key: cord-0877931-lum5tahf
authors: Hartley, Sigan L.; Fleming, Victoria; Piro-Gambetti, Brianna; Cohen, Annie; Ances, Beau M.; Yassa, Michael A.; Brickman, Adam M.; Handen, Benjamin L.; Head, Elizabeth; Mapstone, Mark E.; Christian, Bradley T.; Lott, Ira T.; Doran, Eric; Zaman, Shahid; Krinsky-McHale, Sharon; Schmitt, Fredrick A.; Hom, Christy; Schupf, Nicole
title: Impact of the COVID 19 Pandemic on Daily Life, Mood and Behavior of Adults with Down Syndrome
date: 2022-02-17
journal: Disabil Health J
DOI: 10.1016/j.dhjo.2022.101278
sha: 29efab5768e5320441020afada209504096e63ef
doc_id: 877931
cord_uid: lum5tahf

BACKGROUND: The Down syndrome population has been disproportionately affected by Coronavirus 2019 (COVID-19) in terms of experiencing severe illness and death. Societal efforts to curb the spread of COVID-19 may also have taken a heavy toll on the daily lives of individuals with Down syndrome. OBJECTIVE/HYPOTHESIS: The goal of the study was to understand how the COVID-19 pandemic has altered daily life (including residence, employment, and participation in adult disability day programs) and influenced the mood and behavior of adults with Down syndrome. METHODS: Between September 2020 and February 2021, caregivers of 171 adults with Down syndrome (aged 22 -66 years) located across the United States and in the United Kingdom enrolled in the Alzheimer’s Biomarker Research Consortium - Down syndrome (ABC-DS) completed a survey. RESULTS: The residence of 17% of individuals was altered and 89% of those who had been employed stopped working during the pandemic. One-third (33%) of individuals were reported to be more irritable or easily angered, 52% were reported to be more anxious, and 41% were reported to be more sad/depressed/unhappy relative to pre-pandemic. The majority of changes in mood and behavior were of modest severity. CONCLUSIONS: The COVID-19 pandemic has had widespread effects on the daily life and mood and behavior of adults with Down syndrome. In the short-term, caregivers and providers should be prepared to help adults with Down syndrome with changes in daily routines, residence, employment, or adult disability day programs as society shifts away from COVID-19 safety protocols.

Adults with Down Syndrome 28

The world has experienced unprecedented challenges following the outbreak of a novel 29 corona virus named Coronavirus 2019 . COVID-19 is highly contagious and often 30 leads to a severe respiratory condition with risk of morbidity and mortality. COVID-19 was 31 declared a pandemic by the World Health Organization in March 2020. By summer 2021, 219 32 million individuals worldwide had contracted COVID-19 and 4.5 million had died from the virus 1 . 33

Societal efforts to curb the spread of the virus have led to vast changes in daily life and taken a 34 tremendous emotional toll on society 2,3 . Some groups, including adults with Down syndrome 35 (DS), have been disproportionally affected by . DS is the leading genetic cause of 36 intellectual disability (1 in 1,000 worldwide) and is due to full or partial third copy of chromosome 37 21 4 . Relative to the general population, adults with DS are more likely to have severe illness 38 and die from 6 . Societal efforts to curb the spread of COVID-19 may also have taken 39 a particularly heavy toll on the daily lives of adults with DS, given reliance on disability services 40 and the cognitive and behavioral phenotypes of DS. The goal of the current study was to 41 understand how the COVID-19 pandemic altered daily life and influenced the mood and 42 behavior of adults with DS. 43

Adults with DS are vulnerable to the COVID-19 virus. Adults with DS over the age of 40 44 years are four times more likely to be hospitalized, and ten times more likely to die from COVID-45 19 than same-aged adults in the general population 2,3 . In part, this heightened risk for severe 46 illness from COVID-19 in DS is thought to be caused by immune dysregulation associated with 47 trisomy 21, which may exacerbate the consequences of severe respiratory illnesses 7 . Adults 48 with DS are also thought to be at high-risk for severe illness from COVID-19 because of co-49 occurring medical conditions, 8 including obesity, cardiovascular conditions, diabetes, endocrine 50 conditions, obstructive sleep apnea, and Alzheimer's disease, 9,10 all of which are themselves 51 associated with severe illness and death from 12, 13 . 52

Adults with DS, as well as those with other types of intellectual and developmental 53 disabilities, are faced with unique challenges above and beyond those of adults in the general 54 population from societal efforts to curb the spread of COVID-19. For example, federal and state 55 mandates for quarantining and social distancing likely led to reductions in disability programs 56 that adults with DS normally rely on. Moreover, adults with DS are often not able to benefit from 57 telehealth or virtual services to the same extent as their non-DS peers given communication, 58 sensory, and cognitive difficulties or reduced access to technology 14, 15 . Employment common 59 for adults with DS, such as janitorial work, filing/shredding, and assembly work 16 cannot easily 60 be done remotely, which may have led to temporary or permanent lay-offs. In addition, not all 61 adults with DS can adhere to COVID-19 safety procedures, including wearing masks due to 62 medical or sensory issues, further reducing opportunities to be in the community and interact 63 socially. For adults with DS who could wear them, masks may have contributed to 64 communication problems (e.g., muffled speech and obscured lip reading), as expressive 65 language and pronunciation are areas of relative weakness in DS 17 . Moreover, hearing deficits 66 occur in up to 80-90% of individuals with DS 18 which may make it difficult to understand 67 conversational partners who wear masks. Adding to challenges, there is a 90% lifetime risk of 68

Alzheimer's disease in DS, 19 with declines in memory, attention, and executive functioning 69 beginning in middle adulthood (40s and 50s) 20,21 . These declines may add to the difficulty of 70 adjusting to pandemic-related changes. 71

Daily life changes caused by the COVID-19 pandemic as well as new stressors brought 72 on by the pandemic, may have consequences for the mood and behavior of adults with DS. As 73 a group, adults with DS have a high prevalence of mood and behavior problems, 22, 23 with 74 depressive and anxiety symptoms especially common 24,25 . The pandemic may have led to new 75 worries (e.g., concerns about oneself or loved ones contracting the virus), stressors (e.g., 76

moving, new routines, and distressing news), as well as sadness from losing loved ones from 77 the virus. The pandemic may also have reduced activities important for mood and behavior 78 J o u r n a l P r e -p r o o f regulation and overall health including exercise and time spent outdoors, given that these 79 activities are often fostered by disability programs 26 . 80

The goal of the present study was to determine how the COVID-19 pandemic has 81 affected daily life and the mood and behavior of adults with DS. In total, caregivers of 171 adults 82 with DS (aged 27-66 years) in the United States and the United Kingdom completed a survey to 83 report changes in residence, employment and adult disability programs, as well as daily 84

activities (e.g., time outside and physical activity). Caregivers also reported on changes in mood 85 and behavior since the pandemic began. This information will help caregivers and providers 86 identify interventions and services to address pandemic-related negative impacts in the short-87 term, and to consider their consequences for the longer-term aging of this population. analyses, resulting in 171 completed surveys This selected sample represents 55% of the ABC-105 DS sample (n=312). These adults with DS were younger (t (170) = 2.13, p <.001) and less likely 106

to have an clinical status of Alzheimer's disease (χ2 = 12.57, p =.002) pre-pandemic than those 107 in the larger ABC-DS sample, but did not significantly differ in race/ethnicity (χ2 = 2.93, p 108 =.233), biological sex (χ2 = 0.69, p =.405), premorbid intellectual disability level (χ2 = 2.92, p 109 =.234), pre-pandemic residence (χ2 = 2.29, p =.318), or number of physical health conditions (t 110 (170) = 1.09, p = .278). 111

Socio-demographics. Caregivers reported on the adult with DS's age (years), 113 biological sex (males = 1, females = 2), and race/ethnicity (white/non-Hispanic, Hispanic, 114

African-American, Asian, Pacific Islander, Native American, and multiple race/ethnicity). 115

Caregivers also rated the amount of time they spent with the adult with DS (<1 hours/week, 1-5 116 hours/week, 6-10 hours/week, 11-20 hours/week, and 21+ hours/week) and their relationship 117 (parent, sibling or other family, paid caregiver, or other). Remaining socio-demographics were 118 collected from the ABC-DS study during a visit that occurred an average of 11 months (SD 119 =6.21, range: 4-19 months) prior to the current study. Level of intellectual disability of the adult 120 with DS was coded as mild, moderate, or severe based on IQ tests 27 or medical records. If the 121 adult with DS had dementia, their IQ prior to onset of dementia (premorbid) was used. 122

Information on the adult with DS' health included caregiver-reported presence of hyper or hypo-123 tension, thyroid condition, obstructive sleep apnea, and psychiatric conditions requiring 124 medication. Body-mass-index was calculated from the weight in kilograms divided by height in 125 meters squared. 126

Clinical status related to Alzheimer's disease was also obtained from the previous ABC- 

Items were screened for outliers (>3 standard deviations from mean), normal distribution 149 of data (Skew: -1 and 1; Kurtosis: -2 and 2), and homoscedasticity. All data were within normal 150 limits by these criteria. Descriptive statistics (frequencies, means, and standard deviations) were 151 used to understand how common daily life impacts and changes in mood and behavior were in 152 our sample. 153

Approximately one-half of adults with DS were female (n=86, 50%) and the majority 156 (n=139, 81%) were Caucasian, non-Hispanic. Adults with DS were aged 27-66 years (M = 157 41.58, SD = 9.13) and 46% (n=79) had mild intellectual disability. The majority of caregivers 158 were family (n=150, 88%) and interacted with the adult with DS at least 10 hours per week (n = 159 148, 87%). Prior to the pandemic, adults most commonly lived with family (n=80, 47%) or in a 160 group home (n=61, 36%). The majority of adults with DS (n=120, 70%) were cognitively stable, 161

whereas 9 (5%) had mild cognitive impairment, 8 (5%) had dementia, and the clinical status was 162 unknown for 34 (20%) adults. Sixty-seven adults had been diagnosed with obstructive sleep 163 apnea (39%), fifty-nine (35%) had a thyroid condition and 17 (10%) had hyper-or hypo-tension. 164

Thirty-eight (22%) were on an antipsychotic or mood stabilizer for a psychiatric condition and 76 165 (44%) were obese. 166

Four adults with DS (2%) had tested positive for COVID-19, 2 (1%) tested positive for 168 COVID-19 antibodies, and 7 (4%) were suspected of having COVID-19 but had not been tested. 169

The remaining 160 (94%) adults had not had COVID-19 to the caregiver's knowledge. 170

As a result of the pandemic, 14 (8%) adults with DS moved to a different residence; all 172 involved leaving a group home or independent living situation to live with family. Another 15 173 (9%) experienced change in who was living in their residence, most often involving roommates 174 moving out of the group home or apartment (Figure 1a ). Remaining adults (n=142, 83%) had 175 not experienced a residence change. As shown in Figure 1b , change in family, staff, or 176 household contacts due to the pandemic were reported to be 'slightly' or 'moderately' stressful 177 for 94 (54%) adults with DS and 'very' to 'extremely' stressful for 27 (16%) adults with DS. 178

Forty-four (26%) adults with DS were not employed prior to the pandemic and this did 180 not change during the pandemic. Of the 127 adults employed prior to the pandemic, 14 (8%) 181 J o u r n a l P r e -p r o o f continued to work and 113 (89%) stopped working. Of those who stopped work, 62 (49%) 182 reported this was a temporary break, whereas 11 (9%) reported this was a permeant job loss, 183 and the remaining 40 (31%) were not sure if it was a temporary break or permanent loss ( Figure  184 2a). Of the 82 adults who attended an adult disability day program prior to the pandemic, 13 185 (16%) continued to attend and 69 (84%) stopped attending for at least a period of time ( Figure  186 2b). Change in employment or in participation in adult disability day programs due to the 187 pandemic were reported to be 'slightly to 'moderately' stressful for 87 (51%) adults and 'very' to 188 'extremely' stressful to 35 (20%) of the adults (Figure 2c) . 189

The majority of adults with DS were reported to engage in exercise that elevated heart 191 rate and breathing for at least 30 minutes 3 days a week or more (n=94, 55%). More than one-192 third of adults engaged in either no exercise (n=35; 20%) or exercised only 1 to 2 days (n=40, 193 23%) a week (Figure 3a ). Less than one-fifth (n=39, 23%) of adults were reported to spend time 194 outside daily. The remaining adults spent time outside on no days (n=30, 18%), 1-2 days (n = 195 43, 25%), 3-4 days (n=31, 18%) or 5-6 days (n=24, 14%) per week (Figure 3b) . 196

Compared with prior to the pandemic, 50 (29%) adults with DS were reported to be 198 'slightly' or 'somewhat' more irritable or easily angered and an additional 4% (n=7) were 'a lot' or 199 'extremely more' irritable or easily angered (Figure 4a ). The majority of adults were reported to 200 have had no change in irritability (n=106, 62%). Compared with prior to the pandemic, 76 (44% 201 adults experienced 'slightly' or 'somewhat' more anxiety, and 12 (8%) experienced 'a lot' to 202 'extremely' more anxiety relative to pre-pandemic. The other half (n=74, 43%) experienced no 203 global change in anxiety or increases in anxious were not known (n=9, 5%) (Figure 4b) . 204

Compared with prior to the pandemic, 70 (41%) adults were reported to be 'slightly' to 'a lot' 205 more sad/depressed/unhappy during the pandemic (Figure 4c ). In contrast, 19 (12%) adults 206 were reported to be 'slightly' to 'a lot' more cheerful/happy relative to pre-pandemic. Remaining 207 J o u r n a l P r e -p r o o f adults (n=78, 46%) had no change in mood (happiness vs. sadness) since the pandemic began. 208

Changes in daily routines related to COVID-19 safety (e.g., masks and staying six feet apart) 209 caused 'slight' or 'moderate' anxiety and stress in half (n=87; 51%) the adults and 'very' or 210 'extreme' anxiety in 19 (11%) adults (Figure 4d) . 211

During the past month, 20 (11%) adults with DS were reported to have 'fairly bad' to 213 'very bad' quality of sleep. Remaining adults had 'fairly good' (n=66, 39%) to 'very good' (n=79, 214 46%) quality of sleep. Nineteen (11%) adults had taken medication to help them sleep at least 215 once in the past month. About one-fourth (n=42, 24%) had trouble staying awake while being 216 driven, eating meals or during social interactions at least once in the past month. Overall, 70 217 (41%) adults were reported to have problems getting enough enthusiasm to get things done, 218 with most indicating this was 'only a very slight problem' or 'somewhat of a problem' (n=64, 219 37%) as opposed to 'very big problem' (n=6, 4%). 220

Adults with DS have been disproportionately affected by the COVID-19 virus in terms of 222 experiencing severe illness and death at a younger age compared to the non-DS population 2,5,6 . 223

The current study sought to understand how the COVID-19 pandemic and societal efforts to 224 curb the spread of the virus also affected the daily life and mood and behavior of adults with DS. 225

This information is critical for informing interventions to address pandemic-related effects in the 226 short-term, and to anticipate longer-term effects on aging in DS in the years to come. 227

Overall, the COVID-19 pandemic has had widespread consequences for the living 228 situation, employment, and adult day programs of adults with DS. The pandemic necessitated a 229 change in residence or in housemates for 17% of our sample. There is an important need to 230 develop plans for eventually transitioning this subset of adults back to pre-pandemic residential 231 situations or to identify new permanent residences. Similarly, the majority of adults with DS will 232 need assistance in the transition back to employment, as 89% of those who had been employed 233 J o u r n a l P r e -p r o o f prior to the pandemic stopped working. This was reported to be a permanent job loss for 9% of 234 adults and 31% were not sure if this was a temporary break or permanent loss. Breaks in 235 employment (temporary or permanent) are likely to necessitate job re-training and assistance 236 with job placements in the coming months to years. 237

There will similarly be a need to assist adults with DS in transitions back to adult 238 disability day programs, which may also require re-training and increased staffing. Of the adults 239 with DS who had been involved in adult day programs, 84% stopped attending during the 240 pandemic. Changes in employment or adult disability day programs due to the pandemic were 241 reported to be 'slightly' to 'moderately' stressful for 51% of adults with DS and 'very to Mood and behavior problems are already elevated in DS, 36 and our findings suggest that 259 these problems grew during the pandemic. One-third of adults with DS (33%) were reported to 260 be more irritable or easily angered, about half (52%) were more anxious, and two-fifths (41%) 261 were more sad/depressed/unhappy relative to pre-pandemic. These findings are consistent with 262 previous reports from studies of caregivers of adults with intellectual disability due to a variety of 263 etiologies that the majority of adults experienced new stress and anxiety 37. These changes were 264 at a slight or moderate level in most cases but severe for a marked subset (3-8%). This is 265 concerning given the already high level of mood and behavior problems in adults with DS and 266 because this population is underserved by the mental health system 38 . Increases in mood and 267 behavior problems could interfere with the adult with DS's ability to integrate back into 268 employment and adult disability day programs. 39 Moreover, these increased problems could 269 contribute to caregiver burnout, especially given that caregivers have little respite from 270 caregiving during the pandemic due to loss of employment and adult day programs for the adult 271 with DS 37 . Thus, it is important to ensure caregiver mental health is addressed. Changes in daily 272 routines related to COVID-19 safety caused slight to moderate anxiety and stress in half (51%) 273 of adults, and severe increases in stress and anxiety in 11% of adults. The changing nature of 274 COVID-19 (e.g., new variants) may mean that these originally acute stressors are now chronic 275 and will increasingly tax the mental health of adults with DS. There was evidence of 'silver linings' from the pandemic. A subset (13%) of adults with 288 DS were reported to be 'slightly' to 'a lot' more cheerful or happy relative to before the 289 pandemic. Open-ended caregiver comments indicated that increases in positive mood were 290 related to time away from employment or disability day program stressors and/or breaks from 291 roommates. Caregivers also reported benefits from spending more time with family during the 292 pandemic, which has also been reported in interviews of caregivers of adults with other types of 293 intellectual and developmental disalibities 37 294

The current study had strengths and limitations. The study included adults with DS from 295 across the U.S. and the United Kingdom. Caregivers reported on face-valid questions that had a 296 clear time anchor (e.g., March 2020) for the pandemic. That said, the study used a convenience 297 sample from the ABC-DS and is not representative of adults with DS not willing/able to 298 participate in longitudinal research. This convenience sample was younger and less likely to 299 have a clinical status of Alzheimer's disease than what was true for the full ABC-DS cohort. 300

Moreover, few adults with DS had tested positive for COVID-19. Shifts in daily life, mood, and 301 behavior may have been more severe for older adults and demented adults with DS and/or 302 those who contracted the virus. The study is also limited in that caregivers responded to 303 questions about behaviors and mood 'on average' across several months. This strategy 304 captured global COVID-19 effects, but obscured severe temporary changes. Indeed, in an 305 open-ended question asking for any additional comments, several caregivers reported that 306 increases in worrying, stress, and anxiety were greatest in spring of 2020 and fluctuated in 307 response to risk level, news, and vaccine rollout. Our discussion of results often focused on the 308 prevalence of adults with DS affected (grouped: 'slightly' and 'moderately') and very affected 309 (grouped: 'a lot' and 'extremely'). This strategy may minimize differences among the grouped 310 response options and/or exaggerate differences between groupings. Finally, the clinical status 311 and physical health of adults with DS was from a previous ABC-DS study visit and could have 312 changed (average interim 11 months) between that visit and current study. 313

In conclusion, the COVID-19 pandemic has altered the daily life, mood, and behavior of 314 adults with DS. In the short-term, adults with DS need assistance managing changes in their 315 daily routines, residence, employment, and adult disability day programs and to prepare for 316 further transitions in these domains when society shifts out of the pandemic. Interventions are 317 needed to alleviate increases in stress, anxiety, irritability/anger, and sadness/depression from 318 the pandemic in adults with DS. There is also a need to support caregivers. Strategies for 319 promoting exercise, time outside, and good sleep are needed given longstanding concerns in 320 these areas, which may have been exacerbated by the pandemic. In the long-term, researchers Meddicine, 53, 786-804. doi: 10.1080 /07853890.2021 .1922743. 470 38. Whittle, E.L., Fisher, K.R., Reppermund, S., Lenroot, R., Troller, J. (2018 . Barriers 

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Less than 1 hour/week 1-5 hours/week 6-10 hours/week 11-20 hours/week More than 20 hours/week 3 (2%) 9 (7%) 11 (6%) 17 (10%) 131 (77%) Note. COVID-19 incidence rate is based on 7 days per 100,000 for region from August 2020-Feburary 2021. Obesity defined as body-mass-index >30.0.