What are the dangers of undiagnosed dementia?

Written by Zenya Smith21/06/22


Dementia Care

A dementia diagnosis is life-changing, not just for the person living with the condition, but those around them too. While it can be scary, getting an early diagnosis of dementia can provides a range of benefits, and can help keep you safe by ensuring you have the right support with potentially dangerous activities, such as driving or cooking. 

In this article we’ll look at the reasons why going undiagnosed can pose problems, as well as some of the benefits of getting an official diagnosis. 

What is dementia?

Dementia is a collection of symptoms that includes memory difficulties and issues with problem-solving, language and thinking. Initially, these symptoms can be subtle, but become increasingly apparent and, as time passes, they affect the quality of daily life and can include behavioural and emotional changes.

Did you know – 

  • According to Alzheimer’s Research UK, around 40% of those aged 65 or over thought to be living with undiagnosed dementia
  • Internationally, 75% of all dementia cases go undiagnosed across the world, that’s estimated to be around 41 million cases. 

How is dementia diagnosed?

The first step in receiving a dementia diagnosis is to visit the GP if memory difficulties develop, or there are any concerns regarding memory in loved ones over the age of 65. The GP will refer your relative on to a specialist practitioner such as a psychiatrist, geriatrician or neurologist for a more detailed assessment. This specialist may work in a dedicated memory clinic with other professionals who are experienced in diagnosing and treating memory problems, and advising people with dementia, and their families.

An assessment of dementia is often made through a collection of screening tests, these may include physical examinations to rule out other health conditions, reviewing your medical records, testing mental capability, blood tests, and performing a number of different brain scans. 

Why is it important to get dementia diagnosed?

It can give you answers 

While it’s natural to feel sad, angry, or anxious about a diagnosis, some people with dementia actually feel a sense of relief too, as they’re able to understand why they’ve been feeling or experiencing certain things. A clinical diagnosis can give both them and their family long-awaited answers for memory loss, cognitive impairment, difficulties in communicating, and out of character behaviour. 

It ensures you get the right treatment

There are over 200 types of dementia, and while many share similar symptoms, there are nuances between them. For example, some forms of vascular dementia may cause an early loss of bladder control, while frontotemporal dementia more often impacts speech due to frontotemporal degeneration in the brain. 

Getting a timely diagnosis should let you know what type of dementia you have – in cases of mixed dementia you may have more than one.  While there is no cure, dementia can be a treatable condition in the early stages, and getting an earlier diagnosis can help you access the right medicines to help you manage symptoms and stay Independent for as long as possible. 

There are a number of complementary therapies you can access too alongside dementia drugs. Creative and expressive activities such as music, art and singing have proved effective in improving overall wellbeing and lifting mood and self-esteem.

It can help to keep you safe 

A study from Johns Hopkins University found that compared to patients with dementia, people living with undiagnosed dementia are twice as likely to do potentially unsafe activities such as driving, cooking, managing finances and administering their own medication. 

The study revealed that 28% of those with undiagnosed dementia still drove their cars, compared with only 17% of those who had received a dementia diagnosis.

29% of those struggling with symptoms but no dementia diagnosis had sole responsibility for their finances, compared with 12% of those with undiagnosed dementia.

A staggering 50% of those living with undiagnosed dementia and exhibiting dementia symptoms were still responsible for administering their own medication, compared with 22% of those diagnosed with dementia.

These activities require a high level of cognition. People living with cognitive decline are likely to make mistakes that can have far reaching consequences. For example, they may forget about a pot that’s boiling on the hob, get confused or lost while driving, or fall victim to a financial scam and transfer a lot of money to someone they don’t know. 

The study also reported that when a person goes through the correct diagnostic process, their family and friends recognise that they’ll likely need help with certain daily activities, or need to stop them all together at some point in the future. However, if a person with dementia isn’t formally diagnosed, their family may not be aware that a problem exists or miss the signs – which may put their loved one in danger. 


What are benefits of early diagnosis?

 Diagnosis is an opportunity

A formal diagnosis is an opportunity to seek support for both the person navigating dementia issues and their family members, who are keen to support them. The different stages of dementia can bring with them new symptoms and unique challenges so having the right support in place early on can help you better prepare for the future, build up a solid support network and create the best possible quality of life. For example – 

  • Your health care team will be able to sign post you to local support groups and memory cafes to help  you adapt to life with dementia and keep your mind active. 
  • You can be referred via the NHS to counselling or mental health services, to help you manage the emotional impact of diagnosis.
  • You can begin to make adaptations to the home to make it more dementia friendly. Your local council may be able to help with some of the costs, and you may be referred to an occupational therapist to help identify changes to help you stay independent. 
  • You can apply for funding support from your local council, if you’re finding things difficult and need professional care services. 
  • Record your wishes for the future – including how and where you’d like to be cared for, who you’d like to manage your money, and who you’d like to make decisions on your behalf if you’re unable to. 
  • If you’re a family member and are supporting a loved one, you can register as a carer with your GP – this will help you to access support services and more flexible appointments
  • Family members can also ask to complete a carers assessment withe their local council. If eligible, they’ll draw up a support plan to help you emotionally, physically, and financially in your new role as a caregiver. 


Latest dementia statistics

It’s believed that one in three people born in the UK today will develop dementia in their lifetime. There are currently 900,000 people living with dementia in the United Kingdom and this is expected to rise to 1.6 million by 2040.

Dementia awareness is increasing as countries around the world battle the prevalence of dementia cases. It’s crucial to say something if you notice a change or deterioration in your own or your loved one’s memory or any dementia-like symptoms. A dementia diagnosis can be tremendously helpful in improving quality of life and lessening the burden of fear and uncertainty.

It’s understandable to question the reasoning behind a diagnosis of Alzheimer’s or dementia because of the degenerative nature of the conditions and the limited availability of effective medical treatment available. While this may appear a potentially sound argument at first glance, in practice it could be catastrophic for the individual involved and their family when dealing with these cognitive challenges.

Seizing Control of Dementia: Agnes Houston Didn’t Shrink Away From Her Diagnosis, She Rose Up To Meet It

We talked to her about her experience, from diagnosis to her pioneering activism and research into sensory issues in dementia that has challenged stigma and given valuable and much-needed information to those living with the disease.

This article is for informational purposes only and not to be taken as medical advice. For medical advice, always consult your GP.

Learn more about dementia care

Take a look at more Elder guides on living with and caring for dementia. 

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