For Travellers, getting a dementia diagnosis comes with extra hurdles

My family are Romany Travellers – our ancestors have been in Britain since around 1515, following migration from Northwest India.  

For people belonging to the Gypsy, Roma and Travelling community, periodically moving from place to place in search of a new place to settle is a way of life. 

Which is why it can be incredibly hard when a member of the family is diagnosed with a chronic or life-limiting condition. 

My beloved granny – the figurehead in my family – was diagnosed with Alzheimer’s disease over a decade ago.

I was incredibly close with my granny. She was a real firecracker of a woman; fiercely protective and loyal to our family. 

When we were young, she’d often take me and my siblings on holiday, and if we were lucky, we’d even get to join her at bingo. These are some of my fondest memories of growing up.

We weren’t shocked when we received the diagnosis; she had become very insular – a shell of her former self, and we knew that something wasn’t right. 

Not long after my son was born, my granny held him in her arms, but didn’t know he was my son, or even who I was – it was so heart-breaking. 

As she got worse, I watched my grandad struggle with her care, as there was no specialist dementia support available.

My granny passed away seven years after being diagnosed with Alzheimer’s disease. I was 28. From this point, I knew I wanted to advocate for all families with dementia to improve access to care.

It is estimated that there are 25,000 people currently living with dementia from Black, Asian and minority ethnic groups, which includes the Travelling community, in England and Wales. This is expected to exceed 172,000 people by 2051 – a seven-fold increase in comparison to a two-fold increase among the wider population.    

People in Gypsy, Roma and Travelling communities have poorer health outcomes than any other minority. 

The 2011 Census of England and Wales found that only 40% of Gypsies and Travellers had formal qualifications, with many in the community leaving school at a young age to support family and business. The resulting low literacy levels means families do not receive vital information, including awareness of signs and symptoms and diagnostic and post-diagnostic services.  

Moreover, families are constantly on the move in this community, so they don’t typically see the same GP and can struggle to register with a local doctor’s surgery due to not having a registered address.  

All of this impacts the experiences of families living with dementia. 

Limited access to a registered GP service leads to increased use of emergency services – such as A&E – as opposed to a structured healthcare approach, which leads to lower quality of care. 

The lack of knowledge around dementia also means that families do not typically seek help until a crisis point, making it extremely difficult to manage the progression of the condition or put appropriate care plans in place.

Since 2019, I’ve been working as a dementia specialist Admiral Nurse at Shropshire Community Health NHS Trust – working with local families impacted by dementia to deliver practical and emotional support to help them live positively beyond diagnosis. 

Following my Granny’s dementia diagnosis, I applied to study mental health nursing so I could become a specialist nurse to honour her memory. When I qualified, I worked in several settings including a care home, a memory clinic, and the local community mental health team until I went on to secure the Admiral Nurse position.

Working as a specialist dementia nurse is a dream come true for me; every day I get the opportunity to improve the experiences of families living with dementia. 

But I’ve also found that there is limited awareness of cultural traditions in Gypsy, Roma and Travelling communities among health and social care professionals, particularly the mentality to look out for our own.

I’ve sought to improve this knowledge gap by educating colleagues about our culture and traditions, and how these impact dementia care. 

For example, helping families in the community arrange care plans around the end of life and death can be difficult, as they consider it offensive to discuss someone’s death before they’ve passed. 

It is cultural tradition to keep the person at home after they’ve passed to allow the community to pay respects; thereafter, the person’s possessions and caravan is burned. 

We now always ensure that we give families the space to come to us when they’re ready.

There is also a deep sense of mistrust of those outside of the Travelling community, often a result of discrimination; discussing my background has enabled me to build relationships with families through shared identity.  

I recently supported a Traveller family whose relative was at a late stage of their dementia diagnosis, receiving end-of-life care. During an initial conversation, they highlighted that they wanted their relative to be cared for at home by family – in-keeping with cultural practices around death. 

I disclosed my story to reassure them that I understood the importance of this tradition. From that moment, I could tell they felt more comfortable in my presence.  

As their Admiral Nurse, I was able to draw on my experience in the community and advocate for them by working alongside the local hospice to ensure they received the best possible care – including pain management and emotional and practical support for the whole family.  

My work as an Admiral Nurse has spurred me to continue to improve the health experiences of families in the Gypsy, Roma and Travelling communities – including devising a programme for colleagues to better understand cultural considerations when supporting families with dementia in my community.   

We must continue to build education and awareness among health and social care professionals, by highlighting the health inequalities facing diverse communities and what we can do to overcome these barriers.  

If we are to meet the individual needs of families with dementia, delivering personalised care is vital; this includes providing culturally appropriate dementia resources, offering different means of access to healthcare professionals – such as over the phone or face to face appointments, and ensuring memory tests take into account literacy levels. 

We can also ensure that we are supporting families to stay in the accommodation of their choice as their diagnosis progresses.

As dementia diagnoses continue to rise, we face a steep challenge in tackling the health inequalities that leave families with dementia in underserved communities isolated without the care and support they so urgently need.  

I strive to deliver the specialist care that my dear granny never had the opportunity to receive. All families deserve the right to access this vital support to live positively beyond a diagnosis of dementia.