Aging Together: Sibling Carers of Adults WithIntellectual and Developmental DisabilitiesCaitlin E. Coyle*, John Kramer†, and Jan E. Mutchler‡

*Department of Health Policy & Management, Yale School of Public Health, New Haven, CT, †Institute for Community Inclusion,University of Massachusetts Boston, Boston, MA, and ‡Gerontology Department, University of Massachusetts Boston, Boston, MA,USA

Abstract Family care provision is the norm for adults with intellectual and developmental disabilities (I/DD), even as they and theirsupport networks grow older. As families age together, the role of primary carer frequently transitions from the parent to a sibling, asaging parents die or become too frail to provide continued support. The purpose of this paper is to explore the transition in care fromthe perspective of a sibling who has replaced parents as the primary carer for an individual aging with I/DD. Data are drawn fromsemi-structured, in-depth interviews with a sample of adults over age 40, living in the United States, and caring for a sibling with I/DD(n = 15). Data were analyzed using a constant comparative qualitative approach. Results reveal themes impacting the adjustment to therole of primary carer, the extent to which aging transformed the content of care needs, the importance of planning, and the availabilityof supplementary support. Findings from this study underscore the need to develop long-term services and supports as well as educa-tional resources that accommodate this population of carers as they age together with their sibling with I/DD.

Keywords: aging, aging families, caregiving, intellectual disabilities, siblings

INTRODUCTION

Substantial changes in the contours of the life course haveoccurred in recent years for individuals aging with intellectualdisability as well as for their families. In the 1930s, individualswith genetic disabilities had a mean age at death of 18.5 years, asmany children born with Down syndrome, or other related con-ditions impacting their intellectual functioning, never reachedadulthood (Carter & Jancar, 1983). However, human longevityhas expanded dramatically, and the life expectancy among indi-viduals with intellectual disability is now closer to that of thegeneral population (Bittles et al., 2002; Patja, Ivanainen, Vesala,Oksanen, & Ruoppila, 2000).

Although many adults with both intellectual and develop-mental disabilities (I/DD) in the United States live indepen-dently in their own homes, and others live in group settings, themajority of adults with I/DD live with a family member(Braddock et al., 2005; Heller et al., 2008). Approximately 75%of adults with I/DD live at home with family carers, usuallyparents, and 25% of these carers are over 60 years of age(Fujiura, 1998; 2001; 2003). It stands to reason that as they enterlater life, many adults with I/DD will continue to rely on familycarers and that aging siblings will increasingly be drawn into acare providing role.

Although it is not known precisely how many people withdisabilities have at least one sibling, family care providing

remains a significant source of support for adults with I/DD.However, there is evidence that among older adults with I/DD,the percentage living with family carers decreases significantlywith age (Stancliffe et al., 2012). This shift can largely beexplained by the fact that as their parents age, become frail, ordie, individuals with a disability may experience changes totheir usual support systems and may have to rely on siblings orother informal or formal supports to meet the challenges ofdaily life.

This paper examines the transition in care and support fromthe perspective of a sibling who has replaced parents as theprimary carer for an individual aging with I/DD. Transitionsinto the care providing role can be complex and challenging forany family member because they not only include new responsi-bilities with regard to the care recipient, but they also requiremanagement of the impact that the new care providing role hason other aspects of the carers life. For siblings who providesupport for an adult with I/DD, these transitions can be particu-larly challenging because they have few models available tofollow. Outside of the care provided to minor children, the mostfamiliar family care providing scenarios in adulthood includeadult children caring for an aging parent, or a husband or wifecaring for a spouse or partner (Silverstein & Giarrusso, 2010).The ways in which caring for a sibling may be similar to, or dif-ferent from, caring for a parent or spouse are relatively unex-plored in the gerontological or disability literatures. Althoughsome past research has demonstrated that caring for a child withI/DD can be stressful for the parent caregiver (Pruchno &Meeks, 2004), much less is known about how this experiencechanges as the family ages. Having care providing models isimportant because they offer guidance to sibling carers but also

Received March 4, 2013; accepted August 26, 2014Correspondence: Caitlin E. Coyle, Yale University, Yale School of PublicHealth—Department of Health Policy and Management, 47 College St.,Suite 104, New Haven, CT 06510, USA. E-mail: caitlin.coyle@yale.edu

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Journal of Policy and Practice in Intellectual DisabilitiesVolume 11 Number 4 pp 302–312 December 2014

doi: 10.1111/jppi.12094

© 2015 International Association for the Scientific Study of Intellectual and Developmental Disabilities and Wiley Periodicals, Inc.

aid in identifying points where added support may facilitate suc-cessful aging for both the carer and the individual with I/DD.The purpose of this study is to explore how siblings transitionand adjust to becoming the primary carer for the brother orsister with I/DD.

A life-course perspective provides a useful framework forexamining the intersection of aging and I/DD. Focusing ondynamic processes between people and their social worlds(Elder, 1995; George, 1993), the life-course approach provides away of examining the interplay of life stages and transitions inrelation to life outcomes. These shifts and transitions, sometimesknown as “turning points” (Seltzer, Greenberg, Floyd, Pettee, &Hong, 2001), from previous states to future states are integralevents that influence life-course trajectories. These turningpoints require an adjustment process, by which new roles, condi-tions, and life experiences are integrated with other elements ofone’s life.

The “linked lives” principle central to the life-course paradigmhighlights the fact that events experienced by one member of afamily may have implications for the life course of another familymember (Hogan, 2012). For example, siblings share the experi-ence of a parent’s death, adjusting to the experience individuallyand as a family. For sibling groups that include an adult memberwith I/DD, a parent’s aging may also involve a renegotiation ofroles within the family in an effort to secure ongoing support andcare for the family member with disability. The life-course per-spective also provides a useful framework for examining how sib-lings interpret the choices their parents made in the past and howthey synthesize that understanding to make their own decisionsregarding the care of the individual with I/DD for the future.

As they age, people with I/DD seek to maintain physical andmental health, be actively engaged with life through social rela-tionships, and participate meaningfully in their communities(Heller & Arnold, 2010). However, adults with I/DD are often vul-nerable to conditions that will make their old age more difficult.They face the normal challenges of aging, including heightenedrisk of hearing and vision loss as well as sensory motor functiondecline and frailty, at an accelerated rate compared with individu-als without I/DD (Hayes, Wolfe, Trujillo, & Burkell, 2010). Manyindividuals in this population also have higher rates of obesity,sedentary behaviors, and poorer nutrition compared with thegeneral population (Yamaki, 2005). In addition, dementia isthought to occur more commonly for some adults within thispopulation (Janicki & Dalton, 1999). Some research indicates thatmany adults with Down syndrome will develop Alzheimer’sdisease, which is the most common cause of dementia (Dalton,Seltzer, Adlin, & Wisniewski, 1993). In addition, early stages ofdementia can be more difficult to diagnose among those withI/DD (Aylward, Burt, Thorpe, & Dalton, 1997; Strydom et al.,2009). Currently, there are large gaps in our knowledge regardinghow the aging experiences of people with I/DD, including theirevolving health risks, intersect with age-related changes in theirnetworks, and their shifting support needs.

The sibling relationship is often the longest relationshippeople experience across their lifetimes (Goetting, 1986) andmay remain the most durable relationship into mid- and laterlife (Connidis & Campbell, 1995). By sharing a generationalposition within a family, siblings move through the life course inconjunction with one another (Walker, Allen, & Connidis,

2005). Many significant family events, such as the death of aparent, are shared by siblings and can be disruptive to the familysystem as a whole (Dilworth-Anderson, Burton, & Klein, 2005).Although all families share these experiences, sibling relation-ships are likely to feature a different dynamic when a familyincludes an individual with I/DD or other life-long disability.

In childhood, sibling relationships are highly variable, basedin part on severity of the disability, behavioral issues, and fea-tures of the family climate (Stoneman, 2005). Typically, siblingrelationships are asymmetrical from childhood when a child hasan intellectual disability. Even younger siblings without disabili-ties may take on dominant roles in childhood, including ele-ments of care providing (Meyer, 1997; Stoneman, 2005), whichmay condition the sibling relationship throughout the lifecourse.

As adults, siblings of persons with I/DD who have frequentcontact with their brother or sister with disability often reportclose and supportive relationships (Seltzer, Greenberg,Orsmond, & Lounds, 2005). Some siblings are deeply involved insupport for and care of a sibling with a disability (Pruchno,Patrick, & Burant, 1996), yet like other forms of care work, thissupport is highly variable across siblings. Evidence suggests thatsisters tend to provide more support, as do siblings who are geo-graphically proximate and those who do not have minor chil-dren at home (Greenberg, Seltzer, Orsmond, & Krauss, 1999;Orsmond & Seltzer, 2000).

Most parents prefer and expect that a sibling or another familymember will assume these responsibilities once the parents are nolonger able to provide care (Freedman, Krauss, & Seltzer, 1997;Heller & Factor, 1991; Pruchno et al., 1996). However, theseassumptions are often made in the absence of formal arrange-ments, and sometimes without in-depth discussion (Freedmanet al., 1997; Heller & Factor, 1991). Indeed, the few empiricalexaminations of expectations or plans on the part of siblingssuggest that 44% (Griffiths & Unger, 1994) to 60% (Greenberget al., 1999) expect to assume primary care responsibility.

Despite the life-long importance of siblings in the supportnetworks of adults aging with I/DD, scholarly research on thetransition in care from parent to adult sibling is limited. Forsibling caregivers, life-course transitions associated with theirown aging may be complicated by the obligations associatedwith securing support for the sibling with I/DD. For example,they may be caring for their sibling with I/DD while also caringfor an aging parent (Heller et al., 2008). These challenges areamplified when the formal support system for those with I/DDis not well equipped to deal with late-life issues, such as retire-ment, the onset of chronic disease, or the growing need for per-sonal assistance associated with age-related functional decline(Heller et al., 2008). In this paper, we examine the process bywhich primary care of an adult with I/DD transitions fromparents to siblings, and how siblings adjust to this new role.

METHODS

Sample

Data for this study are from 15 in-depth, semi-structuredinterviews with adult siblings who identified as being over age 40

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and serving as a carer of at least one person with I/DD. Familieswere recruited from a national online list that is maintained by asibling support project in the United States. Participants self-selected into the sample by contacting the senior investigator bye-mail over a 4-week period in October 2011. Interviews wereconducted primarily via telephone and were audio-recorded.Based on the life-course perspective, topics covered in the inter-view included sibling relationships in childhood, transition ofcare from parent to sibling, support provided by parents andother siblings, planning for the future, and the aging of thefamily. Additional information on demographic characteristicsand living arrangements was also obtained. Subjects were com-pensated for their time and participation.

As seen in Table 1, the average age of sibling respondents was57, with a range in age of 43–67 years. The sample was predomi-nately female (93%) and most identified as being of Europeanheritage (93%). Participants resided in 10 different states, 80% ofthe sample was married or partnered, and 40% reported havingone or more children. Sixty-seven percent of the sample was cur-rently working for pay. Although geographically dispersed, oursample is homogeneous in many respects, including the fact thatall subjects had worked as professionals in the field of disabilitiesservices.

Also included in Table 1 is a description of the family groupand of the adult with I/DD. The average number of siblings in afamily was 4.9 (ranging from 2 to 9), and 60% of the samplereported receiving some assistance from their other siblings incaring for the individual with I/DD. Most families had no livingparents (80%). The average age of individuals with I/DD was 55

years (ranging from 46 to 67), and 60% of them were female.About 60% of the siblings being cared for had Down syndrome,20% had some other type of I/DD, 13% had autism, and 7% hadcerebral palsy (see Table 1).

Among the largest group of individuals with I/DD, thosewith Down syndrome, seven of the nine (78%) had a diagnosisof Alzheimer’s disease or some other type of dementia. In thissample, dementia was not always explicitly mentioned by carersof adults with other type of I/DD. This is not surprising, givenwhat is known about the risk of Alzheimer’s disease amongpeople with Down syndrome (Zigman et al., 2004). About 40%of the sample resided at home, 40% in a nursing home, andabout 20% in a group residence. Over half (53%) of the indi-viduals with I/DD were older than their sibling caregivers.

Design and Procedure

The purpose of this study was to explore the transition ofcare to sibling carers of people with disabilities after theirparents are no longer providing primary support to the indi-vidual with a disability. To accomplish this, we used open-endedinterviews, as they are more likely to be equally directed by theinterviewer and interviewee (Taylor & Bogdan, 1998). This isimportant because investigation of sibling caregivers of adultsaging with I/DD is a unique set of family care providing circum-stances and thereby also a relatively unexplored area of researchand open-ended interviews allow the interviewee to respondfrom their own experiences and provide context and explanationto their responses. This method of data collection allows for anunderstanding of the reality faced by these sibling caregivers andlays a rich foundation of data for future research.

We conducted the interviews mainly via telephone. Interviewquestions asked about the sibling carer’s childhood with theperson with I/DD, how they came to be the carer of their sibling,what the adjustment was like for them, and how aging hasimpacted the provision of care. Specific interview questionsincluded, “What was your relationship with your sibling likegrowing up?” “What was the adjustment to the care-providing rolelike for you?” and “How has your life been impacted by this adjust-ment?” This was a cross-sectional design that was meant touncover and develop themes around aging issues for siblingcarers and people with I/DD.

ANALYSIS

All of the interviews were transcribed into text documentsand imported into NVivo 9 software (QSR International, Mel-bourne, Australia). An initial list of codes was developed amongthe investigators to capture a broad set of themes. For example,we coded “Aging” as a broad theme across all the transcripts.When the first round of coding was complete, secondary codingwas used to refine the analysis by filling in details to the primarycoding round. For example, in this secondary coding process, wecoded detailed subcodes within the primary code of “Aging,”such as “Aging of Parents,” “Onset of Aging Needs for Personwith I/DD,” and “Aging Services.” Two members of the researchteam did this coding independently.

TABLE 1Descriptive results

M %

Sibling CarerAge 57Female 93Non-Hispanic European heritage 93Married/partnered 80Has own children 40Number of siblings 4.9Older than I/DD sibling 47No living parents 80Working for pay 67Other sibling support 60

Sibling with I/DDAge 55Female 60Non-Hispanic white 93Community dwelling 60Down syndrome 60Other I/DD 20Autism 13Cerebral palsy 7

n = 15

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To ensure robustness of the coding, we engaged in a “con-stant comparative” approach, which included periodic commu-nication about coding to ensure interrater agreement andconceptual consistency (Glaser, 1965). This constant compara-tive approach is considered a systematic way of analyzing quali-tative interview data and places emphasis on the frequent andpurposive comparison between researchers and across interviewsto develop themes (Boeije, 2002) and not the calculation ofinterrater reliability estimates. In addition, analytic memos wereproduced at each level of coding to help with the development ofindividual themes. Using the life-course perspective, patterns ofhow care transitioned from parent to sibling emerged, and theissues affecting the adjustment of the sibling carer to the newrole were coded as common themes. The type of care providingtransitions that occurred and the themes affecting this adjust-ment were compared across cases.

RESULTS

Findings from the qualitative interviews highlight a uniqueset of challenges for sibling carers of adults with I/DD associatedwith the transition of care from the parent to the sibling carer.Analysis of the interviews suggests three key themes that charac-terize the adjustment of the sibling carer as they transition to thenew role. Each of these key themes was supported by over 50%of the siblings in this sample.

First, we found that the aging process permeated the careproviding role, requiring ongoing modification of that role as aresult of the aging of the adult with I/DD and their familysupport system. For sibling carers of adults with I/DD, as forother family carers, the “caregiving career” (Pavalko &Woodbury, 2000) involves accommodation and revision of rolesover time. Consistent with the life-course perspective and itsinsights about “linked lives,” adjustment among carers is shapednot only by their own aging process, but also by the aging of thesibling with I/DD, as well as the aging of parents and otherfamily network members.

A second key theme is that planning shapes the adjustmentto the carer role. This is true for parents leading up to the caretransition and for the carer as they negotiate the transition andmakes plans for the aging and that of their sibling with I/DD.

A third key theme is that the support systems surroundingthe sibling dyad contribute to successful adjustment to care pro-viding. This includes support from other family members as wellas support from service providers during the transition of careand beyond.

Aging Process Permeates the Sibling Carer Role

In addition to adjusting to a new role, the sibling carer mustrespond to aging-related changes in the individual with I/DD, tothe aging of parents and others in the kin network, and to ele-ments of her own aging process. The sibling carer role oftenescalates at midlife or later, and changes are typically triggered bya parent’s failing health or death. As a result, the new carer fre-quently balances multiple care providing responsibilities, not

only for a sibling but also for a parent. Inadequate supportfrom other family members or aging and disability service struc-tures may exacerbate an already challenging adjustment to thecarer role.

The onset of dementia creates a new adjustment process For ourparticipants, perhaps the most significant age-related changeshaping the care providing role was the onset of dementia, spe-cifically of the Alzheimer’s type, which was experienced by sevenof the siblings with I/DD. These seven siblings were among thenine with a diagnosis of Down syndrome, which is not surpris-ing given the emerging evidence that risk for Alzheimer’s diseaseincreases exponentially among middle-aged adults with Downsyndrome (Zigman et al., 2004).

A diagnosis of dementia or Alzheimer’s disease was difficultto obtain and often neglected until signs and symptoms wereundeniable. Denise (all names have been changed to protect theconfidentiality of research participants and their families)recalled how she detected a subtle change in her sister, saying, “Inoticed today when we were talking that there were certainthings . . . she’s kind of slipping in the short-term memory.” Shecontinued, “I was asking her about what she did yesterday after-noon and she didn’t remember at all . . . day to day you sort ofnotice certain things.” Susan, another carer, said, “[My sister]moved into this senior home . . . I saw on the medical recordsthat her general practitioners had made a comment that [shewas] showing early signs of dementia. And I was shocked. Howcome nobody told me about that?”

The discovery of dementia creates an additional set ofresponsibilities for the sibling carer that are often unexpected.Extended quotes from sibling carers on the challenges associatedwith dementia onset, as well as on other key issues relating to theaging process and identified through our analysis are included inTable 2.

Age-related changes affect the ability of siblings with I/DD to age inplace Developing dementia or other age-related conditions fre-quently required rethinking residential and support arrange-ments for the individual with I/DD (see Table 2). For example,most individuals with I/DD had lived in the same residence formany years prior to coming under the care of their brother orsister. These residential moves were described as stressful andemotionally painful not only for the person with I/DD, but alsofor the sibling caregiver.

Sibling carers spoke about the “balancing act” between tryingto maintain what was best for their siblings’ well-being and thefamily’s ability to respond their needs. Many mentioned the dif-ficulty in maintaining their siblings’ ability to age in place; theirstories illustrate the complexities associated with aging amongpeople with I/DD. Carla said the moment of residential transi-tion for her brother happened sooner than expected: “I thinkthat it’s because of aging that we couldn’t take care of himanymore . . . taking care of our own needs and families wasbecoming more difficult . . . It was just getting too much emo-tionally for us to take care of him and do what we needed to do.”She chose to put her brother in a medical group home.

For many sibling carers, age-related changes such as the onsetof dementia or other conditions (i.e., falls, behavior changes, andmobility challenges) triggered a disruption in existing supports.

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For example, Maria noted that the onset of dementia in her sisterrequired a greater time commitment on her part, and a rethinkingof familiar approaches to her care: “Just there’s more . . . things todeal with. Before it was kind of like automatic pilot.” Even amongsiblings who had reached a sense of “normalcy” with their newcare providing role, the onset of age-related declines spurred anentirely new transition with unanticipated significance. They wereno longer caring for their sibling with a disability but for theiraging sibling with a disability.

Aging of the family network affects carer adjustment Age-relateddeclines for the sibling with I/DD often compounded ongoing orrecent declines elsewhere in the family network. For these fami-lies, the sibling care providing role came to include helping theadult with I/DD understand and cope with the decline of aparent. According to these sibling carers, individuals with I/DD

were strongly affected by the death or functional decline of theirparents, even when they did not fully understand the situationor severity of the decline. Carers’ recollection of this experiencesuggested that observing the decline of one’s parents was a for-mative experience for siblings irrespective of whether they had adisability.

Sibling carers also cited concern about their own aging andhow that may shape their ability to provide support into the future.For example, Barbara commented, “. . . I’m already noticing a littlebit that as I get older I have less energy than I used to. [My sisterstill] has pretty good energy but . . . I start thinking how am I goingto handle all this stuff as I have less ‘oomph’ in my own life?”Sibling carers enter a new stage of their care providing relationship,in which they realize that they, too, are aging and must plan fortheir own mortality, spurring another adjustment that mirrors theadjustment associated with losing their parents.

TABLE 2Aging processes permeate the sibling carer role

Commentary

Onset ofdementia

“That’s why I left my job. My school day was interrupted with phone calls about medical issues. I was going . . .every two weeks probably and . . . would . . . stay for three, or four or five days. . . . We were then faced with allof the kinds of challenges that families face with AD. [Alzheimer’s] became the primary, pressing issue.”

“The onset of her dementia . . . was a complete and total shock to me. One of the first things that happened wasthat she lost her language abilities. I thought she was just in shock because she was in her group home for 16years and she had to move to the senior home. My initial thought was this is her emotions from changinghouses all at once, she’s just clammed up. But then things just progressed, rather than getting better—becauseI thought they would get better—they just got increasingly worse. And I felt very lost. I just felt like I wasdoing a bad job . . .”

Aging in place “The [I/DD agency] did make a lot of efforts to add staff and modify things so that he could stay there . . . Ithink there was some concern when [my brother] was unable to get himself out of the house that he livedin—because they were all very independent in this house including [my brother] up until that point.”

“As they get older and I’m getting older you think of somebody who needs to be lifted or physically really needs[more support]. [Right now] I don’t have to do that kind of stuff for them. Physically they’re able to take careof themselves, but [what] if they get to a point where they can’t? Well I’m not going to be able to lift up my200-pound brother.”

“It’s becoming . . . harder to maintain [people with I/DD] in situations where [they] may have lived for the last20–25 years because of [environmental] things, [for example] my brother’s group home . . . [is] two stories.Bedrooms are on the top floor . . . [The I/DD agency] always had to do 24/7 staffing but now a lot of the men[there] need one-on-one staffing. So you have a whole lot of staff that have to be there in a very small livingspace.”

Aging of familynetwork

“Mom . . . [went] from the primary carer of Wendy [sister with I/DD] to someone who couldn’t rememberthings, to someone who was bedridden. Wendy saw all of that. . . . Their bedrooms were on the same floor . . .[We] lived in this small house at the time when I cared for my Mom so Wendy saw her every day. She had topass her room to get to her room so she saw [Mom].”

“When my mother was diagnosed, [she became] very concerned about my sister. . . . [We] held the charadetogether for many, many months because my mother did not want my sister to know what her situation wasat all. . . . There was just no way could my mom do as much as she wanted to. . . . My sister looks at me andshe goes, ‘She’s not getting better, is she?’ And I just looked at her and I said, ‘No.’ I said, ‘I’m sorry, she’snot.’ ”

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Planning Shapes Adjustment to the Carer Role

Transitions into the carer role occurred primarily in midlifeor later, often triggered by the failing health and/or death of aparent. In some cases, recruitment to the carer role unfoldedover time; for example, Barbara described in her family “sharing(of care) got even more complicated as people got older and gotmarried and had children so it really narrowed it down to 2–3 ofus doing it.” Our analysis suggests also that planning for thefuture is an ongoing process for these siblings. Indeed, planningfor their own aging, the aging of the individual with I/DD, andpotential needs for additional late-life transitions in care provid-ing responsibilities constitutes a complex task for these siblingcarers. Extended quotes from sibling carers on the ways planningshaped their adjustment to care providing are included inTable 3.

Negotiating the transition is impacted by parents’ plan-ning Although many participants expected to become carers,adequate plans for how the transition would occur were per-ceived as absent. Failure to engage in estate planning is notuncommon among older Americans (Goetting & Martin, 2001),so it is not surprising that many parents decline to formalizefinancial and guardianship plans for adult children with I/DD(Heller, 2000).

In some cases, the expectation of taking on the role of carerfor their sibling with I/DD was assumed but never verbalized.For example, Maria stated that “as my parents got a little bitolder and then they were living in Florida half the year, [thetransition] just kind of happened. I don’t know that there wasever a conversation.”

Similarly, as stated by Alice, “as far as the planning [Mom]was not real forthcoming with what she wanted . . . we weren’t

informed . . . I just don’t think she knew either . . .” For thisfamily, the mother had neither planned sufficiently nor articu-lated what plans may have been in place. Another sister, Mary,indicated that planning did occur but was never communicated,stating, “My mom’s planning for my sister basically went only asfar as . . . I think what she did is gave an extra $20,000 of herestate to Kristen [sibling with I/DD] that the rest of us didn’tget.” These carers were not consulted or informed about thefinancial plans on behalf of their siblings with I/DD.

Carers whose parents had engaged in planning and commu-nicated their expectations effectively were better prepared toassume the carer role; in turn, these siblings experienced a lessstressful transition. This is consistent with a recent study ofsibling carers that found that siblings who planned to assumethe role of carer for the person with I/DD had parents who werebetter equipped to care for their brother or sister with I/DD(Burke, Taylor, Urbano, & Hodapp, 2012), and plans were com-municated before a crisis situation. For example, Dorothy said,“I’ve probably known since junior high school or high schoolthat there were guardianship papers. My parents were clear thatwe will never have the financial burden. I never had to worryabout a financial side of it.” It was clear that her parents had laidthe groundwork for financial support early, as part of theiroverall planning process.

Maria recalled a similar experience, saying, “My dad wouldkeep me involved in [the] trusts that they had set up for her . . .and I said, ‘You know, I probably should be . . . successor guard-ian.’” She continued, “[My dad] looked into [guardianshipoptions] and said, ‘Well why we don’t just make you the guardianinstead of the successor guardian, because you don’t want to haveto pay a lawyer twice.’” This level of planning represents anengagement from siblings coupled with responsiveness fromparents about their collective concerns. Talking about options

TABLE 3Planning shapes adjustment to the carer role

Commentary

Planning byparents

“I talked to my father one time about why he hadn’t done anything, made a will or nailed anything down. Hesaid, ‘Every time I sit down to do it,’ he said, ‘you just can’t imagine how hard it is to put that in writing,’ hesaid. ‘First of all I’m talking about me dying and I don’t like that and then I’m talking about putting that onone of you people and it’s a lot.’ ”

“We had a family meeting with Greg (sibling with I/DD) and then Greg left and it came out that my sister toldall of us when we were together that she always planned for him to come and live with her. . . . After we hadall of this discussion [as a family, my sister decided] . . . she couldn’t separate Greg from me. . . . Sheunderstood that it was more important for him and me . . . to stay together than to move him a distance thatwould make us so far apart.”

Planning bysibling carers

“I’m sure he’ll live for a long time . . . [I’m] worrying about making sure that I’m alive too. I’m beginning tothink about what we should plan for him, you know, in 10–15 years down the line—where he should live.Should I work on a retirement home? Could we afford that? Would my nephews, my sister’s children step in?”

“. . . Every year depends on the funds from [personal care services] and from The Arc [the world’s largestcommunity-based organization of and for people with I/DD] . . . I get concerned [about] somethinghappen[ing] to me because I’m in charge of everything and I run it all. And I know that my brothers willcontinue to help . . . but they don’t know how to coordinate it.”

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ahead of time allowed parents and siblings to arrive at a planningsolution that was mutually beneficial. Planning and com-munication activities involving the entire family contributed to asuccessful transition into the care providing role for thesesiblings.

Despite planning efforts, the transition into care providingwas not always gradual or predictable, because life circumstancescan change quickly before such planning is complete. Forexample, Mary recalls, “. . . [M]y mom developed some demen-tia. Kristen [sister with I/DD] called me one night and said;‘Mommy got lost today’ . . . I basically gave up my apartment inNew York and moved home.” Susan recalled a similar situation,“[My sister moving in with me] was absolutely a snap decision. . . My mother’s plan was always that my sister would stay in[Michigan] . . . that she would go into the system and would gointo a group home [there].” While they had planned this, theyhad not planned for her mother’s Alzheimer’s. Susan continued,“I was [in Michigan] during my mother’s . . . illness and death, Ijust couldn’t leave my sister . . . I called up my husband and said,‘Is it OK if I bring her?’ He said, ‘Yeah.’ That’s how I became hercaregiver.” These cases suggest that events do not always go theway they were planned.

Planning continues as a key component of the sibling care provid-ing role Once enmeshed in the care providing roles, manysiblings realized that they needed to plan future supports fortheir brother or sister with I/DD if they were no longer around.Sibling carers expressed some anxiety about how their ownaging would shape the continued care of their brother orsister. This was particularly important to the eight of the 15respondents who reported being older than the individualwith I/DD. For example, Susan expressed uncertainty abouthow she would maintain care providing for her sister as sheherself ages, stating, “Right now I guess I’m going to go at it asnaively as I told you before when I said, ‘I knew this (aging ofsibling with I/DD) was going to happen, but it dumbfoundedme.’”

Siblings expressed worries about the future, especially aboutthe likelihood that they themselves would face some of the sameissues their parents faced, notably those related to age-associateddecline. For example, Mary stated, “[My sister and I] are gettingolder. We’ve got to make some plans here. One of us could besick. You know, if [my sister with I/DD] needs acute care orsomething . . . What the hell’s going to happen to her if I getsick? Who’s going to care for her? We really had not made anyplans.”

Connie echoed this statement, looking further into thefuture, saying “[I am not] worrying about [my brother withI/DD] until he’s 70 and 80, because he’s so healthy.” In fact, Con-nie’s worries center more around her brother’s long-term futureand if she can afford his care. Although her parents had plannedfor her brother’s future, the money is likely to run out, compel-ling her to consider another financial plan to mitigate thisproblem.

Other siblings spoke about financial worry as well. Forexample, Joan said, “As long as we can do this financially and herhealth [is good], we’ll [support her].” The worry about availablesupport for siblings appears to last throughout the care provid-ing life course.

Well-Functioning Support Systems Contribute to SuccessfulAdjustment to Care Providing

The literature on aging suggests that carers benefit fromsupplementary support (Kiecolt-Glaser, Dura, Speicher, Trask, &Glaser, 1991). Beneficial forms of support include the informalcontributions of family members in terms of sharing responsi-bility for care providing, providing respite care, financial contri-butions, and emotional support for the caregiver. Formalsupport from home care agencies or formal caregivers is alsobeneficial and may help sustain the informal caregiver. Thisbifurcated support system—including both formal and informalcomponents—is reported by sibling caregivers in our study asessential.

For sibling carers of an individual aging with I/DD, receivingadequate support is complicated by several factors. Most adultswith I/DD have received both formal and informal supportthroughout their lives, yet as the family ages those systems mustbe renegotiated. Family members who served as supplementarysupports in the past may no longer be able or willing to partici-pate. Renegotiation is required at the formal service level as well.The lack of coordination at the formal level between disability-focused services and aging-related services is of special concern.Extended quotes from sibling carers on the ways additionalsupport systems impacted their adjustment to care providing areincluded in Table 4.

Support received from other siblings impacted adjustment to thecarer role Adjustment to the care providing role was impacteddirectly by the level of support provided by the other siblings inthe family. Only one participant in this sample did not haveanother sibling besides the individual with I/DD, so for all of ourrespondents some level of negotiation was required within thefamily. Of the other 14 carers, eight of them reported thatinvolvement (or lack thereof) by other siblings in the family hada negative impact on their adjustment to the carer role. However,among these eight, half of them also reported some positiveaspects of their other siblings’ involvement in the care of theperson with I/DD. In some other families, other siblings playedroles in the constellation of care, although their contributionswere often unpredictable and minor.

Even when sibling groups had successfully shared care pro-viding responsibilities in the past, participation often dwindledover time. Some hard feelings resulted when other siblings didnot contribute to care providing. For example, Barbara realized,“It became . . . two of us . . . I think as people got older there wasmore resentment . . . Some people [seemed to think that] if youdidn’t have children you’re more expected to jump in and girlsmore expected than boys . . . You build up some resentment that[the other siblings] are not completely on board . . .”

Aging throughout the family support system shaped thesharing of care providing responsibilities. Robert said that,although he had substantial support from his other brother inthe past, circumstances have changed due to age-related healthissues. He recalled, “My one brother . . . used to be the one . . .[the sister with I/DD] could always go over on the weekends. Soshe loved to do that.” However, he continued, “Now, because he’sin his 60s now he’s run into some medical problems where he’slimited physically so she can’t really go over there as much.”

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In some cases, distress surrounding the carer burden, andinsufficient support by other family members, spilled over toaffect the person with I/DD. For example, Connie noted that “[Itis] upsetting to [brother with I/DD] to have his two sisters[arguing] about his life and his future . . . It’s almost an analogyto divorced parents and arguing over the child, and that’s verystressful.” This absence of support from other family memberscreated not only conflict within families but also isolation andstress for the sibling acting as primary carer.

As noted, aging of the individual with I/DD spurred changesin the level of support provided by other siblings in the family.Ellen also mentioned the impact of support from other siblings,particularly as it changed with age. “People’s comfort levelsaround my brother’s needs, you know, with toileting . . . varied. . . Some people were annoyed at me, but I think it was becausethey were feeling guilty because . . . they were not able to partici-pate in his care providing.” These changes seemed to only add tothe stress of being the primary carer.

Formal support from service providers is helpful but may be diffi-cult to negotiate A challenge identified by many participantswas the compound stress associated with simultaneouslyresponding to the evolving care providing demands and coordi-nating appropriate services for the individual with I/DD. Forexample, Mary states, “I was starting to see her deterioratingphysically and mentally . . . Knowing the [disability] field I said,you know what? This gal is really on a slippery slope down rightnow.” This sister’s awareness of disability-related services gaveher insight into the limitations of the services her sister wasreceiving. Ellen noted this disparity as well, saying, “The grouphome that he went to was not prepared for [someone with]Alzheimer’s disease . . . The transition wasn’t smooth . . . Thingsthat we agreed would happen just didn’t happen.”

The tension between working within a familiar network ofdisability-related services and needing aging-specific servicescreated added challenges for sibling caregivers. Respondents feltthat the service system they were most familiar with could notaccommodate the changing needs of their siblings. This pre-sented additional layers of stress to an already complex situation.

For example, Maria stated, “I think a lot of the carers in . . .these group homes . . . don’t necessarily understand some of thesubtle [age-related] changes in behaviors . . . They think it’s abehavioral issue when it’s really . . . the [dementia] is makingthem do it.” Trying to manage both their sibling’s disabilityneeds and their evolving age-related needs required additionalnavigation of the disparate aging and disabilities servicessystems. Siblings, even when they knew and understood the dis-ability service system, faced major challenges in coordinatingthese services for their siblings with disabilities as they aged.

DISCUSSION

This study explored the transition of a sibling to his or herrole as carer for an adult aging with I/DD. Adult siblings are themost likely people to be involved in the support of adults agingwith I/DD, as parents die or become unable to provide care. Thekey finding of our study is that aging of the family system as awhole (parents, care recipient with I/DD, sibling carer, and othernoncare providing siblings) shapes the transition in uniqueways.

Our study highlights points of overlap in aging and disabilityframeworks and literature. In many respects, the sibling carerswe interviewed report experiences paralleling those cited in thegerontological literature, which typically focuses on the majorityof carers who are adult children or spouses (Antonucci, Birditt,

TABLE 4Well-functioning support systems contribute to successful adjustment to care providing

Commentary

Support from othersiblings

“I have one sibling who [provides direct care] every Sunday . . . and gives Jane her lunch . . . bathes . . .dresses her and hangs around with her . . . but that’s planned and scheduled. [The support I provide] islike if Jane is up in the middle of the night, I am up in the middle of night and I have trouble going to thework the next day. It affects my life tremendously as far as work is concerned.”

“I’ve isolated myself a lot because I was tired, frustrated. I asked for help. I said can you go at least visit acouple of times so that I don’t have to do it all the time. But they would do it when they wanted to and soI couldn’t depend on that. And they came up to Julie [sister with I/DD] and she didn’t know them. I cried.And they said, ‘Why are you crying?’ And I said, ‘Because she doesn’t know you.’ And they just . . . took itin stride. ‘We’re not here all the time and I don’t expect her to know us.’ . . . I said, ‘Doesn’t that botheryou? It would bother me.’ ”

Formal support “The [direct service providers] don’t seem to . . . be informed about Alzheimer’s disease. The person from theAlzheimer’s Association came . . . saying, ‘Look, I don’t know a whole lot about this group of people but Iwill give generic information about Alzheimer’s disease and how you make modifications for the generalpublic.’ That was probably the loneliest part. . . . We were in the throes of progressive dementia and therewas nobody that I could turn to, including any national organizations.”

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Sherman, & Trinh, 2011; Stone, Cafferata, & Sangle, 1987).Examples of commonality include the stress reported by ourparticipants, the life choices that it triggered (e.g., promptingretirement), and the intrafamily struggles and negotiations thatwere required in establishing and maintaining supports withinthe family system.

The intergenerational transition of care—here, from theparent to the sibling—is an important feature of sibling careproviding. The siblings we spoke with are picking up where theirparents left off; as a result, their care providing is constrained tosome extent by structures and habits put into place by theparents. For example, negotiating a group home placement foran adult with I/DD who has lived at home for his entire life ischallenging. As results from this study suggest, aging also meanschanges in need for both formal and informal support for theindividual with I/DD and their sibling carer. Understandingthese changes in care need for both family carers and aging ordisability services and supports is key for supporting familiesand individuals with I/DD. This study also illustrates thecomplex and evolving role of planning that is needed to ensurethe successful transition in care from parent to sibling, and thesubsequent transition in type of care that siblings are required toprovide as the individual with I/DD ages. Expanding our under-standing of how caring for adults aging with disability is similarto, yet also different from, caring for those aging into disability isan important goal shared by both the gerontology and disabilityfields of study (Washko, Campbell, & Tilly, 2012).

Implications for Policy and Practice

The findings presented in this paper lead to several policyand practice implications with respect to populations aging withdisability and sibling care providing in later life. In recentdecades, substantial effort has been directed toward integratingand including people with I/DD into mainstream life. Profes-sionals have underscored the importance of person-centeredplanning toward this goal (Factor, Sutton, Heller, & Sterns,1996). Our findings are unique in that they support extendingthis effort further into the late life course than is commonlyoccurring at present.

Our research suggests a clear need for education targetingfamily carers and service providers of this particular population ofadults aging with I/DD. Evidence suggests that planning andgaining knowledge about care providing options and supports hasa positive impact for families and adults aging with I/DD (Heller &Caldwell, 2006); and perhaps wider implementation and testing ofthis type of intervention could benefit sibling carers. In addition,knowledge about the physical, psychological, and behavioralchanges that come with age in this population is crucial to preparefamily carers for their new role as carers of older adults with I/DD.Building awareness about the available services and supportsystems in place, as well as how to access those systems is anotheravenue for educating these sibling carers.

Carers in this study observe that age-related changes in thefunctioning of their siblings with I/DD are outpacing the abilityof service systems to respond. Familiar sources of support forindividuals with I/DD may be insufficient for those experiencingage-related declines, making it difficult for this population to

successfully age in place. Findings from this study underscore theneed to develop long-term services and supports that accommo-date this population and their families, which has implicationsfor the coordination of disability and aging services (Factor,Heller, & Janicki, 2012). Doing so could contribute to a strongerinfrastructure by minimizing the high costs of nursing homecare (Marek, Stetzer, Adams, Popejoy, & Rantz, 2012) associatedwith disruptive later life transitions.

Limitations

This qualitative, exploratory study represents an early effortto examine the adjustment process for sibling carers whoprovide support for adults aging with I/DD. Although providingrich detail on the adjustment process and its challenges, impor-tant limiting features of our study warrant mention.

A key limitation is the fact that our sample was quite homo-geneous. Despite being geographically dispersed, informantswere predominately European-heritage, female, and wellinformed about disability. Based on the composition of thissample, findings must be interpreted with these issues in mind.All respondents were recruited through an online support groupof sibling carers; as such, all were familiar with electronic sourcesof information and all were actively seeking support in their careproviding activities. Perhaps the most important limitation tonote is that all 15 respondents had careers in the disabilities field.We noted this is a very small subset of all the siblings of peoplewith I/DD. We posit, however, that what was gained throughboth their personal and professional knowledge far outweighedthe nonrepresentativeness of their perspectives.

The nonrepresentativeness of the sample may occur acrossall of the variables, not just the professional one. Indeed, chil-dren raised in families with a child with disability may be drawnto helping professions as adults (see a similar speculation inHogan, 2012). As explained by Dorothy: “. . . [N]one of us wasinvolved in anything to do with people with developmental dis-abilities until Deborah [sister with I/DD] came along. I have tocredit her with my career . . .” Due to their professional back-grounds, our respondents likely know more than the averageperson about supports and services. Yet these individualsreported significant difficulty in navigating the transition tocarer, and most faced challenges in identifying services appropri-ate for the changing needs of their brother or sister. Given thefact that in many respects our respondents are educated “insid-ers,” one can imagine the difficulty of this transition for a less-informed person, or someone with alternative cultural beliefsand language capacities. The nonrepresentativeness of thesample may occur across all of the variables, not just the profes-sion of the sibling carer.

Another potential limitation in this study is that many of therespondents had siblings with Down syndrome. It has beennoted fairly extensively in the literature, for example, that peoplewith Down syndrome have a higher likelihood of acquiringAlzheimer’s at an earlier age than the broader sample of peoplewith I/DD. We note that they also have a shorter lifespan thanthe broader range of people with I/DD. However, our primarypurpose was to describe the transitions and the experiences ofsiblings who go through those transitions.

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Recommendations for Future Research

Findings from this study highlight the value of incorporatinginsights from both aging and disability. By drawing on theoreti-cal models of care providing as well as previously establishedresearch methods from both aging and disability, we can achievea greater understanding of this population of carers and theirneeds for services and supports. This is a goal that is alreadybeing pursued on many different fronts and one that canbenefit from continued interdisciplinary collaborations amongresearchers (Putnam, 2002; Thorpe, Davidson, & Janicki, 2000).An important next step for our work is developing additionaldata collection and analysis that will permit the developmentand testing of a theoretical model of sibling care providing—specifically including sibling carers who are not as homogeneousas those included in this study. For example, expanding theseanalyses to account for the ways in which culture, ethnicity, andother factors shape family relationships and motivations for careproviding will be an important area for future research. Addi-tional data collection can also aid in clarifying the potential dif-ferences in the aging processes for individuals with varying typesof I/DD compared with adults without disability. This informa-tion is crucial in the development of programs and interventionsto best prepare long-term care providers and carers of individu-als with I/DD for the physical, psychological, and behavioralchanges that come with age. Another important avenue of futureresearch is to understand how the needs of sibling carers aresimilar to or different from those who care for an older adultwithout I/DD and of differing family relation. Lastly, based onthe results of this study, we hypothesize that the well-being ofsibling carers is promoted by strong formal service and supportsystems for the individual with I/DD as well as the awarenessand accessibility of these systems. The dissemination of formaldescription and assessment of these different support systemswill be an important task as we continue to work on fosteringthe successful aging of adults with I/DD and their families.

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