{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,17]],"date-time":"2026-05-17T05:06:48Z","timestamp":1778994408475,"version":"3.51.4"},"reference-count":38,"publisher":"SAGE Publications","license":[{"start":{"date-parts":[[2026,5,11]],"date-time":"2026-05-11T00:00:00Z","timestamp":1778457600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","award":["R24AG066599"],"award-info":[{"award-number":["R24AG066599"]}],"id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Res Aging"],"abstract":"<jats:p>Although caregiving research has expanded over the years, LGBTQ + caregivers of individuals with Alzheimer\u2019s disease and related dementia (ADRD) remain understudied. LGBTQ + ADRD caregivers encounter unique obstacles (e.g., elevated stress, barriers to inclusive services, stigma and discrimination) that complicate caregiving experiences and have been understudied in research. To address these obstacles, researchers created the RISE Registry, a national network to engage LGBTQ + individuals in ADRD research. Semi-structured interviews (individual and focus groups) were facilitated with LGBTQ + ADRD caregivers (n = 44). Thematic analysis of the interviews revealed substantial caregiver burden, often compounded by a disconnect between their identities and perceived expectations of caregiving. Caregivers cited conflicting family obligations, limited support resources, and non-affirming services, though some found assistance or respite through veteran or faith-based organizations. These findings underscore the burden and unmet needs of LGBTQ + caregivers, targets that are crucial to address to improve well-being among LGBTQ + caregivers.<\/jats:p>","DOI":"10.1177\/01640275261451173","type":"journal-article","created":{"date-parts":[[2026,5,12]],"date-time":"2026-05-12T04:24:47Z","timestamp":1778559887000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Lived Experience, Identity, and Perspectives of LGBTQ+ Alzheimer\u2019s and Dementia Caregivers: A Qualitative Analysis from the Rise Registry"],"prefix":"10.1177","author":[{"given":"Max A.","family":"O'Hala","sequence":"first","affiliation":[{"name":"University of Nevada, Las Vegas"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0009-0005-6910-6377","authenticated-orcid":false,"given":"Sarah","family":"Benson","sequence":"additional","affiliation":[{"name":"University of Nevada, Las Vegas"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Brittany","family":"Castro","sequence":"additional","affiliation":[{"name":"University of Nevada, Las Vegas"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Cody","family":"Yamada","sequence":"additional","affiliation":[{"name":"University of Nevada, Las Vegas"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Danielle","family":"Verble","sequence":"additional","affiliation":[{"name":"Emory University"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kari","family":"Hancock","sequence":"additional","affiliation":[{"name":"University of Tennessee"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Krystal R.","family":"Kittle","sequence":"additional","affiliation":[{"name":"University of Massachusetts Amherst"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Whitney","family":"Wharton","sequence":"additional","affiliation":[{"name":"Emory University"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Joel G.","family":"Anderson","sequence":"additional","affiliation":[{"name":"University of Tennessee"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1244-738X","authenticated-orcid":false,"given":"Jason D.","family":"Flatt","sequence":"additional","affiliation":[{"name":"University of Nevada, Las Vegas"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2026,5,11]]},"reference":[{"key":"e_1_3_7_2_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2014.304"},{"key":"e_1_3_7_3_1","doi-asserted-by":"publisher","DOI":"10.15649\/cuidarte.4646"},{"issue":"5","key":"e_1_3_7_4_1","first-page":"e70235","article-title":"Alzheimer\u2019s disease facts and figures","volume":"21","author":"Alzheimer\u2019s Association","year":"2025","unstructured":"Alzheimer\u2019s Association. (2025). Alzheimer\u2019s disease facts and figures. Alzheimer's and Dementia, 21(5), Article e70235. https:\/\/doi.org\/10.1002\/alz.70235","journal-title":"Alzheimer's and Dementia"},{"key":"e_1_3_7_5_1","doi-asserted-by":"publisher","DOI":"10.1177\/08982643211014767"},{"key":"e_1_3_7_6_1","doi-asserted-by":"publisher","DOI":"10.1080\/10538720.2018.1440681"},{"key":"e_1_3_7_7_1","doi-asserted-by":"publisher","DOI":"10.1177\/07334648221079496"},{"key":"e_1_3_7_8_1","doi-asserted-by":"publisher","DOI":"10.1177\/10748407231218000"},{"key":"e_1_3_7_9_1","doi-asserted-by":"publisher","DOI":"10.1093\/geront\/gny109"},{"key":"e_1_3_7_10_1","doi-asserted-by":"publisher","DOI":"10.2105\/AJPH.2012.300750"},{"issue":"5","key":"e_1_3_7_11_1","first-page":"894","article-title":"Social support and caregiving burden among older adult caregivers: Does sexual orientation matter?","volume":"59","author":"Brennan-Ing M.","year":"2019","unstructured":"Brennan-Ing M., Seidel L., Larson B., Karpiak S. E. (2019). Social support and caregiving burden among older adult caregivers: Does sexual orientation matter? The Gerontologist, 59(5), 894\u2013905.","journal-title":"The Gerontologist"},{"key":"e_1_3_7_12_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12877-023-03914-1"},{"issue":"5","key":"e_1_3_7_13_1","first-page":"476","article-title":"Cognitive impairment, chronic conditions, and disparities in assistance among lesbian, gay, and bisexual older adults","volume":"13","author":"Fredriksen-Goldsen K. I.","year":"2017","unstructured":"Fredriksen-Goldsen K. I., Jen S., Bryan A. E., Goldsen J. (2017). Cognitive impairment, chronic conditions, and disparities in assistance among lesbian, gay, and bisexual older adults. Alzheimer's and Dementia, 13(5), 476\u2013485.","journal-title":"Alzheimer's and Dementia"},{"key":"e_1_3_7_14_1","doi-asserted-by":"publisher","DOI":"10.1177\/0733464820952252"},{"key":"e_1_3_7_15_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732305276687"},{"issue":"7","key":"e_1_3_7_16_1","first-page":"1242","article-title":"Effects of dementia caregiving on caregiver health and health care use","volume":"36","author":"Jutkowitz E.","year":"2017","unstructured":"Jutkowitz E., Kuntz K. M., Dowd B., Gaugler J. E., MacLehose R. F. (2017). Effects of dementia caregiving on caregiver health and health care use. Health Affairs, 36(7), 1242\u20131249.","journal-title":"Health Affairs"},{"key":"e_1_3_7_17_1","doi-asserted-by":"publisher","DOI":"10.1002\/alz.70190"},{"key":"e_1_3_7_18_1","doi-asserted-by":"publisher","DOI":"10.1002\/trc2.12477"},{"key":"e_1_3_7_19_1","doi-asserted-by":"publisher","DOI":"10.1002\/alz.70188"},{"issue":"168","key":"e_1_3_7_20_1","first-page":"311","article-title":"Characteristics and challenges of unpaid caregivers of persons with Alzheimer\u2019s and related dementias: A statewide study","volume":"2023","author":"Lee R. E.","year":"2023","unstructured":"Lee R. E., Woo J., Mackenzie A. E. (2023). Characteristics and challenges of unpaid caregivers of persons with Alzheimer\u2019s and related dementias: A statewide study. Journal of Long-Term Care, 2023(168), 311\u2013325. https:\/\/doi.org\/10.31389\/jltc.168","journal-title":"Journal of Long-Term Care"},{"issue":"1959","key":"e_1_3_7_21_1","first-page":"1","article-title":"The unseen burden: A qualitative investigation of Polish LGBTQ+ caregivers\u2019 experiences","volume":"14","author":"Leszko M.","year":"2025","unstructured":"Leszko M. (2025). The unseen burden: A qualitative investigation of Polish LGBTQ+ caregivers\u2019 experiences. Journal of Clinical Medicine, 14(1959), 1\u20139. https:\/\/doi.org\/10.3390\/jcm14061959","journal-title":"Journal of Clinical Medicine"},{"issue":"1","key":"e_1_3_7_22_1","first-page":"e036820","article-title":"Impact of dementia on informal care: A systematic review of family caregivers' perceptions","volume":"10","author":"Lindeza P.","year":"2020","unstructured":"Lindeza P., Rodrigues M., Costa J., Guerreiro M. (2020). Impact of dementia on informal care: A systematic review of family caregivers' perceptions. BMJ Open, 10(1), Article e036820.","journal-title":"BMJ Open"},{"key":"e_1_3_7_23_1","doi-asserted-by":"publisher","DOI":"10.1093\/geront\/gnaa028"},{"key":"e_1_3_7_24_1","first-page":"131","volume-title":"Caregiving across the lifespan: Research practice policy","author":"Montgomery R. J.","year":"2012","unstructured":"Montgomery R. J., Kosloski K. D. (2012). Pathways to a caregiver identity and implications for support services. In: Caregiving across the lifespan: Research practice policy (pp. 131\u2013156): Springer New York."},{"key":"e_1_3_7_25_1","volume-title":"Families caring for an aging America","author":"National Academies of Sciences, Engineering, and Medicine","year":"2016","unstructured":"National Academies of Sciences, Engineering, and Medicine. (2016). Families caring for an aging America. National Academies Press."},{"key":"e_1_3_7_26_1","volume-title":"Snowball sampling. SAGE research methods","author":"Parker C.","year":"2019","unstructured":"Parker C., Scott S., Geddes A. (2019). Snowball sampling. SAGE research methods. Sage Publications. https:\/\/methods.sagepub.com\/foundations\/snowball-sampling"},{"issue":"4","key":"e_1_3_7_27_1","first-page":"401","article-title":"\u201cwe are family\u201d: Stress and resilience among LGBTQ older adults providing informal caregiving","volume":"64","author":"Perone A. K.","year":"2021","unstructured":"Perone A. K., Ingersoll-Dayton B., Watkins-Dukhie K. (2021). \u201cwe are family\u201d: Stress and resilience among LGBTQ older adults providing informal caregiving. Journal of Gerontological Social Work, 64(4), 401\u2013420.","journal-title":"Journal of Gerontological Social Work"},{"key":"e_1_3_7_28_1","doi-asserted-by":"publisher","DOI":"10.1037\/0882-7974.18.2.250"},{"key":"e_1_3_7_29_1","doi-asserted-by":"publisher","DOI":"10.1080\/07317115.2016.1203383"},{"issue":"4","key":"e_1_3_7_30_1","first-page":"1020","article-title":"Barriers and facilitators to inclusive dementia services for LGBTQ+ communities: A qualitative study","volume":"41","author":"Putney J. M.","year":"2022","unstructured":"Putney J. M., Keary S., Hebert C. A., Krinsky L., Halmo R. (2022). Barriers and facilitators to inclusive dementia services for LGBTQ+ communities: A qualitative study. Journal of Applied Gerontology, 41(4), 1020\u20131030.","journal-title":"Journal of Applied Gerontology"},{"key":"e_1_3_7_31_1","doi-asserted-by":"publisher","DOI":"10.1093\/geroni\/igx004.1599"},{"key":"e_1_3_7_32_1","doi-asserted-by":"publisher","DOI":"10.17226\/23606"},{"key":"e_1_3_7_33_1","doi-asserted-by":"publisher","DOI":"10.1097\/01.NAJ.0000336406.45248.4c"},{"key":"e_1_3_7_34_1","doi-asserted-by":"publisher","DOI":"10.3390\/ijerph192316252"},{"key":"e_1_3_7_35_1","doi-asserted-by":"publisher","DOI":"10.3389\/fpubh.2025.1618379"},{"key":"e_1_3_7_36_1","doi-asserted-by":"publisher","DOI":"10.1093\/geront\/32.5.656"},{"key":"e_1_3_7_37_1","first-page":"1","volume-title":"AARP","author":"Skufca L.","year":"2021","unstructured":"Skufca L., Rainville C. (2021). Caregiving out-of-pocket costs study. In: AARP (pp. 1\u201336). AARP. https:\/\/doi.org\/10.26419\/res.00473.001"},{"key":"e_1_3_7_38_1","doi-asserted-by":"publisher","DOI":"10.1002\/alz.064305"},{"key":"e_1_3_7_39_1","doi-asserted-by":"publisher","DOI":"10.1080\/15299716.2015.1025939"}],"container-title":["Research on Aging"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/01640275261451173","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/01640275261451173","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/01640275261451173","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,5,17]],"date-time":"2026-05-17T04:25:00Z","timestamp":1778991900000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/01640275261451173"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,5,11]]},"references-count":38,"alternative-id":["10.1177\/01640275261451173"],"URL":"https:\/\/doi.org\/10.1177\/01640275261451173","relation":{},"ISSN":["0164-0275","1552-7573"],"issn-type":[{"value":"0164-0275","type":"print"},{"value":"1552-7573","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,5,11]]},"article-number":"01640275261451173"}}