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2 Raising awareness of dementia among BAME groups in London Alli Anthony Connecting Communities Project Alzheimer s Society

3 The aim of this session is: Why did we need the Connecting Communities Project? What are the barriers? How can we share our learning and our evaluation? I thought dementia only affected white people alzheimers.org.uk

4 The why The numbers speak for themselves Communities want to engage Time for positive changes APPG report DFC faith work Public Health England

5 Awareness and stigma There are strong associations with getting old There is no term for dementia in South Asian languages Amongst the Chinese, the traditional term to describe dementia is derogatory I often hear in my community that somebody has done something to her like cast an evil spell. (Caribbean service provider) This disease never existed in our community. Nobody would think this is a health problem. People in my community would say the person has gone mad or lost his mind. (Pakistani carer) alzheimers.org.uk

6 Barriers to accessing services Language and the use of interpreters Cultural views of ageing Lack of awareness of dementia Dementia services not being culturally diverse or not being seen to be so People may not see themselves as carers Stigma and lack of confidentiality Extended family dynamics Short term funding People coming forward at crisis point

7 The how: Connecting Communities 3 year project funded by DH to work with staff and volunteers Raise awareness of dementia among Black, Asian and minority ethnic communities Highlight existing local services Stress the importance of early diagnosis Give preventative messages on healthy eating, lifestyle, keeping physically and mentally active

8 In my community people were saying my dad had gone crazy, and that the disease was payback for something bad he did in his life. I don t blame them for not knowing about dementia, but it s really important that they can learn about it in a way that is sensitive to their culture. Connecting Communities is great at doing this. - Jahanara Khanom, Volunteer

9 Learning from experience The importance of planning, resilience & flexibility Hospitality & trust: the importance of food! Written materials images, format Working with interpreters Champion overload

10 BEFORE IMPROVING

11 CCP Successes 540 dementia awareness sessions across London reaching over 8,300 people from a wide variety of BAME communities Groups reached: Afghan, African, Bangladeshi, Caribbean, Chinese, Greek, Indian, Latin American, Somali, South Asian, Tamil, Turkish and West Indian.

12 Successes continued 2,500+ professionals and more than 4,600 members of the general public have also attended Key element of success has been tailoring sessions to specific needs and preferences of different communities. By working with local communities at grass roots level the CCP has enabled BAME issues to be raised at a national level.

13 Next steps in CCP Written guidance on working with interpreters Guidance on written materials New booklets in 12 languages Sharing good practice Piloting church pack multi faith

14 Work we need to do Alzheimer s Society is looking hard at itself Unconscious bias Equality, diversity and inclusion strategy Leadership teams modelling the way

15 Positive changes DEMENTIA SERVICES IN TOWER HAMLETS IPSAF CHINESE COMMUNITY DEMENTIA FRIENDS NEW MATERIALS DEMENTIA ROADSHOW

16 Next steps in the wider context Embedding an organisational strategy with achievable goals New campaign group to champion dementia and BAME issues Dementia and identity

17 Awareness & Inclusion Chinese proverb: Tell me and I ll forget, Show me and I may remember, Involve me and I ll understand.

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19 Time for Dementia Programme Dr Sophie Mackrell Network Manager

20 What is Time for Dementia? Two part process: Education and Evaluation Novel approach to dementia education for undergraduate health professionals underpinned by a longitudinal clerkship (LC) model LCs have been developed and implemented in the USA, Canada and Australia (Norris et al. 2009; Strasser & Hirsh, 2011) as well as in the UK at Cambridge (Oswald, Alderson & Jones, 2001).

21 Who is involved? Health Education Kent Surrey and Sussex 400 people with dementia and their carers 300 medical students 410 adult nursing including 90 MH nursing students 90 paramedic students Alzheimer s Society Brighton and Sussex Medical School Sussex Partnership NHS Foundation Trust Surrey and Borders Partnership NHS Foundation Trust University of Surrey

22 How might a LC be useful in dementia education? A unique opportunity to really understand how dementia affects the person and their family beyond receipt of a diagnosis Understanding of primary care, wider social care and health system for those using it, as well as the impact of co-morbidities. Impact on future career choices Evaluation suggests that such programmes enhance the acquisition of skills, positive attitudes and knowledge

23 Benefits of user involvement Opportunities for learning more about dementia Developing confidence and new skills Adding value and influencing Feeling satisfaction from making a difference Students learning from experts on dementia the people directly affected by the condition

24 Education Time for Dementia embedded in the 2014/15 and 2015/16 curricula 4 cohorts of students Recruit and support 400 people with a diagnosis of dementia and their primary carer Ensure regular contact (2-3 years) between pairs of students and a person with a diagnosis of dementia and their primary carer

25 Evaluation Undertake a robust mixed-methods evaluation of the programme Students assessed on knowledge and attitudes towards dementia, as well as compassion/empathy People with a diagnosis of dementia and carers assessed on the impact of the programme on the quality of life and the carer burden Develop a Dementia LC model with implementation guidance

26 Where we are now Sussex 150 families recruited Surrey 103 families recruited with 150 more to be recruited by April 2016 Baselines completed for all students consented into research Baselines completed for all families consented into research Follow up measures in February 2016

27 For further information please contact: Dr Sophie Mackrell, Alzheimer s Society: sophie.mackrell@alzheimers.org.uk Dr Stephanie Daley, Evaluation Lead: S.Daley@bsms.ac.uk Victoria Hare HEKSS Dementia Programme Manager: vhare@kss.hee.nhs.uk

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30 Dementia Resource Centre Peterborough alzheimers.org.uk

31 Hub & Spoke Model Dementia Cafe Peer Support Groups DRC Carers Support Programme Pathways cognitive stimulation group Singing for the Brain

32 Co-located Hub CPFT Memory Clinic Alzheimer s Society Adult Social Care 7 day dementia day service

33 The Memory Service

34 Dementia Friendly Environment

35 Hub Services Singing for the Brain Innovative services in the heart of the community Dementia Friendly Service Providers e.g. Hairdresser Therapeutic Gardening Support and Information

36 Spoke Services Dementia Café Advocacy, Information & Support Healthy living Dementia Resource Centre Activity Group

37 Support Professionals & General Public Information Advice

38 Thank you For further information please contact alzheimers.org.uk