National Dementia Action Alliance Webinar Series Dementia and BAME Communities Shahid Mohammed Dementia Dekh Bhaal Project Manager tide, Life Story Network
Zoom Instructions Please engage with today’s content by using the Chat Box. Use the icon to find the Chat box Questions Feel free to write your questions in the Chat box throughout Shahid’s presentation. We will collate all questions for Q&A at the end. National Dementia Action Alliance
Dementia Dekh Bhaal - Webinar Shahid Mohammed
Who are these ‘BAME’ Communities?
• Not a homogenous group! • Migratory experience – 1 st generation south Asians • Culture - Language, Diet, Dress, Religion, Family Dynamics evolving! • Stigma – no word for Dementia, SO you’re PAAGAL! • Language & Awareness – let’s normalise ‘Dementia’ • Role of Faith – expectations to ‘ dekh bhaal ’ elderly
• Means to ‘Care for Someone with Dementia’ What is Dementia Dekh • Set up by Tide (social movement led by carers for carers) Bhaal ? • Project Manager funded for one year – part-time (supported by Dementia PhD Student) • CCG Strategic Review of Dementia offer - address needs of BAME community - model of education, advice and support DBB Aims: 1. Campaign to Increase Community Awareness 2. Use Power of Stories to Change Perceptions 3. Develop & Deliver Training for Professionals ‘
Importance of • Cultural & social stigma influences carers ability to access support this work • They DO NOT (or cannot) look after their own – some do, why? • One size does not fit all – communities within heterogeneous communities • BAME communities are missing at the point of services • Families reluctant to use services not meeting cultural/religious needs. • Carry on alone until CRISIS – seek advice from faith leaders/healers. • Already managing complex care needs • 7/8 fold increase expected in BAME communities in the next 30 years
Dementia Dekh • Culturally appropriate outreach and engagement i.e. the where, when and how Bhaal • Project Manager, former carer – known/trusted in Rochdale community made access easier • Advantage of established base - mindful of new person, lead-in time, unfamiliar geographical/diverse areas • Buy-in from local Mayor, Councillors and community champions • Giving carers a voice to work across communities and decision-making processes (e.g. carer videos)
‘ TRUST’ Model Dementia Dekh Bhaal • T (Time) – put in the time & effort to get to know the community Rochdale • R (Relationship) – build your relations with communities and individuals. LISTEN & LEARN • U (Understanding) - understand participants & community dynamics • S (Sustainability) – not just of funding, importance of continuation of relationships after project ends • T (Trust) – why should the community trust you, parachute in then just leave?!?
• Little awareness of dementia – mental health condition! Barriers to • Stigma (what will people/community say…!!) Accessing Help • Considering symptoms as normal ageing • Spiritual or a punishment / test from God • Commissioners and other decision-makers need to hear carer voices – disconnected • Experts by Experience - living as day-to-day carers • Services/Commissioners – don’t understand or respect cultural and community nuances (all BAME!) • Under-served/Under-represented/Seldom Heard – what?
Delivery 1. Campaign to Increase Community Awareness • Asset based community development approach • First understand your ‘BAME’ Communities - dynamics • Community Roadshows – GO where the communities are! • Literature – translated material alone not enough & language! (don’t just tick that box) • Community Radios • TV – satellite community channels • Community networking - it’s not just always about dementia
Some comments from roadshow participants (translated from Punjabi/Urdu/Bangla): “It was good that Shahid came to talk to us as a group as we learnt together, otherwise we would have said it is of no concern – but secretly frightened of what might happen…” “If it wasn’t for Shahid, who we all know, coming to our centre speaking in Punjabi and Urdu, I would not have been comfortable in telling the group about how I struggle with looking after my mother. People say she is going pagal (crazy), now I know it could be dementia. I will take mum to the doctor on Monday…” “We were surprised to learn that Asian people are at more risk of getting Vascular dementia because of lifestyle and disease like diabetes and heart problems…” “We never saw our parents in Pakistan or Bangladesh with dementia as we lived here and they lived there…”
2. Use Power of Stories to Change Perceptions Delivery • Relationship building – spending time in community & with carers • Word of Mouth – worked with community champions/activists • Three powerful personal stories – empowered carers based on own experience and testimony • High quality professional film production – integrity, joint editing process, carers empowered & in control – throughout! • IMPACT – films shown in community!
Dewan Tahir Links to carer films at end Ansa
3. Develop & Deliver Training for Professionals Delivery • Dementia Dekh Bhaal training aimed at frontline professionals • Gain better understanding of challenges of dementia in communities • Social constructs of dementia & care – stigma/faith/cultural etc. • HMR CCG/Rochdale Council – promoted training internally • Testing out phase – what works?
‘ DEM EMEN ENTIA TIA DEK EKH BH BHAAL AL ’ Cultural Awareness Training (dementia context) – Rochdale ’ s South Asian Community Aim im To introduce front-line professionals to the nuances of working with members of the south Asian community living with dementia and their carer(s). With an in depth look at popular misconceptions and the barriers faced in fully engaging with professional services . By the e end d of this traini ning ng session, n, parti tici cipant pants s will: Have a better understanding of the history and impact of south Asian community ’ s migration to the U.K. * Gain an awareness of the social constructs of dementia care and the barriers/facilitators associated with them * Appreciate the influence of Family and Cultural dynamics in accessing appropriate health and social care support. * Develop strategies to engage and support members of the South Asian community in meaningful, tailored health and social care * interventions. This traini ning ng session on is aime med d at: Front-line healthcare professionals Information provided to the Council/CCG for Integrated neighbourhood team members their internal staff training bulletin
• DBB rose to the ‘strategic’ challenge – incorporated tried & tested Summary approach to empower carers (rather than preaching) • Steering group - field experience, academia, commissioning & lived experience • Asset-based community development approach to meet objectives • ‘Lived Experience’ model for delivery & value placed on our carers • Participants valued Project Manager as an ‘expert by experience’ • Co-production of professional training with carers • Frontline staff have better understanding of issues • Challenge – strengthen ‘raised expectations’ in a sustainable way Through DBB: - Carers shared their experiences via film - Took part in roadshows - Signed up for tide membership
Recommendations • DBB - embed in other community engagement projects • Wider promotion of DBB as successful model of engaging with BAME communities to challenge fallacy of ‘they look after their own’ • Opportunity for other organisations to adopt DBB practices and learning across the country • Dementia Dekh Bhaal demonstrated importance of credible, local experts by experience who can reach out to South Asian communities to gain their trust, tackle stigma • Commissioners to learn from DBB - exploring how it can continue to engage directly with these BAME communities to improve awareness and understanding about dementia and enable carers to seek help. • Incorporate work into mainstream approaches to meet the needs of diverse communities.
THANK YOU Shahid Mohammed Email: shahid@lifestorynetwork.org.uk Mobile: 07841 421 157
Questions National Dementia Action Alliance
Links to the Dementia Dekh Bhaal carer films: Dewan : http://www.tide.uk.net/join_tide/experiences-stories/dewans-story/ Ansa : http://www.tide.uk.net/join_tide/experiences-stories/ansas-story/ Tahir : http://www.tide.uk.net/join_tide/experiences-stories/tahirs-story/ Link to Shahid’s ‘A Fragmented Pathway…’ paper: http://www.tide.uk.net/a-fragmented-pathway-by-shahid-mohammed/ Link to Shahid’s recent blog: http://www.tide.uk.net/dementia-dekh-baal-reflection/ National Dementia Action Alliance
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