Getting a diagnosis

Why get a diagnosis?

It can feel easier not to know. But a diagnosis can help in many ways. The NHS says it can help people:

• get the right treatment and support
• rule out other conditions with similar symptoms, some of which can be treated
• understand what is happening and plan for the future

Alzheimer’s Society estimates that one in three people with dementia in England and Northern Ireland, and around one in two in Wales, do not have a diagnosis. Without one, people can miss out on treatment, benefits and support.

Step 1: Seeing your GP

The first step is an appointment with your GP. If you are worried about someone else, encourage them to go and offer to go with them.

You might ask for a longer appointment, or a double appointment, so there is time to talk. Say when booking that it is about memory.

How to prepare

• Write down your concerns. Include real examples, when they started and whether they are getting worse. See early signs.
• Bring someone who knows you well. The NHS says this helps. They can describe changes and help remember what was said. NICE asks doctors to take a history from someone who knows the person well, as well as from the person.
• List all medicines, including ones bought from a pharmacy and supplements.
• Note other health problems, such as falls, strokes, heart problems, hearing or sight loss, low mood or poor sleep.
• Mention family history of dementia or similar conditions.
• Write down your questions to take with you.

Step 2: Checks at the surgery

The NHS says the GP will:

• ask about symptoms and how they affect daily life, such as washing and dressing, cooking, shopping and paying bills
• do a physical examination
• arrange blood tests and urine tests
• do a short memory and thinking test

Why blood and urine tests?

NICE asks GPs to use blood and urine tests to rule out causes that can be treated. The NHS gives examples such as infections, thyroid problems and medicine side effects. NICE also asks GPs to check for delirium, depression, sight or hearing problems, and medicines that can affect thinking. See other causes of memory loss.

Memory and thinking tests

These are short questionnaires. You may be asked to remember an address, name objects, draw a clock face, or answer questions about the date. NICE lists several brief tests GPs can use, such as the 6-item cognitive impairment test (6CIT) or Mini-Cog.

Step 3: Memory service referral

If other causes have been ruled out, or dementia is still suspected, NICE says the GP should refer the person to a specialist dementia diagnostic service. This is often called a memory clinic or memory assessment service.

The NHS explains that the specialist may be:

• an old age psychiatrist (a psychiatrist who specialises in older people’s mental health)
• a geriatrician (a doctor who specialises in older people’s physical health)
• a neurologist (a doctor who specialises in the brain and nerves)

Memory services often have a team including nurses, psychologists and occupational therapists.

NICE says that if dementia is thought to be getting worse very quickly, over weeks or months, the person should be referred to neurology.

Step 4: Specialist assessment

At the memory service, you may have:

• a longer conversation about your history, often with a family member or friend present
• more detailed memory and thinking tests
• questions about mood, sleep and daily life
• a brain scan

Brain scans

NICE says specialists should offer a structural scan, such as a CT or MRI, to rule out other causes and help work out the type of dementia. The scan may not be needed if dementia is well established and the type is clear.

If the diagnosis is still uncertain, NICE says specialists may consider other tests:

Not everyone needs all of these. The specialist will explain what they recommend and why.

Step 5: Receiving the diagnosis

The specialist will usually see you again to talk about the results. It is a good idea to bring someone with you.

The NHS says the doctor should explain the type of dementia, the symptoms, how it may progress and what treatment is available. NICE says people should receive this information both verbally and in writing, including:

• the type of dementia and how it may change
• which health and social care teams will be involved
• how to contact them
• information about driving, legal rights and work
• local support groups and services

NICE also asks services to record who you would like information to be shared with, with your consent.

Your rights

• You can ask questions, and ask for things to be explained again.
• You can ask for written information to take away.
• You can say who you want to be told about your diagnosis.
• You can ask about getting a second opinion.
• NICE says people should have a single named health or social care professional to coordinate their care after diagnosis.

If the result is not dementia

Sometimes the assessment finds mild cognitive impairment, or another cause. Ask what follow-up is planned and what to do if things change.

After the diagnosis

A diagnosis can bring strong feelings, including shock, sadness, fear or relief. All of these are normal. Take time, and do not feel you must deal with everything at once.

Next steps may include:

• starting treatment, if suitable
• getting information about living well
• telling the DVLA if you drive
• planning ahead, such as a Lasting Power of Attorney. See legal and money matters
• contacting support services. See support and helplines

If someone refuses to go

You cannot force an adult to see a doctor. But you can still write to or speak with their GP to share your concerns. The GP may not be able to share information back without the person’s consent.

For advice on what to do next, you can call Dementia UK’s Admiral Nurse Dementia Helpline free on 0800 888 6678.