Exploring the Roles of Siblings of Adults with Down Syndrome

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

CONTEXT OF FAMILIES OF ADULTS WITH DS

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

age (now)

What are the implications of longer lives for individuals with DS?

Source: Hodapp, Burke, Finley, & Urbano, R.C. (under review).

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)

1. Pros of Longer Lives for DS

1. (Cons of) Longer Lives in DS

Problem 20s 30s 40s 50s

Dementia 7.7% 11.5% 19.0% 18.6%

Visual Impairment 23.3% 36.2% 31.5% 59.1%

Hearing Impairment 14.0% 12.8% 24.1% 37.0%

Epilepsy 0.0% 2.1% 16.7% 21.7%

Major health problem 17.4% 12.7% 27.3% 38.5%

1. Age-Related Declines in DSDomain 20s 30s 40s 50s

Cognition --- 11.6% 23.0% 70.0%

Adaptive 10.0% 5.0% 25.0% 65.0%

Unable to write 23.1% 36.9% 53.3% 58.8%

Unable to read 11.2% 22.8% 40.4% 60.8%

2. Pros for Older Families of Adults with DSDown 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

2. Cons for Older Families of Adults with DS

<20 20s 30s 40s 50-64

Mother deceased

0% 0% 10.5% 45.0% 58.3%

Father deceased 0% 13.6% 11.1% 50.0% 66.7%

Poor ability to provide caregiving

0% 9.1% 5.3% 46.6% 85.7%

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

3. Cons of Living Situations

WHAT ARE THE IMPLICATIONS?

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

SIBLINGS OF INDIVIDUALS WITH DOWN SYNDROME

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

Who is most likely to be a caregiver?

The FemaleEldestSibling

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

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

Percentage of Women Who Have Never Married

Why have the delay in marriage?1. The Sib Test2. Female siblings are less desirable

Which sibling, brother/sister with a disability, and family

correlates relate to future caregiving?

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

Who Anticipates Future Caregiving Roles?

Characteristic Estimate (SE) Wald X2 Odds ratio 95% CI

Gender (female) .66 (.16) 16.88** 1.93 1.40-2.66

Lone 2.08 (.19) 121.26** 8.04 5.47-11.71

Distance -.16 (.05) 8.21** .85 .77-.94

Relationship .07 (.01) 29.54** 1.07 1.05-1.09

Parent caregiving ability

.13 (.06) 3.98* 1.14 1.01-1.28

Source: Burke, Taylor, Urbano, & Hodapp, 2012

Gender & Lone-Multiple Sibs

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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

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)

However…

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)

What do adult sibling caregivers report about caregiving?

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

Rewards

“My sibling does more now than when our parents were involved. One of the most

fulfilling things is just watching my sister blossom.”

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

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.”

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.”

WHAT ARE THE IMPLICATIONS?

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

Why Holland Never Resonated with Me

Source: http://themighty.com/2015/05/why-welcome-to-holland-never-resonated-with-me/