Maq’s story

“Living with dementia is demanding”

Maq, who lives in Stoke-on-Trent, was diagnosed with frontotemporal dementia in 2010 at the age of 54.

“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.”

“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.”