Actress and Broadcaster, Alzheimer’s Research UK Supporter
Actress, Shobna Gulati, well known for her roles in dinnerladies, Coronation Street, and Doctor Who, describes how she lost her mum to vascular dementia, and how we must work to break down stigma around it.
Mum was the matriarch and lynchpin of the family. She was in control of her life, her home and, to a certain degree, her children too.
At first, the early shifts in her were so marginal that we could always find an explanation. We could put her behavioral changes down to other things like tiredness or stress. It was as though her normal character dialed up a few notches. Soon, though, our arguments seemed different – lasting for days rather than hours. Her driving became erratic and steadfast habits and idiosyncrasies on the practicalities of day-to-day life seemed to silently, and without ceremony, disappear. In their place came stories about her early childhood; some from so far back, we discovered her anew; she’d become caught in the web of her past rather than the present, or indeed her future.
Looking back, she covered the cracks for about three years before her diagnosis. Though we knew some things about dementia, it always was something that happened to other people. We never thought it could happen to us and to our mum. When the diagnosis came, it was there in black and white: vascular dementia.
Our current circumstances changed overnight just as the past became the present for my Mum.
There is so much taboo around dementia, particularly within my community. This weighed strongly on us all right up until the end as she struggled to accept her diagnosis. It was heartbreaking watching her trying and failing to come to terms with her illness. In retrospect, it was probably less painful for her to shy away from the perceived stigma of her diagnosis than to share it.
We need to talk about dementia
Talking about dementia, and the value of research, is vital to helping people, like my mum, who live in denial of what’s happening to them. We need to change their perceptions, and those of their community.
Dementia is caused by diseases, there is no shame in that. Everyone is human and at some stage in our lives we’ll all get ill and have to face our own mortality.
My hope for the future is that if we (my family) are brave enough to speak out about dementia, we might help others. And together, we’ll break down that stigma and support research into this debilitating disease.