Understanding Dementia

What is dementia?

Dementia is not one single illness. It is the word used to describe a group of symptoms caused by different diseases that damage the brain. Over time, this damage affects memory, thinking, language, mood and the ability to carry out everyday tasks.

Dementia is not a natural part of getting older. Most people with dementia are over 65, but it can also affect younger people, this is often called young-onset dementia.

There are currently around 982,000 people living with dementia in the UK, and that number is expected to rise over the coming decades. Behind every one of those numbers is a family, a friendship, a community and a lot of love and worry.

The most common types of dementia

There are more than 200 different conditions that can cause dementia. These are the ones you are most likely to hear about.

Alzheimer's disease

The most common cause of dementia, accounting for roughly six in every ten cases. It usually begins slowly, with problems remembering recent conversations or events, and develops gradually over a number of years.

Vascular dementia

Caused by problems with blood flow to the brain, often after a stroke or a series of small strokes. Symptoms can include difficulty with planning, concentration or following a conversation. It can develop suddenly or in a stepped way.

Dementia with Lewy bodies

Caused by tiny clumps of protein (Lewy bodies) in the brain. Alongside memory changes, people may have visual hallucinations, movement difficulties similar to Parkinson's disease, and marked changes in alertness from one day to the next.

Frontotemporal dementia

Less common, and more likely to affect people under 65. It tends to cause changes in personality, behaviour or language before memory problems appear.

Mixed dementia

Many people, particularly those over 80, have more than one type of dementia at the same time. The most common combination is Alzheimer's disease and vascular dementia.

Early signs and symptoms

Dementia affects everyone differently, but there are some early changes that are worth talking to a GP about. These include:

• Forgetting recent conversations, appointments or names
• Struggling to find the right word or follow a conversation
• Losing track of the day, date or where you are
• Difficulty with familiar tasks, such as using the cooker, paying for things, or following a recipe
• Problems with judgement, planning or decision-making
• Mood changes, feeling low, anxious, irritable or withdrawn
• Misplacing things in unusual places, or repeatedly losing them
• Changes in behaviour that feel out of character

Occasional forgetfulness is a normal part of life. It is the pattern of changes that are getting worse over weeks and months and starting to affect day-to-day life that is worth investigating.

Causes and risk factors

Dementia is caused by physical diseases of the brain. We cannot control our age, genes or sex, but research shows that around four in ten cases of dementia may be linked to risk factors we can influence.

These include:

• Smoking
• High blood pressure, especially in mid-life
• Hearing loss that isn't treated with a hearing aid
• Too much alcohol
• Being overweight, inactive or having type 2 diabetes
• Depression and loneliness
• Untreated vision problems
• Air pollution and head injuries

What's good for your heart is good for your brain. Staying active, eating well, keeping connected with other people, looking after your hearing and seeing your GP about blood pressure all help to lower your risk.

Getting a diagnosis

A diagnosis usually starts with a visit to the GP. They will ask about the changes you've noticed, take a full medical history and rule out other causes of memory problems, such as infection, thyroid issues, depression or medication side-effects.

If dementia is suspected, the GP will refer you to a local memory assessment service or memory clinic. A specialist will carry out further tests, which may include:

• Memory and thinking tests
• Blood tests
• A brain scan (such as CT or MRI)
• A conversation with someone who knows you well

Getting a diagnosis can feel frightening, but it opens the door to treatment, support and the chance to plan for the future while you still have full say over your own wishes. You are not alone and you do not have to work out the next steps by yourself.

How dementia progresses

Dementia is progressive, which means symptoms usually get worse over time. How quickly this happens varies hugely from person to person. Many people live well for years after a diagnosis.

Dementia is often talked about in three broad stages. These are a guide, not a timetable.

Early stage

Symptoms are mild. Someone may still do most things for themselves, but may need reminders, struggle with unfamiliar places or find work and hobbies harder. This is a good time to put plans in place see our Know Your Rights guide for how to do this and for practical steps.

Middle stage

More support is usually needed with day-to-day tasks such as cooking, washing and dressing. Memory problems become more noticeable and communication can be harder. People can become upset, restless or confused, particularly in unfamiliar places or late in the day.

Later stage

Most people will need a lot of support, including with personal care, eating and moving around. Communication may be largely through expression, gesture and touch. Kindness, music, familiar smells and gentle company matter enormously.

Living well with dementia

A diagnosis of dementia is not the end of a meaningful life. With the right support, people live, love, laugh and contribute long after diagnosis. Small things make a big difference:

• Keep doing the things you enjoy, walking, gardening, music, faith, friendship
• Stay connected: loneliness makes symptoms harder to cope with
• Build gentle routines, and use notes, calendars and reminders
• Look after physical health, sleep, exercise, regular meals
• Accept help early: carers' support is there for a reason
• Talk about the future while you can wishes, finances, care preferences

Carers matter too. Looking after someone with dementia can be tiring, lonely and emotional as well as rewarding. Taking breaks, accepting support, and talking to people who understand are not luxuries, they are part of caring well.

This page is for general information and does not replace advice from your GP or another qualified professional. If you are worried about your own or someone else's health, please speak to your GP.