South Asians are one of the largest, and fastest-growing, minority groups in Westernised countries. And while many people with this background may have lived in the UK, US, Australia, Canada and other countries for decades, like any ethnic minority group, there can still be many cultural differences.
While we often celebrate these differences – food and music, for example, and the benefits of a more diverse society – some of them can also create barriers. One of these is perceptions of mental illness. Whether they are South Asians, black Caribbeans, African-Americans, many members of different ethnic groups hold different beliefs of mental illnesses than the general population. One illness for which this is true is dementia, which was also the number one cause of death for women in England and Wales in 2013. And of course there are large parts of the general population with undiagnosed dementia.
But diagnosis in South Asian groups appears to be a tricky issue. Going to a doctor for physical symptoms appears to be as high as in the general population, yet this changes when it comes to mental health issues.
People with a Pakistani background in Denmark, for example, have fewer diagnoses of dementia than white counterparts. More so, a recent analysis of 33 studies showed that minority ethnic members with dementia were 40% less likely to enter 24-hour care than the wider population. This is reported on an international level. In England, in a large survey of 23,000 people spanning several years, South Asians were found to be significantly less likely to have approached their GP for mental health problems.
Caring for family
A recent report from the Alzheimer’s Society highlighted low diagnosis rates and poor service access in black and minority ethnic communities.
In a study published in the International Journal of Geriatric Psychiatry, we found that for South Asian groups there were three steps had to be conquered: that symptoms of dementia had to be recognised by the patient, carer or community; health professionals needed to recognise symptoms and diagnose; and services had to then be adapted to deal with this group’s needs.
So what makes people from this community access dementia care – or not?
Dementia care has many different shapes – from informal care provided by family and friends, to formal care such as home support with daily activities of cooking or dressing; day centres; care homes or respite care. All of these offer informal carers some personal time outside their caring bubble for their loved one. But South Asian minorities also under-use these services. And differences in what is considered the responsibility of the family responsibility may have a part to play.
In South Asian groups, family is the cornerstone of the community, with family members mostly looking after each other instead of drafting in formal care. Now, if the family decides to take care of a member with memory and behavioural problems (such as aggression or wandering) instead of consulting their doctor, this person won’t have the opportunity to benefit from existing medication or services.
Besides the stigma of coming forward and consulting a doctor, religion is also a very frequently practised form of alternative treatment. After all, if people believe that something is god-given, how can science and modern medicine help that person with dementia? It may be upon the younger generations, those likely to be more adapted to Western culture and with greater awareness of dementia, to pick up on symptoms and understand that medicine can still provide support.
When it comes to health professionals – doctors, psychiatrists or nurses – who are then tasked with picking this up, one of the main barriers is language and lack of cultural understanding. In some cases this barrier has been tackled by offering Asian language tuition to social service staff. This makes engagement easier and can increase satisfaction among service users.
Waiting times for doctors and for memory clinics where people are assessed for dementia, are incredibly long. Doctors also face high workloads to see hundreds of patients every week. No wonder then that recognising any symptoms becomes difficult if the doctor only examines you for a few minutes. More so, we found that many South Asians feel reluctant to approach their doctor for anything else but physical symptoms, party because of time constraints.
Once a diagnosis is made, which is in fewer cases than in the general population, this should provide the key to accessing appropriate health and social care services. But again, if services aren’t adapted to the needs of the community, with staff understanding their language and their culture, and dietary requirements, then South Asians are more reluctant to seek out these forms of support.
But there are examples of good services out there, we just need to make sure they are replicated. For example, in Wolverhampton, a South Asian carer support group was set up. This allowed family carers to meet other people with similar experiences, and allowed them to alleviate some of the stress that caring for someone with dementia can cause.
With so much international policy and media attention aimed at helping boost dementia service access and improve the well-being of people with dementia and their carers, we must do more on each of these three levels to help South Asians – and indeed other harder-to-reach groups. It must be easier to recognise dementia, diagnose it and deliver required care services. If older South Asians are reluctant to approach services, maybe educating school children about dementia might be an easier way in.