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Dementia and black and minority ethnic communities: Resources

Support and Care for People Living with Dementia from Minority Communities’


Diversity and inclusiveness in dementia : listening event report, Salford, Salford Institute for Dementia


Wake Up London! – The case for a London regional investment strategy to develop appropriate information and services for black, Asian and minority ethnic people living with dementia


What do we know about the attitudes, experiences and needs of Black and minority ethnic carers of people with dementia in the United Kingdom? A systematic review of empirical research findings


Black & minority ethnic older people – health and social care


Perceptions of dementia and use of services in minority ethnic communities: a scoping exercise


Gearing up Housing Associations’ responses to tenants with dementia from black and minority ethnic groups


APPG (2013) Dementia does not discriminate: The experiences of Black, Asian and minority ethnic communities www.alzheimers.org.uk/site/scripts/download_info.php?downloadID=1186

  • Asthana, S and Halliday, J (2006) What works in tackling health inequalities? Pathways, policies and practice through the lifecourse, Bristol: Policy Press
  • Bhugra, D, (2004) Migration and mental health, Acta Psychiatrica Scandanavica, 109, 4, pp. 243-258
  • Botsford, J and Harrison Dening, K (2015) Dementia, culture and ethnicity: Issues for all, London: Jessica Kingsley.
  • Bowers, H, Clark, C, Crosby, G, Easterbrook, L, Macadam, A, MacDonald, R, Macfarlane, A, Maclean, M, Patel, M, Runnicles, D, Oshinaike, T and Smith, C (2009) Older people’s vision for long‐term care, Joseph Rowntree Foundation www.cpa.org.uk/ltc/older-people-vision-for-care-full.pdf
  • Clucas, M (2009) ‘The Irish health disadvantage in England: contribution of structure and identity components of Irish ethnicity’, Ethnicity & Health, 14, 6, pp.553- 573
  • Centre for Policy on Ageing (CPA) (2013) The ageing of the ethnic minority populations in England and Wales: Findings from the 2011 census www.cpa.org.uk/information/reviews/theageingoftheethnicminoritypopulationsofenglandandwalesfindingsfromthe2011census.pdf
  • Care Quality Commission and National Mental Health Development Unit (CQC/NMHDU) (2010) Count Me In 2010 – The national mental health and learning disability census www.cqc.org.uk/sites/default/files/documents/count_me_in_2010_final_tagged.pdf
  • Delaney, L Fernihough, A and Smith, J (2013) ‘Exporting poor health: The Irish in England’, Demography, 50, 6, pp.2013-2035 www.rand.org/content/dam/rand/pubs/working_papers/2011/RAND_WR863.pdf
  • De Ponte, P (2005) Deaths from suicide and undetermined injury in London, London Health Observatory
  • Department of Health (DH) (2009) Living well with dementia: A national dementia strategy https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/168221/dh_094052.pdf
  • Department of Health (DH) (2010) Improving care and saving money: Learning the lessons on prevention and early intervention for older people https://lemosandcrane.co.uk/resources/DoH%20-%20Improving%20care% 20and%20saving%20money.pdf
  • Department of Health (DH) (2012) The impact of patient age on clinical decision-making in oncology https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/215155/dh_133095.pdf
  • Downs, M, Turner, S, Bryans, M, Wilcock, J, Keady, J, Levin, E, O, Carroll, R, Howie, K and Iliffe, S, (2006) ‘Effectiveness of educational interventions in improving detection and management of dementia in primary care: cluster randomised controlled study’, British Medical Journal, 332, 7543, pp.692-696 www.bmj.com/content/332/7543/692
  • Federation of Irish Societies (FIS) (2010) Mapping Services for Elders within the Irish Community A factsheet analysing elders’ services, with particular focus on lunch club provision and dementia services www.irishinbritain.org/cmsfiles/Publications/Factsheets/Elders-Services.pdf
  • Federation of Irish Societies (FIS) (2012) Degrees of ethnic inclusion: Measuring BME/BAME inclusion in JSNAs with particular attention to the Irish http://info.wirral.nhs.uk/document_uploads/CurrentVersion/Degrees %20of%20Ethnic%20Inclusion%20in %20JSNA’s.pdf
  • Hickman, M and Walter, B (1997) Discrimination and the Irish community in Britain, London, Commission for Racial Equality
  • Irish in Britain (2013) Degrees of ethnic inclusion revisited: Analysing Irish inclusion in JSNAs www.irishinbritain.org/cmsfiles/Publications/Reports/JSNA-Report-FINAL-pdf.pdf
  • LeedsGATE (2013) Gypsy and Traveller health – who pays? www.leedsgate.co.uk/wp-content/uploads/ 2013/06/Cost-Benefit-Analysis-report-Gypsy-and-Traveller-Health-Pathways.pdf
  • London Health Observatory (LHO) (2006) Hospital admissions for selected primary diagnoses and causes by ethnicity for London April 2003- March 2006 www.lho.org.uk/viewResource.aspx?id=10265
  • Maynard, M, Rosato, M, Teyhan, A and Harding, S (2012) ‘Trends in suicide among migrants in England and Wales 1979-2003’, Ethnicity and Health, 17, 1-2, pp.135-140 www.ncbi.nlm.nih.gov/pmc/articles/PMC3379783
  • Mc Gahern, J (1990) Amongst women, London: Faber and Faber
  • Moore, J, Waters, E, Tilki, M and Clarke, L (2012) Fresh Perspectives: A needs analysis of the Irish community in London, London Irish Centre/Federation of Irish Societies www.irishinbritain.org/cmsfiles/Publications/freshperspectives-final-web.pdf
  • Mukadam, N, Cooper, C, Basit, B and Livingston, G (2011) ‘Why do ethnic elders present later to UK dementia services? A qualitative study’, International Psychogeriatrics, 23, 7, pp. 1070-1077
  • Mukadam, N, Cooper, C and Livingston, G (2013) ‘Improving access to dementia services for people from minority ethnic groups’, Current Opinion in Psychiatry, 26, 4, pp. 409-414 www.ncbi.nlm.nih.gov/pmc/articles/PMC4222802/pdf/coip-26-409.pdf
  • Mulligan, E (2007) Irish people with dementia in Leeds. An internal report for Leeds Irish Health and Homes, Leeds: Leeds Irish Health and Homes
  • Parry, G, Van Cleemput, P, Peters, J, Walters, S, Thomas, K and Copper, C (2007) ‘Health status of Gypsies and Travellers in England’, Journal of Epidemiology and Community Health, 61, 3, pp. 198–204 http://jech.bmj.com/content/61/3/198.full.pdf+html
  • Public Health England (PHE) (2014) From evidence to action: Opportunities to protect and improve the nation’s health https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/366852/PHE_Priorities.pdf
  • Policy Institute for Ageing and Ethnicity (PRIAE) (2005) Black and minority ethnic elders in the UK: Health and social care research findings www.better-health.org.uk/sites/default/files/consultations/responses/3_PRIAE_MEC_UK__Research_Summary_ Findings_Launched_UK_Presidency_Oct_2005.pdf
  • Royal College of Psychiatrists (RCP) (2009) Psychiatric services for black and minority ethnic older people, CR156 www.rcpsych.ac.uk/files/pdfversion/CR156.pdf
  • Royal College of Surgeons (RCS) (2012) Access all ages: assessing the impact of age on access to surgical treatment https://www.rcseng.ac.uk/publications/docs/access-all-ages/@@download/pdffile/access_all_ages.pdf
  • Ryan, L, Leavey, G, Golden, A, Blizard, R and King, M (2006) ‘Depression in Irish migrants living in London. A case control study’, British Journal of Psychiatry, 188, 6, pp. 560–566 http://bjp.rcpsych.org/content/188/6/560.fulltext.pdf
  • Ryan, L, D’Angelo, A, Puniskis, M and Kaye, N (2014) Analysis of 2011 Census data. Irish community statistics, England and selected urban areas: report of England, Irish in Britain, Middlesex University www.irishinbritain.org/cmsfiles/Downloads/Reports/Irish-Census-Analysis-Report- London.pdf
  • Salway, S, Turner, D, Mir, G, Carter, L, Skinner, J, Bushara, B, Gerrrish, Kand Ellison, G ( 2013a) High quality healthcare commissioning: Why race equality must be at its heart, Better Health Briefing 27, Race Equality Foundation www.better-health.org.uk/briefings/high-quality-healthcare-commissioning-why-race-equalitymust-be-its-heart-0 12
  • Salway, S, Turner, D, Mir, G, Carter, L, Skinner, J, Bushara, B, Gerrrish, K and Ellison, G (2013b) High quality healthcare commissioning: Obstacles and opportunities for progress and race equality, Better Health Briefing 28, Race Equality Foundation www.raceequalityfoundation.org.uk/publications/downloads/high-quality-healthcarecommissioning-obstacles-and-opportunities-progress-ra
  • Tilki, M (2003) A study of the health of Irish born people in London: The relevance of social and economic factors, health beliefs and behaviour, Unpublished PhD thesis, London: Middlesex University
  • Tilki M, Ryan L, D’Angelo, A, Sales, R (2009) The Forgotten Irish: report of a research project commissioned by Ireland Fund of Great Britain, Ireland Fund of Great Britain http://eprints.mdx.ac.uk/6350/1/Tilki-Forgotten_Irish.pdf
  • Tilki, M, Mulligan, E, Pratt, E, Halley, E and Taylor, E (2010) ‘Older Irish people with dementia in England’, Advances in Mental Health, 9, 3, pp. 21-232
  • Tilki, M, Thompson, R, Robinson, L, Bruce, J, Chan, E, Lewis, O, Chinegwondoh, F and Nelson, H (2015) ‘The BME third sector: marginalised and exploited’, Voluntary Sector Review, 6, 1, pp.93-101 www.irishinbritain.org/cmsfiles/Downloads/Health/The-BME-Third-Sector-Marginalised-and-Exploited.pdf
  • Tóibín, C (2014) Nora Webster, London. Penguin
  • Truswell, D (2013) Black and minority ethnic communities and dementia – where are we now?, Better Health Briefing Paper 20, Race Equality Foundation www.better-health.org.uk/briefings/black-and-minority-ethnic-communities-anddementia-where-are-we-now
  • Weich, S, Nazroo, J, Sproston, K, Mc Manus, S, Blanchard, M, Erens, B, Karlsen, S, King, M, Lloyd, K, Stansfeld, S and Tyrer, P (2004) ‘Common mental disorders and ethnicity in England: the EMPIRIC study’, Psychological Medicine, 34, 8, pp. 1543-1551 http://wrap.warwick.ac.uk/246/1/WRAP_Weich_download_Common_Mental.pdf
  • World Health Organisation (WHO) (2014) Tobacco and Dementia http://apps.who.int/iris/bitstream/10665/128041/1/WHO_NMH_PND_CIC_TKS_14.1_eng.pdf


Literature Review: Dementia in Gypsy and Traveller Communities             


Tilki, M (2016) ‘Dementia in Gypsies and Travellers: a brief guide for commissioners and providers’ Leeds GATE, Irish in Britain, Irish Memory Loss Alliance. http://travellerstimes.org.uk/UserFiles/Files/Dementia-in-Gypsies-and-Travellers.pdf

Tilki, M. (2016) ‘Dementia among Gypsies and Travellers’ The Journal of Dementia Care, July / August 2016, Volume 24, Number 4. https://d3gxp3iknbs7bs.cloudfront.net/attachments/4bbf837d-068d-43c1-8aac-db1e99da0c76.pdf

Tilki, M. (2016) ‘Reaching out effectively to Gypsies and Travellers’ The Journal of Dementia Care, September / October 2016, Volume 24, Number 5. http://www.irishinbritain.org/cmsfiles/Reaching-Out-to-Gypsy-Travellers.pdf

Tilki, M., (2015) ‘Dementia in Gypsy and Traveller Communities’ Leeds GATE news, 7th September 2015, http://leedsgate.co.uk/dementia-gypsy-and-traveller-communities

Leeds GATE (2016) ‘Memory loss in Gypsies and Travellers’ Visual notes by artist Tom Bailey at the launch of the new best practice guide, “Dementia in Gypsies and Travellers”, by Leeds GATE and Irish In Britain. https://www.youtube.com/watch?v=w0TwxFD5tVk

Prior, P. (2013) ‘Support and care for people living with dementia from minority communities’ February 2013, North East Dementia Alliance. http://www.ncl.ac.uk/media/wwwnclacuk/instituteforageing/files/dementia-in-minority-communities-support.pdf

Marshall, M., Tibbs, M. (2006) ‘Social Work and People with Dementia, Second Edition: Partnerships, Practice and Persistence’ Policy Press, 8 Nov 2006. https://books.google.co.uk/books?id=Sd81DwAAQBAJ&pg=PA59&lpg=PA59&dq=irish+travellers+dementia&source=bl&ots=1T47v20hgt&sig=5tY5xLJYQbmxDwE0_SOhWsb4H90&hl=en&sa=X&ved=0ahUKEwj-hvze0ObXAhWJHsAKHamUAkI4ChDoAQhIMAg#v=onepage&q=irish%20travellers%20dementia&f=false



Centre for Policy on Ageing (2016) ‘Diversity in older age – Gypsies and Travellers’ Centre for Policy on Ageing – Rapid Review, http://www.cpa.org.uk/information/reviews/CPA-Rapid-Review-Diversity-in-Older-Age-Ethnic-Minorities-Gypsies-and-Travellers.pdf

Lane, P., Spencer, S., McCready, M. (2012) ‘Perspectives on ageing in Gypsy families’ Joseph Rowntree Foundation, January 2012. https://www.jrf.org.uk/sites/default/files/jrf/migrated/files/ageing-in-gypsy-families-summary.pdf

Lane, P., Tribe, R., (2010) ‘Towards an understanding of the cultural health needs of older gypsies (sic)’, Working with Older People, Vol. 14 Issue: 2, pp.23-30, https://doi.org/10.5042/wwop.2010.0264



Pavee Point and the Alzheimer’s Society of Ireland, Republic of Ireland https://www.alzheimer.ie/Get-Involved/Dementia-Friendly-Communities/Dementia-Friendly-Projects/Traveller-Education-Training-Pavee-Point.aspx


  • An information poster about the signs and symptoms of dementia was produced for use by primary health care workers for the Traveller Community
  • As a result of the training from The Society perspective we understood more about the resources that are needed to improve awareness about dementia in the Traveller Community but also a deeper understanding of the needs of Travellers and the issues they are faced with


Hodges, N., Cemlyn, S., (2013) The Accommodation Experiences of Older Gypsies and Travellers: Personalisation of Support and Coalition Policy, Social Policy and Society, Volume 12, Issue 2, April 2013, p.p. 205-219, https://doi.org/10.1017/S1474746412000413


In the press

Alzheimer’s Society (2015) ‘A family who changed their travelling lifestyle to help support a father with dementia’ January 2015. https://www.alzheimers.org.uk/info/20159/jan_2015/638/a_family_who_changed_their_travelling_lifestyle_to_help_support_a_father_with_dementia

The Telegraph (2012) ‘Nurse faces sack for ‘cutting gypsy’s hair’’ (sic) 7th February 2012. http://www.telegraph.co.uk/news/health/news/9066341/Nurse-faces-sack-for-cutting-gypsys-hair.html


Race and dementia – Runnymede Trust: https://www.youtube.com/watch?v=FKjtO4WiPvM

Dementia services in Tower Hamlets: https://www.youtube.com/watch?v=xGzyYEps-bw

Getting to know the person with dementia: the importance of memories – SCIE: https://www.youtube.com/watch?v=ze1A3EWMQcY


News Articles

Why black and minority ethnic communities need targeted dementia services – https://www.theguardian.com/social-care-network/2014/sep/18/black-minority-ethnic-communities-dementia-services

Dementia: the untold story of our BME population


Cultural barriers to dementia care

https://www.yorkshirepost.co.uk/news/analysis/cultural-barriers-to-dementia-care-1-8317915 Read more at: https://www.yorkshirepost.co.uk/news/analysis/cultural-barriers-to-dementia-care-1-8317915