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Together we fight Stigma: London’s Chinese community and the CNHLC’s dementia Project

Together we fight Stigma: London’s Chinese community and the CNHLC’s dementia Project by Eddie Chan

Dementia is increasingly a major concern in health care provision. Today as we live longer more and more people are found to be living with dementia, which affects the quality of life of those living with it, as well as those having to care for them. In most western countries, the term dementia has been known for decades; information about the disease appears on mainstream news frequently. In the UK alone, from small grassroots organizations to the Central Government, efforts are being made to combat dementia. Research on the disease is being undertaken by relevant institutions. The general picture seems encouraging: that most people are informed of dementia and engaged in the battle against the disease.

However, for those working on the frontline of health promotion for BME groups, the battle against dementia has just begun. There is still a long way for members of the Chinese community, in particular, to catch up on information about dementia and relevant issues. In an attempt to narrow the gap, with a 3-year grant from the City Bridge Trust, the Chinese National Healthy Living Centre (CNHLC) set up a Dementia Awareness and Support Project in 2014. This is so far the only project in London aiming to raise dementia awareness in the Chinese community and to provide individuals and families affected by the disease with some basic support. More details about the Chinese community and the work of this dementia project are discussed as below.

First, let’s get a rough picture of the Chinese community in the UK. The total population of ethnic Chinese in the country is in the range of 400,000 – 450,000 (wikipedia.org), excluding the widely estimated 200,000 undocumented arrivals. (In addition Chinese Embassy figures show that in 2017 there were over 120,000 students from China attending UK universities). At any rate the actual total of Chinese persons in the UK is well over 600,000, the bulk of whom in London and the South East. Of those arriving in the 1950s and 60s, most of these earlier incomers worked in laundry, catering and other labour intensive sectors; for this reason few have had time to learn English, so that they are English illiterate, or in some cases with just a very basic level of the language.

However, the Chinese population in the UK is a rather diverse community itself. It consists of individuals from different national and regional origins, with Hong Kong standing out as the major source of Chinese migration. Other countries from where Chinese have departed for the UK include Malaysia, Singapore, Tai Wan, Macao, Vietnam and most significantly in the past 10 to 15 years, Mainland China.

The differences in geographical backgrounds are reflected in the first languages/dialects the migrants use. Whilst most people are inclined to think that Chinese people speak either Mandarin or Cantonese, the “real thing” on the ground is a little more complex. Although Mandarin is the national tongue, many Chinese themselves cannot speak it (A 2005 survey conducted in Mainland China finds 48% of its citizens cannot speak Mandarin). For those in the UK, whilst most arrivals from outside Mainland China speak Cantonese, a small proportion of older people still use Hakka and some other dialects as their first or only language, such as Chaozhou, Hockian, Wei-Tou, Taishan and Shanghainese. Communication can be difficult even between individuals if they do not use the same dialect. In the meantime, it is useful to point out also, that many people from the older generation cannot read and write Chinese. This is particularly obvious with female elders whom, for social and cultural reasons, were given very little chance to receive formal education in olden day China.

So, lack of formal education is not just a case for women; it’s a problem for many of their male counterparts, too. Illiteracy is therefore a social problem in general. As noted, dementia is a comparatively new concept to Chinese people; and what’s more, the disease has been translated in to the Chinese language as something that projects a rather negative image. Not only are there different versions in different Chinese speaking countries/regions, but all the terms, to different degrees, are derogatory and stigmatizing; when translated back in to English, they literally mean something like “the crazy stupid old person disease” (痴呆症or 老年痴呆症). Clearly, using such terms to describe the illness do more harm than good as far as health promotion is concerned. They are incorrect and even add further psychological pressures to the person living with it, putting off s/he from seeking advice and help. So the very first task of our Dementia Awareness & Support Project was to put this right, by retranslating the term with a more close-to-source meaning, non-derogatory and easy to understand Chinese term. After some consultation and research, we came up with 退智症 (or Tui-Zhi-Zheng in the Chinese Pinyin system). This new term literally denotes a slow and gradual decrease of mental capacity. It does not suggest any link between the disease and age (which is not in the original English term anyway). Using this new term, the Project has subsequently produced in Chinese a dementia booklet published by Alzheimer’s Research UK, and distributing thousands of copies in London and some other UK cities.

In a bid to promote the new term, which aims to reduce, and eventually eliminate, the stigma attached to dementia, we have also publicized information widely through channels that would reach the Chinese community more directly. Relevant bulletins were printed in local Chinese newspapers, announcements were made in a local Chinese radio station and interview clips were shown on a London based Chinese TV station (which unfortunately terminated broadcasting in 2015).

As noted, most Chinese of the older generation cannot read and write English. Because of this handicap, few of them can access information they need, in particular if such information is available only in English. Lack of basic IT skills marginalizes this group of people even further, as up-to-date information on research & development appears mostly in electronic forms. Obviously for the Chinese community, face to face contact is the best and more effective method for conveying information. There is therefore a need for a down-to-earth approach when it comes to Chinese older people. Since the population is scattered in different boroughs, it has been necessary for our project to work in partnership with local community centres. There are a number of active organizations in the capital, including Chinatown Chinese Community Centre, Islington Chinese Association, Chinese Community Centre in Tower Hamlets, Haringey Chinese Community Centre, Woolwich Chinese Women’s Group, Lambeth Chinese Community Centre and others. Through these grassroots organizations, we were able to reach some of the hard-to-reached persons whom otherwise we would not have been able to find.

Workshops dispatching knowledge and information about dementia for the general public and Reminiscence Tea-houses for carers and the cared for (Chinese version of Memory Cafe) have been held in 8 boroughs, with specialist speakers provided by the Alzheimer’s Society and other healthcare services and homecare agencies. A number of training sessions have also been held over the years, e.g., on Dementia Friends, befriending, application of small gadgets, Lasting Power of Attorney and so on.

As a major push to promote partnership working and to exchange experience in the campaign to tackle dementia, a national dementia conference was held in Chinatown in 2016, attended by representatives from a number of NHS services, charitable organizations as well as some 160 Chinese Londoners (including carers and the cared for), with a further 90 attendees taking part in Newcastle via live TV conferencing. Also, over the past few years, steering group members of the Project (some of whom NHS experts on dementia themselves) have taken part in meetings and conferences held in various places in the UK and elsewhere. And an article, introducing the work and experience of the Project, has also been posted on the UK Journal of Dementia Care, jointly by the steering group, staff and volunteers. It has to be said that, in delivering the Project’s activities, the contribution of steering members and the team of dialect-speaking volunteers, has been outstanding and significant.

As noted earlier, for the Chinese community the battle against dementia has just begun and it is necessary to continue. In 2017 the City Bridge Trust extended their support with a reduce-levelled grant to continue the activities for another two years until December 2018. Further work is now being carried out in some of the areas that had not been fully attended previously. More importantly, in a more ambitious attempt, the Chinese National Healthy Centre is now intending to further promote the new Chinese dementia term to a wider world, i.e., for the term to be adopted by other Chinese speaking counties and IT giants such as Google and others. If this push is eventually successful, it would be probably one of the biggest achievements of our Centre since its founding 30 years ago.

Date 26 March 2018