Keeping busy and living well after a diagnosis of frontotemporal dementia

Leading an active life has been key to coping with dementia and mental health challenges for Warren Berman, a 70-year-old in Leeds.

Warren was diagnosed with Frontotemporal dementia (FTD), also known as Pick’s disease or frontal lobe dementia, in 2019. He says his neighbours were the first to notice the symptoms.

‘I have some very, very good friends, neighbours, who live near me, and they see me four or five times a week,’ says Warren. 

‘They noticed that my behaviour had changed – silly things like moving this table I have. My friend asked me why I had moved it and I couldn’t give an answer.’

After Warren’s neighbours noticed these changes, he made an appointment with his GP. 

‘I didn’t notice it, so I went to the doctors and then I was referred to a hospital for a brain scan,’ he says. 

‘When the doctor got the results, they referred me to the memory clinic and I was diagnosed with frontal lobe dementia.

‘It didn’t worry me when I was told. But I have to say, about five or six weeks later, my anxiety increased.’

Short-term memory

Frontotemporal dementia (FTD) is caused by damage to areas at the front and sides of the brain. While early Alzheimer’s symptoms usually involve memory problems, the first symptoms of FTD often include changes to personality and behaviour. 

Many people diagnosed with FTD can still remember recent events, though its symptoms vary and they worsen over time. Warren says his short-term memory is affected by FTD.

‘If somebody asks me a question I’ll give an answer, but it’s not in the context of the question that was asked,’ he explains.

‘In my spare room I have some dried food, and I’ll go in there to get something and I’ll forget it. 

‘Sometimes I sleep in the afternoon because I get tired.’

Loving parents

Warren remembers his upbringing fondly and recalls that his father also had dementia. 

‘We had very loving parents, me and my older sister, who I’m close to and lives a few miles away,’ he says. ‘We just had a lovely time. Our parents were very good to us – they’d buy us things. They were just from a working-class family.

‘My father had dementia and the type of dementia that I’ve got can be hereditary. He died in 1982 when they didn’t have as much knowledge about Alzheimer’s or dementia, so I’m not sure if this is inherited or not.’

Although Warren is unsure if his FTD is hereditary, this type of dementia is more likely to run in the family than other types. In ‘familial FTD’ a single gene can cause FTD if it is passed on from parent to child.

FTD is mostly diagnosed between the ages of 45 and 65, which is much younger than more common types of dementia. 

Speaking about the actor Bruce Willis’s recent diagnosis at the age of 67, Warren says, ‘I feel very sorry for him, but it’s important to other people for him to share his diagnosis.’

Mental health

Bullying at school had a lifelong impact on Warren and may have shaped his work in later life. 

‘I went to what they called the secondary modern in the mid to late 60s,’ he says. ‘The first couple of years while I was there, I didn’t enjoy it. I was bullied by other pupils because I was Jewish. There were six pupils attacking me.

‘I’ve had mental health issues throughout my life and one of the contributing factors is that I was bullied.’

Warren eventually drew on his experience of mental health issues in his career. 

‘My parents had a retail business and I was with them for a number of years,’ he says. ‘Then I started my own successful business aged 35. But in the early 90s, things got really tough. The recession and money meant I just couldn’t afford to carry on. 

‘I went on to become a care worker to support people with mental health problems.’

Rewarding work

Warren described his career as rewarding but also challenging. 

‘I’ve had mental health issues, and I’ve worked with people with mental health issues, so I’ve seen it from both sides,’ he says.

In his role, Warren helped people who would otherwise find everyday tasks very difficult or impossible. 

‘My activities were helping people to get out of their own homes, lots of people found it very difficult to get out,’ he says. 

‘I saw one person who found it very difficult to leave their home. So initially, we just walked to outside the door. Then a little bit later, we walked maybe a couple hundred yards. They were very unhappy and felt very uneasy, but I encouraged them to do it.

‘After a couple of months, we managed to get to the supermarket. A bit later, he said he’d not been into Leeds for over 30 years, so I went with him.’

New opportunities

Warren is involved in several projects for people with dementia, including Up and Go – a group that’s part of the Dementia Engagement and Empowerment Project (DEEP) network and which aims to help make Leeds more dementia friendly.

He’s also taken part in research opportunities for people with dementia, including advising emergency services on dementia-friendly ambulances and helping rail companies to improve accessibility.

‘I hadn’t done any form of research before,’ says Warren. ‘If someone said to me four or five years ago that I’d be doing research, I’d have said, “Don’t be stupid”! It has opened up completely new opportunities.

‘When I was told about the project I thought, “Oh no, I won’t be able to do that,” because anything new, anything out of my comfort zone, I find very difficult. But it was interesting, and I really enjoyed it.

‘It’s helped me with my self-confidence. I’ve received help from various services, and I’d like to put something back in for the people with dementia – to help improve their lives a little bit.’

Last year, Warren was invited to a Zoom seminar with Alzheimer’s Society staff. 

‘The main purpose of the seminar was to try and break down any obstacles and fears, and to overcome doubts staff may have when including people living with dementia,’ he says. ‘These discussions showed how this could improve services.’

Keeping creative

Warren has a busy social calendar and several hobbies, including listening to music and reading.

‘My favourite era of music was the 1970s, so I like listening to stations that play 70s music – Hall and Oates, Steely Dan, The Eagles, Crosby, Stills Nash and Young,’ he says. 

‘The next hobby I have is reading. I like autobiographies, thrillers and murder mysteries. The book that I’m reading now is by the actress Sian Phillips. There’s about 500 pages and I’ve read about 45, so that’ll keep me going!’ 

Warren also enjoys painting by numbers and his completed pictures are hung around his home. They include paintings of the Amalfi Coast, Notre Dame and the Eiffel Tower. 

‘They take between two and four months to complete – a labour of love,’ Warren says. ‘It helps me to relax, helps me to keep calm.’

‘I try not to worry about dementia. If I did, I would feel a lot worse. My advice to anyone with dementia would be to keep busy.’