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Racial, Ethnic, and Cultural Differences in Dementia Caregiving: Review and Analysis

Author/s: Connell, Cathleen M. Gibson, Gloria D. | Year: 1997 | Publication type: Journal article | Peer reviewed: | Topic area/s: Dementia, Carers of Older CALD People

Reference: Connell, C. M. and G. D. Gibson (1997). "Racial, Ethnic, and Cultural Differences in Dementia Caregiving: Review and Analysis." The Gerontologist 37(3): 355-364.

Key Words:
caregiving, international study, literature review, attitudes towards caregiving
Research aim:
This study provides a review and analysis of the empirical research published since 1985 that has examined the impact of race, culture, and/or ethnicity on the dementia caregiving experience.
Results/Conclusion:
Ten of the 12 studies included in the review focused on comparisons between Black and White caregivers; one examined differences between Black and Hispanic caregivers, and one focused on White and Hispanic caregivers. Compared to White caregivers, non-White caregivers: a) were less likely to be a spouse and more likely to be an adult child, friend, or other family member, b) reported lower levels of caregiver stress, burden, and depression, c) endorsed more strongly held beliefs about filial support, and d) were more likely to use prayer, faith, or religion as coping mechanisms.
Implications:
Strategies for advancing research in this area are discussed.
Cultural Group(s):
African Americans, White Americans, Hispanic Americans
Location of study:
United States
Age group:
mixed
Number included in study:
N/A
Type of participants:
caregivers of people with dementia
Research approach:
Literature review
Type of data:
Literature review
Secondary data sources used:
Specific scales or analytical techniques used:
Implications/ Recommendations:
Notes:

CALD Dementia Strategic Model Literature Review, Report, Model

Author/s: Cultural and Indigenous Research Centre Australia | Year: 2008 | Publication type: Report (literature review) | Peer reviewed: | Topic area/s: Dementia

Reference: Cultural and Indigenous Research Centre Australia (2008). CALD Dementia Strategic Model Literature Review, Report, Model. New South Wales, New South Wales Government Department of Family & Community Services: Ageing, Disability & Home Care: 92.

Key Words:
dementia
Research aim:
research and development of a strategic model to support the development of dementia services appropriate to the needs of CALD communities in NSW.
Results/Conclusion:
The literature review found that while some research is available on dementia and the needs of CALD communities the information base is not extensive, and very limited when it comes to the three target CALD communities: 1) There is expected to be an increasing prevalence of dementia in CALD communities due to the rapid ageing of many CALD communities 2) There appear to be lower levels of access to dementia services by CALD communities, influenced by the level of information available, language barriers, cultural factors, and cultural appropriateness of services. The fieldwork sought to build on and fill some of the gaps arising from the literature review, and found that there were both similarities and differences between the three target communities. 3) The key role of bilingual doctors in diagnosis 4) The expressed desire for language specific services. 5)Complex models of care, including adult children playing a role as an information access point.
Implications:
Cultural Group(s):
Italian, Vietnamese and Chinese
Location of study:
New South Wales
Age group:
Number included in study:
N/A
Type of participants:
Research approach:
Qualitative
Type of data:
Primary and secondary
Secondary data sources used:
Specific scales or analytical techniques used:
Implications/ Recommendations:
Notes:

Minority ethnic groups in dementia care: a review of service needs, service provision and models of good practice

Author/s: Daker-White, G. Beattie, A. M. Gilliard, J. Means, R. | Year: 2002 | Publication type: Journal article | Peer reviewed: | Topic area/s: Dementia

Reference: Daker-White, G., A. M. Beattie, J. Gilliard and R. Means (2002). "Minority ethnic groups in dementia care: a review of service needs, service provision and models of good practice." Aging & Mental Health 6(2): 101-108.

Key Words:
literature review, dementia, cognitive asssessments, language
Research aim:
Literature review of articles about ethnic groups in dementia care
Results/Conclusion:
Sixty-seven English language articles were obtained for the review, the majority of which (44, 65.7%) had US origins. Broadly, the main issues covered in the literature were the under-utilization of services by minority ethnic groups; the prevalence of dementia in different ethnic groups; the experience of care giving in different racial groups and language as a factor in cognitive assessment. Although it has been argued that the instruments used to assess cognitive function are culturally biased, the available published evidence would seem to suggest that the fundamental issue is language ability, rather than minority group membership per se.
Implications:
Studies of help-seeking among various ethnic groups in the US have found that many do not prioritize dementia as a health problem in the face of more pressing concerns. There was little consensus amongst the articles about whether services should be provided specifically for different ethnic groups, reflecting a lack of evidence concerning the efficacy of different models of service provision.
Cultural Group(s):
Minority ethnic groups
Location of study:
United States
Age group:
Number included in study:
67
Type of participants:
Articles reviewed in this literature review
Research approach:
Type of data:
Literature review
Secondary data sources used:
Specific scales or analytical techniques used:
Implications/ Recommendations:
Notes:

Dementia Prevelance in Australia: The Statistics 2013

Author/s: Deloitte Access Economics | Year: 2012 | Publication type: Report | Peer reviewed: | Topic area/s: Dementia

Reference: Deloitte Access Economics (2012). Dementia Prevelance in Australia: The Statistics 2013. Dementia Prevalence Data Commissioned by Alzheimer's Australia Vic.

Key Words:
dementia, projections, Victoria
Research aim:
Deloitte Access Economics was commissioned by Alzheimer's Australia Vic in 2012 to provide estimates and projections of dementia prevalence in Victoria. This report provides a detailed summary of the estimates and projections of dementia prevalence in Victoria, from 2013 through to 2050.
Results/Conclusion:
In 2013, there are around 75,000 people living with dementia in Victoria. This number is projected to increase to almost 246,000 by 2050, unless there are medical breakthroughs. This growth will primarily be driven by increased population numbers and ageing; however, modifiable risk factors (e.g. lack of physical activity) will also play a role.
Implications:
Cultural Group(s):
CALD and non-CALD
Location of study:
Victoria
Age group:
Number included in study:
N/A
Type of participants:
Research approach:
Quantitative
Type of data:
Secondary
Secondary data sources used:
ABS Census data
Specific scales or analytical techniques used:
Implications/ Recommendations:
Notes:

Community Report: Delivery of ‘Coping with Care-giving’ to Chinese and Spanish-speaking carers of people with dementia living in Australia

Author/s: Dementia Collaborative Research Centre | Year: 2013 | Publication type: Report | Peer reviewed: | Topic area/s: Dementia, Carers who are CALD

Reference: Dementia Collaborative Research Centre (2013). Community Report: Delivery of 'Coping with Care-giving' to Chinese and Spanish-speaking carers of people with dementia living in Australia. Australian Government.

Key Words:
dementia, family care
Research aim:
This report provides information to communities about the results of this trial study of an intervention to support Spanish and Chinese-speaking carers of people with dementia
Results/Conclusion:
The results suggest the intervention had a positive effect on both CALD groups. Specifically, the questionnaire showed Spanish-speakers experienced a reduction in depression, anxiety and stress levels and Chinese-speakers reported less depression.
Implications:
The program holds much promise for addressing some of the needs of Chinese and Spanish-speaking carers and should be explored with other groups
Cultural Group(s):
Spanish, Chinese
Location of study:
New South Wales (West Sydney)
Age group:
Number included in study:
N/A
Type of participants:
bilingual/bicultural family carers of dementia providing care 8 or more hours per week
Research approach:
Pilot study
Type of data:
Secondary data sources used:
Specific scales or analytical techniques used:
Implications/ Recommendations:
Notes:

Dementia Collaborative Research Centre (searchable research portal)

Author/s: Dementia Collaborative Research Centre | Year: | Publication type: Website | Peer reviewed: | Topic area/s: Internet Resources, Dementia

Reference: Dementia Collaborative Research Centre. "Dementia Collaborative Research Centre (searchable research portal)." from http://www.dementia.unsw.edu.au/.

Key Words:
literature database, dementia
Research aim:
Search projects by topic - including CALD - to pull out any research undertaken on the topic at the research centre and some links to research undertaken elsewhere
Results/Conclusion:
Implications:
Cultural Group(s):
Location of study:
Age group:
Number included in study:
N/A
Type of participants:
Research approach:
Type of data:
Secondary data sources used:
Specific scales or analytical techniques used:
Implications/ Recommendations:
Notes:
Resource for service providers and researchers and information about current projects in the CALD dementia area

The cultural influence of values, norms, meanings and perceptions in understanding dementia in ethnic communities’

Author/s: Dilworth-Anderson, P Gibson, B | Year: 2002 | Publication type: Journal article | Peer reviewed: | Topic area/s: Dementia

Reference: Dilworth-Anderson, P. and B. Gibson (2002). "The cultural influence of values, norms, meanings and perceptions in understanding dementia in ethnic communities'." Alzheimer's Disease and Associated Disorders: an International Journal 16: S56-S63.

Key Words:
dementia, culturally appropriate approach, caregiving
Research aim:
This article highlights the limited findings regarding ways in which culture can influence caregiving to older persons suffering from dementia across different ethnic groups in the United States.
Results/Conclusion:
Findings show that family caregiving processes and help seeking are influenced by the meanings family members assign.
Implications:
Cultural Group(s):
African, Chinese, European, Hispanic
Location of study:
United States
Age group:
Caregivers of people with dementia
Number included in study:
121
Type of participants:
caregivers of people with dementia
Research approach:
Qualitative
Type of data:
Primary
Secondary data sources used:
Specific scales or analytical techniques used:
Implications/ Recommendations:
Notes:

MEANT TO CARE about culturally relevant dementia care-Empowering Informing Resourcing

Author/s: Ethnic Communities Councils of Victoria | Year: 2011 | Publication type: Report | Peer reviewed: | Topic area/s: Dementia

Reference: Ethnic Communities Councils of Victoria (2011). MEANT TO CARE about culturally relevant dementia care-Empowering Informing Resourcing. Discussion Paper 1.

Key Words:
dementia, policy
Research aim:
This discussion paper focuses on the role policy makers can play in empowering, informing and resourcing dementia care programs in the ethnic and multicultural community sector. It highlights best practice initiatives and multicultural resources that have already been trialled and developed by ethnic agencies, multicultural centres and peak bodies such as Alzheimer‟s Australia Vic (AAV).
Results/Conclusion:
We encourage governing bodies to take meaningful action to improve the day-to-day lives of non-English speaking people with dementia by implementing the recommendations in this report which include: † Empowering the sector through community engagement, training and strengthening programs; † Informing culturally diverse people about what it means to live with dementia and how to get help; † Resourcing multilingual initiatives and culturally inclusive research into dementia issues.
Implications:
Whilst this paper offers insights and suggested solutions for improving culturally responsive dementia care, it also provides a wealth of multilingual resources and tips that can be accessed by service providers.
Cultural Group(s):
CALD
Location of study:
Age group:
Number included in study:
N/A
Type of participants:
Research approach:
Type of data:
Secondary data sources used:
Specific scales or analytical techniques used:
Implications/ Recommendations:
Notes:

Take up the Caregiver’s Burden: Stories of Care for Urban African American Elders with Dementia

Author/s: Fox, Kenneth Hinton, W. Ladson Levkoff, Sue | Year: 1999 | Publication type: Journal article | Peer reviewed: | Topic area/s: Dementia, Carers of CALD Older People

Reference: Fox, K., W. Hinton and S. Levkoff (1999) "Take up the Caregiver's Burden: Stories of Care for Urban African American Elders with Dementia" Culture, Medicine & Psychiatry 23(4):501-529

Key Words:
caregivers, dementia, older people, anthropological
Research aim:
This article explores how race and ethnicity are made to matter in the recognition of, the meaning-making around and the responses to dementing illness among a sample of African-American caregivers.
Results/Conclusion:
Current constructs, which consistently demonstrate ''lesser burden'' among African-American caregivers compared with Whites, may not adequately capture these caregivers' experiences. Interpretations of experiences, meanings of ''burden'' and the logic of symptoms in the illness narratives generated by these African-American caregivers of elders with dementia require attention to the embodiment of large scale sociopolitical and historical forces like residential, educational and occupational segregation, institutional racism, and economic exploitation over the life course.
Implications:
A social gerontology that does not bring into clearer light how large scale social forces - like institutional racism - may show up in a range of ways in local settings may actually (and tragically) exacerbate cultural misrepresentations despite good intentions.
Cultural Group(s):
African Amercians
Location of study:
United States
Age group:
Not specific - carers
Number included in study:
10 Caregiver Interviews
Type of participants:
Interviews with Carers of Older African Amercians with Dementia
Research approach:
Qualitative
Type of data:
Primary
Secondary data sources used:
None
Specific scales or analytical techniques used:
None
Implications/ Recommendations:
Notes:

Screening and Diagnostic Assessment of Non-english Speaking People with Dementia: Guidelines and System Recommendations for Practitioners, Service Managers and Policy Makers

Author/s: Grypma, R Mahajani, S Tam, E | Year: 2007 | Publication type: Report | Peer reviewed: | Topic area/s: Dementia

Reference: Grypma, R., S. Mahajani and E. Tam (2007). Screening and Diagnostic Assessment of Non-english Speaking People with Dementia: Guidelines and System Recommendations for Practitioners, Service Managers and Policy Makers. Canberra: Alzheimer's Australia.

Key Words:
dementia, assessment tools, culturally appropriate tools
Research aim:
These Guidelines and System Recommendations are intended to provide information for assessors when they are planning the dementia screening or assessment of a non-English speaking person. They apply to all elements of the screening, assessment and diagnosis process, including cognitive, neuropsychological and functional assessments. They reflect good assessment principles in general, but have been written specifically with dementia-related assessments in mind.
Results/Conclusion:
The Guidelines and System Recommendations document contains recommendations for resources and processes to be put into place to enable practitioners to make best use of these guidelines.
Implications:
Cultural Group(s):
Non-English speaking person
Location of study:
Australia (national)
Age group:
Number included in study:
N/A
Type of participants:
Research approach:
Type of data:
Secondary data sources used:
Specific scales or analytical techniques used:
Implications/ Recommendations:
Notes:
Not primary research - set of guidelines developed for use in cognitive assessments with people from a non-English speaking background.
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