Trudi Scrivener, Ambassador for Physical and Mental Health, Wellbeing and Safety
I feel very honoured to have been asked to take on the role of Ambassador for Health and Wellbeing by Heart of Bucks, especially at a time when health and wellbeing has come into such sharp focus as the whole world struggles to cope with the pandemic.
It’s difficult to know where to start when talking about health and wellbeing as it touches on every aspect of our lives and is a deeply personal subject. I’ve concluded that the best approach is to take bite size chunks and talk about the areas that are close to my heart and where I can share my first-hand experience and knowledge. Hopefully by doing so, I can offer some valuable insight, help and hope to others.
One such area that I’m passionate about is Dementia. As a care ambassador and dementia care champion, I’m close to many people and their families suffering from this debilitating disease. There are more than 850,000 people living with dementia in the UK and the ripple effect it has on family and loved ones cannot be underestimated.
The pandemic has only served to increase the difficulties for individuals with dementia and their families, with isolation and lack of contact causing heightened levels of confusion, loneliness and stress.
The statistics show that the BAME community (Black, Asian and Minority Ethnic) has suffered more from COVID 19 and there are many hypothesis as to why this might be the case.
Sadly, research into dementia also shows that the BAME community are more likely to suffer at the hands of this disease too. If you dig into why, it’s a mix of medical, social and cultural reasons.
Despite the UK being such a diverse society, the sad fact is that BAME people can often face unique difficulties in obtaining the initial dementia diagnosis. This delay can, in turn, create difficulties when accessing the vital care that they need.
Many older BAME individuals struggle with accessing the UK healthcare system. This is a cultural barrier built up over years of discrimination and the current under-representation of the BAME community within the NHS. Add to this the lack of accessible information about the disease within BAME communities and the result is that BAME dementia sufferers are less likely to seek the care they need, until the disease has reached a more advanced stage.
So the question is, what is being done about this?
Organisations and groups in the UK have known about the issues facing the diverse communities living with dementia for some time and there is a growing body of research emphasising the challenges. It’s absolutely critical that we expand our understanding of dementia within BAME communities and most importantly that we learn about how it affects people as individuals so that we can put the right support in place to offer complete dignity in care, whether that be in a residential home or live-in care.
We need to be talking to families of dementia patients to find out their experiences of diagnosis, care, and treatment services. We’ve already learnt a lot and great steps have been made to improve carers’ understanding and approach to BAME dementia however there is still so much more to be done.
Here’s just a few of the things we need to do to tackle this issue.
- Research needs to be as inclusive as possible, with individuals from BAME communities engaged in every aspect of dementia research.
- BAME people living with dementia and their families need to be involved at all stages of care service planning.
- Carers who provide home care to BAME people living with dementia need to be given a voice, so that their experiences can be used to influence polices and improve overall understanding.
- There are many great home carers who provide a brilliant service to BAME families living with dementia and we can learn from them by making sure their expertise is shared more widely
Being diagnosed with dementia is distressing and hard, for the individual and for their family and friends. But it shouldn’t be made worse for people simply because of their colour of their skin.
I’m always very happy to hear from anyone with their own dementia stories and challenges. You can get in touch with me at firstname.lastname@example.org. I firmly believe that it’s only by talking to each other and sharing our experiences that we can make headway to improve the care and support that is needed to help people living with this disease. You can also find out information form the Alzheimer’s Society who have a whole range of information available – https://www.alzheimers.org.uk/