The older we get, the higher our risk of developing dementia. That said, it is wrong to assume that this disease is just age related. While it’s true that your risk of dementia increases as you age and it is more common in those over the age of 65, it’s a myth to assume that dementia can only occur in the elderly. According to the Alzheimer’s Society, there are approximately 42,000 people in the UK with a form of young onset dementia, where ‘young’ means between the ages of 30 and 65. For those people, the effects of dementia can be even more devastating as many in this age bracket still struggle to balance work and paying bills while coming to terms with the challenges they face with the condition.
“Dementia can and does affect people at a younger age,” says Kate Fallows, Communications Coordinator from YoungDementia UK. “The first symptoms in younger people can be problems with language, vision, behaviour or personality, rather than memory issues. These symptoms might be caused by things like stress, anxiety, depression, or menopause but the possibility that dementia could be the cause should not be overlooked, just because of age. We advise anyone who has any cause for concern, to make an appointment to see their doctor.”
One of the main challenges younger people with symptoms face is that awareness of the disease in people under 60 can be low among GPs, Many people are diagnosed late, and their symptoms put down to something else, usually depression or stress. Currently, it’s thought around 5% of people with dementia are aged 30-65 but the true percentage could be as much as 6%-9% of those living with a diagnosis.
Peter Berry from Suffolk was diagnosed with Alzheimer’s at the age of 52, and still needs to work to keep up his mortgage payments. Sadly, he had to let go of the family business, WJ Berry & Sons, a timber sawmilling company launched by his father many years ago, which is now run by his son-in-law. Peter still works in the business and feels the pressure to keep working for as long as possible to keep up his mortgage payments. “You go from building everything up, owning a business and employing people to having nothing in a very short space of time,” he says. “Here I am, a man with Alzheimer’s, getting up at 6am and working as much as I can to pump as much money as possible into my house. That can’t be right.”
Rita Pepper, whose daughter Carla Bramall was diagnosed with Alzheimer’s at the age of 36, but who began showing symptoms of the disease aged just 30, is anxious to highlight that younger people can develop dementia. “People don’t believe you when you say what’s wrong with Carla because of her age and I just want to make people aware that it does happen in younger people,” says Rita. Tragically, Carla inherited a rare form of dementia from her father, Barry, who died from the disease. It also claimed the lives of her granddad and her uncle while in their 40s and her cousin who is under the age of 40 has the disease and is living in a care home.
Rita first noticed the signs of something wrong when her daughter began getting lost.
“Carla was getting lost driving around and losing things,” says Rita. “My grandson had taken over a lot of the chores. He was ordering takeaways instead of Carla cooking meals and one day I realised he was going out in the car with her, telling her where to go. I thought: ‘It much’s worse than I thought’. She had had a few crashes and couldn’t explain to me what had happened.”
So should we be worried if we start to forget things? It’s important to understand what causes dementia in younger people.
Familial Alzheimer’s disease is a form of dementia that can be inherited. According to Alzheimer’s Research UK, researchers have found three faulty genes known to cause early-onset inherited Alzheimer’s, though others may be yet to be discovered. The three genes are:
- amyloid precursor protein (APP)
- presenilin 1 (PSEN1)
- presenilin 2 (PSEN)
“Someone who inherits one of the three faulty genes known to cause familial Alzheimer’s is virtually guaranteed to develop the disease,” says Dr Laura Phipps, Head of Communications and Engagement at Alzheimer’s Research UK. “Their children have a 50 per cent chance of inheriting the gene and developing it too. There is some evidence that early-onset Alzheimer’s may progress faster and more aggressively (than dementia in an older person), but experts are unsure whether this is conclusive. Every person’s experience is different and there can be a huge variability in people’s response to the disease. Difficulties with diagnosis may mean that people are diagnosed later, making their progression seem faster.”
But it’s important to not jump to conclusions and to put things into perspective. Common memory problems or forgetting why you went into a room because you were distracted may well be nothing. While forgetting things from time to time is perfectly normal and may not mean you could have dementia, it’s important to recognise that the disease does affect younger people and anyone worried should see their GP.
There is a clear difference between forgetting something because you were distracted and having no recollection of an event or what you were looking for. Here are some key symptoms of dementia to watch for:
Problems with short-term memory
Difficulty recalling particularly recent events. A person may prompt you about something you did together, such as where you went, what you had for lunch or what happened while you travelled somewhere, and you may have no recollection at all. A person who doesn’t have dementia would normally recall an event or an occasion after being prompted.
Not following a story
Reading something and not being able to remember the first part of it when you get towards the end.
Not being able to follow a conversation and fully understand what the other person is saying or repeatedly asking the same questions during a conversation.
Planning and calculation issues
Difficulties with calculation and doing financial planning.
Difficulty finding their way around, especially in familiar environments. Peter Berry first noticed something might have been wrong when he got lost when doing what should have been familiar trips.
Repeating things frequently
Repeating the same questions or information to the same person 20 minutes after saying them before and having no idea they said the same thing earlier.
The Alzheimer’s Show is the UK’s leading event in dementia care and offers help to carers, families and those living with dementia as well as healthcare professionals providing care for those affected. The event takes place at Olympia London on 9-10 June and EventCity Manchester on 23-24 June. Visit https://alzheimersshow.co.uk/tickets/