Caring for Someone with Dementia: A Practical Guide

If you are caring for someone with dementia, you are not alone. According to Dementia UK, there are around 700,000 family carers supporting someone with dementia in the UK. This guide offers practical advice to help you provide the best care possible while also looking after yourself.

Understanding How Dementia Affects Behaviour

Dementia affects the brain in ways that change how a person thinks, feels, communicates, and behaves. What might seem like difficult or challenging behaviour is often the person’s way of expressing an unmet need, discomfort, or confusion.

Common changes you might notice include:

• Repeating questions or stories
• Becoming easily frustrated or upset
• Forgetting recent conversations or events
• Difficulty finding words or following conversations
• Confusion about time, place, or people
• Loss of interest in activities they once enjoyed
• Changes in mood or personality
• Restlessness or agitation, particularly in the late afternoon or evening (sometimes called sundowning)

These changes are caused by the condition, not by choice. Understanding this can help you respond with patience and compassion, even on difficult days.

Communication Tips

As dementia progresses, communication can become harder for both you and the person you are caring for. Here are some strategies that can help:

• Speak clearly and calmly: Use short, simple sentences. Speak slowly and give the person time to process what you have said. Avoid shouting, even if they seem not to hear you.
• Use non-verbal communication: Body language, facial expressions, gestures, and touch can communicate warmth and reassurance. A smile, gentle touch on the arm, or holding hands can be comforting.
• Ask one question at a time: Avoid offering too many choices or complex questions. Instead of “What would you like for lunch?”, try “Would you like soup or a sandwich?”
• Listen with patience: Even if the person struggles to find words or repeats themselves, listen without interrupting or correcting. Show that you value what they are trying to say.
• Avoid arguing or correcting: If the person says something incorrect (e.g., talking about a deceased relative as if they are still alive), gently redirect rather than correcting. Arguing can cause distress.
• Use their name and make eye contact: Get their attention by using their name and making eye contact before speaking. This helps them focus on you and your message.
• Join their reality: If the person believes they are in a different time or place, it can be kinder to gently go along with it. For example, if they ask about going to work, you might say “Not today, it’s your day off.”

Managing Difficult Behaviours

Behaviour changes can be one of the hardest parts of caring for someone with dementia. Behaviour is communication. If someone is agitated, restless, or distressed, they are trying to tell you something.

Common triggers for distress:

• Pain or physical discomfort (headache, constipation, infection)
• Hunger, thirst, or needing the toilet
• Feeling too hot or too cold
• Overstimulation (noise, crowds, too much activity)
• Confusion or disorientation
• Boredom or lack of meaningful activity
• Feeling rushed or pressured

What you can do:

1. Look for the cause: Try to understand what might be causing the behaviour. Are they in pain? Do they need the toilet? Is the environment too noisy?
2. Stay calm: Your emotional state affects the person you are caring for. Take a breath, speak softly, and remain calm.
3. Distract and redirect: Gently redirect their attention to something else, such as a cup of tea, a short walk, or looking at photographs.
4. Create a calm environment: Reduce noise and clutter. Soft lighting, familiar objects, and gentle music can create a calming atmosphere.
5. Keep routines consistent: Routine and predictability help reduce confusion and anxiety. Keep mealtimes, bedtime, and daily activities consistent.
6. Know when to step back: If a situation escalates, sometimes the kindest thing is to give space and try again later.

Creating a Safe and Supportive Environment

Small changes to the home environment can help someone with dementia feel safer, more independent, and less confused.

Practical changes to consider:

• Remove clutter and trip hazards (rugs, cables, furniture in walkways)
• Use clear labels and signs (labels on cupboards, bathroom signs with pictures)
• Install good lighting, especially in hallways, stairs, and bathrooms
• Use contrasting colours to help with visibility (e.g., dark toilet seat on a light toilet)
• Keep familiar items visible (photographs, favourite objects, meaningful keepsakes)
• Reduce mirrors if the person becomes confused or distressed by their reflection
• Consider safety features such as automatic lights, stair gates, or door alarms if wandering is a concern

Always balance safety with dignity and independence. The goal is to support the person to do as much as they safely can for themselves.

Supporting Daily Activities

As dementia progresses, everyday tasks like washing, dressing, and eating can become more difficult. Here is how you can help while preserving dignity and independence:

Personal Care

• Break tasks into simple steps (hand one item of clothing at a time)
• Offer choices where possible (two shirts to choose from)
• Allow plenty of time and avoid rushing
• Use gentle prompts and encouragement rather than taking over
• Respect privacy and dignity, especially during washing and toileting

Mealtimes

• Offer familiar foods and simple meals
• Use plain plates without patterns to help the person see the food clearly
• Provide easy-to-hold cutlery or finger foods if coordination is difficult
• Eat together when possible, as social mealtimes are more enjoyable
• Be patient if eating is slow or messy

Maintaining Routines

• Structure helps reduce confusion and anxiety
• Keep wake-up times, mealtimes, and bedtime consistent
• Include meaningful activities the person still enjoys, adapted as needed

When Behaviour Becomes Challenging or Unsafe

This may include:

• Physical aggression towards you or others
• Severe agitation or distress that nothing seems to calm
• Wandering or leaving the house in unsafe circumstances
• Refusing to eat, drink, or take medication for extended periods
• Rapid changes in behaviour or sudden confusion (could indicate infection or illness)

What to do:

• Contact your GP or call 111 for advice
• If immediate risk of harm, call 999
• Contact the Dementia UK Admiral Nurse Helpline: 0800 888 6678
• Ask for a review of medication or care plan
• Request a carer’s assessment from your Local Authority to access support

You are not expected to manage everything alone. Asking for help is not failure; it is recognising when you need support.

Looking After Yourself as a Carer

Caring for someone with dementia is emotionally and physically demanding. Looking after yourself is essential.

Signs you may be struggling:

• Feeling exhausted all the time
• Difficulty sleeping or constant worry
• Feeling isolated or alone
• Irritability, anger, or resentment
• Feeling guilty about needing a break
• Physical symptoms like headaches, stomach problems, or frequent illness

How to look after yourself:

1. Accept help: Be specific about what would help, e.g., sitting with your loved one, shopping, or making a meal.
2. Take breaks: Even short breaks matter. Consider respite care where your loved one is cared for elsewhere temporarily.
3. Connect with other carers: Support groups, in person or online, can help you feel less alone.
4. Ask for a carer’s assessment: Entitled to a free assessment from your Local Authority for support such as respite care or equipment.
5. Speak to your GP: Discuss any mental or physical health concerns; depression and anxiety are common among carers and are treatable.
6. Know when to consider other care options: Residential care may become necessary. This is not giving up, but recognising your loved one’s needs. Boutique Care Homes supports families through this transition with compassion and understanding.

Sources of Support

• Dementia UK Admiral Nurse Helpline: 0800 888 6678 – Specialist dementia nurses offering free, confidential advice and support.
• Alzheimer’s Society Dementia Connect: 0333 150 3456 – Information, advice, and support for people affected by dementia.
• Carers UK Helpline: 0808 808 7777 – Advice and support for carers on benefits, legal issues, and practical help.
• Age UK Advice Line: 0800 678 1602 – Free advice on care, benefits, and support for older people and families.
• Samaritans: 116 123 – Confidential emotional support available 24/7.

SOURCES:
Dementia UK: https://www.dementiauk.org/
NHS – Caring for someone with
Carers UK: https://www.carersuk.org/
Age UK – Caring for someone with dementia: https://www.ageuk.org.uk/information-advice/health-wellbeing/conditions-illnesses/dementia/