{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,24]],"date-time":"2026-08-24T06:19:34Z","timestamp":1787552374062,"version":"build-2736575974"},"reference-count":47,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2026,8,24]],"date-time":"2026-08-24T00:00:00Z","timestamp":1787529600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Psychol."],"abstract":"<jats:p>The incidence and prevalence of Alzheimer\u2019s disease and related dementias (ADRDs) significantly impact care recipients, caregivers, and broader society. Most caregivers of ADRD care recipients are family members. These informal caregivers often experience health, emotional, and practical difficulties in their roles as informal caregivers of loved ones with ADRDs. Most family caregivers are adult children or spouses of ADRD care recipients. Complex atypical caregiver roles may include role reversal, unique caregiving dynamics, or multiple roles. For example, these roles may include a minor child taking care of their parent with a young onset condition, someone with an ADRD diagnosis also taking care of their loved one with a similar condition, or a parent taking care of their child with a neurodegenerative condition that would more typically involve the child taking care of the parent. This perspective format manuscript will discuss unique atypical caregiver roles with emphasis on common challenges experienced by this unique caregiver group and potential for resilience. Recommendations will include exploration of opportunities to increase attention to the topic of atypical caregiver roles, improve clinical practice strategies, and promote additional research focused on complex atypical caregivers and the individuals with ADRDs.<\/jats:p>","DOI":"10.3389\/fpsyg.2026.1819388","type":"journal-article","created":{"date-parts":[[2026,8,24]],"date-time":"2026-08-24T05:31:12Z","timestamp":1787549472000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":0,"title":["Complex atypical caregiving: navigating the margins of unique caregiver roles and burdens"],"prefix":"10.3389","volume":"17","author":[{"given":"Krystal D.","family":"Mize","sequence":"first","affiliation":[{"name":"Department of Psychology, Shady Rest Institute on Positive Aging, Florida Gulf Coast University","place":["Fort Myers, FL, United States"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David","family":"Hage","sequence":"additional","affiliation":[{"name":"Department of Social Work, Shady Rest Institute on Positive Aging, Florida Gulf Coast University","place":["Fort Myers, FL, United States"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Solange","family":"Gonzalez","sequence":"additional","affiliation":[{"name":"Department of Psychology, Florida Gulf Coast University","place":["Fort Myers, FL, United States"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brenda","family":"Hage","sequence":"additional","affiliation":[{"name":"School of Nursing, Florida Gulf Coast University","place":["Fort Myers, FL, United States"]}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1965","published-online":{"date-parts":[[2026,8,24]]},"reference":[{"key":"ref1","doi-asserted-by":"publisher","first-page":"251","DOI":"10.1080\/07317115.2015.1032466","article-title":"Older adults: the \u2018panini sandwich\u2019 generation","volume":"38","author":"Abramson","year":"2015","journal-title":"Clin. Gerontol."},{"key":"ref2","doi-asserted-by":"publisher","first-page":"266","DOI":"10.1186\/s12883-022-02772-5","article-title":"The TAS test project: a prospective longitudinal validation of new online motor-cognitive tests to detect preclinical Alzheimer\u2019s disease and estimate 5-year risks of cognitive decline and dementia","volume":"22","author":"Alty","year":"2022","journal-title":"BMC Neurol."},{"key":"ref3","volume-title":"Caregiver Support Groups","year":"2024"},{"key":"ref4","volume-title":"Risk Factors for Cognitive Decline Among Dementia Caregivers: 2021\u20132022 Data from 47 U.S. States","year":""},{"key":"ref5","doi-asserted-by":"publisher","first-page":"e70235","DOI":"10.1002\/alz.70235","article-title":"2025 Alzheimer\u2019s disease facts and figures","volume":"21","year":"","journal-title":"Alzheimers Dement."},{"key":"ref6","volume-title":"Types of Dementia","year":"2026"},{"key":"ref7","volume-title":"Diagnostic and Statistical Manual of Mental Disorders","year":"2013"},{"key":"ref8","doi-asserted-by":"publisher","first-page":"2444","DOI":"10.1002\/alz.13658","article-title":"Investigating alpha-synuclein co-pathology in Alzheimer's disease by means of cerebrospinal fluid alpha-synuclein seed amplification assay","volume":"20","author":"Bellomo","year":"2024","journal-title":"Alzheimers Dement."},{"key":"ref9","doi-asserted-by":"publisher","first-page":"157","DOI":"10.3233\/jad-200064","article-title":"Clinical and bacterial markers of periodontitis and their association with incident all-cause and Alzheimer\u2019s disease dementia in a large national survey","volume":"75","author":"Beydoun","year":"2020","journal-title":"J. Alzheimer Dis"},{"key":"ref10","doi-asserted-by":"publisher","first-page":"e080636","DOI":"10.1136\/bmj2024-080636","article-title":"Time to nursing home admission and death in people with dementia: systematic review and meta-analysis","volume":"388","author":"Br\u00fcck","year":"2025","journal-title":"BMJ"},{"key":"ref11","volume-title":"Guide (Guiding an Improved Dementia Experience) Model","year":"2025"},{"key":"ref12","doi-asserted-by":"publisher","first-page":"310","DOI":"10.1016\/j.jalz.2013.10.005","article-title":"Gender and incidence of dementia in the Framingham heart study from mid-adult life","volume":"11","author":"Chene","year":"2015","journal-title":"Alzheimers Dement."},{"key":"ref13","first-page":"e14549","article-title":"The dementia SomaSignal test (dSST): a plasma proteomic predictor of 20-year dementia risk","volume-title":"Alzheimers Dement.","author":"Duggan","year":"2025"},{"key":"ref14","doi-asserted-by":"publisher","first-page":"772","DOI":"10.1038\/s41591-024-03340-9","article-title":"Lifetime risk and projected burden of dementia","volume":"31","author":"Fang","year":"2025","journal-title":"Nat. Med."},{"key":"ref15","doi-asserted-by":"publisher","first-page":"1274","DOI":"10.1080\/13607863.2026.2612916","article-title":"Prediction of burnout and psychosocial differences among sandwich generation and other informal caregivers","volume":"30","author":"Fenstermacher","year":"2026","journal-title":"Aging Ment. Health"},{"key":"ref16","doi-asserted-by":"publisher","first-page":"882389","DOI":"10.3389\/fpsyg.2022.882389","article-title":"Dyadic interdependence in non-spousal caregiving dyads\u2019 wellbeing: a systematic review","volume":"13","author":"Ferraris","year":"2022","journal-title":"Front. Psychol."},{"key":"ref17","doi-asserted-by":"publisher","first-page":"1757","DOI":"10.1177\/14713012231191958","article-title":"Give me the knowledge, and I can do what I want with it, it\u2019s my right and my choice: triangulated perspectives on the disclosure of young onset dementia","volume":"22","author":"Fox","year":"2023","journal-title":"Dementia"},{"key":"ref18","doi-asserted-by":"publisher","first-page":"339","DOI":"10.1111\/jgs.15194","article-title":"Targeting behavioral symptoms and functional decline in dementia: a randomized clinical trial","volume":"66","author":"Gitlin","year":"2018","journal-title":"J. Am. Geriatr. Soc."},{"key":"ref19","doi-asserted-by":"publisher","first-page":"254","DOI":"10.1080\/13607863.2023.2243585","article-title":"Living with young-onset dementia in the family \u2013 a mixed method study","volume":"28","author":"Helvik","year":"2024","journal-title":"Aging Ment. Health"},{"key":"ref20","doi-asserted-by":"publisher","first-page":"1241638","DOI":"10.3389\/fneur.2023.1241638","article-title":"Clinical, imaging, and biomarker evidence of amyloid-and tau-related neurodegeneration in late-onset epilepsy of unknown etiology","volume":"14","author":"Hickman","year":"2023","journal-title":"Front. Neurol."},{"key":"ref21","doi-asserted-by":"publisher","first-page":"1591","DOI":"10.15585\/mmwr.mm7046a1","article-title":"Prevalence and characteristics of subjective cognitive decline among unpaid caregivers aged \u226545 years \u2013 22 states, 2015\u20132019","volume":"70","author":"Jeffers","year":"2021","journal-title":"Morb. Mortal. Wkly Rep."},{"key":"ref22","doi-asserted-by":"publisher","first-page":"30535","DOI":"10.3402\/qhw.v11.30535","article-title":"Coping efforts and resilience among adult children who grew up with a parent with young-onset dementia: a qualitative follow-up study","volume":"11","author":"Johannessen","year":"2016","journal-title":"Int. J. Qual. Stud. Health Well Being"},{"key":"ref23","doi-asserted-by":"publisher","first-page":"2340","DOI":"10.1111\/jan.13733","article-title":"Perceived burden among spouse, adult child and parent caregivers","volume":"74","author":"Juntunen","year":"2018","journal-title":"J. Adv. Nurs."},{"key":"ref24","doi-asserted-by":"publisher","first-page":"e0265285","DOI":"10.1371\/journal.pone.0265285","article-title":"Study protocol for a phase III randomised controlled trial of SaiLuoTong (SLT) for vascular dementia and Alzheimer\u2019s disease with cerebrovascular disease","volume":"18","author":"Karamacoska","year":"2023","journal-title":"PLoS One"},{"key":"ref25","doi-asserted-by":"publisher","first-page":"1243","DOI":"10.1111\/ggi.13803","article-title":"Impact of loss of independence in basic activities of daily living on caregiver burden in patients with Alzheimer\u2019s disease: a retrospective cohort study","volume":"19","author":"Kawaharada","year":"2019","journal-title":"Geriatr. Gerontol. Int."},{"key":"ref26","doi-asserted-by":"publisher","first-page":"37","DOI":"10.3928\/02793695-20190821-02","article-title":"Caring for people with young onset dementia: an interpretative phenomenological analysis of family caregivers\u2019 experiences","volume":"57","author":"Kilty","year":"2019","journal-title":"J. Psychosoc. Nurs. Ment. Health Serv."},{"key":"ref27","doi-asserted-by":"publisher","first-page":"1097","DOI":"10.1177\/14713012231173013","article-title":"Journey to diagnosis of young-onset dementia: a qualitative study of people with young-onset dementia and their family caregivers in Australia","volume":"22","author":"Lai","year":"2023","journal-title":"Dementia"},{"key":"ref28","doi-asserted-by":"publisher","first-page":"953","DOI":"10.1016\/j.clinthera.2021.05.006","article-title":"Modifiable risk factors in Alzheimer disease and related dementias: a review","volume":"43","author":"Litke","year":"2021","journal-title":"Clin. Ther."},{"key":"ref29","doi-asserted-by":"publisher","first-page":"13496","DOI":"10.18632\/aging.203082","article-title":"MRI-based Alzheimer\u2019s disease-resemblance atrophy index in the detection of preclinical and prodromal Alzheimer\u2019s disease","volume":"13","author":"Liu","year":"2021","journal-title":"Aging"},{"key":"ref30","doi-asserted-by":"publisher","first-page":"180","DOI":"10.1177\/14713012221138145","article-title":"Conceptualizing access to community-based supports from the perspectives of people living with young onset dementia, family members and providers","volume":"22","author":"Novek","year":"2022","journal-title":"Dementia"},{"key":"ref31","doi-asserted-by":"publisher","first-page":"964","DOI":"10.1377\/hlthaff.2019.00087","article-title":"Spousal caregivers are caregiving alone in the last years of life","volume":"38","author":"Ornstein","year":"2019","journal-title":"Health Aff."},{"key":"ref32","doi-asserted-by":"publisher","first-page":"409","DOI":"10.1007\/s41542-018-0027-3","article-title":"Understanding the correlates between care-recipient age and caregiver burden, work-family conflict, job satisfaction, and turnover intentions","volume":"2","author":"Page","year":"2018","journal-title":"Occupat. Health Sci."},{"key":"ref33","doi-asserted-by":"publisher","first-page":"448","DOI":"10.2174\/0126660822303361240903075653","article-title":"Understanding the bidirectional relationship between Alzheimer\u2019s and depression","volume":"21","author":"Pannu","year":"2024","journal-title":"Curr. Psychiatry Rep."},{"key":"ref34","doi-asserted-by":"publisher","first-page":"106","DOI":"10.1177\/00914150221106726","article-title":"Grandchildren as caregivers: adding a new layer to the sandwich generation","volume":"96","author":"Patrick","year":"2023","journal-title":"Int. J. Aging Hum. Dev."},{"key":"ref35","doi-asserted-by":"publisher","first-page":"1163","DOI":"10.1177\/0733464820934683","article-title":"Effectiveness of \u201creducing disability in Alzheimer\u2019s disease\u201d among dyads with moderate dementia","volume":"40","author":"Perales-Puchalt","year":"2020","journal-title":"J. Appl. Gerontol."},{"key":"ref36","doi-asserted-by":"publisher","first-page":"185","DOI":"10.1177\/1471301211398989","article-title":"Existential loss as a determinant to well-being in the dementia caregiving dyad: a conceptual model","volume":"10","author":"Piiparinen","year":"2011","journal-title":"Dementia"},{"key":"ref37","doi-asserted-by":"publisher","first-page":"266","DOI":"10.1177\/13872877251393589","article-title":"Against nature: the experiences of parents caring for an adult child with young-onset dementia","volume":"109","author":"Rokach","year":"2026","journal-title":"J. Alzheimer\u2019s Dis"},{"key":"ref38","doi-asserted-by":"publisher","first-page":"307","DOI":"10.1177\/00914150241235088","article-title":"Intergenerational caregiving patterns and cognitive health among the sandwich generation within four-generation families","volume":"99","author":"Shi","year":"2024","journal-title":"Int. J. Aging Hum. Dev."},{"key":"ref39","doi-asserted-by":"publisher","first-page":"182","DOI":"10.21203\/rs.3.rs-6153769\/v1","article-title":"Prevalence of Alzheimer\u2019s disease pathology in the community","volume":"650","author":"Sunde","year":"2026","journal-title":"Nature"},{"key":"ref40","doi-asserted-by":"publisher","first-page":"e70120","DOI":"10.1002\/dad2.70120","article-title":"Referral patterns and diagnostic outcomes in an outpatient Australian tertiary cognitive neurology service: 2009\u20132019","volume":"17","author":"Sutherland","year":"2025","journal-title":"Alzheimer Dement."},{"key":"ref41","doi-asserted-by":"publisher","first-page":"1398","DOI":"10.1177\/10497323241244986","article-title":"Navigating both roles: a photovoice exploration of the young adult balancing daughterhood and caregiving for a mother with young-onset dementia","volume":"34","author":"Tang","year":"2024","journal-title":"Qual. Health Res."},{"key":"ref42","doi-asserted-by":"publisher","first-page":"637","DOI":"10.1016\/j.cger.2018.06.009","article-title":"Behavioral problems and dementia","volume":"34","author":"Volicer","year":"2018","journal-title":"Clin. Geriatr. Med."},{"key":"ref43","doi-asserted-by":"publisher","first-page":"107585","DOI":"10.1016\/j.pec.2022.107585","article-title":"Young-onset dementia: a systematic review of the psychological and social impact on relatives","volume":"107","author":"Wiggins","year":"2023","journal-title":"Patient Educ. Couns."},{"key":"ref44","doi-asserted-by":"publisher","first-page":"750","DOI":"10.1212\/con.0000000000001124","article-title":"Vascular cognitive impairment and dementia","volume":"28","author":"Wong","year":"2022","journal-title":"Continuum"},{"key":"ref45","doi-asserted-by":"publisher","DOI":"10.1002\/adma.202412843","article-title":"Polymer-formulated nerve growth factor shows effective therapeutic efficacy for cerebral microinfarcts","volume":"37","author":"Yan","year":"2024","journal-title":"Adv. Mater."},{"key":"ref46","doi-asserted-by":"publisher","first-page":"6611","DOI":"10.3390\/jcm14186611","article-title":"Vascular dementia: from pathophysiology to therapeutic frontiers","volume":"14","author":"Yang","year":"2025","journal-title":"J. Clin. Med."},{"key":"ref47","doi-asserted-by":"publisher","first-page":"e2139765","DOI":"10.1001\/jamanetworkoplopbbbbbbbbbben.2021.39765","article-title":"Exploration of cognitive outcomes and risk factors for cognitive decline shared by couples","volume":"4","author":"Yang","year":"2021","journal-title":"JAMA Netw. Open"}],"container-title":["Frontiers in Psychology"],"original-title":[],"link":[{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fpsyg.2026.1819388\/full","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,8,24]],"date-time":"2026-08-24T05:31:14Z","timestamp":1787549474000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fpsyg.2026.1819388\/full"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,8,24]]},"references-count":47,"alternative-id":["10.3389\/fpsyg.2026.1819388"],"URL":"https:\/\/doi.org\/10.3389\/fpsyg.2026.1819388","relation":{},"ISSN":["1664-1078"],"issn-type":[{"value":"1664-1078","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,8,24]]},"article-number":"1819388"}}