An Alzheimer’s Society specialist has outlined key indicators of young-onset dementia. His advice comes after the deeply personal account shared by actor and charity supporter Anne-Marie Duff on BBC Breakfast today, March 4.

Duff opened up about her brother Eddie’s battle with early-onset Alzheimer’s disease and the profound effect it’s had on their family life. “Generally speaking he doesn’t know who I am, but he knows that we have something special, and I find that magic,” Anne-Marie revealed in a touching interview with BBC’s Tim Muffett.

Describing the heartbreak of the diagnosis she said: “It’s really distressing, actually. These things never affect the patient only, they affect all of us because you don’t want them to experience pain, discomfort, unhappiness, all of those things – and it does lie ahead.”

Eddie started showing signs of the illness 15 years ago at an unusually young age. Anne says many people faced disbelief as no one suspected dementia initially. “Your first thought will never be dementia when somebody’s in their early forties,” Anne-Marie explained. The severity of the situation became clear once Eddie lost his job and subsequently his home.

“You start thinking, ‘Is somebody drinking? Are they taking drugs? Are they maybe having a bit of a breakdown?’ And then the world started to fall apart around him. He lost his job, and because he lost his job, he lost his home,” she said.

Anne-Marie was performing at the National Theatre when she received a call from her local doctor, informing her that her brother had come to the clinic in the middle of a panic attack. “He was admitted for around three weeks, and it became evident that he was dealing with a type of dementia,” she shared.

In light of Anne-Marie’s story, Alzheimer’s Society dementia expert Simon Wheeler has offered advice on the warning signs to watch for and how to support someone diagnosed with the condition. His guidance follows a recent EastEnders storyline where character Nigel Bates, portrayed by actor Paul Bradley, disclosed his diagnosis of young-onset dementia, reports Gloucestershire Live.

What is young-onset dementia?

It’s a term used when dementia develops before the age of 65, typically between 30 and 65. Dementia is a collection of symptoms caused by various diseases that harm the brain.

These symptoms, which include memory issues, problem-solving difficulties, language struggles and behavioural changes, worsen over time. It’s estimated that one in three people born in the UK today will develop dementia in their lifetime. Over 70,800 people in the UK are currently living with young-onset dementia.

The cause of young-onset dementia can be determined by considering various factors, including:

• Alzheimer’s disease
• Frontotemporal dementia (FTD)
• Posterior cortical atrophy (PCA)
• Vascular dementias
• Genetic/familial dementias
• Metabolic disorders
• Secondary dementias from alcohol use disorder, traumatic brain injury, and infections

A doctor will diagnose it through comprehensive screening, including collateral history, neuroimaging, lumbar puncture, neuropsychology, and genetic testing.

Early diagnosis and treatment can lead to a better quality of life. Maintaining a healthy lifestyle with a balanced diet, regular exercise, and avoiding alcohol and other substances that may affect memory, thinking, and behaviour can reduce your risk of the condition.

The NHS has advised: “It’s normal for your memory to be affected by stress, tiredness, certain illnesses and medicines. But if you’re becoming increasingly forgetful, particularly if you’re over the age of 65, it’s a good idea to talk to a GP about the early signs of dementia.”

What signs should I look out for?

While memory loss is often associated with ageing, younger people with dementia may experience symptoms unrelated to memory, such as behavioural changes, language difficulties, vision issues, or alterations in personality. In younger individuals, these symptoms can be misattributed to stress, depression, menopause, or troubles at work or in personal relationships.

Addressing this issue, Simon from the Alzheimer’s Society urges: “We encourage anyone worried about dementia symptoms in themselves or a loved one to speak to their GP. You can also use the Alzheimer’s Society dementia symptoms checklist at alzheimers.org.uk/checklist.”

• personality
• behaviour
• language
• social functioning
• relationships with others
• activities of everyday living
• motivation
• mood – depression, anxiety
• concentration levels
• decision making and problem solving
• vision and spatial awareness

Dementia UK points out that those suffering from young onset dementia may present with different early symptoms than older adults, varying depending on the type and region of the brain affected, particularly when it involves the frontal and temporal lobes. If you’ve noticed potential signs of dementia in someone, sparking that conversation is crucial.

I’ve noticed the signs of dementia in someone, how can I talk to them about it?

“This will differ from person to person,” Simon added. “Some people may be aware that something is wrong, whereas others may not be. The way the person responds will depend very much on their personality, so it is useful to think about what you know about the person to try to find a suitable way to broach the conversation.”

He suggested that it often helps to mention signs that you have noticed and talk about speaking to a GP to investigate things, rather than talking specifically about dementia.

There are many conditions which can cause similar symptoms to dementia, including vitamin deficiencies, thyroid problems, urinary tract infections, and even things like stress, anxiety and lack of sleep. Simon says: “Mentioning those things could be more helpful than talking only about dementia, which may cause unnecessary distress.”

What can you do if someone has dementia but is in denial?

If a person is experiencing denial or lack of insight into their dementia diagnosis and symptoms, then this can make putting care in place quite challenging.

Simon adds: “Once again, it is helpful to think about what you know about the person and what might motivate them to accept different types of help. It can also be useful to think about past times that the person has been persuaded, and adapt that same approach to accepting help.”

There may also be ways to provide help without needing to mention the person’s condition at all.

With technology advancing at a rapid pace, it could be a lifeline for those struggling with daily tasks at home, such as using electronic medication boxes, modified telephones or remote controls. Something as simple as labelling kitchen drawers can also greatly assist individuals who have difficulty remembering where items are kept.

Experts recommend trialling support methods; for example, trying online food shopping or having a short weekly visit from a carer and then adjusting the level of help based on that experience.

Why is getting a diagnosis vital?

One in three people with dementia in the UK do not have a formal diagnosis, leaving thousands without the crucial care and support that comes with this acknowledgement from medical professionals.

As Simon explains: “At Alzheimer’s Society, we know that getting a dementia diagnosis can be daunting, but we believe it is better to know. Nine out of 10 people with dementia told us they benefitted from receiving a diagnosis, allowing them to access the dedicated support they desperately needed, plan for the future and avoid ending up in crisis.”

For more information and advice, call Alzheimer’s Society’s Dementia Support Line on 0333 150 3456 or visit alzheimers.org.uk.