‘I was diagnosed with dementia in my 40s’

Dementia was not something Peter Alexander expected to be diagnosed with in his late 40s.

It meant leaving his job and adapting to a new way of life.

Now, aged 56, Peter is passionate about addressing the stigma around the condition often associated with elderly people.

“I might not always be able to express it in the same way, but I’m still the same person I was, inside I’m still Peter,” he told BBC News NI.

Peter was 49 when he made an appointment with a neurologist and was sent for a scan.

“I was starting to struggle to meet deadlines (at work), which had never been a problem before, and during meetings, I wouldn’t be able to think of a word when speaking,” said Peter, who is originally from England but has lived in Northern Ireland with his wife, Jill, for several years.

“I remember the date very clearly, it was 14 January 2018 when the results came back and the doctor said: ‘Peter, I have diagnosed you with having Frontotemporal dementia’.

“I was basically told that it was no longer safe for me to work because I have diminished judgment and I was losing my filter, so it was a lot to adapt to.”

Frontotemporal dementia is an uncommon type of dementia that causes problems with behaviour and language.

“People think when you have dementia it’s only about forgetting things but it’s more complex, it can manifest in different ways.

“I don’t want to be treated differently, it’s imperative that people actually see the person, see beyond the condition.

“Sadly for many people, the diagnosis can take an awful long time and that puts an enormous amount of pressure on the family unit.”

Dementia is a syndrome (a group of related symptoms) associated with an ongoing decline of brain functioning.

Memory loss is one of the most common symptoms, particularly the struggle to remember recent events.

Others can include changes to behaviour, mood and personality, becoming lost in familiar places, or being unable to find the right word in a conversation.

It can reach the point where people don’t know when they need to eat or drink.

More than 22,000 people are living with dementia in Northern Ireland, according to the Alzheimer’s Society.

The number of people living with dementia in Northern Ireland is expected to almost triple by 2051 to 60,000. The Southern Trust is expected to have the highest number of people living with the condition by 2032.

While dementia is often seen as a disease of old age, about 5% of people with dementia are classed as having young-onset dementia.

People whose symptoms started when they were under the age of 65 are often known as having young-onset dementia.

The Alzheimer’s Society estimates that there are more than 70,000 people in the UK living with young-onset dementia.

In recent months, Peter has teamed up with other people in Northern Ireland living with dementia to make a film about their experience of everyday life.

The documentary called Hear Our Voice primarily focuses on people with young-onset dementia.

It offers a glimpse of what living with dementia is like, in the hope that it will create better understanding and empathy.

Peter features throughout the film and narrates it.

“Respect was granted to people who have dementia to make and take control of the film to help us get across the unique challenges we have,” he said.

The film features members of Dementia NI.

The group was set up in 2015 by five people living with dementia, but 10 years on they now have 15 groups across Northern Ireland.

The groups worked alongside the Southern and South Eastern health trusts when making the Hear Our Voice project.

Dr Christopher Southwell, a consultant in Old Age Psychiatry in the Southern Trust, believes the film promotes a powerful message.

“Dementia is a condition that has a big impact on patients and their families and sometimes as healthcare professionals we acknowledge that there are things that can be done better,” he said.

“When I got involved and eventually watched the film, it was important for me to be able to say to people like Peter and others behind the film that I do hear your voice and take on board what you’re saying.”

Members of Dementia NI recently met Health Minister Mike Nesbitt at Stormont.

They called on him to make reducing the time it takes to get a dementia diagnosis a priority.

Shortly after the film was released, in a statement, the health minister said: “I congratulate the trusts and Dementia NI for developing this powerful documentary which I have no doubt will challenge existing stereotypes and will be an informative way to educate people in how best to support individuals living with dementia.”

Karen Kerr is head of engagement at Dementia NI.

She said: “The members are really passionate about the importance of getting an early diagnosis and once you get an early diagnosis it opens up a lot of opportunities so that you can continue to live well with a sense of purpose and that’s also what the film is trying to highlight.

“When you hear from people like Peter, I think it demonstrates that people with dementia have a voice not just for themselves but for everyone affected with dementia.”

Peter added: “When it comes to people like me with dementia, please don’t write us off, we have a voice, dementia doesn’t define us.”