1. Exploring the Roles of Siblings of Adults with Down Syndrome

2. Overview For the Next Hour Context of Families of Adults with Down syndrome Current Research Implications Siblings of Adults with Down syndrome Current Research Implications Takeaways

3. CONTEXT OF FAMILIES OF ADULTS WITH DS

4. Individuals with DS Increased agespan from 9 years of age (1920s) to 60 years of age (now)

5. What are the implications of longer lives for individuals with DS? Source: Hodapp, Burke, Finley, & Urbano, R.C. (under review).

6. Implications of Longer Lives 1.Adults with DS show multiple health problems in their late 40s and 50s 2.Parents of adults with DS are older and more likely to have their own health problems 3.Adults with DS are more likely to live with their families (i.e., parents and siblings)

7. 1. Pros of Longer Lives for DS

8. 1. (Cons of) Longer Lives in DS Problem20s30s40s50s Dementia7.7%11.5%19.0%18.6% Visual Impairment23.3%36.2%31.5%59.1% Hearing Impairment14.0%12.8%24.1%37.0% Epilepsy0.0%2.1%16.7%21.7% Major health problem17.4%12.7%27.3%38.5%

9. 1. Age-Related Declines in DS Domain20s30s40s50s Cognition---11.6%23.0%70.0% Adaptive10.0%5.0%25.0%65.0% Unable to write23.1%36.9%53.3%58.8% Unable to read11.2%22.8%40.4%60.8%

10. 2. Pros for Older Families of Adults with DS Down syndrome Advantage Parents are… Less Stress Siblings are… Closer to their brothers and sisters Have better well-being Mothers are… More educated More likely to be married Less likely to divorce More likely to have children

11. 2. Cons for Older Families of Adults with DS <2020s30s40s50-64 Mother deceased 0% 10.5%45.0%58.3% Father deceased0%13.6%11.1%50.0%66.7% Poor ability to provide caregiving 0%9.1%5.3%46.6%85.7%

12. 3. Pros of Living Situations for Adults with DS Options for living situations for adults with DS Living situations can change over time Continually evolving service delivery systems to focus on person-centeredness

13. 3. Cons of Living Situations

14. WHAT ARE THE IMPLICATIONS?

15. Implications of the Longer Lives of Individuals with DS Along with longer lives, individuals with DS also experience greater health problems at earlier ages (40s and 50s) Need services to address health issues Aging parents are likely to experience their own aging-related health problems Need to transition caregiving roles before crisis occurs Need to conduct future planning Yet, individuals with DS (versus without DS) are likely to remain in the family home well into adulthood Need to consider moving options BEFORE crisis occurs

16. SIBLINGS OF INDIVIDUALS WITH DOWN SYNDROME

17. What do we know about siblings of individuals with DS? In childhood, siblings of individuals with ID often have positive effects with any negative effects being negligible In adulthood, siblings of individuals with ID often have close and positive relationships with their brothers and sisters Regardless of the presence of disability, siblings have the longest-lasting familial relationship This relationship includes more formal roles when a disability is present

18. Who is most likely to be a caregiver?

19. The Female Eldest Sibling

20. What do we know about these female eldest siblings (i.e., caregivers)?

21. Female Siblings of Individuals with (vs. Without) Disabilities Female siblings are likely to marry and have children LATER than females without a brother/sister with a disability Female siblings are also LESS likely to divorce than a female without a brother/sister with a disability Males marry, divorce, and have children at the SAME RATE regardless of whether or not they have a brother/sister with a disability Source: Hodapp, Urbano, & Burke, 2010

22. Percentage of Women Who Have Never Married

23. Why have the delay in marriage? 1.The Sib Test 2.Female siblings are less desirable

24. Which sibling, brother/sister with a disability, and family correlates relate to future caregiving?

25. What is caregiving? Future caregiving construct across the following domains: Residential arrangements Financial arrangements Legal guardianship Interacting with service system Providing companionship and emotional support Three levels of responsibility: Primary (2) Shared (1) Someone else (0) Summed variable ranging from 0 to 10

26. Who Anticipates Future Caregiving Roles ? CharacteristicEstimate (SE)Wald X 2 Odds ratio95% CI Gender (female).66 (.16)16.88**1.931.40-2.66 Lone2.08 (.19)121.26**8.045.47-11.71 Distance-.16 (.05)8.21**.85.77-.94 Relationship.07 (.01)29.54**1.071.05-1.09 Parent caregiving ability.13 (.06)3.98*1.141.01-1.28 Source: Burke, Taylor, Urbano, & Hodapp, 2012

27. Gender & Lone-Multiple Sibs

28. Sibling Caregiving Some siblings take on ALL caregiving Increased “caregiving burden”? Feelings of resentment toward other siblings? Lone siblings are “IT” in terms of caregiving Siblings may not be able to accurately predict future caregiving roles

29. Living with Your Sibling with A Disability? Although 60% of siblings anticipate living with their brothers and sisters, only 10% of siblings actually live with their brothers and sisters with disabilities (Freedman et al., 1997)

30. However…

31. Living with Your Sibling with DS “At the end of 10 years, only a a few adults with (non-DS) intellectual disability lived with their adult siblings. After a 20-year period, half of the adults with DS lived with their adult siblings” (Woodman et al., 2014, p. 508)

32. What do adult sibling caregivers report about caregiving?

33. Rewards from Caregiving Bonding with brothers/sisters Spending time with brothers/sisters Providing respite to parents Watching brothers/sisters blossom and grow Source: Burke, Fish, & Lawton, 2015

34. Rewards “My sibling does more now than when our parents were involved. One of the most fulfilling things is just watching my sister blossom.”

35. What challenges do you experience in caregiving? Addressing problem behaviors Navigating adult disability services Uncertain future/lack of future planning Had no help from brothers/sisters without disabilities Spouses? Feelings of guilt

36. Challenges “Fighting for the quality of services is probably the crux of the battle because there may be care available but some care is not really caring. So, constantly fighting for what is really the best is a major challenge.”

37. Challenges “I feel like my parents have lived and breathed it [advocating for services] from Day 1 with my sister. They know it in a way that I will never really know it. So that learning curve is hard for siblings because a lot of times we come in later and it is really difficult to figure out the complicated service system and how to navigate it to get the support that our siblings need.”

38. WHAT ARE THE IMPLICATIONS?

39. Siblings of Adults with DS Siblings are likely to have closer relationships with brothers/sisters with DS and become caregivers Siblings report positive benefits of having brother/sister with DS Siblings generally know that they will become caregivers Might as well talk about it!!!! Might as well conduct future planning! Siblings will enjoy AND struggle with caregiving Siblings will need respite and a large support system Siblings try to set themselves up for a large support system

40. Why Holland Never Resonated with Me Source: http://themighty.com/2015/05/why-welcome-to-holland- never-resonated-with-me/