Young Children in Early-Onset Alzheimer’s Disease Families: Research Gaps and Emerging Service Needs

Abstract

Early-onset Alzheimer’s disease (EOAD), defined as affecting those under age 65, afflicts between 200,000 and 500,000 people in the US. EOAD tends to be a fast-progressing and aggressive form of AD. There is a beginning body of research exploring EOAD patients’ experience and needs, as well as that of their primary family caregivers, often spouses. However, there has been very little written about the experience and needs of EOAD patients’ children, who because of the early onset, and increasing postponement of childbearing, may be latency-aged or in their early teens. This paper reviews existing and related literature in this area, and illustrates the psychosocial impact on children using the case of a 50 year-old father diagnosed with AD and his 16 year-old daughter and 11 year-old son. The need for increased research and program development to address these children’s needs is discussed.