As a woman of Asian descent, born in the United Kingdom (UK) to Asian parents from east Africa, I have always been aware of the range and significance of diversity, and have sought to research and understand that diversity… and to some extent, its complexity.
I was 23 years old when I embarked on my first research project investigating the experiences of services for South Asian carers of a family member with dementia residing in Wolverhampton (entitled: Twice a Child III, 2006). Naïve to the world of research, this small scale project was the beginning of not just my academic career but, my personal journey of enlightenment and what it really meant to grieve the loss of an immediate family member.
how i began my journey into dementia
I was 18 years old when my brother died in a tragic car accident. Old enough to understand I was the only child left and that I needed to be strong to support my parents but, too young to contemplate death and the impact it would have on me and, those around me.
We all deal with grief in different ways and sadly, my father turned to alcohol to deal with his pain. As those of us who have experienced loving someone with an addiction to alcohol will know, alcohol does not deal with pain – it only enhances it. Whatever state of mind you are in becomes amplified under its influence and you, the person caring for them, are pulled into the realms of the hell the individual has created for themselves.
You become part of a deluded reality, seeking exemption from a life you did not choose nor, did you create for yourself. You stand tortured as you watch your loved one disintegrate in front of your very eyes – physically sound(ish) but, emotionally lost and gone forever. It was such a difficult concept to contemplate – another bereavement for me but, without a physical death.
my first research project
My first research project in 2006 was the first time I realised that I was not alone in my experience only they were not caring for a family member with alcoholism but rather dementia. The chaos, the unpredictability, the forgetfulness, the warped realities, the change in character, the childlike behaviour, the loss of dignity and identity of that person – were all experiences that connected us. I remember interviewing carers about their experiences and although I admired their ability to profoundly articulate the difficulties of caring for their loved one with dementia, it was the pain in their eyes that I recognised – that pain of losing their loved one even though they were right in front of them.
Some might argue that the difference between dementia and alcoholism is that a person does not choose dementia but, one can choose alcoholism. I disagree. For those of you who may be angry at a loved one for choosing alcohol above your relationship, believe me, it is not a choice they made – a lifestyle choice once upon a time maybe, but the line between that and addiction, is one which I consider to be transparent – nobody sees it until it’s been crossed. Nonetheless, dementia is not the death that leaves the body behind, and neither is alcoholism. That person is still there and every so often you’ll get a glimpse of them – if you’re lucky.
There is an old Punjabi saying
“dukhia da ghar khon ondha?”
which basically translates into “no-one comes during difficult times”
and this, I learned the hard way.
Raised by a family that were all about support and extended family, I spent 7 years somehow individually caring for my broken hearted father. Those that did try to get involved were more interested in what other people will think of the situation as opposed to finding an ideal solution. But it wasn’t their fault as “you don’t know, what you don’t know, and you only know, what you know.” That, coupled with a lack of support from services, really did leave you with feelings of extreme isolation and loneliness – especially because my mother had to work all hours to keep us afloat (she’s amazing!).
This connection that I had developed to carers of people with dementia from a South Asian community led me to want to research this area further, and develop a deeper understanding of my community; why were we not allowed to talk about controversial issues or taboo subjects like mental health, dementia or alcoholism? Why is there a sense of shame and where has it come from? The more I researched my community, the more I realised that there were a pool of people out there, just like me. People suffering behind closed doors, not knowing which way to turn or what to do. My doctoral study (PhD) with Sikh carers of a family member with dementia in Wolverhampton revealed an array of complexities associated with community and cultural norms, and migration experiences that impact on a person’s experience of being a carer for their loved one.
Sadly, in 2008, my father passed away and his death (and my experience of it) became my drive to give voice to a community that are seldom heard. My PhD created a safe space for people to tell me what they were feeling, and what changes need to be made to society and services. Throughout my career pathway I began learning more about dementia and realised that people can cope better with situations if they are able to understand the perspective of the person they are caring for.
Sadly, I learned this the hard way too as I later realised that my father was living with an alcohol related dementia throughout the final year of his life. Although the link between dementia and alcohol is yet to be thoroughly defined and understood, I still feel that had I have known then, what I know now, I would have reacted in a different way and saved myself a lot of heartache.
I have therefore dedicated my life to sharing knowledge and raising awareness so that both the community and service providers feel better equipped to support a person with a complex care condition like dementia. Dementia is so complex and its symptomology is unique to each individual. To care for someone with dementia requires us to think deeply about how our actions influence their experience. This involves having advanced communication skills – the ability to see beyond someone’s words and actions and read between the lines. I therefore believe that if we can get it right for people with dementia, we can get it right for anyone who is in need of care.
CULTURAL INCLUSIVITY SHOULD BE AT
the heart of everything
WE DO BECAUSE WE ALL HAVE A HUMAN NEED AND RIGHT, TO HAVE A
sense of belonging