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How to construct a case of Alzheimer's disease in three languages: case-based reasoning in narrative gerontology
- Authors:
- SCHRAUF Robert W., et al
- Journal article citation:
- Ageing and Society, 34(2), 2014, pp.280-309.
- Publisher:
- Cambridge University Press
This paper explores how people reason about Alzheimer's disease by telling stories about others who have the disease. More specifically, the paper is a cross-linguistic investigation of the narrative and linguistic devices used by African Americans in English, Mexican Americans in Spanish, and refugees/immigrants from the former Soviet Union (to the United States of America) in Russian in their oral productions of such stories. The authors examine the narratives as instances of case-based reasoning in which lay people (non-medical professionals) distinguish, represent and ‘perform’ symptomatic behaviours and construct a ‘case’ of the disease as a way of probing the difference between the normal and the pathological in conversational contexts. In particular, the authors examine situations in which stories are accepted and confirmed and situations in which stories are contested and negotiated. Common narrative and discursive devices across the three languages include concatenation, intertextuality, conjunction and conjunctive adverbs, lexical opposition, past progressive tenses, temporal adverbials, reported speech and prosodic cues. The fine-grained analysis of these narrative and discursive devices lays bare the inner-workings of case-based reasoning as a conversational task and suggests specific linguistic tools for intervening in lay narrative reasoning in clinical settings and in public health messaging about Alzheimer's disease. (Edited publisher abstract)
An interdisciplinary outreach model of African American recruitment for Alzheimer's disease research
- Authors:
- WILLIAMS Monique M., et al
- Journal article citation:
- Gerontologist, 51(S1), June 2011, pp.S134-S141.
- Publisher:
- Oxford University Press
The African American Outreach Satellite provides educational outreach to facilitate African American recruitment for longitudinal studies at the Washington University Alzheimer's Disease Research Center. This article describes its recruitment methods and strategic plan for community engagement, which included social marketing, training for health care providers, outreach literature and use of media. It discusses implementation of the plan and sets out the results of outreach and recruitment activities. It notes that following implementation of the recruitment initiative the number of African American participants in ADRC supported activities has increased considerably, and that establishment and maintenance of successful community partnerships is an essential component of effective African American outreach and recruitment efforts.
Putting culture into dementia care
- Author:
- NUGENT Michael
- Journal article citation:
- Community Care, 8.6.00, 2000, p.12.
- Publisher:
- Reed Business Information
Stresses the importance of offering culturally appropriate dementia care services.
Utilizing the Senior Companion Program as a platform for a culturally informed caregiver intervention: results from a mixed methods pilot study
- Authors:
- FIELDS Noelle L., et al
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 20(1), 2021, pp.161-187.
- Publisher:
- Sage
To address the need for accessible, affordable, and sustainable Alzheimer's disease and related dementia caregiver interventions with minority populations, we developed the Senior Companion Program Plus, a three-phase pilot study that used a mixed methods experimental design. The intent was to determine if participation in a lay provider, peer-led psychoeducational intervention designed for African American Alzheimer's disease and related dementia caregivers (N = 16) improved caregiver burden and/or stress, coping skills, and social support. Focus groups with Senior Companions informed the intervention design. Quantitative results indicated that caregivers experienced improvement in their overall level of social support and well-being in meeting basic needs. Qualitative findings suggested that caregivers experienced improvement in their knowledge about the disease, experienced increased coping with Alzheimer's disease and related dementia caregiving, and reported benefits of using a lay provider model. Overall, the data suggest that the Senior Companion Program Plus is a promising intervention for African American Alzheimer's disease and related dementia caregivers. (Edited publisher abstract)
Knowledge and perceptions of dementia and Alzheimer's disease in four ethnic groups in Copenhagen, Denmark
- Authors:
- NIELSEN T. Rune, WALDEMAR Gunhild
- Journal article citation:
- International Journal of Geriatric Psychiatry, 31(3), 2016, p.222–230.
- Publisher:
- Wiley
Objective: Older people from ethnic minorities are underrepresented in dementia care. Some of the determinants of access to care are knowledge and perceptions of dementia, which may vary between ethnic groups in the population. The aims of this study were to compare knowledge and perceptions of dementia and Alzheimer's disease (AD) among four ethnic groups in Copenhagen, Denmark, and to assess the influence of education and acculturation. Methods: Quantitative survey data from 260 participants were analysed: 100 native Danish, and 47 Polish, 51 Turkish, and 62 Pakistani immigrants. Knowledge and perceptions of dementia and AD were assessed with the Dementia Knowledge Questionnaire (DKQ) supplemented with two questions from the Alzheimer's Disease Awareness Test (ADAT). Knowledge and perceptions of dementia and AD in the four groups were compared, and the influence of education and acculturation was assessed. Results: Group differences were found on the DKQ total score as well as all sub-domains. Turkish and Pakistani people were most likely to hold normalizing and stigmatizing views of AD. Level of education and acculturation had limited influence on dementia knowledge, accounting for 22% of the variance at most and had only minor influence on perceptions of AD. Conclusions: Lacking knowledge and certain perceptions of dementia and AD may hamper access to services in some ethnic minority groups. Ongoing efforts to raise awareness that dementia and AD are not part of normal ageing, particularly among Turkish and Pakistani communities, should be a high priority for educational outreach. (Edited publisher abstract)
Re-examining ethnic differences in concerns, knowledge, and beliefs about Alzheimer's disease: results from a national sample
- Author:
- AYALON Liat
- Journal article citation:
- International Journal of Geriatric Psychiatry, 28(12), 2013, pp.1288-1295.
- Publisher:
- Wiley
The 2010 US Health and Retirement Study was used to evaluate the differences in concerns, knowledge, and beliefs about Alzheimer's disease (AD) in three ethnic groups of older adults (White, Latino, and Black). Data from 939 White, 120 Latino, and 171 Black respondents who completed a special module about AD concerns, knowledge, and beliefs were analysed for the study. Significant ethnic differences were found on 7 of 13 items. However, after the adjustment for education, gender, age, having a family member with AD, depressive symptoms, and medical comorbidity, only four items showed significant ethnic group differences; relative to White respondents, Black respondents were less likely to report that having a parent or a sibling with AD increases the chance of developing AD and that genetics was an important risk for AD. In addition, relative to White respondents, both Black and Latino respondents were more likely to perceive stress as a potential risk for AD. Latino respondents were less likely to perceive mental activity as a protective factor. The study found limited ethnic group differences, with most items showing a similar pattern across groups. Nevertheless, the nature of the ethnic group differences found might be associated with a differential pattern of health service use. (Edited publisher abstract)
Lessons learned from implementing a psycho-educational intervention for African American dementia caregivers
- Authors:
- MORANO Carmen L., KING M. Denise
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 9(4), November 2010, pp.558-568.
- Publisher:
- Sage
The process of developing and implementing a psycho-educational intervention for African American caregivers in the United States is described. The process which was informed by a review of the caregiving and intervention literature, and stress, appraisal, and coping theory. The intervention included 12 modules that lasted approximately 90 minutes each. Twelve participants were recruited from the local Alzheimer’s Association, local area churches and social clubs, and primary care physicians. The article discusses issues that came up during the pilot test and highlights the importance of participant input, in the design, implementation, and evaluation of intervention programmes. The dilemmas created due to the competing needs for good research with those of the participants are highlighted.
African-American urban clergy's literacy of Alzheimer's disease
- Authors:
- STANSBURY Kim L., HARLEY Debra A., BROWN-HUGHES Travonia
- Journal article citation:
- Social Work in Mental Health, 8(3), May 2010, pp.254-266.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
This study aimed to determine urban African-American clergy's awareness of Alzheimer's disease, and their willingness to provide support to elders and their family/caregivers. Interviews were conducted with 9 African-American clergy who presided over churches in central Kentucky. Findings showed that all clergy had previous experience providing pastoral care to adults with Alzheimer's disease and were literate regarding its treatment. The clergy were all able to identify risk factors associated with Alzheimer's disease, such as age, diet, genetics, lifestyle choices, diabetes and hypertension. The clergy also acknowledged that Alzheimer's was an incurable degenerative disease. Endorsement of professional help was unanimous, because they felt they could offer no more than emotional support. A majority of participants were knowledgeable about various health and mental health agencies, but were unfamiliar with the process of navigating them. In conclusion, the authors suggest that collaboration between government, educational, and faith based programmes could foster interventions that are effective in meeting the needs of diverse populations of Alzheimer's sufferers.
Korean-American family postcaregivers on dementia caregiving: a phenomenological inquiry
- Author:
- KIM Yujin
- Journal article citation:
- Journal of Gerontological Social Work, 52(6), August 2009, pp.600-617.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
The purpose of this article is to understand dementia caring and postcaring experience from the Korean-American family carer perspective. In this transcendental phenomenological study, the author analysed both in-depth interviews from 8 carers and field notes with the procedure of Moustakas' (1994) modification of the Van Kaam method. Five core themes characterised participants' experiences: understanding elderly patients with Alzheimer's by accepting it as a disease; self-defining and self-appraising of carers; caring as a family affair while examining transgenerational continuity of filial piety; returning caring to carers in turn as a mode of mourning; and reviewing dissatisfying experiences with the formal care system. Based on a small but relatively heterogeneous sample, this study advances the understanding of the underlying, dynamic context of Korean-American family dementia caring and addresses certain implications of geriatric social work intervention for postcarers.
Informal caregiving networks and use of formal services by Inner-City African American elderly with dementia
- Authors:
- LI Hong, EDWARDS Dorothy, MORROW-HOWELL Nancy
- Journal article citation:
- Families in Society, 85(1), January 2004, pp.55-62.
- Publisher:
- The Alliance for Children and Families
Presents a study of a group of 200 urban African American older people with dementia, the characteristics of their informal caregiving networks, and patterns of formal service use to examine relationships between informal caregiving networks and formal service use. Multiple logistic regression analysis indicated that older people were less likely to use formal services when caregivers in the informal networks were more capable of making care-related decisions. In addition, older people's functional status, annual income, and Medicaid eligibility were also significantly related to their use of formal services. Discusses practice implications of the findings.