Channel 4’s new documentary ‘Jon Snow: A Last Big Story’ brings attention to one of the most significant barriers to dementia diagnosis: stigma. The possibility of an Alzheimer’s diagnosis can feel overwhelming, and many individuals may avoid thinking about signs of cognitive decline.
The Stigma of Dementia
From a lack of understanding of the disease to fear of being seen as incapable or a burden, stigma prevents many people who are experiencing symptoms of Alzheimer’s from seeking vital support. A poll by the Alzheimer’s Society suggests that up to one third of people who notice signs of dementia in themselves or a loved one keep their fears to themselves for more than a month1.
Critically, delaying diagnosis delays treatment, which is most effective in the early stages of the disease. Getting a prompt diagnosis provides access to medication that may be able to slow the progression of dementia and help with symptom management.
How is Alzheimer’s Diagnosed?
There is no single test to diagnose Alzheimer’s; doctors usually rely on a combination of tests and assessments to establish whether someone has dementia or another similar condition. While the path to diagnosis varies, the process involves several core components. Here at MAC, we want to help demystify this process:
- Step One: Visiting Your GP
If you’ve noticed symptoms of dementia in yourself or a loved one, it’s important to seek advice from a medical practitioner. In your appointment, you can discuss your symptoms and review your medical history; close family and friends can also speak to the doctor about changes they may have noticed.
The GP will carry out an initial cognitive assessment that provides insight into memory, concentration, orientation, and communication skills. A commonly used test is the General Practitioner Assessment of Cognition (GPCOG).
- Step Two: Urine and Blood Tests
Your GP may arrange for you to have urine and blood tests to rule out other explanations for your symptoms, such as infection or vitamin deficiency. Through these tests, they can assess your liver, kidney and thyroid function, your vitamin levels, and check for diabetes. There is no blood test available in the UK to test for dementia alone.
- Step Three: Referral to a Specialist
If necessary, your GP will refer you to a dementia specialist. The specialist practitioner will perform further memory and thinking tests. Some examples of what these tests may include are: recalling a list of unrelated words, doing simple maths, naming various objects, and drawing a clock face to a specific time.
- Step Four: Brain Scans
Rarely, your specialist may arrange for brain imaging scans like CT and MRI to confirm a diagnosis of dementia and the type of disease causing the dementia, or to rule out other health conditions. These scans can detect changes or damage to the brain caused by stroke or diseases like Alzheimer’s.
Brain scans alone cannot provide a definitive diagnosis but are used as part of a range of diagnostic tools. Not everyone will need a brain scan, and not all brain scans are appropriate for everyone; for example, because it uses magnets, those with pacemakers or metal in their bodies can’t have an MRI.
- Step Five: Diagnosis
Following a dementia diagnosis, your doctor or nurse will provide you with information about your condition and available resources, such as support groups and research opportunities. They will also work with you to find a suitable treatment, such as cholinesterase inhibitors for symptom management.
Next Steps After Alzheimer’s Diagnosis
A diagnosis provides you with access to the information you need to face the challenges of dementia, but it can be difficult to know what to do next. It can be a shock to the person with dementia and their loved ones, so it is important to take some time to process any feelings that may arise following the diagnosis.
Everyone manages a dementia diagnosis differently, but some key actions to take include:
- Organising your appointments: confirm whether there will be follow-up appointments, how often appointments should take place, and who your main point of contact is.
- Tell your loved ones: while difficult, it’s important to tell family and friends so they know how best to support you.
- Arrange a lasting power of attorney (LPA): an LPA is a legal document that names someone who will be able to make decisions on your behalf if and when you no longer have the capacity to do so.
- Record your future wishes: create a care plan that outlines your wishes about your future medical treatment and care.
- Inform the DVLA and vehicle insurance company: if you drive, you’re legally required to notify the DVLA and your insurance company about your diagnosis. This doesn’t automatically mean giving up your licence; instead, you might be issued a short-term licence for one, two, or five years.
Join Alzheimer’s Research
A recent report found that around 99% of eligible individuals have never received a referral to or considered participating in an Alzheimer’s clinical trial2. While there are nearly one million people in the UK living with dementia, there are currently no treatments to stop or prevent the health conditions (most commonly Alzheimer’s) that cause it.
If you are aged 50 to 85 with Alzheimer’s, you could be eligible for MAC’s clinical trial, investigating a potential medicine for the treatment of Alzheimer’s. It is hoped that the trial medicine will reduce the risk of symptoms such as psychosis/delusions in people living with Alzheimer’s.
Eligible participants and their caregiver/study partner will each receive up to £1,595 for their time and commitment, plus travel expenses or transport for visits.
Find out more on our Alzheimer’s study webpage.
Useful Resources
If you would like more information about how dementia is diagnosed, there are several organisations who provide in-depth guidance, such as:
1 Personnel Today – Stigma and fear still leading to dementia diagnosis delays 2 USC Schaeffer – Key Barriers for Clinical Trials for Alzheimer’s Disease
