1. BME Health Forum Quarterly Meeting CNHLC Dementia Awareness & Support Project Eddie Chan 29 Sept 2015

2. Chinese Population Changes  1991 National Population Census – 160,000  2001 National Population Census – 245,000 with over 80,000 in London  2011 National Population Census – 394,000 with over 125,000 in London  Figures excluding refugees, asylum seekers and irregular migrants (estimated 100,000)  Overseas Chinese students in UK now – 100,000+  Estimated Chinese population is at 600,000+ (including irregular migrants)

3. Chinese Community in the UK: A regionally/linguistically diverse community (Established residents)  Hong Kong & New Territories arrivals: Cantonese, Wei-tou, Hakka, Chiu-Chou  Malaysia & Singapore arrivals: Cantonese, Hockien, Hakka, Chiu-Chou, and for some, also Mandarin, Malay and/or English  Mauritius: Hakka, French and English  Vietnam: Cantonese, Vietnamese and for some, also Mandarin

4. Chinese Community in the UK: A regionally/linguistically diverse community Farmers from Fujian – Language/dialects: Min-nan, Fuzhou, Hakka, Fockien Urban dwellers from Northeast – Language/dialects: Mandarin Urban dwellers from Shanghai region – language/dialects: Shanghainese/Wenchow Sichuan/Chongqing migrants – Sichuan and Chongqing dialects Guangdong migrants – Cantonese/Hakka/Chiuchow/Shantou/Taishan Professionals from big cities and students – Mandarin (some plus their own home dialects)

5. Culture: Inward looking and Self-Sufficient Traditions  The most dispersed BME community Barriers – language & cultural Quiet & passive/Invisible/Silent minority  Homebound people live in isolation/loneliness  Service providers stress that it is difficult to offer suitable services to the Chinese community because they are so unreachable Reluctant to accept help of others outside the immediate family  Older people inclined to using traditional medicine (for certain types of ailments, e.g., eczema, acne, vitiligo, alopecia, psoriasis, freckles… at own cost)  Undocumented migrants often have their medicines sent from China (anything from tablets for headache to stomach pain and tonics etc., because can’t access healthcare services here)

6. Emerging Issues  An ageing population – people live longer  In 2010 – 820,000 with dementia in UK  Costing £23 billion per year  1/3 of elderly people will get dementia before death  For Chinese - Long periods of working living in catering  limited social circle  Poor language skill- access to mainstream service hampered  Generation gap – loss of traditional family support  Cultural issues – misunderstanding/stigma  More than 8000 London Chinese are 65+  (In other words, roughly 2700 of these 8000 will have dementia at some point during their life time)

7. Barriers and Problems caused Poor health due to long working hours coupled with lack of exercise Lack of knowledge about how to access healthcare services (knowledge of rights, entitlement, eligibility, service availability) Reluctant to admit having mental health issues (of themselves/of family members - in some cases for fear of losing employment, relationship, friendship, peer and social respects Different dialects can be a problem when arranging interpreting help Affect family life because of time needed from the family carer Young children unable to speak Chinese can create communication barriers between people of young and old generations

8. CNHLC London Dementia Awareness & Support Project  Aims: Removing stigma & promoting awareness Pan-London: work in partnership with local community centres  Different Chinese terms used in different countries/regions - all of which stigmatize. A more accurate translation Tui-zhi-zheng （退智症） is now adopted and publicized by the project.

9. Promotion: booklets/Chinese language media Defeating Dementia booklet in Chinese - 5000 copies for distribution. Info also on Chinese TV, CNHLC website, newspapers. A paper about the project contributed by project staff, steering group and volunteer advisor has been submitted to a health related journal for publication.

10. Partnership working  Community centres: Islington Chinese Centre, Jubilee Shelter Home, Woolwich Chinese Women’s Group, Lambeth Chinese Centre, East London Chinese Centre, Chinese Welfare Trust.  Project also works with Alzheimer’s Society and Alzheimer’s Research UK, Home Instead Carer Training Agency, One Westminster.  Workshop speakers/Tea House leaders are from Alzheimer’s Society, Home Instead carer training agency, e.g., health professional/retired psychological consultant/occupational therapist.

11. Workshops & Tea House Monthly tea houses held at local centres as well as at CNHLC Interpretation provided (when presenter is a non- Chinese speaker) Topics include brain functions, how to live with dementia, sleep management, stress management, adaptation & gadgets in the home environment, etc..) Training arranged for volunteers for home visits. Home visits have been proposed for some patients, but they were not taken place because family went abroad during New Year period

12. Referrals & support Presentation followed by a voluntary, simple, memory test conducted by (retired) psychological consultant. Those failing the test will be referred to GP for further advice. Home visits will be made for homebound patients. Diagnosed patients are referred to specialists.

13. Case Studies Case studies involving people with dementia  Mr A, 86, widower living with dementia, with the support of our team was referred to GP for Mini Memory Test/Assessment and further on to the Memory services. Home visit was carried out with the district nurses to help with medication. His GP has now referred him to the pharmacist for further treatment/specialist care. Our team continue to help with arranging appointments and providing interpreting support.

14. Case Studies  Mrs B, 89, widow, due to her dementia had a near accident at home involving cooking with gas. We referred her to local dementia support organisations and provided support to her carer. They both attended the 4 week Carers Information and Support Programme (CRISP) run by Alzheimer's Society. She was later helped with finding a nursing home run by Chinese speaking nursing staff.

15. Involve volunteers/recruit dementia friends Training for Carers & Volunteers Project recruited a team of 12 volunteers – half of them active. Volunteers help with arranging workshops, interpreting at workshops and tea house gatherings, distributing booklets, using Mylife Software programme. (Two of the volunteers are trained dementia friends & leader project of a similar project). Four days’ training for care workers from two community centres. A one-day training arranged for volunteers who want to progress to become dementia friends.

16. Feedback  How has the Tea House gathering improved your understanding of dementia?

17. Feedback  What do you like most/least about the session?

18. Feedback  Do you have any suggestion for improving the session?

19. Feedback  What other topic do you want to know next time?

20. Work in coming period (1) Continuing Tea House activities) (2) Arranging home visits to homebound people living dementia (3) exploring the ways to recruit or train further dementia champions, and (if appropriate), assisting research institutions, e.g., Alzheimer’s Research UK in their efforts to understand more about the problems faced by the Chinese community in relation to dementia. (4) Organize a national conference in 2016 on dementia and Chinese.

21. Thank You Eddie Chan eddie.chan@cnhlc.org.uk Tel: 020 7534 6546 www.cnhlc.org.uk