Assessing Equitable Inclusion of Underrepresented Older Adults in Alzheimer’s Disease, Related Cognitive Disorders, and Aging-Related Research: A Scoping Review
Abstract Background and Objectives The rapidly aging and diversifying U.S. population is challenged by increases in prevalence of Alzheimer’s disease (AD) and aging-related disorders. We conducted a scoping review to assess equitable inclusion of diverse older adult populations in aging research foc...
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| Veröffentlicht in: | The Gerontologist 2023-07, Vol.63 (6), p.1067-1077 |
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| container_title | The Gerontologist |
| container_volume | 63 |
| creator | Godbole, Nisha Kwon, Simona C Beasley, Jeannette M Roberts, Timothy Kranick, Julie Smilowitz, Jessica Park, Agnes Sherman, Scott E Trinh-Shevrin, Chau Chodosh, Joshua |
| description | Abstract
Background and Objectives
The rapidly aging and diversifying U.S. population is challenged by increases in prevalence of Alzheimer’s disease (AD) and aging-related disorders. We conducted a scoping review to assess equitable inclusion of diverse older adult populations in aging research focused on National Institutes of Health (NIH)-sponsored research.
Research Design and Methods
The scoping review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocol. The search was limited to NIH-funded studies focusing on aging, AD, and Alzheimer’s disease-related dementias (ADRD) and included adults aged 55 and older. The priority populations and health disparities put forth by the National Institute on Aging Health Disparities Framework serve as a model for guiding inclusion criteria and for interpreting the representation of these underrepresented groups, including racial-ethnic minorities, socioeconomically disadvantaged, rural populations, groups with disabilities, and lesbian, gay, bisexual, transgender, and queer or questioning (LGBTQ) communities.
Results
Our search identified 1,177 records, of which 436 articles were included in the analysis. Inclusion of individuals with ADRD and mild cognitive impairment, racial-ethnic minorities, rural populations, socioeconomically disadvantaged, groups with disabilities, and LGBTQ communities were poorly specified in most studies. Studies used multiple recruitment methods, conducting studies in community settings (59%) and hospitals/clinics (38%) most frequently. Incentives, convenience factors, and sustained engagement via community-based and care partners were identified as key strategies for improved retention.
Discussion and Implications
This scoping review identified gaps in existing literature and aims for future work, including stronger research focus on, better inclusion of, and improved data collection and reporting of older adults from underrepresented groups. |
| doi_str_mv | 10.1093/geront/gnac060 |
| format | Article |
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Background and Objectives
The rapidly aging and diversifying U.S. population is challenged by increases in prevalence of Alzheimer’s disease (AD) and aging-related disorders. We conducted a scoping review to assess equitable inclusion of diverse older adult populations in aging research focused on National Institutes of Health (NIH)-sponsored research.
Research Design and Methods
The scoping review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocol. The search was limited to NIH-funded studies focusing on aging, AD, and Alzheimer’s disease-related dementias (ADRD) and included adults aged 55 and older. The priority populations and health disparities put forth by the National Institute on Aging Health Disparities Framework serve as a model for guiding inclusion criteria and for interpreting the representation of these underrepresented groups, including racial-ethnic minorities, socioeconomically disadvantaged, rural populations, groups with disabilities, and lesbian, gay, bisexual, transgender, and queer or questioning (LGBTQ) communities.
Results
Our search identified 1,177 records, of which 436 articles were included in the analysis. Inclusion of individuals with ADRD and mild cognitive impairment, racial-ethnic minorities, rural populations, socioeconomically disadvantaged, groups with disabilities, and LGBTQ communities were poorly specified in most studies. Studies used multiple recruitment methods, conducting studies in community settings (59%) and hospitals/clinics (38%) most frequently. Incentives, convenience factors, and sustained engagement via community-based and care partners were identified as key strategies for improved retention.
Discussion and Implications
This scoping review identified gaps in existing literature and aims for future work, including stronger research focus on, better inclusion of, and improved data collection and reporting of older adults from underrepresented groups.</description><identifier>ISSN: 0016-9013</identifier><identifier>EISSN: 1758-5341</identifier><identifier>DOI: 10.1093/geront/gnac060</identifier><identifier>PMID: 35472166</identifier><language>eng</language><publisher>US: Oxford University Press</publisher><subject>Aging ; Alzheimer's disease ; Bisexuality ; Cognition ; Data collection ; Dementia ; Disadvantaged ; Disorders ; Diversity and Equity in ADRD Research ; Ethnic groups ; Ethnicity ; Health disparities ; Health research ; Hospitals ; Lesbianism ; LGBTQ people ; Marginality ; Minority groups ; Older people ; Recruitment ; Research design ; Transgender persons</subject><ispartof>The Gerontologist, 2023-07, Vol.63 (6), p.1067-1077</ispartof><rights>The Author(s) 2022. 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. 2022</rights><rights>The Author(s) 2022. 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.</rights><rights>Copyright Oxford University Press Aug 2023</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c383t-91eaf49c16f7ca0da68cc36b47632d2ce170fd9dc9cbebd879acdeae6cc7d4063</citedby><cites>FETCH-LOGICAL-c383t-91eaf49c16f7ca0da68cc36b47632d2ce170fd9dc9cbebd879acdeae6cc7d4063</cites><orcidid>0000-0003-1752-7303</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>230,314,780,784,885,1584,27924,27925,33774</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/35472166$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><contributor>Heyn, Patricia C</contributor><creatorcontrib>Godbole, Nisha</creatorcontrib><creatorcontrib>Kwon, Simona C</creatorcontrib><creatorcontrib>Beasley, Jeannette M</creatorcontrib><creatorcontrib>Roberts, Timothy</creatorcontrib><creatorcontrib>Kranick, Julie</creatorcontrib><creatorcontrib>Smilowitz, Jessica</creatorcontrib><creatorcontrib>Park, Agnes</creatorcontrib><creatorcontrib>Sherman, Scott E</creatorcontrib><creatorcontrib>Trinh-Shevrin, Chau</creatorcontrib><creatorcontrib>Chodosh, Joshua</creatorcontrib><title>Assessing Equitable Inclusion of Underrepresented Older Adults in Alzheimer’s Disease, Related Cognitive Disorders, and Aging-Related Research: A Scoping Review</title><title>The Gerontologist</title><addtitle>Gerontologist</addtitle><description>Abstract
Background and Objectives
The rapidly aging and diversifying U.S. population is challenged by increases in prevalence of Alzheimer’s disease (AD) and aging-related disorders. We conducted a scoping review to assess equitable inclusion of diverse older adult populations in aging research focused on National Institutes of Health (NIH)-sponsored research.
Research Design and Methods
The scoping review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocol. The search was limited to NIH-funded studies focusing on aging, AD, and Alzheimer’s disease-related dementias (ADRD) and included adults aged 55 and older. The priority populations and health disparities put forth by the National Institute on Aging Health Disparities Framework serve as a model for guiding inclusion criteria and for interpreting the representation of these underrepresented groups, including racial-ethnic minorities, socioeconomically disadvantaged, rural populations, groups with disabilities, and lesbian, gay, bisexual, transgender, and queer or questioning (LGBTQ) communities.
Results
Our search identified 1,177 records, of which 436 articles were included in the analysis. Inclusion of individuals with ADRD and mild cognitive impairment, racial-ethnic minorities, rural populations, socioeconomically disadvantaged, groups with disabilities, and LGBTQ communities were poorly specified in most studies. Studies used multiple recruitment methods, conducting studies in community settings (59%) and hospitals/clinics (38%) most frequently. Incentives, convenience factors, and sustained engagement via community-based and care partners were identified as key strategies for improved retention.
Discussion and Implications
This scoping review identified gaps in existing literature and aims for future work, including stronger research focus on, better inclusion of, and improved data collection and reporting of older adults from underrepresented groups.</description><subject>Aging</subject><subject>Alzheimer's disease</subject><subject>Bisexuality</subject><subject>Cognition</subject><subject>Data collection</subject><subject>Dementia</subject><subject>Disadvantaged</subject><subject>Disorders</subject><subject>Diversity and Equity in ADRD Research</subject><subject>Ethnic groups</subject><subject>Ethnicity</subject><subject>Health disparities</subject><subject>Health research</subject><subject>Hospitals</subject><subject>Lesbianism</subject><subject>LGBTQ people</subject><subject>Marginality</subject><subject>Minority groups</subject><subject>Older people</subject><subject>Recruitment</subject><subject>Research design</subject><subject>Transgender persons</subject><issn>0016-9013</issn><issn>1758-5341</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2023</creationdate><recordtype>article</recordtype><sourceid>BHHNA</sourceid><recordid>eNqFkcFu1DAQhi0EokvhyhFZ4gJS09px4iRcULQUqFSp0kLPlmNPsq68dmoni-DEa3Dl0XgSvNptBVw4jTzzze_59SP0nJJTShp2NkDwbjobnFSEkwdoQauyzkpW0IdoQQjlWUMoO0JPYrwh6Z3n1WN0xMqiyinnC_SzjRFiNG7A57ezmWRnAV84ZedovMO-x9dOQwgwBojgJtD4yqYGbvVsp4iNw639tgazgfDr-4-I35kIMsIJXoGVO3zpB2cms4XdyIe0G0-wdBq3Q_o1u8NWSV4GtX6DW_xJ-XF30Qq2Br48RY96aSM8O9RjdP3-_PPyY3Z59eFi2V5mitVsyhoKsi8aRXlfKUm05LVSjHdFxVmucwW0Ir1utGpUB52uq0YqDRK4UpUuCGfH6O1ed5y7DWiV3AZpxRjMRoavwksj_p44sxaD3wpKWMlIkSeFVweF4G9niJPYmKjAWunAz1HkvOS0aXJaJfTlP-iNn4NL_kReF6QmJOWTqNM9pYKPMUB_fw0lYpe_2OcvDvmnhRd_erjH7wJPwOs94Ofxf2K_AXBTwdw</recordid><startdate>20230718</startdate><enddate>20230718</enddate><creator>Godbole, Nisha</creator><creator>Kwon, Simona C</creator><creator>Beasley, Jeannette M</creator><creator>Roberts, Timothy</creator><creator>Kranick, Julie</creator><creator>Smilowitz, Jessica</creator><creator>Park, Agnes</creator><creator>Sherman, Scott E</creator><creator>Trinh-Shevrin, Chau</creator><creator>Chodosh, Joshua</creator><general>Oxford University Press</general><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7U3</scope><scope>7U4</scope><scope>ASE</scope><scope>BHHNA</scope><scope>DWI</scope><scope>FPQ</scope><scope>K6X</scope><scope>K9.</scope><scope>NAPCQ</scope><scope>WZK</scope><scope>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0003-1752-7303</orcidid></search><sort><creationdate>20230718</creationdate><title>Assessing Equitable Inclusion of Underrepresented Older Adults in Alzheimer’s Disease, Related Cognitive Disorders, and Aging-Related Research: A Scoping Review</title><author>Godbole, Nisha ; Kwon, Simona C ; Beasley, Jeannette M ; Roberts, Timothy ; Kranick, Julie ; Smilowitz, Jessica ; Park, Agnes ; Sherman, Scott E ; Trinh-Shevrin, Chau ; Chodosh, Joshua</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c383t-91eaf49c16f7ca0da68cc36b47632d2ce170fd9dc9cbebd879acdeae6cc7d4063</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2023</creationdate><topic>Aging</topic><topic>Alzheimer's disease</topic><topic>Bisexuality</topic><topic>Cognition</topic><topic>Data collection</topic><topic>Dementia</topic><topic>Disadvantaged</topic><topic>Disorders</topic><topic>Diversity and Equity in ADRD Research</topic><topic>Ethnic groups</topic><topic>Ethnicity</topic><topic>Health disparities</topic><topic>Health research</topic><topic>Hospitals</topic><topic>Lesbianism</topic><topic>LGBTQ people</topic><topic>Marginality</topic><topic>Minority groups</topic><topic>Older people</topic><topic>Recruitment</topic><topic>Research design</topic><topic>Transgender persons</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Godbole, Nisha</creatorcontrib><creatorcontrib>Kwon, Simona C</creatorcontrib><creatorcontrib>Beasley, Jeannette M</creatorcontrib><creatorcontrib>Roberts, Timothy</creatorcontrib><creatorcontrib>Kranick, Julie</creatorcontrib><creatorcontrib>Smilowitz, Jessica</creatorcontrib><creatorcontrib>Park, Agnes</creatorcontrib><creatorcontrib>Sherman, Scott E</creatorcontrib><creatorcontrib>Trinh-Shevrin, Chau</creatorcontrib><creatorcontrib>Chodosh, Joshua</creatorcontrib><collection>PubMed</collection><collection>CrossRef</collection><collection>Social Services Abstracts</collection><collection>Sociological Abstracts (pre-2017)</collection><collection>British Nursing Index</collection><collection>Sociological Abstracts</collection><collection>Sociological Abstracts</collection><collection>British Nursing Index (BNI) (1985 to Present)</collection><collection>British Nursing Index</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Premium</collection><collection>Sociological Abstracts (Ovid)</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>The Gerontologist</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Godbole, Nisha</au><au>Kwon, Simona C</au><au>Beasley, Jeannette M</au><au>Roberts, Timothy</au><au>Kranick, Julie</au><au>Smilowitz, Jessica</au><au>Park, Agnes</au><au>Sherman, Scott E</au><au>Trinh-Shevrin, Chau</au><au>Chodosh, Joshua</au><au>Heyn, Patricia C</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Assessing Equitable Inclusion of Underrepresented Older Adults in Alzheimer’s Disease, Related Cognitive Disorders, and Aging-Related Research: A Scoping Review</atitle><jtitle>The Gerontologist</jtitle><addtitle>Gerontologist</addtitle><date>2023-07-18</date><risdate>2023</risdate><volume>63</volume><issue>6</issue><spage>1067</spage><epage>1077</epage><pages>1067-1077</pages><issn>0016-9013</issn><eissn>1758-5341</eissn><abstract>Abstract
Background and Objectives
The rapidly aging and diversifying U.S. population is challenged by increases in prevalence of Alzheimer’s disease (AD) and aging-related disorders. We conducted a scoping review to assess equitable inclusion of diverse older adult populations in aging research focused on National Institutes of Health (NIH)-sponsored research.
Research Design and Methods
The scoping review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocol. The search was limited to NIH-funded studies focusing on aging, AD, and Alzheimer’s disease-related dementias (ADRD) and included adults aged 55 and older. The priority populations and health disparities put forth by the National Institute on Aging Health Disparities Framework serve as a model for guiding inclusion criteria and for interpreting the representation of these underrepresented groups, including racial-ethnic minorities, socioeconomically disadvantaged, rural populations, groups with disabilities, and lesbian, gay, bisexual, transgender, and queer or questioning (LGBTQ) communities.
Results
Our search identified 1,177 records, of which 436 articles were included in the analysis. Inclusion of individuals with ADRD and mild cognitive impairment, racial-ethnic minorities, rural populations, socioeconomically disadvantaged, groups with disabilities, and LGBTQ communities were poorly specified in most studies. Studies used multiple recruitment methods, conducting studies in community settings (59%) and hospitals/clinics (38%) most frequently. Incentives, convenience factors, and sustained engagement via community-based and care partners were identified as key strategies for improved retention.
Discussion and Implications
This scoping review identified gaps in existing literature and aims for future work, including stronger research focus on, better inclusion of, and improved data collection and reporting of older adults from underrepresented groups.</abstract><cop>US</cop><pub>Oxford University Press</pub><pmid>35472166</pmid><doi>10.1093/geront/gnac060</doi><tpages>11</tpages><orcidid>https://orcid.org/0000-0003-1752-7303</orcidid><oa>free_for_read</oa></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 0016-9013 |
| ispartof | The Gerontologist, 2023-07, Vol.63 (6), p.1067-1077 |
| issn | 0016-9013 1758-5341 |
| language | eng |
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| source | Sociological Abstracts; Oxford University Press Journals All Titles (1996-Current); Alma/SFX Local Collection |
| subjects | Aging Alzheimer's disease Bisexuality Cognition Data collection Dementia Disadvantaged Disorders Diversity and Equity in ADRD Research Ethnic groups Ethnicity Health disparities Health research Hospitals Lesbianism LGBTQ people Marginality Minority groups Older people Recruitment Research design Transgender persons |
| title | Assessing Equitable Inclusion of Underrepresented Older Adults in Alzheimer’s Disease, Related Cognitive Disorders, and Aging-Related Research: A Scoping Review |
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