For people with dementia, getting diagnosed early can make a big difference to their quality of life.
However, the Alzheimer’s Society says one in three people with dementia have not been diagnosed, meaning they are not accessing the treatment and care they need.
For Dementia Action Week (19 to 25 May), Liz Carlisle, who works at Essex Partnership University NHS Foundation Trust (EPUT), explains the benefits of early diagnosis and addresses some concerns people may have.
Liz is Service Development and Quality Improvement Lead for Older Adult Mental Health and Dementia Community Services in west Essex. There are 20,000 people in Hertfordshire and West Essex area who have been diagnosed with dementia, with many more who are undiagnosed.
Myth: There isn’t anything that can be done to help, so what’s the point?
Reality: This is not true. There are many benefits to a diagnosis.
Myth: I will have to give up driving.
Reality: This isn’t always the case. Your safety to drive can be assessed and you will be allowed to continue to drive for as long as you are safe to do so. However you must let your insurance company and the DVLA know if you are diagnosed with dementia. You can read more about the law on driving and dementia on the Alzheimer’s UK website.
Myth: Treatment options for other health conditions will be disregarded and I will be written off.
Reality: This should never be the case. A diagnosis of dementia should not prevent you from having any health investigations, examinations or treatments that could be available. Your specialist will need to take into account your diagnosis when considering treatment options with you, and may have to consider how your dementia affects you as an individual in the context of treatment plans alongside your capacity to consent to treatment.
Early diagnosis gives people the opportunity to access care, support and treatment sooner to help them retain their independence and quality of life for longer.
This includes:
- Timely access to care and treatment, such as medications, psychological interventions, therapies, as well practical solutions and technology.
- Support for individuals and their family, including advice and guidance about the diagnosis, information about local support services and groups, and resources about matters they might want to consider now or in the future, such as lasting power of attorney. They may also be eligible for benefits such as Attendance Allowance, a blue badge and council tax reductions in some cases.
- Loved ones can be formally identified as carers so they can access support and any benefits they are eligible for, as well as emergency support from the Carers Emergency Care planning service via Essex County Council.
- There are amazing resources in the local community specifically for people who have dementia. These include walking groups, choirs, gardening and craft groups, and activity holidays, to name just a few. These encourage social and cognitive stimulation through enjoyable and meaningful activities which help preserve cognitive abilities.
Other benefits of an early diagnosis include:
Research has shown people with undiagnosed dementia are more likely to attend A&E more than those with a diagnosis.
A diagnosis can often encourage people to make changes to their lifestyle that can slow down the progression of the disease. This could be stopping smoking, reducing alcohol intake, eating healthier foods and being more active physically and socially.
Some people may be able to participate in research projects for new diagnostics and treatments.
Assessment, diagnosis and treatment processes vary slightly depending on where you live.
However in all instances, first speak to your GP or other healthcare professional. They will talk to you about your memory, do some simple cognitive tests and request some physical health tests including blood and urine tests and an ECG.
These tests are important as it helps the GP to identify any treatable causes of memory problems such as anaemia, thyroid deficiencies or acute infection that could be causing you to experience changes to your memory or cognitive abilities.
Your GP will review the test results and consider if any acute concerns need to be treated.
If the tests show further investigation is needed, you will be referred to specialists. If you live in west Essex, you will be referred to the Specialist Dementia and Frailty Service.
They will collect any additional information that will be useful from yourself and/or your family with your consent. You will then be invited to an Initial Assessment Appointment with a doctor from the team.
This appointment can take about 90 minutes as it’s important that all relevant information is available to ensure an accurate diagnosis can be made.
You will be asked questions about your personal history, your family support networks, your physical health and mental health. You will also be asked questions about what you are concerned about with regards to your memory and how this is affecting you and any changes you have noticed.
We usually ask you to bring a family member to support you and give us additional information if it’s needed.
During the assessment the doctor will carry out some formal testing of your cognitive abilities and ask you how you are managing with everyday tasks such as preparing meals or managing household tasks.
You may be referred for a scan of your brain. This helps the team understand how your brain is aging.
Once all the results are available, you will be invited to a second appointment with the team’s consultant psychiatrist. They will review all the information and test results and discuss your diagnosis.
Not all people will have a diagnosis of dementia at the end of the process. There are other diagnoses that can be given, such as mild cognitive impairment, and these will be discussed with you in detail and a follow up plan made if needed.
If you are diagnosed with dementia, your diagnosis will be explained in detail and a bespoke care plan put in place to ensure that you get the support that you need.
It may be difficult to know what you need when you are first given a diagnosis. You will have the chance to discuss the diagnosis and what this means for you and your family in more detail with our memory clinic outreach workers, both immediately after the diagnosis or at a later date if preferred.
You can find out more about EPUT dementia assessment services below.
If you live in west Essex – West Essex Dementia and Frailty Service
If you live in north east or south east Essex – Memory Assessment Service – North East and South East Essex
If you live in Thurrock, Epping, Colchester, Clacton or Brentwood – Older People’s Community Mental Health Service
Organisations locally and nationally such as the Alzheimer’s Society, Dementia UK and the Young Dementia Network, offer information about all aspects of dementia and cognitive impairment whether the person has a formal diagnosis or not.