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 both comfortable doing. Choose a time when your loved one is receptive, for example, when you have just made a mistake yourself, so you can talk about it as a shared problem.

When you chat, you can try to gauge their awareness of the problem and the extent of the difficulties they are experiencing. Try to discuss it in a neutral and non-judgemental way, putting yourself in the position of supporter and companion. If they become defensive, drop the subject and come back to it another time, or speak to the GP alone. If you aren't a family member, the GP may not share any information with you, but should always listen to your concerns. Read our article on talking to someone with dementia for more guidance.

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?.

Before the appointment

Ahead of the appointment, it's worth making notes of your concerns and sending them in a letter to the GP, explaining your relationship to the person. This avoids talking across your family member about embarrassing aspects of their condition in front of their doctor. Take a copy with you for reference.

If you are the person's main carer, ask at reception for a form to register you as such. This information should be noted in both your medical notes and theirs, so if two GP practices are involved, do this at both of them. If you have a health problem in the future, it's important for staff to know that you have caring responsibilities.

Be aware that this appointment is likely to be stressful for the person with memory problems. Where possible, try to make this and any future appointments at the best time for you both. If they are a late riser or take a long time to get dressed, an early appointment may cause unnecessary anxiety; similarly, you should avoid rushing off immediately afterwards in case they need to talk.

It may be helpful to read our guide to talking about care options, which gives tips on how to talk about difficult subjects.

It's usually recommended that a family member accompanies the person for memory assessment with a GP. This serves several purposes:

• You can offer support during a potentially difficult and upsetting appointment. (Memory tests are designed to show up deficits so they can feel humiliating.)
• The GP may need your input as you will know how much things have changed and your information may be more accurate.
• You can make notes of what was said.
• You can find out what tests, referrals and further visits are planned.
• You can find out about sources of support for you in your caring role.

It may be that your family member or friend isn’t happy to have you come along to their appointment. In this case, you could write to the doctor outlining your concerns. 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. It's always useful for a GP to have background information so they can talk to the person in the most appropriate way.

At the appointment

The GP should 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 a progressive condition, such as dementia, the GP may want to review your loved one in a few weeks' or months' time, or refer them to a specialist for more detailed assessment.

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.

A specialist service will have more knowledge and experience about the condition and access to specialist testing 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 at a separate appointment.

After the appointment

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. 

If you’re afraid for your loved one’s safety, you should contact the local authority and ask for the safeguarding team. If you're concerned about their physical safety, it might be more appropriate to get an occupational therapy assessment. 

3. 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. It's best to give the notes to the doctor in writing, to avoid talking across your family member.

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.

Sometimes scans show ‘false positives’ where visible changes do not necessarily indicate a serious problem.

4. Receive the diagnosis 

The specialist team carrying out the assessment should send the results the GP. Ask the doctor to send you a copy of any correspondence and appointment details. This request should be put in the patient notes. 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.