‘Awareness is key to end stigma around dementia’
URVASHI, WHOSE HUSBAND WAS DIAGNOSED WITH THE CONDITION IN 2011, SPEAKS TO EASTERN EYE AS PART OF ALZHEIMER’S RESEARCH UK’S #DEMENTIAUNCOVERED CAMPAIGN
MOST of us know someone affected by dementia today, including Urvashi, whose world collapsed when her husband was diagnosed with the condition.
Having witnessed the stigma that surrounds dementia first-hand, Urvashi is working with Alzheimer’s Research UK to raise much-needed awareness about the diseases that cause it and the power of research to find a cure.
When Bhupendra, her husband of 30 years, said to her, “These kids are not mine,” about their three teenage sons, she knew something was seriously wrong.
Bhupendra had been having “brain fogs” for a little while – he didn’t know what crisps were and needed to be reminded when it was Valentine’s Day.
Urvashi put these things down to him being a bit of a “wally”, but the remark about their boys made her feel like she was talking to a stranger.
“My life was very beautiful,” Urvashi told Eastern Eye. “Bhupendra is an incredible man, very compassionate, very loving.”
However, when his behaviour became more erratic, Urvashi asked herself, “Have I married a monster who basically kept it hidden for so long?”
In 2011, her question was answered by doctors at University College London hospital after Bhupendra was diagnosed with dementia. He was 56.
“I realised it was the dementia speaking and, in some ways, it was a relief,” said Urvashi. “I knew my husband is still the loving man he always was.
“But there was also tragedy – my husband was no longer the man I knew. Life was going be tough for him. There is no cure for it. He’s quite young and this was only going get worse.
“It was a hopeless situation, but it was one I had to face and I did.”
Dementia is used to describe a group of related symptoms associated with an ongoing decline of brain function. It is caused by different underlying diseases that affect the brain, with Alzheimer’s disease being the most common.
Bhupendra was diagnosed with frontotemporal dementia, also known as FTD, a rarer type of dementia. It is thought to account for fewer than one in 20 of all dementia cases, typically affecting people between the ages of 45 and 64. However, people younger or older than this age range can also suffer with the condition.
FTD is caused by damage to cells in areas of the brain called the frontal and temporal lobes, which control personality, emotions and behaviour, as well as speech and understanding of words.
Urvashi shared her story as part of Alzheimer’s Research UK’s powerful #DementiaUncovered campaign. In partnership with digital services company, Ricoh, the campaign shares real-life stories of people with different forms of dementia and researchers working toward cures.
“When Bhupendra’s disease kicked in, I was devastated. I felt like my whole world had collapsed,” said Urvashi.
“His diagnosis hit me and my sons hard – they idolise him and he’s my best friend. We are close, so it’s difficult going through things without him. It can, sometimes, be lonely.”
Bhupendra’s symptoms started when he was in his 40s.
“At first he tried to hide it, then it got worse,” said Urvashi. “I guess I was in denial because it was too painful to see my husband like this.”
Urvashi recalled that Bhupendra started to become paranoid and his thinking became more stark.
“He loved my mum, but started to say, ‘these are my parents, and these are your parents’. I would say, ‘I love your parents and you love my parents’. And he would reply, ‘you stick to your mum and I will stick to my mum’.
“It was challenging, because the man I married was so secure, a very loving and very embracing, a progressive man.”
Bhupendra now needs care 24 hours a day as his symptoms are progressively getting worse. He can longer speak English and his grasp of Gujarati, his mother tongue, is slowly showing signs of being affected as well. He will eventually lose his ability to speak entirely, and as part of the illness, he is not able to distinguish what is edible and what is not.
In spite of the difficulties he faces, Urvashi said her husband remains a vital part of their family.
“Despite his diagnosis, Bhupendra retains his kind, calm spirit. He still loves to welcome people into our home and likes to host parties, with my help. He enjoys having lots of friends and family around, as we have always welcomed people into our home.
“A person is still there, no matter what disease you have. This is my personal belief from my experience of taking care of my husband for over 12 years. He is still the same man I married. The only difference is that he doesn’t have the ability, the cognition, to explain himself. The desire, the need to be human is still intact, just like you and me.”
According to Alzheimer’s Research UK, awareness of dementia is lower in south Asian communities. The charity’s Dementia Attitudes Monitor, an in-depth analysis of the UK’s attitudes towards dementia and research, revealed that more than one-third of British Asians (34 per cent) who responded regarded dementia as an inevitability.
When it came to ‘dementia as a cause of death’, 28 per cent of British Asians disagreed with this statement, compared to 19 per cent of those who identify as white.
More than a third (36 per cent) of south Asian respondents said they would find it hard to talk to someone who has dementia, compared with 22 per cent of their white counterparts.
“My biggest fight has been social isolation,” said Urvashi. “I’ve even been asked not to bring my husband to important family events and get-togethers, as he has lost his inhibitions and is no longer able to work out what he should and shouldn’t say in such situations.”
She added: “Dementia is a big, big problem. It’s not just minorities, this is a growing epidemic, and we have [a] societal responsibility to support people with dementia because society is failing them.
“It’s almost scandalous that we’ve known about this condition for over 100 years, and there is a whole group of people plagued by it, and yet we have no answers to that. I find that astonishing.
“There is so much stigma surrounding dementia, especially rare dementias, so awareness is key. We must keep the conversation going. That is why I am passionate about helping Alzheimer’s Research UK raise much-needed awareness of the diseases that cause dementia.”
To hear more stories of dementia and how research is working to find a cure, visit alzres.uk/DementiaUncovered