Literature DB >> 32789474

"Making Sense of a Disease That Makes No Sense": Understanding Alzheimer's Disease and Related Disorders Among Caregivers and Providers Within Alaska Native Communities.

Jordan P Lewis1, Spero M Manson2, Valarie B Jernigan3, Carolyn Noonan4,5.   

Abstract

BACKGROUND AND OBJECTIVES: With the rate of Alzheimer's disease and related dementias (ADRD) increasing among Alaska Indian/Alaska Native (AI/AN) people, the Alaska Native Health system is ill-prepared to meet the challenges associated with the growing population at risk of ADRD. The high cost of care, inadequate training of health care providers, and lack of supportive services for caregivers are especially concerning. RESEARCH DESIGN AND METHODS: Interviews were conducted with 22 AN caregivers for ANs with ADRD and 12 ANs and non-Native health care providers in communities across Alaska. Interviews lasted approximately 60 min and were transcribed verbatim. We employed directed content analysis to examine the major agreements and disagreements between the participants' understandings of ADRD in each of the domains of Kleinman's Explanatory Model of Illness.
RESULTS: Caregivers and health care providers expressed concerns about the lack of understanding, resources, and awareness of ADRD among ANs in rural and urban communities. Both caregivers and providers recognized the need to obtain an early diagnosis, blend Western and traditional medicines, promote lifestyle and dietary changes, and foster training for caregivers. Health care providers acknowledged their limited exposure to AN understanding of ADRD and wish to receive culturally relevant training to better serve AN. DISCUSSION AND IMPLICATIONS: As the older AN adult population grows, the need for culturally responsive training and support services will continue to increase. We recommend establishing rural outreach and support groups for caregivers, developing an understanding of how ANs view ADRD to train and educate health care providers, and implement screening early for memory loss during routine medical examinations.
© The Author(s) 2020. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Entities:  

Keywords:  Alaska Natives; Alzheimer’s disease; Caregiving; Explanatory model of illness; Health care services; Precision medicine

Year:  2021        PMID: 32789474      PMCID: PMC8023374          DOI: 10.1093/geront/gnaa102

Source DB:  PubMed          Journal:  Gerontologist        ISSN: 0016-9013


  42 in total

Review 1.  American Indians/Alaska natives and dementia.

Authors:  Lori L Jervis; Spero M Manson
Journal:  Alzheimer Dis Assoc Disord       Date:  2002       Impact factor: 2.703

2.  Cultural factors in dementia: perspectives from the anthropology of aging.

Authors:  J Neil Henderson; John W Traphagan
Journal:  Alzheimer Dis Assoc Disord       Date:  2005 Oct-Dec       Impact factor: 2.703

3.  Cultural Construction of Dementia Progression, Behavioral Aberrations, and Situational Ethnicity: An Orthogonal Approach.

Authors:  J Neil Henderson
Journal:  Care Manag J       Date:  2015

4.  A Scoping Review of Dementia Care Experiences in Migrant Aged Care Workforce.

Authors:  Bola Adebayo; Pam Nichols; Karen Heslop; Bianca Brijnath
Journal:  Gerontologist       Date:  2020-02-24

5.  Systematic Review and Meta-Analysis of Racial and Ethnic Differences in Dementia Caregivers' Well-Being.

Authors:  Chelsea Liu; Adrian N S Badana; Julia Burgdorf; Chanee D Fabius; David L Roth; William E Haley
Journal:  Gerontologist       Date:  2021-07-13

Review 6.  Explanatory models of dementia: links to end-of-life care.

Authors:  Murna Downs; Neil Small; Katherine Froggatt
Journal:  Int J Palliat Nurs       Date:  2006-05

7.  Alzheimer's Association Dementia Care Practice Recommendations.

Authors:  Sam Fazio; Douglas Pace; Katie Maslow; Sheryl Zimmerman; Beth Kallmyer
Journal:  Gerontologist       Date:  2018-01-18

8.  Rural and remote dementia care challenges and needs: perspectives of formal and informal care providers residing in Saskatchewan, Canada.

Authors:  Vanina P M Dal Bello-Haas; Allison Cammer; Debra Morgan; Norma Stewart; Julie Kosteniuk
Journal:  Rural Remote Health       Date:  2014-08-01       Impact factor: 1.759

9.  Explanatory models of illness in schizophrenia: comparison of four ethnic groups.

Authors:  Rosemarie McCabe; Stefan Priebe
Journal:  Br J Psychiatry       Date:  2004-07       Impact factor: 9.319

10.  A Review of Qualitative Research of Perception and Experiences of Dementia Among Adults From Black, African, and Caribbean Background: What and Whom Are We Researching?

Authors:  Moïse Roche; Paul Higgs; Jesutofunmi Aworinde; Claudia Cooper
Journal:  Gerontologist       Date:  2021-07-13
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  2 in total

1.  Diverse rural caregivers for individuals with Alzheimer's disease or related dementias: analysis of health factors at the individual, interpersonal, and community level.

Authors:  Michael J McCarthy; Y Evie Garcia; Mark Remiker; Morgan Lee-Regalado Hustead; Rachel Bacon; Heather J Williamson; Dorothy J Dunn; Julie Baldwin
Journal:  Aging Ment Health       Date:  2022-01-31       Impact factor: 3.514

2.  Health promotion interventions supporting Indigenous healthy ageing: a scoping review.

Authors:  Sarah Oosman; Christine Nisbet; Liris Smith; Sylvia Abonyi
Journal:  Int J Circumpolar Health       Date:  2021-12       Impact factor: 1.228

  2 in total

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