Dementia

Also called Major neurocognitive disorder

Not one disease and not part of normal ageing. Which type it is changes the treatment, the risks and what the family should expect.

What it is

Dementia is an umbrella term for a group of diseases that damage the brain and progressively affect memory, thinking, language, judgement, mood and eventually physical function.

It is not a diagnosis on its own. Underneath it sit distinct diseases with different treatments and different dangers: Alzheimer's disease, vascular dementia, Lewy body dementia, frontotemporal dementia and mixed forms. Getting the type right is not academic. Antipsychotic medication that would be routine elsewhere can cause severe harm in Lewy body dementia; the behaviour changes of frontotemporal dementia are frequently mistaken for a mental health crisis or for deliberate rudeness for years.

It is not part of normal ageing, although age is the biggest risk factor. Around a third of cases are linked to factors that can be modified across a lifetime, including hearing loss, high blood pressure, smoking, obesity, physical inactivity, depression, social isolation and air pollution.

Around one person in twenty with dementia developed it before 65. See young onset dementia.

Anything that comes on over days or weeks rather than months is not dementia until proven otherwise. See delirium.

Signs you might notice

Memory difficulty that interferes with daily life, particularly for recent events, while older memories stay clear.

Difficulty finding words, following conversation, or handling money and familiar sequences like making tea.

Getting lost somewhere familiar, or muddling times of day.

Changes in mood, motivation, judgement or personality. In frontotemporal dementia these come first and memory may be intact.

Visual hallucinations, fluctuating alertness and acting out dreams, which point to Lewy body dementia and change what medication is safe.

Sudden step-wise decline after a stroke or transient ischaemic attack, which points to vascular dementia.

Sudden confusion over hours or days is delirium, an infection or a medication problem, and needs same-day assessment.

How it can affect day-to-day life

The distressing behaviour is nearly always communication. Agitation late in the day, refusing personal care, calling out, following somebody around: these have causes, and the most common ones are pain, needing the toilet, being too hot or cold, being frightened, being over-stimulated, constipation and infection.

Pain is under-treated in dementia to a degree that is hard to overstate, because the person cannot report it and nobody asks in the way they can answer. Assume pain before assuming distress.

Hearing and sight matter enormously. An unaddressed hearing loss or an out-of-date glasses prescription makes cognition look far worse than it is, and both are fixable in an afternoon.

Carers of people with dementia have among the highest rates of depression and physical illness of any carer group, and they are frequently not asked how they are.

The person is still there. Late in the illness, music, touch, familiar routine and being addressed as an adult still land, long after conversation has gone.

Supporting someone well

Get the type diagnosed, not just the label. Ask which dementia, and what that means for medication.

Never give an antipsychotic to somebody with suspected Lewy body dementia without specialist advice. Severe reactions are common and sometimes fatal.

Rule out the reversible things properly: hypothyroidism, vitamin B12 deficiency, depression, hearing and sight loss, and medication side effects.

Treat pain, treat constipation, treat infection, and check hearing aids and glasses before treating behaviour.

Do the legal work early, while the person can take part: lasting power of attorney for both health and finance, and an advance statement of what matters to them. See mental capacity.

Ask for a carer's assessment, in the carer's own name, and ask for it again if it was refused.

Keep the environment steady, keep the days structured, and keep the person doing what they can still do rather than doing it for them.

Where to get help

A GP practice for the first assessment and referral to a memory service.

Alzheimer's Society support line: 0333 150 3456.

Dementia UK's Admiral Nurses give specialist family support, including in a crisis.

Carers UK for the carer's own rights, benefits and breaks.

Age UK for practical help at home.