Supporting a relative living with dementia

Dementia is not one disease. It's a term for a group of conditions that damage the brain and gradually affect memory, thinking, language and the ability to manage everyday life. Alzheimer's disease is the most common cause, but there are others.

Alzheimer's Disease International estimates that more than 55 million people worldwide live with dementia, and that most live in low- and middle-income countries. Yet in many families and communities it is still misunderstood: early signs are put down to "just old age", and later changes in behaviour can attract stigma, or even suspicion. The World Health Organization notes that lack of awareness leads to stigma and delays in diagnosis and care.

You are not alone in this, and there is a great deal you can do.

What families should know first

• There is no cure for dementia, but support makes a real difference. The WHO describes how much can be done to help people live well with dementia, and to support the people who care for them.
• A diagnosis matters. Memory problems can have other causes, some treatable, such as thyroid problems, infections, depression or side effects of medicines. Ask the person's doctor for an assessment, and keep notes of what you've noticed and when.
• Sudden change is different. If someone with dementia suddenly becomes much more confused, drowsy or agitated over hours or days, it may be delirium, often caused by an infection such as a urine infection. It needs a doctor urgently. In an emergency, call 112.
• Dementia changes over time. What helps now may need to change in six months. Plan to review support regularly.

Keeping a familiar routine

Predictability is calming. A day that follows a familiar pattern helps the person know what's coming next.

• Keep mealtimes, washing, rest and prayer or quiet time at similar times each day.
• Keep familiar things in familiar places: their chair, their cup, photographs, the radio.
• Label cupboards and doors with words or pictures if it helps them find things.
• Plan the busiest or most demanding activities for the time of day when they're usually at their brightest.
• Make sure there is light, a clear path and a simple routine for getting to the toilet, especially at night.

Communicating with kindness

As dementia progresses, following conversations becomes harder. Small changes in how you talk can avoid distress on both sides.

• Approach from the front, at their eye level, and say who you are if they might not remember.
• Use short, simple sentences and one question at a time. "Would you like tea?" is easier than "What would you like to drink?"
• Give time. Wait for an answer rather than repeating or rephrasing too quickly.
• Don't argue about facts. If they believe a long-dead parent is coming to visit, correcting them can cause fresh grief. Respond to the feeling behind the words ("You're thinking about your mother. Tell me about her.").
• Use the language they're most comfortable in. Many people return to their first language as dementia progresses.
• Notice body language. Restlessness can mean pain, hunger, a full bladder, boredom or being too hot.

Safety at home

• Think about cooking: gas left on, pans forgotten. Simple changes, or someone being there at mealtimes, may be needed.
• Some people walk out and get lost. A recent photograph, an ID card with a family phone number in their pocket, and neighbours who know the situation can all help.
• Keep medicines in one safe place, with a clear routine. See medication support explained for the difference between reminders and medicines given by a nurse.
• Watch for signs of not eating or drinking enough, especially in hot weather.
• Be alert to people who might take advantage, for example callers asking for money.

Our guide to everyday home-safety questions goes through the home room by room.

Dignity and respect

A person living with dementia keeps their feelings, their history and their right to be treated with respect. Involve them in decisions for as long as they can take part. Let them do what they can, even if it takes longer. Keep up the things that give their life meaning: their faith, music, visitors, being part of family occasions in a way they can manage.

Physical restraint, locking someone in a room or giving sedating medicines without a doctor's decision can cause harm and distress. If behaviour is becoming difficult to manage, talk to their doctor.

Looking after the family

Caring for someone with dementia can be exhausting, emotionally as well as physically. Alzheimer's Disease International reports that more than half of carers say their own health has suffered. Your wellbeing matters too; the NHS reminds carers that their needs are as important as those of the person they care for.

• Share the load. Agree what each family member can realistically do, including those who live abroad: they may be able to cover costs, coordinate, or call regularly even if they can't be there.
• Take regular breaks. Planned breaks help carers keep going. Our guide to planning respite care explains how to arrange cover.
• Talk to someone. A doctor, your faith leader, a support group or a trusted friend.
• Learn about the condition. Understanding why behaviour changes makes it easier not to take it personally.
• Accept help early, before you reach breaking point.

How support at home can help

Support can start small, such as a few hours of company and help with meals, and grow as needs change. Dementia support at home aims for a consistent small team so faces stay familiar, routines that suit the person, and calm approaches to confusion or distress. Support never includes a promise to slow or reverse the condition; changes in behaviour are always reviewed with the person's doctor.

If the main family carer needs a rest, respite care can provide planned cover, from a few hours a week to live-in cover while they're away.

Sources

1. Dementia (fact sheet), World Health Organization (checked Invalid Date).
2. Dementia facts and figures, Alzheimer's Disease International (checked Invalid Date).
3. Looking after someone with dementia, NHS (UK) (checked Invalid Date).
4. Sudden confusion (delirium), NHS (UK) (checked Invalid Date).

This guide is general information, not medical advice for a particular person. Talk to the person's doctor about their health, treatment and medicines.