Diagnosing dementia

1. Talk it through  

As a first step, it can be a good idea to discuss the problem together if this is something you’re comfortable doing. Choose a time when you can sit down together, without any interruptions, to talk things through. Your loved one may have noticed that there have been problems too. However, people with dementia may not recognise or wish to acknowledge that they have any symptoms and may not be aware of their memory loss, which can make it more difficult to bring up the subject.

When you chat, you can try to gauge their awareness of the problem and the extent of the difficulties they are experiencing, giving some examples. You can also explain that some memory changes in later life are normal and that there can be many explanations for it.

2. Visit your GP

Your loved one’s GP should be the first port of call if you have concerns about memory problems or any of the symptoms mentioned in what is dementia?.

Some people with dementia are unaware of their memory loss or find it difficult to admit there is a problem as they may be embarrassed, so they may be reluctant to visit a GP. Try to be prepared for this and to offer your support and reassurance. It may be helpful to read our guide to talking about care options, which gives tips on how to talk about difficult subjects.

It can be helpful if a family member can accompany the person who has a memory problem to the GP appointment if possible, because they are likely to need support and reassurance. The GP might also ask you to provide information about the difficulties being experienced and you can find out what tests or referrals are being proposed or organised.

The GP should ask questions to rule out other causes of memory loss (for example, head injury, stress, medication with side effects, possible infections or any thyroid or vitamin deficiencies). They might also carry out a physical examination and tests to assess mental ability. If they suspect that the problems might be caused by a progressive condition such as dementia, the GP may want to review them again in a few weeks’ or months’ time, or refer them to a specialist for an assessment.

It's helpful if a family member can go to the GP appointment with the person who has a memory problem for support and reassurance.

If you or the person you’re supporting are unhappy with the GP’s decision, you can go back and talk it through with them again. If you’re still unhappy with their response, seek a second opinion. 

It may be that your family member isn’t happy to have you come along to their appointment. In this case, you could write to the doctor outlining your concerns instead. While doctors can’t share information about your loved one’s health with you without their permission, they can take notice of your information when assessing their health.

If you’re afraid for your loved one’s safety, you can contact social services. Regardless of the path you take, it’s almost always better to be honest about what you’re doing and work together rather than risk losing their trust.

3. Get a referral to a specialist

Depending on your loved one’s age and other medical conditions or symptoms, the GP will probably refer them to a specialist – such as a neurologist, an old-age psychiatrist or the local memory assessment service – for a more thorough assessment. A specialist service will have more knowledge and experience about the condition, as well as have access to specialist testing (such as brain scans) and support services.

If you want a referral but the GP doesn’t offer it, discuss it with the doctor – they may have a good reason not to refer. If, after talking to the GP, you still feel that you want a referral, you may wish to get a second opinion from another doctor.

A specialist service will have more knowledge and experience about the condition and access to specialist testing and support services.

4. An assessment may be carried out 

An assessment might be carried out by a consultant-led team in a hospital or by a mental-health team visiting your loved one at home. It’s likely to involve taking a detailed medical history, physical examination, mental tests and scans. The specialist team will provide information and support about diagnosis and potential drug therapies, which may improve symptoms depending on the type of disease.

Background information

Part of the diagnosis is made by excluding other conditions, so it’s important for the consultant to get the full picture. Carers, relatives and friends can help to provide this detailed background information. It might be helpful to keep a diary of what’s been happening or think about examples when you have noticed memory loss, and bring some notes to the meeting with the specialist.

Memory tests

These may consist of pen and paper-type tests, and questions focusing on memory as well as verbal and non-verbal abilities. These tests can help to determine the type of problem a person has, particularly in the early stages. The assessment can also be used as a benchmark to measure any changes over time.

Scans

The professional carrying out the assessment may like to refer your loved one for a brain scan. The scan can help with getting a dementia diagnosis but also discover if factors such as strokes or a brain tumour could be behind their memory problems.

The vast majorities of scans that do show changes in the brain will not be because of a serious problem that will affect your loved one’s life span or quality of life. Instead, they are what are known as ‘false positives’, and it’s important to bear in mind that this is common before they go in for the scan.

5. Receive the diagnosis 

The specialist team carrying out the assessment should send the results the GP. They will also communicate with you about the diagnosis. In most cases, the GP or consultant will make an appointment with your loved one to discuss the results, and what they mean. They may also ask a close family member to be present.

If the person does have dementia then the doctor will help them and their family to understand the impact of the diagnosis, and the team of professionals working with them will also be able to offer advice.