In 2013, the All-Party Parliamentary Group published a study titled “Dementia does not discriminate” exploring the experiences of black, Asian and minority ethnic communities. The study reported that the number of people in our communities with dementia will increase rapidly in the coming decades. As you sit here reading this, 1 person has just been diagnosed with dementia. By the time you finish reading this article, another will start showing the signs and symptoms of the cognitive decline that is dementia. As an ethnic minority community, we are not using the services and resources we are entitled to for such a debilitating disease that has a tremendous impact on a person and family and carers. There are many reasons for this, but the main one is the lack of knowledge that these services are out there and as they say, people are destroyed by their lack of knowledge. There is clearly an urgent need to increase dementia awareness among black communities because dementia can strike you or more likely, an elderly loved one, at any time. So it’s time we had a talk. You might want to grab a drink.
What is dementia?
Dementia is an umbrella term for brain diseases that affect higher brain capabilities (basically what makes us top of the food chain) such as thinking, reasoning, memory, learning, emotional control and social behaviour. The most common types are Alzheimer’s disease and vascular dementia. Though it is more likely to occur over the age of 65, it is important to note that dementia is not a normal part of ageing. Mild forgetfulness is a normal part of ageing but the signs and symptoms that accompany dementia are not. There is a small percentage of people who are diagnosed before the age of 65 (2-5%). Dementia is a progressive disease and eventually results in death. The timing from diagnosis to death averages at 8-10 years.
What are the signs and symptoms of dementia?
The signs and symptoms a person with dementia portrays depends on the part of the brain that is damaged. Those with Alzheimer’s disease commonly have illogical thoughts, problems recognising friends and family/memory loss and impulse behaviour whereas those with frontotemporal dementia get personality changes, repetitive behaviour and often struggle to find the right words when speaking.
As dementia is a progressive disease, the ability to perform normal day-to-day tasks becomes harder. The transition from being independent to struggling on a daily basis is a frightening experience for those who have dementia. Some see it as losing their pride and dignity. It can even be as devastating for families and carers to watch a loved one deteriorate.
So what's the problem?
There currently isn’t enough information to tell us how common dementia is within black communities. The current data shows that members of black communities are often diagnosed at a more advanced stage of the disease or not at all. There is, however, data that shows us that factors making a person MORE likely to develop dementia (such as high blood pressure, diabetes and high cholesterol) are common within our communities. So the Centre for Policy on Ageing and the Runnymede Trust did a bit of calculation. They applied data showing how common dementia is to the number of black individuals in the UK and concluded that dementia diagnoses will have a two-fold increase in black individuals by 2026 in comparison to other ethnic groups. We can hereby, assume that it is likely dementia will be more common among our elderly.
The last few decades has seen risk factors for dementia in black communities skyrocket. The next few decades will see our elders enter age groups where dementia is more common. Simply put, the ageing BAME community needs help.
In the APPG Report, Omar Khan points out that an individual (let’s call her Sarah) turning 65 this year would be born around the Windrush era which means she’s more likely to be born overseas and with a distinctive set of cultural beliefs. So imagine:
Sarah has been displaying the signs and symptoms of dementia for the last 6 months. She is experiencing short-term memory loss and subsequently, re-living longer-term memories of a time of hostility and racism in her past. Sarah has not been clinically diagnosed
Sarah often reverts back to her native language, especially when around her grandchildren
Sarah lives with one of her children, Mark
Mark has no experience of dementia within older generations and assumes that his mum is simply growing older. He is quite worried about the mood swings and “odd behaviour” his mum displays and has assumed that his mum is simply “going mad” or trying to “get attention”
This scenario contains several issues that must be addressed. Society often assumes that black families do not require outside help, “look after their own”, “don’t neglect their parents”. This is a great rhetoric and one I hope to follow but it is important to recognise that it is not always possible. This rhetoric has contributed to an underrepresentation in those who seek help and hence, has resulted in the lack of culturally sensitive services designed to support the wellbeing of carers and individuals with dementia.
We need to break down the cultural myths and taboos surrounding dementia.
They seem to include:
Being possessed by evil spirits
A ‘white person’s disease’
Retribution for bad behaviour
It won't be easy but it begins with education. The low level of awareness of the condition in BAME communities makes it difficult for people to access support. Families may decide not to get help because 1) They want to care for the individual in their own home 2) There is a cultural pressure to do so even when the burden of care is considerably heavy. It is proven that carers of those with dementia experience greater strain and distress than carers of other elderly people. Attempting to care for your loved one whilst under strain actually risks the wellbeing of the individual with dementia.
What can I do?
Recognise the signs and symptoms of dementia. The earlier dementia is diagnosed, the earlier treatment can begin to slow the rate of cognitive decline and improve symptoms. This means that people can actually have a better quality of life. It also means they can plan for their future and that knowledge alone provides stability.
Become a dementia friend here, meet Gina and learn what it's like to live with dementia.
To find more about what can be done to reduce the likelihood of developing dementia, the current prognosis of dementia or current research click here
If a family member or friend has dementia, your local pharmacy will be able to signpost you to a local support group near you.
If you suspect a friend or family member of having dementia, encourage them to see their GP as soon as possible. Your local pharmacy may also be able to signpost you to a memory assessment service near you.
To speak to a member of our team about any concerns, click here
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