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Alzheimer’s Disease Development in Adults with Down Syndrome: A Caregiver’s Perspective

Ilacqua, Alexandra Marie
http://rave.ohiolink.edu/etdc/view?acc_num=osu1459951080

Abstract Details

2016, Master of Science, Ohio State University, Genetic Counseling.
Background: Individuals with Down syndrome (DS) experience accelerated aging and a shortened lifespan, increasing their risk of developing early-onset Alzheimer’s disease (AD). The association between DS and AD is complicated by shared genetic characteristics, symptom overlap, and variations in clinical presentation. Research surrounding this topic has predominantly been focused on the neuropathology and genetic basis of this association, with little information in the literature about how this information pertains to caregivers. This study therefore aimed to bridge this information gap by focusing on the psychosocial aspects of AD development in adults with DS by assessing caregiver knowledge, concerns, personal life impacts, and resource utilization. Methods: Caregivers of an adult, 18 years or older, with DS were recruited to complete an anonymous online survey consisting of a maximum of 40 questions. An invitation letter containing the survey link was distributed to potential participants by 4 DS organizations in Ohio and 2 adult DS clinics (Ohio and Illinois). Descriptive statistics, chi-square tests, two sample t-tests, and Pearson correlations were utilized for statistical analysis. Results: Out of the 100 caregivers that responded to the survey, 80% were a parent of the adult with DS. A total of 89 caregivers were caring for an adult with DS only and 11 caregivers were caring for an adult with DS and an AD diagnosis. Only 31.5% of caregivers (DS only) were able to correctly answer all 3 AD knowledge questions. Regarding concern for AD in an adult with DS, caregivers (DS only) gave an average concern rating of 5.3 (moderately concerned), while the other group of caregivers (DS+AD) gave an average concern rating of 6.1 (very concerned). Average caregiver overall impact ratings were identical for both caregiver groups (6.3; very strong impact). The variables used for comparison (Age, functional activity score, health problems, knowing someone with AD) did not correlate to caregiver (DS only) overall concern ratings. However, caregiver impact ratings had a significant negative correlation with the age of the adult with DS (p=0.009). We found that only 29 out of the 89 caregivers of adults with DS only utilized resources that provide support and information regarding this topic. Less than 50% (n=39) of caregivers (DS only) utilized healthcare professions for AD information. The average satisfaction rating of the caregivers’ discussion with a healthcare provider was 4.3 (neither satisfied nor dissatisfied). Conclusions: We found that there are evident misconceptions about AD development in adults with DS present in this caregiver population. Caregivers have significant concerns surrounding AD development in their adult with DS and an AD diagnosis would drastically impact their own personal lives. Information gathered in this study about caregiver concerns, impacts of an AD diagnosis, and caregiver resource utilization allows healthcare professions, such as genetic counselors, to aid in providing anticipatory guidance to caregivers. This study sets the foundation for further research on how genetic counselors, medical professionals, and DS advocacy groups can better serve caregivers of aging adults with DS.
Dawn Allain, MS, LGC (Advisor)
Theodora Jacobson, MS, LGC (Committee Member)
Betsey Benson, PhD (Committee Member)
110 p.
Genetics

Recommended Citations

Citations

  • Ilacqua, A. M. (2016). Alzheimer’s Disease Development in Adults with Down Syndrome: A Caregiver’s Perspective [Master's thesis, Ohio State University]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=osu1459951080

    APA Style (7th edition)

  • Ilacqua, Alexandra. Alzheimer’s Disease Development in Adults with Down Syndrome: A Caregiver’s Perspective. 2016. Ohio State University, Master's thesis. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=osu1459951080.

    MLA Style (8th edition)

  • Ilacqua, Alexandra. "Alzheimer’s Disease Development in Adults with Down Syndrome: A Caregiver’s Perspective." Master's thesis, Ohio State University, 2016. http://rave.ohiolink.edu/etdc/view?acc_num=osu1459951080

    Chicago Manual of Style (17th edition)

osu1459951080
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This open access ETD is published by The Ohio State University and OhioLINK.