Change the journey: Moving from fear to hope after a dementia diagnosis

‘For the first couple of years I was scared, frightened, but now I’m more concerned about changing other people’s perceptions,’ says Masood Qureshi.

Masood was diagnosed with Alzheimer’s and frontotemporal dementia (FTD) in 2011, aged 54. After finally accepting his dementia, Masood wants to raise awareness of the condition and to fight stigma about it. He wants his experiences to benefit other people in a similar position. 

‘While no one can change the outcome of dementia, with the right support I think you can change the journey,’ he says. 

Press the orange play button to hear Masood’s story in his own words – and about how he’s been doing since the coronavirus lockdown:

Common ground 

Masood, now 63, grew up in Pakistan, raised mostly by his mother, with aunties and uncles also around. His father worked in England where Masood, then in his mid-teens, and his mother joined him in 1971. 

‘The host community accepted and welcomed us,’ says Masood, who attended a Catholic school in Stoke-on-Trent, the Staffordshire city in which he still lives. 

‘I belonged to a religious Muslim family, but the school was keen to listen to me. We actually had quite a lot in common faith-wise – we explored it.’ 

‘It was an experience seeing snow for the first time. On TV it looked so nice to watch, so I couldn’t understand how something so harmless could cause accidents!’ says Masood.

Other aspects of English life took a bit more adjusting to. 

‘We’d never experienced so much cold,’ says Masood, who is widely known as Maq. 

‘It was an experience seeing snow for the first time. On TV it looked so nice to watch, so I couldn’t understand how something so harmless could cause accidents!’ 

Business venture 

In the mid-70s, with his father taken ill and the family in need of income, Masood looked for work. He started as an apprentice at tyre manufacturer Michelin, working his way through the ranks until he left the company when it moved back to France. 

He returned to college to learn bookkeeping and accountancy, and then started his own business, which he ran for around six years. He also supported local people and organisations as a translator, interpreter and immigration adviser, and held senior positions with religious organisations. 

‘I had to give up office life, because I couldn’t be there and look after my five children at the same time,’ says Masood. 

Masood’s wife died in 1998, two years after a breast cancer diagnosis. 

‘I had to give up office life, because I couldn’t be there and look after my five children at the same time,’ he says. 

Masood eventually found a part-time job with a double-glazing company, where he stayed for three or four years until triple bypass heart surgery ended his working life. He remarried six years ago – his wife currently lives abroad – and has five grandchildren. 

Anxiety and agitation 

Around eight years ago, a visiting healthcare professional mentioned the results of a brain scan taken after the heart surgery. This had shown that Masood had Alzheimer’s disease and frontotemporal dementia (FTD). FTD is a less common type of dementia that can affect speech, behaviour, problem-solving, planning and the control of emotions. 

‘The diagnosis was accidental – I just didn’t know what to think,’ says Masood. ‘At first I didn’t accept it, and then you think of the worst possible scenario. 

‘I didn’t take it well initially and it took me quite some time to come to terms with it. Because no matter what anybody says about having to be positive, it’s still a horrible disease that you know there’s no cure for.’ 

Masood takes comfort that he was at least diagnosed in the earlier stages of the condition, which doesn’t appear to have got much worse since. 

‘I felt I could live well with it and do something about it, which I think is working,’ he says. ‘However, I don’t know if it’s going to move all of a sudden, which concerns me.’ 

‘I don’t know whether it’s the dementia or whether I’ve just brought these symptoms on myself, but it’s frightening,’ says Masood. 

Masood has experienced anxiety and depression, and finds himself feeling agitated and worried about things that previously wouldn’t have concerned him. 

‘I don’t know whether it’s the dementia or whether I’ve just brought these symptoms on myself, but it’s frightening,’ he says. 

‘I have lost some friends – I’ve not been in contact – because at the back of my mind I was worrying that I might say something that offends them or makes a fool of myself.’ 

Tasks that used to be second nature have also become harder to accomplish. 

‘It does concern me,’ he says. ‘I’ve cried myself to sleep over it.’ 

Speaking out 

Masood gets strong practical, financial and emotional support from his very understanding family. He contacted the Society after finding out about us on social media. 

‘Alzheimer’s Society has been very good,’ he says. ‘They’ve visited me and advised me on my financial situation. I’ve been a professional all my working life and don’t want to go on benefits really, but I don’t understand what I’m entitled to, which is why financially I’m in a mess.’ 

Masood also credits DEEP, the Dementia Engagement and Empowerment Project, which supports people with dementia to influence the attitudes, services and policies that affect their lives. 

‘I was a founder member of a DEEP peer support group – the Beth Johnson Foundation – which has helped tremendously,’ he says. ‘Their support and knowledge have helped me to come out and speak about dementia.’ 

Taboo subject 

It took a long time for Masood to accept that he had dementia. However, he’s now reached a point where he not only acknowledges his condition but wants to do all he can to raise awareness of it. 

He’s especially focused on a lack of understanding about dementia among South Asian communities. 

‘I would like to hone in on them and educate them about it,’ he says. 

‘I feel there are a lot of South Asian people living with dementia who are not aware of it or don’t understand it. It’s a taboo subject with some of them, so I’d like to reach them and give some insight – where to go, who to contact, how to cope. It’s quite difficult but I’ll have a go.’ 

‘The person living with dementia is the expert, so I’m hoping to get the message across,’ says Masood.

Masood has been supported by Alzheimer’s Society to give presentations about his experiences of dementia to medical students at Keele University. He has also sat on panels of doctors and patients. 

‘I think most healthcare professionals don’t understand dementia fully, so I want people to know what a person with dementia is going through – our thoughts and feelings, from the heart,’ he says. 

‘The person living with dementia is the expert, so I’m hoping to get the message across.’ 

Through the Beth Johnson Foundation, Masood was involved in creating a comic-style booklet called There’s no bus map for dementia, which saw people with dementia work with artists to find ways of representing their experiences of living well with the condition. 

‘People do not stop experiencing things just because they’ve stopped remembering things,’ says Masood, who is a Dementia Friend. ‘They are still the same person and can still do a lot of things.’ 

A different life 

Masood recently volunteered for the Society’s Side by Side service, where he will be supporting another person with dementia to keep doing the activities they love. 

‘I would like to pass on some of my experience and ways I’ve adapted to cope with dementia,’ he says. ‘I can say there is life with dementia, it’s just different.’ 

Masood doesn’t find it easy to speak about his experiences but is motivated by the thought that his words might make a difference to other people who have dementia.

‘I believe somebody will benefit from it. I sincerely hope so,’ says Masood. 

‘It’s difficult for me to talk about dementia. There’s stigma, and it’s embarrassing for somebody who’s been a professional all his life,’ he says. 

‘It takes a lot of energy, but it also buzzes me up because I’ve done something that will maybe help someone. I believe somebody will benefit from it. I sincerely hope so.’