Journal of Genetic Counseling

, Volume 18, Issue 3, pp 239–251 | Cite as

Living at Risk: The Sibling’s Perspective of Early-Onset Alzheimer’s Disease

  • Karen E. Wain
  • Wendy R. Uhlmann
  • Judith Heidebrink
  • J. Scott Roberts
Original Research


Early-onset Alzheimer’s disease (EOAD) is an increasingly diagnosed condition and is associated with genetic risk factors. This is one of the first studies exploring the lived experience of siblings of individuals with EOAD. We used structured questionnaires and semi-structured interviews to assess a broad range of siblings’ experiences with and beliefs about EOAD, including knowledge, perceptions of personal risk, level of worry, and effects on life decisions. Participants (n = 24) were predominantly female (62.5%) and middle-aged (mean = 56.8 years; range 37–83). When asked about risk factors, genetics was cited most frequently (62.5%). Several potential means of reducing AD risk were endorsed, with 54% reporting engagement in behaviors for this purpose (e.g., keeping mentally active). Participants ranged widely in their perceived personal risk of AD (range: 0–100; mean = 35.6%), with higher perceived risk associated with worry about AD (p < 0.01). Understanding siblings’ experiences with EOAD can inform how genetic counselors and healthcare professionals work with this population to facilitate risk communication and decision-making about testing and healthcare.


Early-onset Alzheimer’s disease Sibling Risk Lived experience Worry Genetics Decision-making 



We would like to thank the individuals who volunteered to participate in this study for their time and willingness to share their experiences. This study was supported by The Michigan Alzheimer’s Disease Research Center, NIH-NIA P50 AG08671. Funding was provided through the James V. Neel Genetic Counseling Research Fellowship, a University of Michigan Genetic Counseling Research Award, and a Rackham Graduate Student Research Grant. Additional thanks are extended to the Michigan Great Lakes and Greater Michigan Chapters of the Alzheimer’s Association.


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Copyright information

© National Society of Genetic Counselors, Inc. 2009

Authors and Affiliations

  • Karen E. Wain
    • 1
    • 5
  • Wendy R. Uhlmann
    • 2
  • Judith Heidebrink
    • 3
  • J. Scott Roberts
    • 4
  1. 1.Department of Human GeneticsUniversity of MichiganAnn ArborUSA
  2. 2.Division of Molecular Medicine anefefd GeneticsUniversity of MichiganAnn ArborUSA
  3. 3.Department of NeurologyUniversity of MichiganAnn ArborUSA
  4. 4.Department of Health Behavior and Health EducationUniversity of MichiganAnn ArborUSA
  5. 5.Cytogenetics LaboratoryMayo ClinicRochesterUSA

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