Getting a diagnosis

If you are concerned about your own memory, or you are worried about changes you have noticed with memory, communication, personality or behaviour of someone close to you, it is important to consult a GP as soon as possible, so that an accurate diagnosis is made.

Going to a GP for a check-up can identify potentially treatable conditions that initially look like dementia but are not. Depression, vitamin B12 deficiency, delirium, stress, thyroid problems, infections, or vascular problems can all affect a person’s alertness, memory, or brain function.

  1. Why is it important to recognise and diagnose dementia in the early stages?
  2. What are the possible signs and symptoms that may indicate a person could have dementia?
  3. How is a diagnosis made?
  4. What if the person won’t go for investigations and tests?
  5. What if the GP won’t make a referral to a Memory Service or Clinic for a specialist assessment?
  6. Planning ahead if you’ve been diagnosed
  7. Research

We know that seeking a diagnosis can be scary or overwhelming, and some people feel that they’d rather delay finding out. There are four main reasons you should take steps to get a diagnosis as soon as you can.

  • For some people, it can be a relief to know what their condition actually is, and why their memory, behaviour, or the way they feel is changing. A diagnosis also benefits the wider family and enables them to understand what is happening and how they can help
  • A diagnosis helps the person with dementia and their family to get the best treatment, support and plans in place as soon as possible. This includes looking at finances, legal issues and making decisions for the present and the future
  • A timely diagnosis can help the person stay well for longer by increasing their awareness of the condition and how they and their family can make adjustments to improve their quality of life
  • Although there is no cure for dementia at present, medication and other interventions can be used to help manage and lessen the symptoms

A change in:

  • short term memory
  • thought processes
  • concentration level
  • communication, comprehension and word finding
  • motivation level
  • ability to perform everyday tasks
  • personality, mood, behaviour or social functioning

All of these signs and symptoms may be due to potentially treatable causes, so it should never be assumed that one or more of these signs and symptoms is definitely an indication of dementia.

Firstly, before the GP refers the person for a specialist assessment of dementia, they should assess whether the person has a treatable underlying condition, such as: depression, vitamin B12 deficiency, anxiety, sensory impairment or infections. The GP should conduct an examination, organise some blood tests and ask questions to reveal physical or psychological conditions which could be the reason for the signs and symptoms experienced.

In addition, the GP should also ask when the symptoms started, and how these affect everyday living and whether these problems started suddenly or more gradually. It may be helpful to have a family member, or a person who knows the person well, present at this stage so they can say what changes they have noticed and how this affects the person and the people around them.

The GP should also briefly test the person’s memory and cognitive abilities, asking the person to:

  • state what day, date and year it is
  • name some common items, from pictures, or as answers to questions
  • remember and repeat items to test concentration and short term memory
  • complete a drawing

If all physical or mental health conditions have been ruled out as possible causes of the changes in memory, behaviour and personality, the GP may then refer the person for further investigation. This could be at a memory service (a place for specialist assessment and diagnosis of dementia), at a clinic or with a specialist.

The memory service, clinic or specialist should take a detailed medical and family history from the person with symptoms of dementia. It is helpful if a family member, or someone who knows the person well, goes to this appointment, and speaks with the person conducting the assessment to help with this process, and/or writes a short letter outlining what the issues are and how it affects the person being assessed.

Next, the memory service, clinic or specialist should assess the person’s cognitive abilities by asking specific questions, sometimes called a ‘mental state examination’ or ‘cognitive testing’. These usually include tests of attention, memory, verbal fluency and language, as well as testing their visuospatial abilities, by asking the person to copy diagrams or draw a clock. In addition, they will ask questions about the person’s abilities with everyday tasks such as shopping, housework, driving, and self-care, such as washing and dressing.

Lastly, the memory service, clinic or specialist should request an MRI or CT scan to examine the brain for any abnormalities.

The person may be feeling frightened of getting a diagnosis and may think that they will lose their independence or have to go into care. In some cases, they may not understand that there are concerns about their memory or behaviour and deny they have a problem.

It is important to reassure the person that their symptoms may be due to another potentially treatable condition. This could mean they become more willing to visit the GP. If the person simply refuses to go to the GP, you can contact the surgery to explain the situation, either by phone, letter or email. The GP may be able to provide a home visit to speak to the person about their symptoms.

The GP may not be prepared to discuss confidential information with you, but they should welcome relevant information about the person’s current health and concerns.

For more advice on encouraging someone who is reluctant to visit their GP, please watch our video, here.

If you are experiencing difficulty getting a diagnosis, or if you have questions you can’t get answered, we’ll take the time to really understand the problem, and give you the expert advice and support you need to tackle it. Please call the specialist dementia nurses on our Helpline on 0800 888 6678 or email helpline@dementiauk.org, 9am-9pm Monday to Friday, and 9am-5pm at weekends.

  • Talk to your family and the people close to you about the future. Think about what help you would like
  • You may also like to think about things you would really like to do, people you would like to meet and holidays you would like to plan. Having some plans in place helps with a positive outlook on the future and opens up conversations with people who care about you and would like to support you
  • Thinking about your future health needs can be difficult and feel like an unnecessary step but it will help you and the people who know you well to choose treatments and services that you would prefer in the future
  • You can put a Health and Welfare Power of Attorney and Advance Care Plan in place. Doing this will give you and your family time to look at available treatments and support and make sure you’re aware of all the choices available to you for the future
  • Getting some financial advice as soon as you can will help you get your finances in order and make sure you’re protected. A Lasting Power of Attorney is an important safeguard for you and anybody who is helping you with your finances. It’s best to get support from a solicitor or an organisation like Age UK with this
  • Financial support is available to you regardless of your financial status. You can claim Attendance Allowance (which is non-means tested) if you’re over 65 or Personal Independence Payment if you’re under 65. If you live with another person you can also claim a 25% council tax reduction from your local authority and if you live alone you can claim an exemption from council tax
  • There are a variety of housing options to choose from. If you’re renting you can get support from your local authority housing department. There are also assisted living and sheltered housing options

Over the last couple of years more money has been pledged by the UK government and other countries worldwide to research into the causes and find a cure for dementia. Subject to research processes and certain criteria, there are opportunities to be part of research studies. To find out more or register your interest, see: Join Dementia Research.