Published on February 20, 2014
5th National Dementia Congress Diversity and Dementia Desiree Leone¹, Lee Fay Low and Ron Sinclair ¹Multicultural Access Project, Multicultural Health, Western Sydney Local Health District with assistance from the members of the National Dementia Cross Cultural Network
Issues to be covered Overview of issues for diverse groups in relation to dementia Barriers to care for CALD communities Rural communities and dementia Pathways to better care Dementia research and CALD communities
Access and equity Alzheimer’s Australia Policy Access to services may be determined and influenced by diverse social and cultural factors. These factors can impact on an individual’s and a communities capacity to enter the service system and their ability to engage that system to provide them with the best quality system to meet their needs.
Some diverse groups As identified in the Alzheimer’s Australia policy -People from CALD backgrounds -Aboriginal and Torres Strait Islander communities -People with disabilities -Sexuality and gender diversity -People with younger onset dementia -Geographic location (regional, rural and remote) -Variations in socio-economic status -People who are incarcerated
Issues for diverse groups Language - sufferers/patients/PLWD/PWD, also terms like CALD Health literacy Interaction between language and culture, as related to interpreters and service provision Unfamiliarity/mistrust with government services Ethnocentrism – how normal/abnormal are viewed, such as pertaining to family structures and BPSD Assessment
Diversity – problems with this term from CALD perspective Many differences between diverse groups, with some arguably more disadvantaged CALD communities too large to be considered a special/diverse population (around 20% of 65+ born outside Australia) Arguments that ethnicity does not impact on development of dementia or the importance of culturally competent services are flawed as research insufficient Are difficulties with CDC/Person centred approaches if the consumer does not understand the system or the services are not culturally competent
Culture Shared beliefs and values of a group: the beliefs, customs, practices, and social behaviours of a particular nation Shared beliefs and practices: a group of people whose shared beliefs and practices identify the particular place, class, or time to which they belong Shared attitudes: a particular set of attitudes that characterise a group of people, which may come from: Upbringing Cultural/religious backgrounds Schooling/education Peer groups
Language barriers -Migrants have limited English for various reasons; English very different from their first language Limited literacy in first language Migrants employed in occupations where no chance to learn/practice…may speak English at work/forget once retired as no interactions with other English speakers Development of dementia -Language a significant barrier in seeking health information, assessment and in care -Issues with interpreters
Dementia issues for CALD communities Limited understanding of dementia in some CALD communities, term not easily translated and some interpretations derogatory Coming from a refugee background/difficult migration experiences can increase dementia-related problems Cognitive loss and mobility difficulties can provoke memories of traumatic events Previous coping mechanisms may abate with cognitive loss Clinicians should check if behaviours related to trauma, not assume
Group discussion Given there are often differences between the language and culture of clients and that of service providers, what might be some challenges service providers face?
Dementia related issues for rural communities 31% of Australians live outside major cities, significant numbers of CALD Rural living impacts on health status because of limited access to health services, education and higher living costs Both carers and PLWD report feeling isolated
Dementia related issues for rural communities Pensions/allowances will not cover the price of medications, transport and equipment, these cost more in rural areas Limited/non existent health and community care means late diagnosis, limited dementia education, no access to some community care and limited support for carers Reliant on technology for health information
CALD people in rural areas Further disadvantaged because -Services they may have used are unavailable (packaged care) -Increased isolation from local community as limited English -Unable to use available services because of language barriers and limited access to interpreters -Ethnic radio may not reach rural areas -Poor CALD data collection meaning no evidence to advocate for increased services
Pathways to better care Interpreters and bilingual/bicultural clinicians/staff in appropriate roles Use culturally appropriate assessment tools (RUDAS) Partnerships with peak organisations Use and development of translated materials that have been checked by communities Ask/listen to people’s stories/histories, don’t make assumptions Awareness that many members, including extended family, may wish to be involved in care
Case Study Yan is an 82 year old man who was admitted through emergency with respiratory problems, he is also deaf. His elderly wife, Beata, who has early dementia and severe arthritis, accompanied him to hospital. Both have poor English. Their daughter, Eva arrived a few hours later, requesting to speak to a nurse. Eva is very anxious, stating her parents are not coping well at home. Eva would like them to go to a hostel, but they are refusing as there are no places in the Polish hostel. The only services they receive are for housework; Eva thinks they are not eating properly except when she cooks for them. Eva also tells you that her father cannot drive and they are very isolated as they live at the bottom of a steep hill. Beata often plays with Yan’s hearing aid; therefore it is frequently lost or does not work. Eva thinks her parents suffer as a result of living through the Second World War in Poland.
CALD research As discussed, older CALD people cannot be considered a special population, due to size Based on the principles of access & equity and generalisability, people from CALD backgrounds should be included in research, including research that is not CALD specific.
Considerations for CALD research Planning/designing a project that’s applicable to all Including CALD people in steering committee Grouping CALD participants appropriately (e.g. country of birth) Ethical issues Costs Translations of research materials Providing feedback to members of the committee
Considerations for CALD research Working with peak organisations, bilingual research staff and resource people Working with communities Recruitment issues Disseminating results to research participants Questions………….
References Aged and Community Services Australia and the National Rural Health Alliance (2005). Older People and Aged Care in Rural, Regional and Remote Australia. National Policy Position. Aged and Community Services Australia and the National Rural Health Alliance Alt Beatty Consulting (2011). Cultural Diversity and Dementia in the Hunter and Central Coast. A Research Project for Northern Settlement Services Ltd, Final Report. Alt Beatty Consulting. Alzheimer’s Australia (2007). Support Needs of People Living With Dementia in Rural and Remote Australia, Alzheimer’s Australia Alzheimer’s Australia (2013). Alzheimer’s Australia Inc Policy. Access and Equity. Alzheimer’s Australia National Office Baxter J, Gray M & Hayes A. (2011). Families in regional, rural and remote Australia. Australian Institute of Family Studies, Australia Government Bazarbassis D. (2006). Far North Queensland Issues. Paper presented at the National Cross Cultural Dementia Network Meeting, Australia Berisic M & Nesvadba N. (2008). Perceptions of dementia in ethnic communities. Project Report. Alzheimer’s Australia Victoria, Melbourne Burns K, Jayasinha R, Tsang R & Brodaty H. (2012). Behaviour Management, A Guide to Good Practice. Managing Behavioural and Psychological Symptoms of Dementia. Dementia Collaborative Research Centre – Assessment and Better Care, University of New South Wales 2012 Communication Pictorial Tool Kit. (2009). St George Migrant Resource Centre Inc Diversicare. Intercultural Effectiveness. Working with culturally and linguistically diverse background (CALDB) consumers with dementia. Department of Health and Ageing (2012). National Ageing and Aged Care Strategy for People from Culturally and Linguistically Diverse Backgrounds, Department of Health and Ageing Feldman S & Radermacher H. (2011a). Understanding ageing well in culturally diverse older males living in greater Shepparton. Final Report. Healthy Ageing Research Unit Feldman S & Radermacher H (2011b). Understanding ageing well in culturally diverse older rural males. CPP/PICAC Forum, Melbourne
References Goodman, R (in) Caring for Aging Holocaust Survivors, A Practice Manual (2003). Baycrest Centre for Geriatric Care, Canada Chan, G. (2011). Assessing and Addressing the Needs of Clients from CALD backgrounds, Multicultural Health Service, Northern Sydney Local Health District Iliffe S & Manthorpe J. The debate of ethnicity and dementia: From category fallacy to person centred care? Aging and Mental Health. 2004; 8(4) 283-292. Kinsella,G, Dwyer L & Tropeano A (2006). Knowledge of early Alzheimer's disease and support seeking behaviour in a sample of Italian-Australian older Adults. Paper presented at the 39th Annual Conference of the Australian Association of Gerontology. Leone Boughtwood D, Adams J, Shanley C. Santalucia Y & Kyriazopoulos H (2011). Experiences and Perceptions of Culturally and Linguistically Diverse Family Carers of People With Dementia, American Journal of Alzheimer’s Disease and other Dementia, 26, 4, 290-297 Low LF, Draper B, Cheng A, Cruysmans B, Hayward-Wright N, Jeon, YH, et al. (2009). Future research on dementia relating to culturally and linguistically diverse communities. Australasian Journal on Ageing, 28, 144-148. O’Connell L (2011). CALD rural groups in the Penrith and Hawkesbury Local Government Areas. Multicultural Health Western Cluster, Penrith Blue Mountains Local Health District Sapucci M (2011). Personal Communication- Issues for people living with dementia and their carers in rural/remote NSW, Transcultural Mental Health Centre, Parramatta, NSW, TMHC Shanley C, Leone D, Adams J, Santalucia Y, Ferrerosa-Rojas JE, Kourouche F, Gava S. & Wu Y. Qualitative research on dementia in ethnically diverse communities: fieldwork challenges and opportunities. American Journal of Alzheimer’s Disease and Other Dementias. Published online 19 March 2013 as doi:10.1177/1533317513481099. Tingate C (2008). Overview of health issues for CALD residents in rural and semi-rural settings in the Blue Mountains, Greater Lithgow, Hawkesbury and Penrith Local Government Areas. Multicultural Health Network, Western Cluster, Sydney West Area Health Service Transcultural Mental Health Centre (2010). Transcultural Rural and Remote Outreach Project: Building Partnerships across the Great Divide, Transcultural Mental Health Centre, Parramatta, NSW, TMHC Tsapogas M. (1998). A Step by Step Guide for improving access to your service for people from a Non-English speaking background. The Ethnic Access Program, Ethnic Child Care, Family and Community Services Co-operative Ltd
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