title: In their own words: The experience and needs of children in younger-onset Alzheimer's disease and other dementias families.
abstract: Because of the age of persons diagnosed with younger-onset Alzheimer's disease or other dementias (YOD), an important and as yet relatively little explored area of YOD, particularly in the United States, is the impact on young children of having a parent with YOD. After reviewing the small but growing research in this area, we report on findings from 12 in-depth interviews with children and well-parents in families with a parent with YOD on the experience and needs of children having a parent with this diagnosis. Children report disruption in many aspects of their lives: their developmental trajectory, emotional and psychological development, familial and broader social relationships, and financial stability. Despite these significant disruptions, and a dearth of information, resources, and services tailored to their individual and familial needs, these children demonstrate remarkable resilience and self-awareness. We discuss implications for interventions with these families.
authors.affiliation: Silberman School of Social Work, Hunter College, City University of New York, NY, USA.
authors.forename: Caroline Rosenthal
authors.initials: CR
authors.lastname: Gelman
authors.affiliation: Preventable Admissions Care Team (PACT), Mount Sinai Hospital, NY, USA.
authors.forename: Kate
authors.initials: K
authors.lastname: Rhames
mesh_terms: D000293:Adolescent; D000328:Adult; D000544:Alzheimer Disease; D016241:Child of Impaired Parents / Q000523:psychology*; D003704:Dementia; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D010287:Parent-Child Relations; D012944:Social Support; D014481:United States; D055815:Young Adult
keywords: children's experience; developmental disruption; role reversal; tailored services; younger-onset dementia