Dementia Advice For Families

Overview

Dementia is not one disease. It is a group of symptoms caused by damage to the brain over time. The most common symptoms are problems with memory, thinking, understanding, and doing everyday tasks. These changes are serious enough to affect daily life. Dementia usually gets slowly worse over months and years, but the speed and pattern are different for each person. It is important to know that dementia is not a normal part of getting older. Some memory slips happen to everyone, but dementia is a medical condition, and help is available.

Yes, dementia is common, especially in people over 65. Around 1 in 11 people over 65 in the UK are thought to have dementia, and the numbers rise with age. Because it is common, you are not alone, and there is a lot of help and information available.

Dementia mostly affects older adults, and the risk goes up with age. But it can also affect younger people, sometimes in their 40s, 50s, or early 60s. This is often called young onset or early onset dementia. Dementia affects the whole family, not just the person with the diagnosis, including partners, adult children, grandchildren, and friends.

Symptoms

Common symptoms

• Forgetting recent events or conversations, while remembering things from long ago
• Repeating questions, or forgetting words or names
• Trouble following a conversation, or finding the right word
• Getting confused about time or place, such as getting lost on a familiar route
• Difficulty planning, solving problems, or managing money
• Losing things and putting them in unusual places
• Poor judgement, or being caught out by scams
• Changes in mood, such as feeling low, anxious, irritable, or suspicious
• Losing interest in hobbies, or avoiding social contact
• Needing help with everyday tasks like cooking, dressing, or washing

Symptoms in children

• Dementia itself is very rare in children, so these symptoms are about how children in the family may react.
• Young children may notice that a grandparent forgets them or acts differently, and may feel confused or upset.
• Teenagers may feel embarrassed, angry, or worried, and may not know how to talk about it.
• Some children take on extra caring tasks, which can affect school and friendships.
• Children usually cope better when adults explain dementia simply, honestly, and in small pieces.

Symptoms in older adults

• Memory problems that get in the way of daily life
• Trouble with language, such as struggling to find words
• Getting lost in familiar places
• Changes in personality or behaviour, such as becoming withdrawn or easily upset
• Difficulty with everyday tasks like paying bills or following a recipe
• Problems with judging distance or seeing things clearly, but not because of eye problems alone

Causes

Main causes

• Alzheimer's disease — the most common cause, where harmful proteins build up in the brain
• Vascular dementia — caused by reduced blood flow to the brain, often after small strokes
• Lewy body dementia — caused by tiny deposits in the brain, often with seeing things that are not there and changes in alertness
• Frontotemporal dementia — damage to the front and side parts of the brain, often affecting behaviour and language first
• Mixed dementia — more than one cause at the same time, which is common
• Some conditions can cause similar symptoms and can be treated, such as depression, an underactive thyroid, low vitamin levels, infections, or side effects of medicines — this is why tests matter

Risk factors

• Getting older — the biggest single risk factor
• A family history of dementia, or certain genes
• High blood pressure, high cholesterol, and diabetes
• Smoking and drinking too much alcohol
• Hearing loss that is not treated
• Head injuries, especially repeated ones
• Being physically inactive and having an unhealthy diet
• Feeling lonely and being socially isolated
• Low mood and long-term stress

When to see a doctor

See a doctor urgently if:

• A sudden change in confusion or behaviour over hours or days
• New signs of infection, such as fever, or a possible urine infection with confusion
• A fall, especially with a head injury
• The person with dementia or the carer feeling unable to cope or unsafe

Book a routine appointment if:

• Memory problems that are getting in the way of daily life and have lasted more than a few weeks
• Changes in mood, personality, or behaviour that are new
• Getting lost in familiar places, or trouble managing money
• As a carer, when you feel worn out, low, or unsure how to help
• When you want to plan ahead, such as talking about lasting power of attorney or care wishes

Diagnosis

Usually the first step is a talk with your GP. The GP will ask about the changes you or your family have noticed, how long they have been going on, and how they affect daily life. They may do some simple memory and thinking checks, and arrange blood tests to rule out other causes. If dementia is still possible, they will usually refer you to a memory clinic or specialist team for a fuller assessment. Family or friends often come along, because they can describe changes the person may not notice.

Tests that may be done

• A conversation about symptoms, medical history, and medicines
• Simple pen-and-paper or verbal memory and thinking tests
• Blood tests to check thyroid, vitamin levels, and other treatable causes
• A brain scan, such as a CT or MRI scan, to look for changes in the brain
• Sometimes more specialist tests, such as a detailed memory assessment
• In some cases, tests on the fluid around the spine or specialist scans, but only in certain situations

What to expect at your appointment

The assessment can take a few weeks and may involve more than one appointment. Being told you or a loved one has dementia can feel frightening, and it is normal to feel upset or angry. But a diagnosis can also bring relief, because it explains what is happening and opens the door to support, treatments, and time to plan. Ask questions, take someone with you, and ask for the information in writing so you can read it later.

Treatment

There is currently no cure for most types of dementia, but there is a lot that can help. Treatment focuses on supporting memory and thinking, managing symptoms and behaviour, keeping the person safe and independent for as long as possible, and supporting the family. Doctors, nurses, occupational therapists, social workers, and support groups can all play a part. The right plan is different for each person and should be reviewed regularly.

Self-care at home

• Keep a regular daily routine, with meals, medicines, and bedtime at the same times
• Use written reminders, a calendar, labels, and a single place for keys, glasses, and wallet
• Break tasks into small steps, and give one instruction at a time
• Stay calm and avoid arguing about a mistaken belief — comfort and distract instead
• Keep the home safe: good lighting, no loose rugs, and a working smoke alarm
• Encourage activity and company, such as short walks, music, or simple hobbies
• Make sure the person carries ID and contact details in case they get lost
• As a carer, take breaks, accept offers of help, and look after your own health

Medical treatments

Treatment is planned by a doctor who knows the person well. Some prescription medicines can help memory and thinking symptoms for a time in certain types of dementia, and other medicines may be used to help with mood or distressing behaviour. Doctors also look for and treat things that make confusion worse, such as infections, pain, constipation, poor sleep, hearing or sight problems, and side effects of other medicines. Talking therapies, cognitive stimulation, physiotherapy, and occupational therapy can also help. Your doctor or pharmacist can explain what is being offered and why. Never start, stop, or change any medicine without advice from your doctor or pharmacist.

When is surgery considered?

Surgery is not a treatment for dementia itself. Sometimes a person with dementia needs an operation for another health problem. In that case, the care team will plan carefully, review medicines, and discuss the risks and benefits with the family.

Living with this condition

Life with dementia can still be good. The key is to focus on what the person can do, not only on what they have lost. Keep familiar routines, involve the person in simple daily tasks, and prepare for changes slowly. Over time, more help may be needed with washing, dressing, meals, and money. It helps to plan ahead early, while the person can still share their wishes about care, money, and where they want to live.

Lifestyle tips

• Keep physically active within what is safe and comfortable
• Stay socially connected — regular visits, phone calls, or groups
• Keep the mind busy with music, puzzles, reading, or gentle hobbies
• Protect sleep with a regular bedtime and less screen time late at night
• Limit alcohol, and check with a doctor before using any new supplement
• Get hearing and eyesight checked, and use hearing aids and glasses if needed
• Plan activities earlier in the day if evenings are harder

Diet and exercise

A balanced diet with plenty of vegetables, fruit, whole grains, beans, and fish, and less processed food and salt, is good for the heart and the brain. Regular movement helps mood, sleep, and balance, and lowers the risk of falls. Short walks, chair exercises, dancing to music, or gardening all count. Drink enough water, and watch for constipation, which can make confusion worse. A doctor, nurse, or dietitian can give advice tailored to the person's other health conditions.

Mental health and emotional wellbeing

Dementia affects emotions as well as memory. The person may feel frightened, frustrated, or low, and may hide mistakes or avoid people. Carers often feel grief, guilt, anger, and exhaustion, sometimes all in the same day. These feelings are normal and do not mean you are failing. Talk to your doctor, a counsellor, or a carers' group. If you or someone in the family feels you cannot cope, or has thoughts of harming yourself or others, contact your local emergency number or a crisis helpline in your area straight away. You deserve help, and it is there.

Prevention

There is no guaranteed way to prevent dementia, and no single step that removes the risk. But research suggests that looking after your heart and brain can lower the chance of developing it, or delay it. What is good for your heart is usually good for your brain: keep blood pressure and cholesterol in check, stay active, eat well, do not smoke, limit alcohol, protect your head from injury, and stay connected to other people. It is never too late, or too early, to start.

Vaccines

There is no vaccine against dementia. Keep up to date with the routine vaccinations your doctor recommends, and ask your clinician about any vaccines that are advised for your age or health conditions. Staying well and avoiding infections helps people with dementia stay steadier.

Screening programmes

There is no routine screening test for dementia for everyone. If you are worried about memory or thinking, ask your doctor for a check-up. In the UK, the NHS Health Check for adults in middle age includes checks on blood pressure, cholesterol, and heart health, which are linked to brain health. Hearing checks and blood pressure checks are also worth having.

Complications

If left untreated

• More confusion, which can be caused by untreated infections, pain, constipation, or medicine side effects
• A higher risk of falls and injuries
• Getting lost or going missing
• Trouble managing money, and a higher risk of scams or financial abuse
• Poor eating and drinking, leading to weight loss and weakness
• Low mood, anxiety, and loneliness for the person and the carer
• Carer burnout, when help is not sought early enough
• Later stages needing full-time care and help with eating, drinking, and moving

Long-term outlook

Dementia usually progresses slowly over years, and each person's journey is different. Some people live well for a long time with the right support. There is no cure yet, but there is real help: earlier diagnosis, planning, treatment, and strong support can make daily life better for the person and the family. Many families find meaning and closeness in caring, even on hard days. Take it one day at a time, ask for help early, and keep talking to your healthcare team.

Find support

External links open third-party websites. Ruqelo Health is not responsible for external content. Listing an organisation does not imply endorsement.