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“Living with dementia is demanding”
Maq, who lives in Stoke-on-Trent, was diagnosed with frontotemporal dementia in 2010 at the age of 54.
His diagnosis was a shock – he was working as an accountant at the time and had experienced no symptoms of dementia.
“I had gone into the hospital for major heart surgery when during a brain scan, they noticed signs of frontotemporal dementia (FTD),” Maq explains.
“Following surgery, a consultant visited me at home and told me that while my heart was now fine, they’d spotted something in my brain. I was shocked. It was hard for me to accept the news as I wasn’t experiencing any symptoms.”
At the time of his diagnosis, Maq knew little about young onset dementia (where symptoms develop before the age of 65) and was only aware of how dementia affected people in the later stages.
“I was already contemplating stopping work when I had heart surgery, and the diagnosis of dementia sped up my decision,” says Maq. “I thought, ‘If I’ve got this condition and there is no cure, there is no way I can carry on working’ – so I stopped.”
Giving up work was a big adjustment for Maq, who was used to being on call for his clients at all hours. It also resulted in him becoming less financially independent – especially as he has found it difficult to claim certain benefits like Personal Independence Payment (PIP).
“My diagnosis was hard on my family”
It took Maq over 12 months to share his dementia diagnosis with his family. “My wife had passed away and I had kids of school age. My five children were shocked and were left with their mouths wide open,” he says.
“My mother was alive at the time and lived with my family. They had seen me through the recovery period post-surgery, so my dementia diagnosis was very hard on them.”
As Maq’s dementia has progressed, the symptoms have become more obvious. “Dementia changes my mood and perception and affects me physically and psychologically,” he explains.
“My mind does wander off, and I don’t want to show myself being agitated so I hide that part of me by sitting on my own and reading a book. It’s demanding living with this condition.”
Connecting with other people in a similar situation is a lifeline. “I feel safe when I’m at home and communicating with people on Zoom,” Maq says. “I am connected virtually with over 3,000 people living with dementia. I feel like we get each other, and I’ve made friends for life.”
“I want to break the stigma of dementia”
Although Maq knows his condition is progressive, he is determined to live positively with the diagnosis. “I don’t like the word dementia as people assume it’s a condition for older people and that it’s related to memory issues,” he says.
“Knowing that frontotemporal dementia is incurable is scary – I can’t pretend it’s not there and I can’t escape it, but I keep myself occupied and don’t let it bog me down.”
Maq now raises awareness of dementia as part of Dementia UK’s Lived Experience Advisory Panel (LEAP). “I meet with dementia specialist Admiral Nurses in person, visit GP surgeries and talk on panels,” he says.
“In the South Asian community, dementia is considered a taboo subject – no one wants to seek help and people don’t know where to go if they do want support – so I act as a liaison between the South Asian community and Admiral Nurses.
By getting involved, I feel a sense of achievement and hopefully, I’m helping to break the stigma associated with the condition. I don’t know how many years I have left but I want to make a difference while I can.”
Young onset dementia
We’ve created a section of content about young onset dementia (dementia symptoms under 65) to bring together information and resources that have been created specifically for younger people, that cover the key issues that you may faceRead more
Support for younger people can be hard to find so we have created a database of young onset groups and services across the UKFind groups and services
How we can support you
Whether you have a question around young onset dementia that needs an immediate answer or need emotional support when life feels overwhelming, these are the ways our dementia specialist Admiral Nurses can support youGet support