South Asians in the UK make up 5% of the total UK population. But there is very little is known about the prevalence, experience and treatment of dementia in this community. Over 850,000 people in the UK live with dementia.
Dementia is not a specific disease. It's an overall term that describes a group of symptoms associated with a decline in memory or other thinking skills severe enough to reduce a person's ability to perform everyday activities. About 60% of people with dementia suffer from Alzheimer's disease and others from vascular dementia, caused by reduced blood flow to the brain. The life expectancy of those living with Alzheimer’s disease can vary between 5 and 12 years. There are many different causes of dementia. People often get confused about the difference between Alzheimer's disease and dementia.
South Asians are also more susceptabile to diabetes and hypertension, which means they are more prone to develop vascular dementia. But there has also been taboo surrounding dementia within the Asian community that stops people seeking diagnosis and help. Unfortunately, there is also no word for dementia in most Indian languages - instead a person suffering from dementia is often labelled as 'mad'.
According to the Race Equality Foundation Briefing Paper by David Truswell, he addressed the issue of dementia in ethnic community. The report concluded that dementia is “misunderstood and highly stigmatised in many minority ethnic communities.”
There are organisations that have developed good practice in working with minority ethnic communities, but there needs to be a more developed structure to share the learning from good practice, it said. The report added, “There should be a vision of a culturally appropriate approach to the dementia pathway that starts from raising awareness, leads to facilitating early diagnosis and lasts into appropriate end-of-life care.” The research on dementia in South Asian communities further illustrated the importance of understanding how expectations and obligations regarding care are likely be negotiated within South Asian communities and the challenge of developing effective awareness raising.
According the 2011 census, there is estimated to be over 12,400 people in England and Wales of a South Asian ethnic background over the age of 65 living with dementia, over 5,200 of these living in London.
When BBC presenter Rajan Datar had reportedly learned that his father Sudhakar had dementia, he discovered a combination of stigma, language barriers and cultural differences were stopping many in the UK's South Asian community from seeking help.
Similarly, Krupa Sen who lives with her husband and three children in London, was at loss when her mum Maitrayee was diagnosed with dementia. Her mum lived with her brother in Edinburgh. While her mum was visiting India for a few months, Krupa's brother passed away in an accident. When the news reached her mum, she was shocked, but apparently coped. In a few months time she started showing some traits of psychosis with severe hallucination. But the family did not want to accept it could be on set of dementia. A brain scan proved that it was indeed on set of dementia. After spending some time with Krupa, when the doctor insisted, she was reluctantly moved to a nursing home. The family, while confident about their mother's diagnosis and care now, still suffers from guilt for sending her away. “There are moments we suffer from immense guilt for not keeping our mum with us. We did not want to send her away. We tried to see if she could stay with us, but there were times she did not even know she was at home. We keep visiting mum every week in nursing home, and there are days she does not recognise us. It's heartbreaking.”
Importance of Specialist Dementia Nurses
Caring for dementia patients by untrained family members is difficult. Especially as the patient may show lack of empathy, lose the ability to remember events or fully understand their environment or situations, it can seem as if they're not telling the truth, or are wilfully ignoring problems. In the Asian community, there are also taboos associated with discussing symptoms or sending elderly parents away to nursing homes that care for similar patients.
Dr Julia Botsford, Consultant Admiral Nurse at Dementia UK, said, “People from BAME communities are continuing to under access dementia diagnostic services and are more likely to be in crisis when they do. This means that they and their families are missing out on early practical and emotional support to help them with challenges in the present, as well as making plans for the future.
“National and local dementia awareness raising campaigns targeting BAME communities are needed but are not the only answer. Services must ensure that the advice and support they provide can meet specific cultural needs where present, and are accessible to all sectors of the community. Specialist dementia nurses, Admiral Nurses, can play a fundamental part in this approach as they offer tailored support and advice to each family they work with.
“For anyone who has any questions or concerns around dementia, please contact the Admiral Nurse Dementia Helpline on 0800 888 6678 or by emailing [email protected]”
Put your papers in place
If you have recently been diagnosed with dementia, NHS recommends it will be helpful to talk to a counsellor at the memory clinic if they offer this kind of support. Find out what's available locally too so you're prepared and able to call on this support as and when you need it.
Also put your important papers in order and make your will. This ensures that when you die, your money and possessions go to the people you choose. A person with dementia can still make or change a will, provided you can show that you understand what you're doing and what the effects will be.