.
• Day services and memory cafe. A few hours of good company for them, and a proper break for you. We can point you to what's running locally.
• Respite care. A planned stay in a care home, or a sitter at home, so you can rest, see family, or simply sleep through the night.
• Admiral Nurses. Specialist dementia nurses from Dementia UK — free, confidential, enormously experienced.
• Carer support groups. Sitting with other people who know what this is like is often the single most useful thing a carer ever does.

When caring changes

For some families, there comes a point where caring at home is no longer possible, or no longer kind, for the person with dementia or for the carer. Recognising that is not a failure. It is a sign that the needs have grown beyond what one home and one pair of hands can hold.

A good care home is a community: company, safety, activity, round-the-clock support. The right home, chosen carefully, often brings the person more peace than they have had in a long time. Your role doesn't end, it changes. You become the visitor, the advocate, the person who still knows them best.

Our Planning for the Future guide covers how to choose a care home, how to think about later-stage decisions, and how to talk about what matters before talking gets harder.

This page offers general information, not medical advice. If you are worried about your own or someone else's health, please speak to your GP. In an emergency, ring 999.