Aims

1. Conclusion Life expectancy of individuals with DS has increased dramatically with the advancement of medical and surgical interventions. There is a great deal of heterogeneity in this group of aging individuals, potentially related to family and environmental factors. Using the FMSS, this study identified numerous themes from caregiver subsets that help characterize the family environment that may contribute to this heterogeneity in aging. The DS behavioral phenotype has been characterized in previous literature. Visual processing, social functioning, self help, and daily living skills are relative strengths in comparison to weaknesses in speech and language, verbal processing and motor functioning. Personality characteristics extracted as themes from the FMSS in this study were in-line with this established behavioral phenotype. Mothers The familial environment of individuals with DS is different from that of individuals with intellectual disability (ID) due to other causes. Such families are said to experience the “DS advantage,” which refers to the more favorable pattern of adaptations in families of individuals with DS as compared to families of individuals with ID due to other causes (Hodapp et al., 2001). Maternal well-being is a large component of the family environment and creates a positive environmental force in the lives of individuals with DS (Hauser-Cram et al., 1999). In this way, positive comments seen in themes from the mothers FMSS group suggest a positive related home environment. Presumably, this “advantage” has had a long-term positive impact for the individual with DS. Siblings As adults with DS live increasingly longer lives, their adult siblings often assume caregiving responsibilities. Literature has demonstrated a similar “advantage” for these sibling caregivers of individuals with DS as seen with mothers (Hodapp et al., 2007). Themes from the sibling group in this study are consistent with these findingsand contribute to the dearth of information about sibling caregivers of adults with DS. Dementia Research looking at the effect of life-long caregiving on the caregiver has shown that most families adapt well to having a family member with disabilities (Seltzer et al., 2001). Themes from this sample depict the positive emotions as well as the apprehension and worry associated with caring for an aging family member with DS. This is also an essential area for future research. Themes extracted from all three groups bear witness to the unique characteristics of caring for an aging individual with DS. As mentioned previously, this is an area where there is a large need for further investigation. Parents and siblings in this study described characteristics and experiences related to the DS phenotype and “advantage,” and further research will potentially discover that individuals with DS have benefitted from this enriching environment throughout their lives. Acknowledgements Research was supported by NICHD (R03 HD59848, Esbensen; P30 HD03352, Seltzer) and NIA (R01 AG08768, Seltzer). Families who participated in this research. Aging in Down Syndrome: Experiences of Families Alison Downes, MD, Anna Esbensen, PhD, Ryan Macks, PhD, Erin Murphy, BS, Theodora Schade, BA • Leadership Education in Neurodevelopmental and related Disabilities (LEND) Program • The Division of Developmental and Behavioral Pediatrics • Cincinnati Children's Hospital Medical Center • The University of Cincinnati University Center for Excellence in Developmental Disabilities WAISMAN CENTER • Themes Specific to Mothers • Impact of caregiving on caregiver: The joys, challenges and emotions experienced by mothers caring for their aging child with DS. • “I can’t imagine my life now without him.” • Societal stigmatization: The stereotypes and assumptions about individuals with DS that families have encountered, often stemming from a lack of understanding or education. • “Most doctors we saw said ‘put him away.’” • "When she was born it was kind of tough on both of us…the name that they • used at the time…it was mongoloid idiot." • Good self-image: An individual’s pride in their successes and sense of self-worth. • “He has a remarkable self-image. I mean, he just thinks he’s quite alright, and • quite frankly, he is.” • Communication: The impact of communication challenges on interpersonal interactions. • “His handicap more than anything is his speech, which makes it hard for him to • communicate to people who don’t know him very well.” • Health issues: Problems with medical, physical, or mental well-being. • “He’s overweight and we’re trying to bring it down.” • Themes Specific to Siblings • Impact of caregiving on caregiver: Definition same as above • “And it’s just amazing living with him. When he’s gone for a few days, it’s like • there’s a light out in my life.” • Nostalgia of childhood: Recollections of the past and of growing up with a sibling with DS. • “And then when he finally did learn to walk I remember that was just such a thrill • for all of us.” • “And we just loved him to pieces right from the start.” • Decline in health: Life changes associated with medical, physical, or mental decline. • “I don’t know if she necessarily recognizes people as much now.” • Themes Specific to Dementia • Impact of dementia on family: The challenges and emotions experienced by families caring for an individual with dementia. • “It's as always hard to understand what's going on and to accept things that he • used to be able to do and he just does not understand anymore." • Decline in health: Life changes associated with medical, physical, or mental decline, including those related to dementia. • “Some days he's very good, so very much like he used to be, and other days • he's distant and you know, a lot of confusion going on there." Introduction/Background A highly significant change in the survival of peoplewith Down syndrome (DS) has occurred during the last two generations, with lifeexpectancy estimates increasing from 12 years in 1949 to nearly 60 years ofage today (Bittles & Glasson, 2004). Individuals with DS, as a group, have better functional abilities and fewer behavior problems from childhood through mid-life as compared to individuals with other causes of intellectual or developmental disabilities (Esbensen et al., 2008). As adults with DS age beyond midlife, there is evidence of an elevated rate and earlier onset of the cognitive and behavioral declines associated with dementia (Zigman et al., 2002). Research has shown that there is a great deal of within-group heterogeneity in aging among adults with DS. We hypothesize that some of the heterogeneity is associated with family and environmental factors. This study is an initial exploration of the family environment, investigated by extracting themes from a five-minute speech sample (FMSS). This study builds from a study of 461 co-residing families of adults with intellectual disability (R01 AG08768), which included 169 families of adults with DS. The surviving adults with DS are now ages 35-68. Sample Demographics of Caregiver Demographics of Adult with DS • Common Themes Across Groups • Social Personality Characteristics: The qualities of an individual’s personality that are evident in their social interactions (ie. easy-going, caring). • “He has a wonderful personality….a good sense of humor.” • “She is a very caring, loving young lady. She is always concerned • about everyone else’s feelings.” • Functional/Adaptive Personality Characteristics: The qualities of an individual’s personality that help them with daily living and allow them to be productive members of society (ie. hard-working, organized). • “He’s a hard worker and they can put him at any job they’ve got. And • he will do it, and do it well.” • “He’s very helpful around the house; if I ask him to do something he’s • always ready to pitch in and do whatever has to be done.” • Maladaptive Personality Characteristics: The qualities of an individual’s personality that hinder them in daily living and interfere with their integration into society (ie. stubborn, rigid). • “He does things a certain way, and sometimes we have to adjust • rather than he adjust” • “She gets a little stubborn at times. When she wants something, she • wants it, whether it’s the proper time or not.” • Hobbies and Interests: The activities and interests that an individual enjoys for recreation and/or socialization. • “Couple times a week he goes to the art center, that's his big love in • his life.” • “And he’s really gung-ho on sports like any other guy would be.” Aims To determine key themes expressed by family members during a FMSS. The extracted themes were analyzed separately for (1) mothers as caregivers, (2) siblings as caregivers, and for (3) family members of individuals with DS with signs and symptoms of dementia. Methods Semi-structured interviews were conducted with 75 family members (respondents) of adults with DS (36 mothers, 4 fathers, 35 siblings) and transcribed. The family member interviewed was identified as the primary caregiver for their relative with DS. A qualitative analysis of a FMSS was done to determine key themes expressed by family members. Respondents were asked to: “Speak for 5 minutes, telling me what kind of a person (name) is and how the two of you get along together.” The FMSS is a brief measure of expressed emotion and assesses the quality of the respondent-relative’s home environment (Magaña et al, 1986). Themes were identified from the FMSS by three independent reviewers using consensus coding and then evaluated for reliability. References Bittles AH, Glasson EJ. (2004). Clinical, social, and ethical implications of changing life expectancy in Down syndrome. Developmental Medicine and Child Neurology, 46, 282-286. Esbensen AJ, et al. (2008). Stability and change in health, functional abilities and behavior problems among adults with and without Down syndrome. American Journal of Mental Retardation, 113, 263-277. Hodapp RM, et al. (2001). Less stress, more rewarding: parenting children with Down syndrome. Parenting: Science & Practice, 1, 317-337. HodappRM, Urbano RC. (2007). Adult siblings of individuals with Down syndrome versus with autism: findings from a large-scale US survey. Journal of Intellectual Disability Research. 51(12):1018-29. Magaña AB, et al. (1986). A brief method for assessing expressed emotion in relatives of psychiatric patients, Psychiatry Research, 17, 203-212. Seltzer MM, et al. (2001). Life course perspectives of parenting a child with a disability. American Journal of Mental Retardation 106:265–286. Zigman WB, et al. (2002). Incidence and temporal patterns of adaptive behavior change in adults with mental retardation. American Journal on Mental Retardation, 107, 161-174. Reliability Coding Mothers 92% (one error of commission) Siblings 100% (one error of commission) Dementia 90%