Understanding Dementia

What Is Dementia?

Dementia is not a single disease — it is an umbrella term for a group of symptoms caused by damage to the brain. These symptoms affect memory, thinking, behaviour, language and the ability to perform everyday activities.

Dementia is caused by different underlying diseases that damage the brain in different ways. It is progressive — meaning symptoms worsen over time — and is not a normal part of ageing, though the risk increases with age.

Approximately 944,000 people in the UK have dementia. Two-thirds are women. Around 70,000 people under 65 have young-onset dementia.

Types of Dementia

Mixed dementia — particularly a combination of Alzheimer's and vascular dementia — is also common, especially in older age groups.

Symptoms and Progression

While every person's experience of dementia is different, common symptoms include:

• Memory loss — particularly short-term memory. Forgetting recent conversations, names, appointments.
• Confusion and disorientation — losing track of dates, time, place. Getting lost in familiar areas.
• Language difficulties — struggling to find the right word, following conversation, or understanding others.
• Visuospatial problems — difficulty judging distances, recognising objects or familiar faces.
• Mood and behaviour changes — anxiety, depression, irritability, apathy or agitation.
• Loss of initiative — reduced motivation, withdrawing from activities the person previously enjoyed.
• Difficulty with everyday tasks — problems with cooking, managing finances, taking medication.

Stages of Dementia

Dementia is often described in three broad stages, though progression varies significantly between individuals and types:

1. 1

   Early Stage

   Memory lapses, word-finding difficulties, mild confusion. The person can usually still live independently with some prompting and support. This is the stage to make an LPA, plan future care, and inform the DVLA if driving.

2. 2

   Middle Stage

   Increasing dependence on others. Help needed with personal care, medication, meals. Wandering, sleep disturbances and behavioural changes become more common. Home care becomes essential at this stage. The person may still recognise close family.

3. 3

   Late Stage

   Full-time care required. The person is likely to be largely non-verbal and may not recognise family. Swallowing difficulties, mobility loss and susceptibility to infections are common. Focus shifts to comfort, dignity and quality of life.

On average, a person lives 8–10 years after an Alzheimer's diagnosis, though this varies from 3 to 20+ years. Vascular dementia progression is often more variable.

Getting a Diagnosis

If you are concerned about someone's memory or behaviour, the first step is a GP appointment. The GP will:

• Take a history and carry out memory tests (such as the GP-Cog or MMSE)
• Arrange blood tests to rule out other causes (thyroid problems, vitamin deficiencies, infections)
• Refer to a memory clinic or specialist if dementia is suspected

A diagnosis is made by a specialist — often a geriatrician, psychiatrist or neurologist. Brain scanning (MRI or CT) is typically part of the process.

Getting a diagnosis can be distressing, but it opens the door to support, planning and treatment options. Prompt diagnosis is strongly encouraged.

After Diagnosis

Following a diagnosis, the most important immediate actions are:

• Make a Lasting Power of Attorney — this must be done while the person still has mental capacity. See our LPA guide.
• Notify the DVLA — there is a legal duty to inform the DVLA of a dementia diagnosis. The GP can advise.
• Claim benefits — Attendance Allowance (over State Pension age) or PIP may be available. See our Attendance Allowance guide.
• Register with the Herbert Protocol — if the person is at risk of wandering. See our Herbert Protocol guide.
• Request a Needs Assessment — from the local council's adult social care team.
• Plan future care — discuss care preferences while the person can express them. Write an Advance Care Plan.

See our dedicated New Dementia Diagnosis guide for a step-by-step family action plan.

Common Myths About Dementia

• "Dementia is just normal ageing." — False. While age is the biggest risk factor, dementia is a disease, not a normal part of growing older.
• "Dementia only affects memory." — False. Dementia affects reasoning, personality, language, movement and behaviour — far beyond memory alone.
• "There's no point getting a diagnosis." — False. A diagnosis enables legal planning, benefit claims, treatment options, carer support and advance care planning.
• "People with dementia can't communicate or have a meaningful life." — False. Even in later stages, connection, music, touch and familiar environments bring comfort and joy.
• "You should not agree with someone with dementia." — Contested. Validation therapy — meeting the person in their reality — is increasingly preferred over blunt correction, which can cause distress.

The Alzheimer's Society provides comprehensive support, local groups and a National Dementia Helpline: 0333 150 0767 (Mon–Wed 9am–8pm, Thu–Fri 9am–5pm, Sat–Sun 10am–4pm)