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. Author manuscript; available in PMC: 2021 Aug 4.
Published in final edited form as: J Appl Res Intellect Disabil. 2020 Jan 28;33(5):865–875. doi: 10.1111/jar.12706

Leisure Activity in Middle-Aged Adults with Down Syndrome: Initiators, Social Partners, Settings, and Barriers

Iulia Mihaila 1, Benjamin L Handen 2, Bradley T Christian 3,4, Sigan L Hartley 3,5
PMCID: PMC8336454  NIHMSID: NIHMS1574995  PMID: 31994249

The life expectancy of individuals with Down syndrome (DS), the most common genetic disorder leading to intellectual disability, has increased from approximately 9 years in the early 1900s (Zigman & Lott, 2007) to 60 years in the present day (Torr, Strydom, Patti, & Jokinen, 2010). Yet, despite the growing population of adults with DS, little research has focused on promoting optimal aging in adulthood for this population. Leisure activity, defined as enjoyable activity occurring outside of the demands of work (Pressman et al., 2009), is an aspect of daily life that is linked to optimal aging outcomes, such as greater quality of life, better physical health, and higher cognitive functioning in adults in the general population (e.g., Brajsa-Zganec, Merkas, Sverko, 2011; Hughes, Chang, Vander Bilt, & Ganguli, 2010; Pressman et al., 2009). Leisure activity has similarly been found to be associated with greater quality of life and psychological well-being in adults with intellectual and developmental disabilities (IDD; Badia, Longo, Orgaz, & Gomez-Vela, 2013; García-Villamisar & Dattilo, 2010), and better cognitive functioning in adults with DS (Lifshitz-Vahav, Shnitzer, & Mashal, 2016; Mihaila et al., 2019). Interventions that increase leisure activity may thus be an important way to support optimal aging outcomes in DS. However, in order to direct such interventions, the field needs a rich characterization of the type and level of leisure activity adults with DS currently engage in, as well as to identify factors that promote and hinder such activities. The primary goal of the present study was to use a daily diary to provide an in-depth description of the leisure activity of 44 middle-aged adults with DS across a typical 1-week period, and to identify the initiators, social partners, and settings of these activities. The secondary goal was to identify barriers to leisure activity participation.

Leisure Activity Domains

To date, the handful of studies that have examined the leisure activity of adults with DS (e.g., Carr, 2008; Lifshitz-Vahav et al., 2016; Mihaila et al., 2017), have used global ratings of leisure, which are limited by the retrospective reporting of activity over a lengthy period of time (e.g., last 6 months or year). Moreover, virtually nothing is known about time spent in leisure activity by adults with DS on a daily basis, and if these levels are consistent with recommended guidelines and/or levels reported in other populations as associated with optimal aging outcomes.

Physical leisure.

Physical leisure involves activities with physical energy expenditure such as jogging, biking, or lifting weights. Greater participation in physical leisure is associated with improved physical health (e.g., reduced risk of cardiovascular disease, such as coronary heart disease and diabetes) and psychological well-being (Penedo & Dahn, 2005). Given these benefits, the U.S. Department of Health and Human Services (HHS; United States Department of Health and Human Services, 2008) recommends that adults engage in 150 minutes/week of moderately-active physical activity and/or walk at least 10,000 steps/day. In the DS population, studies that have examined physical leisure in adults have largely used global ratings (e.g. weekly or daily participation). For example, Carr (2008) found that 68% of a sample of adults with DS participated in a sport at least once a week at age 30 years, while only 44% continued to participate at that same level at age 40 years. The handful of studies that have examined daily physical activity in older adults (aged ≥ 50 years) with wide ranging types of IDD have reported that roughly 15% attained at least 10,000 steps/day (Hilgenkamp, Reis, van Wijck, & Evenhuis, 2012; Peterson, Janz, & Lowe, 2008).

Social leisure.

Social leisure involves interaction with others, such as talking with a friend or attending a social gathering. In the general population, studies indicate that adults spend an average of 39 minutes/day engaged in social leisure (United States Bureau of Labor Statistics, 2017), and evidence suggests that those who have more contact (i.e., weekly versus monthly) with family and friends experience greater physical health and well-being (e.g., García, Banegas, Perez-Regadera, Cabrera, & Rodriguez-Artalejo, 2005). In an earlier study from our research group, over 80% of middle-aged adults with DS participated in a social leisure activity at least once a week (Mihaila et al., 2017). Across other studies, 35% to 83% of young adults with IDD reported having friends (Dusseljee, Rijken, Cardol, Curfs, & Groenewegen, 2011; Jobling & Cuskelly, 2002), however, there is evidence to suggest that this percentage declines during middle adulthood (Dusseljee et al., 2011).

Cognitively stimulating leisure.

Cognitively stimulating leisure involves activities that require cognitive engagement such as directing and sustaining attention, working memory, and problem-solving, and includes activities such as puzzles and reading. In our previous work, we found that 27% of middle-aged adults with DS reported reading books and 26% reported reading the newspaper on a daily basis (Mihaila et al., 2017). Other studies indicate that a large portion of young adults with DS (79%) read and/or look through books at least once a week (Carr, 2008). Yet, again, these studies used global ratings; thus, the actual time spent engaging in cognitively stimulating leisure (e.g., 5 minutes versus 2 hours) each day remains unknown. Evidence from the general population suggests that cognitively stimulating leisure is not only important for psychological well-being, but may also delay age-related declines in cognitive functioning and dementia (Bennett, Arnold, Valenzuela, Brayne, & Schneider, 2014; Kim & Kim, 2014; Wilson et al., 2002). Indeed, one study found that compared to older adults who engaged in less than 30 minutes/day of cognitively stimulating leisure, those who engaged in 1 hour/day had a lower risk of dementia (Hughes et al., 2010). This finding is consistent with the concept of cognitive reserve, which posits that cognitively stimulating activity delays cognitive decline in the face of aging-related brain change (Stern, 2009). The potential benefits of cognitively stimulating leisure are particularly relevant for middle-aged adults with DS given their increased risk and early onset of dementia (Rubenstein, Hartley, & Bishop-Fitzpatrick, 2019). Indeed, recent evidence suggests that adults with DS who engage in more cognitively stimulating leisure have better episodic memory (Mihaila et al., 2019) and cognitive performance (Lifshitz-Vahav et al., 2016).

Passive leisure.

In contrast to the above domains, higher (versus lower) sedentary or passive leisure activity, involving little cognitive engagement, such as watching television, has been found to be associated with poorer psychological well-being in studies on the general population (e.g., Kikuchi et al., 2014; Trainor, Delfabbro, Anderson, & Winefield, 2010). Previous studies indicate that adults with DS and other IDD frequently participate in passive leisure (Buttimer & Tierney, 2005; Carr, 2008; Jobling & Cuskelly, 2002; Mihaila et al., 2017). In our previous work (Mihaila et al., 2017), we found that over 80% of adults with DS watched television on a daily basis; however, time spent watching television each day was unknown. In the general population, adults consume 2–3 hours of television per day, on average, with each additional hour/day increase in television consumption associated with decreased psychological well-being and physical health (Dempsey et al., 2014). During middle adulthood, individuals with IDD often encounter declines in formal disability services (Pruchno & McMullen, 2004) and increased barriers to community activities, such as limited transportation (Buttimer & Tierney, 2005). As a result, middle-aged adults with DS may be at risk for watching a high amount of television per day.

Initiators, Social Partners, Settings, and Barriers

Virtually nothing is known about the mechanisms that facilitate and/or hinder leisure activity for middle-aged adults with DS. Insight into who initiates leisure (i.e., whose idea it was to engage in the activity), who engages in leisure as a social partner (i.e., no social partner, a family member, a friend, or a support staff or agency provider), and where leisure activity occurs (i.e., at home or in the community) is particularly useful for informing interventions. Further, identifying barriers to leisure activity is necessary as middle-aged adults with DS may experience different barriers compared to their younger-aged peers.

There is evidence from previous research that family involvement is key for the leisure activity of adults with DS (e.g. Jobling & Cuskelly, 2002; Mihaila et al., 2017); however, it remains unclear how family members promote leisure activity. Studies suggest that family members, as opposed to support staff, are most likely to organize leisure for adolescents and young adults with IDD (Buttimer & Tierney, 2005; Jobling & Cuskelly, 2002). Moreover, family members may be critical for providing transportation to activities and/or may act as social partners in leisure. Indeed, studies have reported that family members (i.e., parents or siblings) are more likely than support staff to be social partners in the leisure of adolescents and young adults with IDD (Buttimer & Tierney, 2005; Jobling & Cuskelly, 2002; Sanderson, Burke, Urbano, Arnold, & Hodapp, 2017). Yet, the majority of previous studies focused on adolescents and young adults with DS who resided with family; thus, it is unclear if family members remain key initiators and social partners of leisure activity for adults with DS who reside outside of the family home (e.g., in group homes or independent living).

Understanding the setting of leisure activity is also important for facilitating leisure. In our previous work using a global rating, middle-aged adults with DS most regularly engaged in home-based, passive leisure (Mihaila et al., 2017). From an intervention standpoint, community-based leisure activity is most desirable, as it provides opportunities to foster social engagement and feelings of inclusion and belonging. Other research has identified transportation as a barrier to community-based activity for adults with IDD (Buttimer & Tierney, 2005). Indeed, Hall and Hewson (2006) found that 88% of adults with IDD living in group homes or independent living situations went into the community less than once a day, with 48% remaining in the community for less than an hour on outings. Access to community-based leisure may be similarly limited for adults with DS who reside with family members, as family members are themselves aging and may be navigating their own health and transportation issues. Additional barriers, beyond transportation, may also impact leisure activity participation. For example, understanding whether physical health, money, and time are barriers to leisure could provide insight into the development of services for the DS population.

The goal of the present study was to provide an in-depth description of the daily leisure activity of 44 middle-aged adults with DS, as it spontaneously occurred across an average week, using a 7-day daily diary. We examined four leisure domains (i.e., physical, social, cognitively stimulating, and passive) and the factors that facilitated (i.e., initiators, social partners, and setting) or hindered (i.e., barriers) participation. Based on previous studies of adults with DS and other types of IDD (e.g., Badia, Orgaz, Verdugo, Ullan, & Martinez, 2011; Buttimer & Tierney, 2005; Mihaila et al., 2017), we hypothesized that middle-aged adults with DS would not meet recommended daily physical leisure standards, would engage in low levels of daily social and daily cognitively stimulating leisure, and would exceed average daily passive leisure levels observed in the general population. Consistent with research indicating that family is key for the leisure activity of adolescents and young adults with IDD (Buttimer & Tierney, 2005; Jobling & Cuskelly, 2002), we hypothesized that family members, as opposed to other individuals, would be the primary initiators and social partners in leisure, and that this would be true regardless of whether the adult with DS resided with family or in an alternative setting (e.g., group home or independent living). We predicted that leisure would be primarily home-based, as community-based leisure is often limited by availability of transportation and support (Buttimer & Tierney, 2005; Hall and Hewson, 2006). Similarly, we predicted that access to transportation would be the primary barrier to the leisure participation of middle-aged adults with DS.

Method

Sample

The present study included 44 middle-aged adults with DS and their caregivers. Participants were recruited through fliers, postings on DS listservs, and from an ongoing study conducted at the University of Wisconsin - Madison, examining functional and neurological changes associated with aging in DS. Eligibility criteria included having DS (confirmed via medical record and karyotyping), being over the age of 25 years, and having a mental age greater than or equal to 3 years. Dementia status was screened for using the Dementia Questionnaire for People with Learning Disabilities (DLD; Evenhuis, Kengen, & Eurlings, 2007); adults with DS scoring in the symptomatic range were excluded, as dementia likely alters leisure activity. In addition, adults with DS needed to have a reliable caregiver willing to assist with the study.

Procedure

The adults with DS and their caregivers completed a 1.5-hour home visit. They were interviewed regarding sociodemographic information. Caregivers completed a leisure barrier questionnaire and the adults with DS completed a receptive language assessment to assess mental age. Following the visit, a 7-day daily diary was scheduled. The adults with DS and their caregivers were told that the purpose of the study was to examine lifestyle factors, including leisure activity, and asked to jointly complete the diary (10 minutes/entry) for 7 consecutive days, reporting on leisure activity that occurred in the past 24 hours. The importance of accurate data was stressed. Adults with DS and caregivers were told that the goal was to capture leisure activity during an average or typical week; thus, they should not change their behavior for the study. They were assured that all responses were confidential and would only be seen by study staff. The adults with DS and their caregivers each received $20 for participation. Table 1 displays sociodemographic information for the 44 adults with DS. The adults with DS were aged 25–56 years (M = 37.56, SD = 8.26), 52.27% were male, and they had an average receptive language age equivalent of 7.78 years. The majority lived with family (68.18%).

Table 1.

Sociodemographic Characteristics of Adults with Down Syndrome

Age in years (M [SD]) 37.56 (8.26)
   Range 25.50 – 56.08
Mental age in years (M [SD]) 7.78 (2.57)
   Range 3.00 – 15.25
Gender (n [%])
   Female 21 (47.73)
   Male 23 (52.27)
Ethnicity (n [%])
   White non-Hispanic 44 (100.00)
Physical health symptoms (M [SD]) 3.14 (1.71)
   Range 0.00 – 8.00
BMI Status (n [%])
   Healthy (18–24) 6 (13.64)
   Overweight (25–29) 8 (18.18)
   Obese (30–39) 22 (50.00)
   Extremely Obese (39+) 8 (18.18)
Residence (n [%])
   Family 30 (68.18)
   Group home 3 (6.82)
   Supported apartment 3 (6.82)
   Independently 8 (18.18)
Employment (n [%])
   Full or part time 20 (45.45)
   Full or part time with support 2 (4.55)
   Supported workshop 17 (38.64)
   Day Treatment 2 (4.55)
Volunteer 2 (4.55)
Not employed 1 (2.27)
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Measures

Sociodemographic control variables.

Information on chronological age, mental age, residence, physical health symptoms, and body mass index (BMI) was obtained. Associations between these variables and leisure activity were examined and included in analyses as control variables where appropriate. The adults with DS completed the Peabody Picture Vocabulary Test – 4th Edition (PPVT-4; Dunn & Dunn, 2007), a measure of receptive language often used with adults with DS (e.g., Hartley et al., 2014; Mihaila et al., 2017). Caregivers reported on the residence of the adult with DS (“with family” = 0, “elsewhere” = 1), and their physical health symptoms were summed, using a checklist of 15 problems (e.g., heart problems and diabetes), rated as present (coded 1) versus absent (coded 0). Caregivers also reported on their own chronological age (in years) and health (“excellent” = 1, “very good” = 2, “good” = 3, “fair” = 4, “poor” = 5).

Leisure activity.

For 7 consecutive days, the adults with DS and their caregivers completed a leisure diary. Daily diaries in which participants report time spent in various activities have good reliability and validity in other populations when completed over multiple days and in which daily averages are the focus of analysis (Gershuny et al., 2017; Robinson, 2002). A list of leisure activities was provided from the Victoria Longitudinal Study activity questionnaire (VLS; Jopp & Hertzog, 2007), which has adequate internal consistency in the general population (Jopp & Hertzog, 2010) and in adults with DS (Mihaila et al., 2017). The VLS consists of 68 items factored onto 10 subscales: physical activities, crafts, games, television watching, social activities, relational activities, travel, technology use, developmental activities and experiential activities. There was also an “Other” option. Leisure activity items were placed into four domains as follows: physical (physical subscale), social (social-private, social-public, and religious subscales), cognitively stimulating (game, experiential, and developmental subscales), and passive (television subscale).

For each leisure activity endorsed, the activity was described (e.g., “walked in neighborhood”), and the amount of spent in the activity (e.g., 21 minutes) and the timespan during which the activity occurred (e.g., 2:44–3:05pm) was reported. Average daily time spent in each domain of leisure activity (reported in hours) was calculated by summing the total number of minutes in all activities in each domain across the 7-days and dividing by the 7-day period.

To validate the daily diary reports, the majority of adults with DS (n = 39) also wore an ActiGraph GT9X-BT accelerometer (ActiGraph, LLC, Pensacola, FL) across the 7-day period. The device uses a solid state triaxial accelerometer to capture and record raw acceleration data (ActiGraph, 2016). We examined time spent in moderate to vigorous physical activity sampled at 60 hz using the thresholds described by Troiano and colleagues (2008), which have been previously used in samples of adults with IDD (Oviedo, Travier, & Guerra-Balic, 2017; Phillips & Holland, 2011). The screen of the wrist-worn device was turned off so that the adults with DS and caregivers were blind to daily physical activity levels.

Initiators, social partners, and settings.

In the 7-day daily diary, the adult with DS and caregiver also reported who initiated (e.g., adult with DS or someone else) each leisure activity, who engaged in each leisure activity as a social partner, and where each leisure activity occurred. Initiator was coded as “self (i.e., adult with DS)” = 0, “family” = 1, “friend” = 2, and “support staff” = 3. Social partner was coded as “none” = 0, “family” = 1, “friend” = 2, and “support staff” = 3. Setting was coded as “home” = 0 or “community” = 1.

Barriers.

Caregivers completed the Leisure Constraints subscale of the Trail Leisure Assessment Battery for People with Cognitive Impairments (TLAB; Dattilo & Hoge, 1997) to determine barriers to leisure activity participation. The TLAB consists of 10 items, and caregivers rated each barrier as “present” = 1 or “absent” = 0.

Data Analysis Plan

Descriptive statistics were used to examine the average daily time adults with DS spent in the four domains of leisure activity. To determine the validity of daily diary-reported time spent in physical leisure, Pearson’s correlations were conducted to examine the association between daily-diary reported time spent in physical leisure and accelerometer-derived total activity counts per day. Descriptive statistics were also used to examine the breakdown of initiators, social partners, and settings, on an average day, within each leisure domain, and also the barriers to leisure activity. Pearson’s correlations were conducted to examine associations between sociodemographic characteristics (i.e., chronological age, mental age, residence, physical health symptoms, and BMI) and average daily time spent in each leisure domain. One-way analysis of variance (ANOVA) models were conducted (including sociodemographic variables as covariates where appropriate) to determine if, within each leisure domain, there was a difference in the average daily percent of leisure activity initiated by each type of initiator, engaged in with each type of social partner, and/or occurring in each setting. Follow-up Bonferroni post-hoc analyses were used to identify specific group differences. Finally, one-way ANOVA models were conducted using only the subgroup of middle-aged adults with DS who resided outside of the family home to determine if residence altered the pattern of findings.

Results

Average daily and weekly time spent in each domain of leisure activity based on the daily diary ratings is presented in Table 2. Pearson’s correlation indicated a significant positive association between daily diary-reported time spent in physical leisure and accelerometer-derived total activity counts per day (r = .42, p <.01). Overall, 34% (n = 15) of middle-aged adults with DS achieved a total of 150+ minutes/week of moderate intensity physical activity (i.e., ≥ 2020 to 5999 counts/minute), and no adults with DS engaged in vigorous physical activity (i.e., ≥ 6000 counts/minute).

Table 2.

Time Spent Engaging in Leisure Activity

Average Time/Day (Hours) Total Time/Week (Hours)
Physical (M [SD]) 0.59 (0.55) 4.16 (3.85)
   Range 0.02 – 2.35 0.17 – 16.42
Social (M [SD]) 1.11 (0.78) 7.78 (5.47)
   Range 0.07 – 3.18 0.47 – 22.27
Cognitively Stimulating (M [SD]) 1.25 (1.09) 8.75 (7.66)
   Range 0.00 – 4.37 0.00 – 30.58
Passive (M [SD]) 2.40 (1.41) 16.82 (9.85)
   Range 0.17 – 6.23 1.17 – 43.58
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The domains of leisure activity were not significantly correlated with sociodemographic variables for middle-aged adults with DS: chronological age (physical: r = 0.01, p = .96; social: r = 0.28 , p = .07; cognitively stimulating: r = −0.08, p = .61; passive: r = 0.04, p = .79), mental age (physical: r = 0.06, p = .69; social: r = −0.04, p = .78; cognitively stimulating: r = 0.22, p = .15; passive: r = −0.09, p = .56), residence (physical: r = −0.02, p = .90; social: r = 0.10, p = .54; cognitively stimulating: r = −0.09, p = .57; passive: r = 0.09, p = .55), physical health symptoms, (physical: r = 0.25, p = .10; social: r = 0.04, p = .83; cognitively stimulating: r = 0.02, p = .88; passive: r = 0.27, p = .08), and BMI (physical: r = −0.24, p = .12; social: r = 0.29, p = .06; cognitively stimulating: r = 0.15, p = .33; passive: r = 0.08, p = .62). Additionally, there were no significant correlations between leisure activity and caregiver age (physical: r = 0.02, p = .90; social: r = −0.01, p = .96; cognitively stimulating: r = 0.10, p = .55; passive: r = 0.07, p = .69) or caregiver health (physical: r = −0.32, p = .05; social: r = 0.17, p = .32; cognitively stimulating: r = 0.17, p = .30; passive: r = 0.01, p = .94). Thus, sociodemographic and caregiver variables were not controlled for in remaining analyses.

Table 3 displays the percent of physical, social, cognitively stimulating, and passive leisure activity initiated, on an average day, by each type of initiator. One-way ANOVAs indicated significant differences in daily physical (F (3,168) = 30.39, p < .01), social (F (3,168) = 81.71, p < .01), cognitively stimulating (F (3,164) = 225.26, p < .01), and passive (F (3,172) = 312.72, p < .01) leisure by initiator type. Bonferroni post-hoc analyses indicated that middle-aged adults with DS self-initiated a higher percent of daily physical leisure than family (p < .01), friends (p < .01), or support staff (p < .01). Family initiated a higher percent of daily physical leisure than friends (p < .01). Middle-aged adults with DS also self-initiated a significantly higher percent of daily social leisure than family (p < .01), friends (p < .01), or support staff (p < .01). Family initiated a higher percent of social leisure than friends (p < .01) or support staff (p < .01). Similarly, middle-aged adults with DS self-initiated a significantly higher percent of cognitively stimulating leisure than family (p < .01), friends (p < .01), or support staff (p < .01), and family initiated a higher percent of cognitively stimulating leisure than friends (p = .01) or support staff (p = .03). Finally, middle-aged adults with DS self-initiated a significantly higher percent of passive leisure activity than family (p < .01), friends (p < .01), or support staff (p < .01), and family initiated a higher percent of passive leisure than friends (p = .01).

Table 3.

Percentage of Average Daily Initiator, Social Partner, and Setting of Leisure Activity

Physical Social Cognitively Stimulating Passive
Initiator
Self (M [SD]) 60.55 (40.72) 64.58 (28.48) 83.92 (26.72) 87.36 (21.74)
   Range 0 – 100.00 0 – 100.00 0 – 100.00 14.29 – 100.00
Family (M [SD]) 23.59 (33.81) 27.08 (24.19) 13.32 (25.80) 10.57 (20.08)
   Range 0 – 100.00 0 – 100.00 0 – 100.00 0 – 85.71
Friend (M [SD]) 0.39 (2.54) 2.79 (6.66) 0.80 (3.01) 0.13 (0.83)
   Range 0 – 16.67 0 – 33.33 0 – 14.29 0 – 5.50
Staff (M [SD]) 15.47 (29.90) 5.54 (16.53) 1.96 (10.36) 1.94 (10.38)
   Range 0 – 100.00 0 – 100.00 0 – 66.67 0 – 66.67
Social Partner
None (M [SD]) 51.09 (39.37) 5.63 (14.33) 76.32 (25.70) 65.78 (34.95)
   Range 0 – 100.00 0 – 56.83 0 – 100.00 0 – 100.00
Family (M [SD]) 16.87 (25.81) 58.63 (29.82) 15.78 (21.81) 27.02 (33.61)
   Range 0 – 100.00 0 – 100.00 0 – 100.00 0 – 100.00
Friend (M [SD]) 12.52 (25.71) 25.17 (24.68) 3.27 (10.821) 4.08 (14.89)
   Range 0 – 100.00 0 – 100.00 0 – 100.00 0 – 83.33
Staff (M [SD]) 19.51 (29.49) 10.55 (19.97) 4.63 (16.22) 3.13 (11.65)
   Range 0 – 100.00 0 – 100.00 0 – 88.14 0 – 66.67
Setting
Home (M [SD]) 39.01 (36.56) 53.74 (29.36) 87.23 (26.61) 84.76 (20.94)
   Range 0 – 100.00 0 – 100.00 0 – 100.00 30.00 – 100.00
Community (M [SD]) 60.99 (36.56) 46.26 (29.36) 12.77 (26.61) 15.24 (20.94)
   Range 0 – 100.00 0 – 100.00 0 – 100.00 0 – 70.00
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The above one-way ANOVA models were rerun with the subgroup of middle-aged adults with DS residing outside of the family home (e.g., group home or independent living) to determine if patterns differed from those described above. The only difference to emerge was that there was not a significant difference in the percent of daily physical leisure self-initiated versus initiated by support staff, or initiated by family versus by friends. For daily social, cognitively stimulating, and passive leisure, there were no significant differences in percent initiated by family versus friends or support staff.

The percent of physical, social, cognitively stimulating, and passive leisure activity engaged in with each type of social partner, on an average day, is also presented in Table 3. One-way ANOVAs indicated significant differences in daily physical (F (3,168) = 14.27, p < .01), social (F (3,168) = 46.76, p < .01), cognitively stimulating (F (3,164) = 133.21, p < .01), and passive (F (3,172) = 55.93, p < .01) leisure by social partner. Bonferroni post-hoc analyses indicated that middle-aged adults with DS engaged in a higher percent of physical leisure with no social partner than with family (p < .01), friends (p < .01), or support staff (p < .01). Middle-aged adults with DS engaged in a higher percent of social leisure with family as opposed to friends (p < .01), support staff (p < .01), or alone, with no social partner (p < .01), and in a higher percent with friends as opposed to support staff (p = .02) or alone (p < .01). Middle-aged adults with DS engaged in a higher percent of cognitively stimulating leisure alone versus with family (p < .01), friends (p < .01), or support staff (p < .01), and in a higher percent with family versus friends (p = .02). Similarly, middle-aged adults with DS engaged in a higher percent of passive leisure with no social partner, as opposed to with family (p < .01), friends (p < .01), or support staff (p < .01), and in a higher percent with family versus with friends (p < .01) or support staff (p <.01).

The above analyses were rerun with the subgroup of middle-aged adults with DS residing outside of the family home to see if patterns differed from those described above. Limited differences emerged. Among middle-aged adults with DS not residing with family, there was no significant difference in the percent of daily physical leisure middle-aged adults with DS engaged in alone versus with staff. Regarding daily social leisure, there was no significant difference in percent engaged in alone versus with friends. Finally, there was no significant difference in percent of daily cognitively stimulating leisure engaged in with family versus friends and there no significant difference in percent of daily passive leisure engaged in with family versus friends or support staff.

Lastly, the percent of physical, social, cognitively stimulating, and passive leisure activity that occurred in each setting, on an average day, is in Table 3. A one-way ANOVA (F (1,84) = 7.77, p < .01) indicated a significant difference in percent of physical leisure by setting; a higher percent took place in the community as opposed to in the home. Next, a one-way ANOVA (F (1,84) = 1.40, p = .24) indicated no significant difference in percent of social leisure in the home versus in the community. Finally, one-way ANOVAs indicated significant differences in percent of cognitively stimulating (F (1,82) = 164.44, p < .01) and passive (F (1,86) = 242.51, p < .01) leisure by setting; a higher percent of each occurred in the home as opposed to in the community. Follow-up analyses examining this question within the subgroup of middle-aged adults with DS not residing with family found a consistent pattern of results.

Table 4 presents the number and percent of caregivers who rated each barrier as limiting the leisure activity of middle-aged adults with DS. On average, middle-aged adults with DS were reported to experience 1.85 barriers (SD = 2.47). The highest endorsed were lack of nearby places (31.82%), friends (31.82%), knowledge of how to engage in leisure (18.18%), and transportation (18.18%).

Table 4.

Barriers to Leisure Activity Participation

Yes n (%) No n (%) Missing n (%)
Barrier
Does he/she have enough time? 34 (77.27) 5 (11.36) 5 (11.36)
Does he/she have enough money? 32 (72.73) 7 (15.91) 5 (11.36)
Does he/she have a way to get there? 31 (70.45) 8 (18.18) 5 (11.36)
Does he/she have places nearby to do it? 24 (54.55) 14 (31.82) 6 (13.63)
Does he/she have a friend to go with? 25 (56.82) 14 (31.82) 5 (11.36)
Does he/she feel he/she is allowed to do it? 36 (81.82) 3 (6.82) 5 (11.36)
Does he/she know how to do it? 30 (68.18) 8 (18.18) 6 (11.36)
Does he/she feel welcome? 36 (81.82) 3 (6.82) 5 (11.36)
Does he/she feel like he/she is healthy enough to do it? 33 (75.00) 6 (13.64) 5 (11.36)
Does he/she feel like he/she deserves to have fun? 36 (81.82) 3 (6.82) 5 (11.36)
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Discussion

Leisure activity has been found to be associated with the quality of life, psychological well-being, and cognitive functioning of adults with DS and other types of IDD (e.g., Badia et al., 2013; García-Villamisar & Datillo, 2010; Lifshitz-Vahav et al., 2016; Mihaila et al., 2019). Yet, to-date, little is known about the type and level of leisure activity adults with DS currently engage in or the factors that promote and hinder these activities. Existing research on this topic has been limited by global ratings of leisure activity that generally gauge only frequency of participation (e.g., whether or not television was watched daily, but unclear if for 1 or 5 hours). The present study provides the first in-depth description of the daily leisure activity of middle-aged adults with DS as it spontaneously occurred in everyday life and identified factors (i.e., initiators, social partners, settings, and barriers) that facilitate and/or hinder participation in these activities.

We found that, on average, middle-aged adults with DS spent roughly 35 minutes/day participating in physical leisure, amounting to an average of 250 minutes of physical leisure a week. This finding suggests that middle-aged adults with DS (mean age 38 years) engage in more daily physical activity than previously reported in samples of older adults (aged 50+ years) with wide ranging types of IDD, for whom only 15% achieved recommended levels of physical activity (Hilgenkamp et al., 2012). It is likely that the higher level of physical activity in our sample reflects current lifespan stage (middle versus older adulthood) and differences in motor and physical functioning between DS and other types of IDD. However, it is important to note that only one third of middle-aged adults with DS achieved the recommended weekly amount of moderately intense physical activity. This indicates there is a need for interventions to focus on increasing the intensity, but not necessarily the duration, of physical leisure for middle-aged adults with DS.

On average, middle-aged adults with DS in the present study engaged in 66 minutes/day of social leisure. This is roughly 30 minutes/day more than the average time found in the general population (i.e., 39 minutes/day; United States Bureau of Labor Statistics, 2017) and amounts to nearly 8 hours of social leisure a week. In part, the high level of daily social leisure may be the result of middle-aged adults with DS being more dependent upon others than adults in the general population for daily activities, both at home (e.g., support staff, roommates, and family members) and at work (e.g., job coaches, supervisors, and support staff). As a result, middle-aged adults with DS may have increased opportunities to engage socially with others throughout the day relative to middle-aged adults in the general population.

The middle-aged adults with DS in our sample spent 1.25 hours/day, on average, in cognitively stimulating leisure. On average, the middle-aged adults with DS totaled nearly 9 hours of cognitively stimulating leisure per week. However, the average bulk of time spent in cognitively stimulating leisure each day involved computer and iPad games (M = 32 minutes), with less time spent reading (M = 13 minutes), writing (M = 7 minutes), and engaging in hobbies, such as assembling things (M = 4 minutes). As a result, cognitive engagement (attention, memory, and problem-solving) may have only been minimally required. It should be noted that more than half (n = 25, 56.82%) of the middle-aged adults with DS in the sample engaged in less than an hour of cognitively stimulating leisure each day.

The middle-aged adults with DS spent the greatest portion of leisure time each day (just under 2.5 hours/day) in passive leisure, including watching television. This finding is in line with research in the general population indicating that adults consume roughly 2–3 hours of television per day (Dempsey et al., 2014). In our sample, 22.73% of middle-aged adults with DS (n = 10) exceeded 3 hours/day of passive leisure.

In contrast to our hypothesis, across all domains of leisure activity (i.e., physical, social, cognitively stimulating, and passive), middle-aged adults with DS self-initiated the greatest portion of their leisure activity. This may be a result of established routines built into their day-to-day lives. In reviewing the daily diary entries, most of the leisure activities appeared to be part of established routines (e.g., going on walk every other afternoon at 3pm). Similarly, middle-aged adults with DS most often engaged in physical, cognitively stimulating, and passive leisure activity on their own, without a social partner. Thus, to promote adaptive leisure activity, caregivers should assist the middle-aged adult with DS in establishing leisure activity in their daily or weekly schedules such that over time, these activities become part of their routine and are self-initiated.

In line with our hypothesis and previous research (e.g., Buttimer & Tierney, 2005), we found that family was the second most common initiator of leisure activity for middle-aged adults with DS who lived with family. This was found across all domains of leisure, except physical leisure. Similarly, when middle-aged adults with DS had a social partner in social and passive leisure activity, among those who lived with family it was most often a family member. Notably, family members appeared to facilitate social leisure most often. Yet, in addition to engaging in adaptive domains of leisure, family members were also social partners in passive leisure over 25% of the time. Thus, to promote psychological and physical well-being, it may be useful for educational interventions to strive to find ways to encourage family members to spend leisure time together engaging in more physical, social, and cognitively stimulating leisure activities, as opposed to watching television. Family did not play as strong of a role in initiating and being the social partner of leisure for middle-aged adults with DS who did not reside with family; thus to promote leisure activity in this subgroup, interventions may need to focus more on increasing the involvement of staff and friends.

In contrast to our hypothesis, family and support staff were equally likely to initiate the physical leisure of middle-aged adults with DS. This finding was also true for the subsample of middle-aged adults with DS not residing with family. Furthermore, family, friends, and support staff were social partners in physical leisure an equal percent of the time, and this remained the case for the subgroup of middle-aged adults with DS not residing with family. Thus in contrast to findings that family serve as the primary initiator and social partner of leisure activity for adolescents and young adults with IDD (Buttimer & Tierney, 2005), staff and/or friends may take on a greater role in facilitating and participating in the physical leisure activity of adults with DS during middle adulthood. Support staff focused the bulk of their leisure time with middle-aged adults with DS on initiating physical leisure, above all other leisure domains. Similarly, support staff partnered in physical leisure more often than all other leisure domains. Thus, increasing support staff time may have the potential to enhance the physical leisure of middle-aged adults with DS.

Finally, in terms of setting, the physical leisure of middle-aged adults with DS occurred more often in the community than in the home. This finding suggests that access to community-based physical leisure (e.g., joining the YMCA or basketball teams) may be increasingly available to adults with DS in comparison to earlier studies (Hall & Hewson, 2006). However, a focus on community-based (as opposed to home-based) physical leisure may also limit physical leisure participation, because it is contingent upon transportation. Additionally, our findings indicate that there is a need for community-based physical leisure activities (e.g., basketball teams) to increase the physical intensity of activities, given that most middle-aged adults with DS were not achieving weekly recommended levels of moderately-intensive activity. It also seems important to create more opportunities for home-based physical leisure (e.g., stationary bike) to enhance daily physical activity levels.

In our sample of middle-aged adults with DS, social leisure activity occurred equally in the home and in the community. In contrast, cognitively stimulating and passive leisure both occurred most frequently in the home. Services should further target the removal of barriers (such as transportation) that prevent these domains of leisure activity from occurring in the community. Indeed, many caregivers reported that the middle-aged adults with DS did not have a way to get to leisure activities or places nearby to participate.

The present study has several strengths. Due to its 7-day daily diary design, it was possible to capture a snapshot of daily leisure activity across a typical week for middle-aged adults with DS. In addition, detailed information regarding the initiator, social partner, and setting of each leisure activity, was obtained. There were also limitations to the present study. Our sample was restricted to middle-aged adults with DS with a mental age equivalent of greater than 3 years, and thus findings may not generalize to middle-aged adults with DS with severe or profound intellectual disability. Moreover, our sample predominately involved middle-aged adults with DS who resided with family. While residence (with family vs. other) was not associated with average daily time spent in leisure activity, the caregivers in our sample were relatively young and healthy, perhaps enabling them to be more involved in the leisure activity of middle-aged adults with DS both residing and not residing with family. It is unclear if family would continue to play as strong of a role in older samples of middle-aged adults with DS or in samples of middle-aged adults with DS with more diverse living situations. It is also important to note that social desirability may have contributed to middle-aged adults with DS and caregivers inaccurately reporting time spent in less preferable leisure activities (e.g., watching television) or over-reporting time spent in more preferable leisure activities (e.g., exercise). However, average level daily levels of leisure activity were used in analyses, which have been found to have good validity in time-use diary studies (Gershuny et al., 2017; Robinson, 2002). Finally, our sample did not account for cultural variability; it is likely that daily leisure activity patterns differ in other parts of the world that place value on different domains of leisure participation.

Middle-aged adults with DS are more likely to be unemployed and to work fewer hours when employed compared to middle-aged adults in the general population (Kumin & Schoenbrodt, 2016). Thus, future studies should compare the leisure activity of middle-aged adults with DS to middle-aged adults with other types of IDD as they may provide a better comparison group. In the current sample there were not significant differences in time spent in physical (t(42) = −1.18, p = .09), cognitively stimulating (t(42) = −0.61, p = .39), or passive (t(42) = 0.86, p = .54) leisure activity between middle-aged adults with DS who had full versus less than full-time employment. However, there was a significant difference in time spent in social (t(41) = 0.87, p < .01) leisure activity. Middle-aged adults with DS who were employed full-time reported engaging in more social leisure than those who were employed less than full time. Thus, it is possible that full-time employment provides opportunities for developing friendships that spill over into after-work activities. Replicating these results and further understanding the proportion of each day (versus actual time) spent engaging in each leisure domain is an important next step for research with adults with DS. Furthermore, future research should consider whether job type/role has implications for leisure activity. For example, middle-aged adults with DS with jobs that provide more opportunities for social interaction (e.g., greeter) may have more opportunities to develop friendships that continue outside of work than adults with DS with jobs that are more isolated in nature (e.g., piece work at a sheltered workshop). Finally, future longitudinal studies research should employ daily diary methods to examine the contribution of leisure activity (social, physical, cognitive stimulating, and passive) to optimal aging across physical and cognitive health, and quality of life, for middle-aged adults with DS.

In summary, the present study is one of the first to provide an in-depth description of the daily leisure activity of middle-aged adults with DS. Findings indicate that the majority of middle-aged adults with DS were not meeting established physical leisure activity recommendations and were generally engaged in low levels of cognitively stimulating leisure. Middle-aged adults with DS appeared to engage in a similar level of passive leisure activity (i.e., television watching) as adults in the general population. Social leisure appeared to be a relative area of strength for middle-aged adults with DS. Middle-aged adults with DS self-initiated and self-engaged in the majority of their leisure activity, suggesting that many leisure activities are part of established routines. Family members focused on increasing social leisure while support staff focused on encouraging physical leisure. Interventions and support services should consider using routines to promote leisure activity participation for middle-aged adults with DS.

Acknowledgments

This study was funded by the National Institute on Aging (R01 AG031110 to B. Handen and B. Christian; U01 AG15001 to B. Christian, B. Handen, and W. Klunk) and the National Institute on Child Health and Human Development (U54HD090256 to A. Messing). We thank our team of collaborators and the families who generously participated in this study.

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