Appendix A. Summary of research studies included in the literature review


Author (date)

MacKenzie J (2006)

Lee et al. (2005)

Liu et al. (2008)

Yang and Kleinman (2008)

115

Summarize findings from a 3-year project to develop and deliver culturally appropriate support group materials for South Asian and Eastern European family carers of relatives with dementia living in the United Kingdom

DOI: http://dx.doi.org/10.5772/intechopen.84858

Identify and compare the interpersonal experiences of stigma in patients with mental health impairments, schizophrenia, and diabetes mellitus in Hong Kong

Examining the relationship of stigma and dementia among Chinese and Vietnamese family caregivers

An analysis of how "face" is embodied in China to understand an articulation of how the social aspects of

Study purpose Study design Summary of key findings

preferred coping strategies, and linguistic and cultural barriers in communication and decision-making

Understandings of dementia in different cultural contexts can become operationalized through stigma processes, thus influencing the ways in which person with dementia and their family carers' participation in formal and informal support programs

Stigma was more frequently experienced among people living with mental health impairment from family members, partners, friends, and colleagues than those living with diabetes

Two sources of stigma were identified: the stigma of chronic and severe mental illness and a stigma reflecting negative stereotypes of aging or the elderlies. Chinese and Vietnamese cultural perceptions of normal aging accommodate different paths of aging, some more and some less desired. With regard to persons with dementia, a "normalized" but negative path of aging carried with it significant stigma that was distinct from but in addition to the stigma of chronic and severe

mental illness

Face—both moral and in particular social face—can be seen to function as forms of symbolic capital. Shame

of mental illness and dementia, and their pattern of service use. Assessment of abstracts for relevance and three researchers rated the quality of each included study. A narrative synthesis was used to extract and

Stage 1 involved semistructured interviews for 21 participants to explore carers' experiences of caregiving. Stage 2 involved developing and delivering of three 10-week support group programs, specified to reflect the needs of carers (identified in Stage 1) in a range of preferred community languages. Follow-up interview was conducted in stage 3 with each of the family carers 6 weeks after the completion of group

chart data

An Examination of Factors Influencing Equitable Access to Dementia Care and Support…

program

themes

Analysis of existing conceptual writings and empirical studies

Four focus groups were conducted to develop a selfreport questionnaire. Data were collected from outpatients

32 qualitative interviews were conducted among Chinese and Vietnamese family caregivers living in the USA to collect narrative data and identify key



An Examination of Factors Influencing Equitable Access to Dementia Care and Support… DOI: http://dx.doi.org/10.5772/intechopen.84858

Author (date)

Fontaine et al. (2007)

Giebel et al. (2015)

114

Explore the perceptions of aging, dementia, and agingassociated mental health difficulties among British people of Punjabi Indian

Examining the barriers and facilitators in accessing to culturally appropriate mental health care among South Asian older adults with memory impairment, dementia, and mental illness

origin

Study purpose Study design Summary of key findings

Redirecting Alzheimer Strategy - Tracing Memory Loss to Self Pathology

A focus group study was conducted between 2001 and 2003, involving 49 British South Asian individuals speaking English, Hindi, and Punjabi, aged 17–61 years. Data was collected on views of aging and aging-associated difficulties in initial groups. Following primary data collection, vignettes were used for more specific exploration of awareness and understanding of dementia in a second set of groups. Thematic analysis method was adopted to

analyze data

A literature search was conducted in Web of Knowledge, PubMed, and Ovid databases to search for literatures from 1984 to 2012 regarding South Asian older adults or their family carers, their understandings

• The language used in the current literature and the media and in the community creates an incorrect portrayal of persons living with the symptoms of dementia and creates and supports further stigmas and misconceptions regarding experience living with dementia. This eventually abolishes the value of the expression of the lived experiences, adding to the disbelief

and stigma

• Identified implications that symptoms of dementia partly resulted from lack of effort by the person themselves and possibly from lack of family care; thus overcoming own problems and family actions might be part of the solution • A sense of stigma and a lack of knowledge were identified about mental illness and services, along with disillusionment with doctors and exclusion from services

The following factors were identified by South Asians and health professionals that prevented help seeking and access to care: a lack of knowledge of dementia and mental illness and of local services, stigma, culturally

• Perception of aging was as a time of withdrawal and isolation, and frequently mentioned health problems involved physical or emotional and cognitive impairment


an illness; believing dementia was a normal Author (date)

McMurtay et al. (2009)

Rosendahl et al. (2016)

117

therapeutic dementia

DOI: http://dx.doi.org/10.5772/intechopen.84858

To explore whether regression to a primary language may be associated with development of cognitive impairment and increased risk for development of dementia

Explore and elaborate the experiences of family members and professional caregivers regarding the care provided to immigrants with dementia in group homes in Sweden

services

Study purpose Study design Summary of key findings

An Examination of Factors Influencing Equitable Access to Dementia Care and Support…

Studying two cases of bilingual patients who presented with early symptoms of dementia after regression to their primary

Exploratory, descriptive study with a qualitative approach was chosen using in-depth semi-structured interviews. Qualitative content analysis was conducted to analyze data

language

consequence of aging; thinking dementia had spiritual, psychological, physical health or social causes; feeling that caring for the person with dementia was a personal or family responsibility; experiences of shame and stigma within the community; believing there was nothing that could be done to help; and negative experiences of health-care services. Accessing to help was facilitated by recognition of dementia as an illness and knowledge about dementia. Minority of the ethnic groups face significant barriers to help seeking for dementia, often diagnosed in late stage

The cases described in the report support the hypothesis that an association may exist between regression to the use of primary language among bilinguals and poor cognitive performance and diagnosis of dementia

Three main categories were determined with seven subcategories. The first main category was a new living situation which included the following subcategories: adjusting to new living arrangements and expectations regarding activities and traditional food at the group home; the second main category, challenges in

communication with the subcategories: limited communication between the immigrant with dementia and the Swedish-speaking nursing staff and the consequences of linguistic misunderstandings and varied communication in a common language; and the third main category, the role of the family member at the

specialist, diagnostic, and


An Examination of Factors Influencing Equitable Access to Dementia Care and Support… DOI: http://dx.doi.org/10.5772/intechopen.84858

Author (date)

Kong et al. (2009)

Iliffe and Manthorpe (2010)

Bunn et al. (2012)

Mukadam et al. (2011)

116

stigma might incorporate the moral standing defined within a local context

Redirecting Alzheimer Strategy - Tracing Memory Loss to Self Pathology

To identify and describe experiences of Korean immigrant caregivers regarding American nursing home placement of their non-English-speaking older relatives with dementia

Argue that sociocultural/ ethnical issues are applicable to all individuals with dementia, independent of apparent ethnicity, and that promotion of cultural competence in service provision should not be relegated to an ethnic minority agenda

Evaluate the qualitative evidence regarding how individuals accommodate and adapt to the diagnosis of dementia and its immediate consequences, to guide

Explore the factors due to which people from minority ethnic (ME) groups with dementia present later to specialist, diagnostic, and

practice

Study purpose Study design Summary of key findings

Qualitative descriptive methods and qualitative content analysis using a total of 17 semi-structured interviews with 10 Korean immigrant family caregivers

Analysis of existing literature

Systemic review of qualitative studies using 102 studies from PubMed, PsycINFO, Embase, CINAHL, and the British Nursing Index databases. Thematic analysis was

conducted

Systemic review using three quantitative and ten qualitative studies

and "loss of face" were identified to lead to stigmatization associated with mental health impairments including

The "Korean way of thinking" was identified to be a fundamental cultural belief about caregiving. Six major themes were identified: (a) I never thought about a nursing home; (b) if I think in a Korean way, I feel; (c) nursing home staff cannot communicate with; (d) my care recipient maintains Korean culture; (e) nursing home services are better than expected but; and (f) my care recipient is more vulnerable because of

dementia

dementia

three key factors:

The experience of accessing to support is associated with

> 1. Language and literacy 2. Religious belief and cultural practices 3. Coping mechanism and social support 4. Protective factors

Three overarching themes emerged from the study: (1) pathways through diagnosis, including its impact on identity, roles, and relationships; (2) resolving conflicts to accommodate a diagnosis, including the acceptability of support, focusing on the present or the future, and the use or avoidance of knowledge; and

(3) strategies and support to minimize the impact of

conceptualizing dementia as an illness; believing dementia was a normal

Barriers to accessing support for dementia included not

dementia


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## Author details

Winnie Sun<sup>1</sup> \*, Srija Biswas<sup>1</sup> , Michelle Dacanay<sup>1</sup> and Ping Zou<sup>2</sup>

1 Faculty of Health Sciences, University of Ontario Institute of Technology, Oshawa, Canada

2 School of Nursing, Nipissing University, Toronto, Ontario, Canada

\*Address all correspondence to: winnie.sun@uoit.ca

© 2019 The Author(s). Licensee IntechOpen. This chapter is distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/ by/3.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

An Examination of Factors Influencing Equitable Access to Dementia Care and Support… DOI: http://dx.doi.org/10.5772/intechopen.84858
