The Dementia Experiences of People from Caribbean, Chinese and South Asian Communities in Bristol

The Dementia Experiences of People from Caribbean, Chinese and South Asian Communities in Bristol

The Bristol BME People Dementia Research Group

BS16 3RY - 11th January, 2017

Alzheimer’s Society - Suite A Verona House Filwood Road Fishponds, Bristol

The Baroness Greengross OBE - Co-Chair All-Party Parliamentary Group on Dementia and Ageing and Older People

ملاحظة رئيسية

لفظ دمنشيا في اللغات المختلفة هو نقطة هامة ومجورية في رعاية الدمنشيا لأنه يعكس مفاهيم كثيرة.

لهذا أولى التقرير جزء هام منه لدراسة إستعمال الألفاظ الدالة على الدمنشيا في الثقافات المختلفة.

وجزء آخر مهم هو تقييم حالات الدمنشيا يحتاج شخص من نفس اللغة وموضوع المترجمين يعطي نتائج لا ترضى الأطباء أو المرضى أو رعاتهم.

تقرير عام

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3.5.2 Different concepts of dementia and “normal” ageing.

A number of studies have described how many age-associated changes in behaviour, or cognitive functioning tend to be identifed as part of a natural ageing process within some BME communities, rather than as ‘symptoms’ of dementia. Thus, South Asian participants in one study described the experiences of people living with different symptoms of dementia as an expected part of ageing and suggested that going out more could help8 . Similarly, a study in Wolverhampton with participants from Caribbean and South Asian communities persistently located dementia symptoms within the concept of ‘natural ageing’9.

3.5.3 Lack of knowledge about dementia as a distinct health condition.

One element that adds an additional texture to the blending of concepts of dementia and normal ageing is that in many languages used within BME communities, there is no distinct, one-word translation for ‘dementia’. Thus, those behaviours that are often identifed as dementia symptoms may be represented instead either as a consequence of growing older, or as a facet of madness10. This is especially important, as we describe below, when considering the experiences of people from Chinese and South Asian communities including India and Pakistan. More generally, alongside this difference in ways of conceptualising dementia symptoms, different communities may also identify different treatment or intervention strategies. Thus, older people of Chinese origins may prefer to consult medical practitioners who speak their language, even if this means travelling to Hong Kong. Similarly, they may be more familiar with, and have more trust in remedies from Chinese medicine practitioners rather than in conventional, mainstream health services11.

3.5.4 Stigma.

A wide range of attitudes, barriers and behaviours around dementia may all impact on the ability of people with dementia and their families to seek help12. While the stigma that is often associated with dementia may affect people from all communities, there is some evidence that suggests that it may be a particular problem for people from some BME ommunities. With specifc reference to people of BME origins, stigma is sometimes associated with illnesses that are not purely physical, and may include any forms of mental ill-health as well as dementia. In this sense, stigma may infuence seeking help from outside organisations and it may put a lens over how dementia symptoms are seen or experienced.

For example, one case study13 described how, for an elderly woman who had grown up in South Asia, her dementia had caused a number of behavioural changes, including her using her garden as toilet, as she had done when growing up in a rural village in South Asia. However, to her daughter-in-law, it seemed that some members of her community were more concerned that her dementia meant that she was now unable to remember her regular practice of prayers.

Stigma can also be used as a term to describe a reluctance within some BME communities towards engaging with people who have dementia. In this way, barriers to inclusion can arise for people with dementia within groups run by and for people of BME origins. For example, in another case study, a Vietnamese husband who was caring for his wife described an unwelcoming attitude towards them at their usual Church attended predominantly by Vietnamese people: this included being asked to sit behind a pillar when they attended13.

The changes in familial roles that accompany caring for someone with dementia may also be experienced differently by people from BME communities: for example, the adult children of elderly parents who do not speak or understand English well, may be asked to interpret personal medical details for their parents to medical practitioners. In these circumstances, notions of unconditional respect for one’s elders may create difcult dilemmas14.

Conversely, the failure to continue with expected familial roles and duties due to exhaustion of a main carer, or increasing medical and care needs of someone with dementia, may also carry a stigma10.

من زنوج الكاريبي - الباب الخامس من التقرير

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5.3 “What is it [dementia]? Losing your marbles?”.

In general, most Caribbean people who took part in the study were aware of the term ‘dementia’ and its symptoms. In part, this seemed to stem from the increasing numbers of people with dementia within extended families and local communities. In addition, the Community Development Worker from the Bristol Dementia Wellbeing Service who covers Central and East Bristol has also been very actively promoting awareness of dementia and local services. However, despite some people’s awareness of the symptoms of dementia, many people still attributed dementia either to natural ageing, or as evidence of mental llhealth.

Thus, one woman at the Evergreens’ focus group said “I think loneliness causes this Alzheimer’s thing.”Men, in particular, seemed to have a less clear understanding of dementia than women did, with some Barber-shop participants even being surprised that dementia affected people from African-Caribbean communities. For some people, this lack of knowledge about the causes of dementia extended to a belief that dementia did not affect black people. As a volunteer at Golden Agers explained:

“Most people don’t know about dementia … We didn’t call it ‘dementia’. Most people called it ‘senile’, ‘senility’ … They put it at the back. They don’t want to talk about it. You have to keep explaining to them, this is not madness. Once you can explain that to them, they can take it on board.”

None of the people from Caribbean communities who were interviewed knew that diabetes, high blood pressure and stroke (all of which are more common in Caribbean and South Asian communities) are potential risk factors for dementia.

Over half of the Caribbean people involved in the study wanted more information

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صينيون ينكرون وجود لفظ مكافئ لدمنشيا In the Chinese and some South Asian communities, understanding is limited by the lack of an equivalent term for “dementia”.

Thus, older people of Chinese origins may prefer to consult medical practitioners who speak their language, even if this means travelling to Hong Kong.

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6. 進退兩難 (caught in a dilemma) - the experiences of Chinese people who are living in Bristol with dementia

6.1 What does dementia mean within Chinese communities?

The large majority of older Chinese people in Bristol originated from the New Territories of Hong-Kong. onsequently, they are Hakka speakers (which does not have a written equivalent), although most older people in Bristol from the New Territories can also speak Cantonese, and write using Traditional Chinese script. There are two forms of written Chinese, used by different communities: Traditional Chinese and Simplifed Chinese. Due to their distinctive linguistic and cultural heritage, many people within the Chinese communities in Bristol, have very different concepts both of illnesses such as dementia, and of the changes that they witness in people affected by the illness.

6.2 Dementia as madness. Phrases relating to dementia are often negative, and at times derogatory or insulting.

For instance, a commonly used Cantonese word for people with mental health issues including dementia is ‘chi-seen’. It refers to the idea that two nerves in one’s brain have stuck together, making one crazy. Other phrases used to describe people with dementia is the Mandarin word ‘Chī-dāi’ (癡呆): the character “chi” translates into English as “idiotic” or “silly”, while the character “dai” means dull-witted. The equivalent Cantonese word is ‘Chi-ngoi’. The Mandarin word ‘fā-fēng’ (發瘋) and the Cantonese word ‘faat-din’ (發癲) both refer to having wheels in one’s head and may also be used to describe dementia-like symptoms.

6.3 Dementia as normal ageing.

The second way in which dementia is understood is as a form of normal ageing: commonly used terms are ‘lao-ren-chidai’ (Mandarin) and ‘loyan-chi-ngoi’ (Cantonese), which both mean ‘senile’’ and can be translated as “old people’s disease”. Other phrases used by participants in this study were the Cantonese term ‘Nou-TuiFaa-Jing’ (腦退化症) and the Mandarin word ‘Nao-TuiHua-Zheng’ (脑退化症) which seem to be more neutral terms relating to dementia.

One consequence of this attribution of dementia to normal ageing is that Chinese people may be more likely to fail to recognise the early signs of dementia30. In this study, many Chinese people were unclear about how, if at all, dementia differed from normal ageing.

Thus Mr Q (a Chinese man in his 60s), had no previous knowledge of dementia before his mother was diagnosed: “I have heard of dementia but I had never fully understood what it means. So, dementia is just someone who is going a little bit doolally. I didn’t realise what it meant, what the symptoms were, the range of things.”

However, when participants had experience of caring for someone with the illness, so their understanding had, out of necessity, improved. Thus Ms L had become familiar with the word ‘dementia’ because of her father’s earlier diagnosis. While her mother’s behaviour was very different from that of her father, Ms L still recognised them both as potentially being caused by dementia and was trying to get a diagnosis for her mother. Ms K had not previously come into contact with anyone who had dementia, but had learnt about it by attending an awareness session organised by Bristol and Avon Chinese Women’s Group (BACWG). As a result, she has identifed potential symptoms of dementia in her mother, and has consequently been trying to have her mother assessed.

6.4 Dementia as a punishment.

There is a strong tendency within Confucian beliefs, and thus within Chinese cultures, for any form of mental illness including dementia, to be viewed as the result of some failing, such as a lack of harmony, within the individual and their family31. Dementia is sometimes thought of as representing a curse on the family as some kind of retribution or punishment, while the younger generation worry that it might be genetic.

The All-Party Parliamentary report “Dementia does not discriminate” suggests that many Chinese people believe that if you do bad things then something bad will happen to you, or to your children, or even to your grandchildren6 .

Serious health problems including dementia are often assumed to be retribution for past bad deeds. Thus in this study, Mrs M (see ‘Case study’) thought her husband’s dementia may have been caused by disagreements with his extended family.

Other potential causes of dementia identifed by participants during this study included stress and the demands of previous life-style, such as long, unsociable working hours. For many Chinese people, there are concerns that as it is distressing to talk about dementia it is better not to do so - as BACWG staff described “it is like death, they avoid it if they could”. Thus, the interpreter for one woman at the Bible Studies focus group explained her reaction to the word “dementia” in this way:

Woman #3 (via interpreter): As soon as she saw the name, she felt afraid. She worried that she will get it in the future.

دمنشيا في جنوب أسيا الهند وباكستان - الباب السابع من التقرير

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7.2 What does “dementia” mean within South Asian communities?

The English word ‘dementia’ is not widely known and is consequently used infrequently in some South Asian groups. It also does not translate easily into some languages. Keeping this in mind and gaining some knowledge about terms that might be used to describe dementia and dementia-like symptoms was an important facet to encourage involvement of South Asian people in this research study.

Pagal is a word used in a range of Indian subcontinent languages, including Urdu and Hindi. It is wholly a negative word which might be used to describe someone with dementia. It is frequently used to refer to people with mental ill-health issues such as post-natal depression or schizophrenia.

SB observed a visceral, negative reaction from one older South Asian woman against this word when attending a Focus Group on loneliness and isolation run by Bristol Multi Faith Forum in March 2016, when another participant suggested that a mutual acquaintance had become “pagal” as a result of not getting out of the house enough.

“Sathrya bathrya” was a Punjabi term used by some older men of Indian origins and Sikh faith at the St George Gurdwara. The suggestion is that it is not as negative as pagal but is a word they use towards each other when they notice increasing instances of forgetfulness, confusion or disorientation. “Bolnia” is a Punjabi word for forgetful, while Pisu is a Singhalese word with a derogatory nuance to describe symptoms of memory loss and/or confusion in an older person.

7.3 What do people from South Asian communities tell us about their experiences of dementia?

Rizwan Ahmed, the Coordinator of Bristol Muslim Cultural Society, described the way that the lack of an appropriate word for dementia might have an impact on how the symptoms associated with dementia might be construed:

participants disclosed that they were not familiar with the word dementia, its likely symptoms or how to fnd help. For instance, Mr G, a Sikh Indian man in his 80s listened to a description of dementia and recognised some of these symptoms in himself. However, he remarked: “people have never heard that, that word, most of us.” Mr L (who was in his 20s and the full-time, live-in carer for both his grandparents) said that prior to his grandmother’s diagnosis, he had no knowledge of dementia.

By contrast, Mr H, whose grandfather and aunt both had dementia and whose mother was diagnosed with this two years ago commented: The Bristol BME People Dementia Research Group

RA: There isn’t the word [for dementia] in Gujarati, Urdu or Hindu … Pagal … you will get conversations like that, to do with mental health. Like black magic at play. Or this person is possessed. That’s the two things I’ve come across.

During a number of focus groups and interviews, “Basically, if you are asking the question: is it well-known? Only the people that I know, most of them know … My cousins know. These are the people I most meet. So for them to know and for me to know, and we talk about it: it seems everyone knows.”

Members of the Asian Elderly Day Centre (who are predominantly Indian Hindus and Sikhs) seemed to be more familiar with the word dementia. In the focus group for women held there, some participants spoke openly of their experiences of having had their doctor carry out Memory Tests, and how they would be prepared to return for a future appointment if they noticed other changes.

More generally, mental ill-health is only recently beginning to be talked about more openly in South Asian communities. For instance, Awaz Utaoh have a history of encouraging openness about mental ill-health amongst Asian women which requires ongoing commitment. The Assertive Community Engagement service (ACE) that Avon and Wiltshire Mental Health Partnership NHS Trust (AWP) are running at Easton Community Centre is aimed at South Asian women and is well-attended36. For Rizwan Ahmed (the Coordinator of Bristol Muslim Cultural Society), awareness about dementia now needs to be raised as well, partly because of concerns that some people might resort to traditional faith healers: Rizwan Ahmed: I don’t think it is talked about. People are just getting their head around mental health. I don’t think it has even occurred to people to think this is an issue that we have got to deal with. They are still coming to terms with the taboo around mental health.

Dementia will be the next thing to tackle … From my experience, people think it is just mental health or forgetfulness or they put it down to old age. They don’t realise it’s dementia.