Woven into who I am: A journey through dementia, faith and identity

Sania Rehman, who works for the Alzheimer’s Society with the South Asian community in Manchester, describes her personal journey involving dementia, family and faith.

Rehman, S. (2026) ‘Woven into who I am: a journey through dementia, faith and identity’, Journal of Dementia Care, 34(3) 20-21.

When people ask me to describe myself, I often pause before answering.

I am a woman, I am a Muslim, I am a daughter, a granddaughter and a mother. I am also shaped by faith, family and responsibility. But quietly, woven through my identity, is something I didn’t always have the words for, and that is dementia.

Dementia did not enter my life through books or professional training. It entered through my home, through my family, and through two men who shaped me deeply, my grandfathers. Long before I worked in dementia services, I was a young girl trying to understand why the people I loved were changing in ways I could not explain.

My paternal grandfather, my Abu, was the light of my life. He was strong, kind and full of warmth. When he was diagnosed with stroke-induced vascular dementia, none of us truly understood what was happening. Over time, the man who had once been a pillar of safety, strength and guidance began to change. His behaviour became unpredictable, sometimes frightening, and deeply painful to witness.

As a child, I didn’t have the language for what I was seeing. I only knew that the man who once made me feel safe was slipping away. I searched for answers everywhere, constantly reading, asking questions, trying to make sense of it all. Without realising it, I stepped into the role of what I now know to be labelled a ‘carer’, while at the same time still trying to grow into myself.

The more I learned, the more I understood that dementia was not cruelty or anger, but an illness. I tried to meet my Abu where he was, to preserve his dignity, and to help him live well for as long as possible. But dementia does not always allow for “longer”. It took him quickly, leaving behind grief, confusion and regret.

I was 24 years old, recently married, a new mother and now carrying a loss that had reshaped my identity.

I thought that chapter had closed. I was wrong.

Shortly afterwards, dementia returned to my life through my maternal grandfather, Nana Abu. This time, it was early-onset Alzheimer’s. While Alzheimer’s is a specific disease of the brain, dementia is the wider set of symptoms it can cause, including changes in memory, thinking and behaviour. Hearing the diagnosis felt familiar, almost rehearsed, and yet entirely different.

What changed everything this time was how we responded. Education and awareness gave us understanding, and understanding allowed us to face dementia with less fear and more intention.

As a family, we came together. Our faith and culture teach us that caring for elders is not a burden, but an honour. We shared responsibility. We showed patience. We allowed love to lead. Nana Abu lived surrounded by peace, faith, laughter and community. His dementia journey, although still painful was filled with dignity.

When he left us, we were present, his entire family, reciting supplications (asking for something from God in a humble way) holding his hands for the last time while guiding him to his onward journey with God. It was exactly how he had lived: rooted in family, faith and connection. That moment taught me something profound. Dementia does not erase identity; it challenges us to protect it.

As the eldest daughter in my family, I grew up quickly. In many ways, I became an adult before I had the chance simply to be a child. I was the natural second parent to my siblings and, over time, a caregiver to my grandfathers. No one explicitly asked this of me, it felt like the natural path I was meant to take. I saw my mother struggling, and without really thinking about it, I stepped in to support her.

At the time, you don’t understand the toll this takes on your mind, body and soul. You keep going because that is what is needed of you. It is only later, when you step away from survival mode, that you begin to recognise the wounds left behind. I carried a great deal of unprocessed trauma: a lost youth, a grieving granddaughter, a woman who learned to be strong far too early before her time.

For a long time, I didn’t realise that healing was something I had to actively choose. Slowly, and often painfully, I learned that I had to become the healer of my own wounds. I still carry some scars, some which run deep but they are healing, slowly. Writing this now, I do so from a place of honesty, knowing that healing is not linear, but it is possible.

Much of that healing came when I became a mother myself. My journey into parenthood changed me in ways I hadn’t expected. My experiences shaped how I parent intentionally and thoughtfully. Creating foundations built on emotional connection, psychological safety, mental awareness and physical affection became deeply important to me. In many ways, parenting allowed me to give what I once needed, and in doing so, to heal parts of myself along the way.

Through these experiences, I began to understand how deeply dementia shapes not just individuals, but families and, particularly in my culture, women. It is typically women who carry the emotional weight, who adapt quietly, who hold everything together, while often feeling the need to “grieve” for the person who is still alive. Enduring that pain teaches you something about love, that love is present not only in joy, but in sacrifice, patience and staying, even when it hurts.

In many South Asian communities, dementia is still rarely spoken about openly. It is sometimes dismissed as “old age” or hidden away in silence. Witnessing this silence made me realise how important it is to speak gently, honestly and without shame.

My faith became an anchor throughout this journey and my identity. Islam teaches us that caring is worship, that patience is strength, and that service carries great reward. Dementia tested me, but it also softened me. It deepened my du’as (prayers) strengthened my compassion and taught me that God places purpose even within hardship.

As I’ve grown older, I’ve reflected a lot on identity. My children often used to ask me, “Who are we? Are we Pakistani? Are we Muslim? Or are we British?”

My answer was simple: ‘You are all of those things.’

I am many other things too. I have learned that we carry many identities throughout our lives, shaped by experience, love, loss and change. Our worlds are constantly shifting, and with them, so are we. Identity is not defined by titles; it is shaped by what we endure and how we respond.

Dementia changed my grandfathers. It changed my family. And it changed me.

It also shaped where I stand today, managing services across Greater Manchester, supporting people living with dementia, and working alongside communities to talk openly about brain health, research, diagnosis, support and care. What once entered my life through pain has become part of my purpose.

To my role models, my grandfathers Ali and Muhammed, you came to the UK with nothing but the drive to support and provide left us with so much. You are not just part of my past. You are part of my identity. You live in how I care, how I lead, and how I show up in the world. I carry your stories with me each day, and through your lives, I continue to learn what love looks like, even in loss.

Dementia may have taken you, but it hasn’t taken our memories or our meaning. You are woven into who I am, and through you I have learned that identity is not something we lose, but something we carry forward, as we continue to grow.