Recruitment and Measurement Challenges and Future Solutions

Recruitment of residents in the EIT-4-BPSD study required that residents have evidence of at least one behavioral symptom noted by staff in the past month. Even with this inclusion criteria 25% of the sample had no behavioral symptoms at baseline based on the Cornell Scale for Depression in Dementia, the Cohen-Mansfield Agitation Inventory, the Resistance to Care Scale, Pain in Advanced Dementia Scale, and Quality of Life in Late-stage Dementia Scale. Further, settings had good quality of care. Challenges to recruitment included the lack of willingness of residents with significant behavioral symptoms to assent to participate and legally authorized representatives to consent. Challenges to measurement included recall by staff and assumptions that behavioral symptoms were normal, short observation periods, and resident inability to provide input. Future solutions include some revisions in measures that will be described, longer assessment periods, and elimination of requirements that make recruitment of this population difficult.

Gastrointestinal problems are associated with increased repetitive behaviors but not social communication difficulties in young children with autism spectrum disorders

Individuals with autism spectrum disorder are more likely than typically developing individuals to experience a range of gastrointestinal abnormalities, including chronic diarrhea, constipation, food sensitivities, and abdominal pain. These gastrointestinal symptoms have been associated with higher levels of irritability and aggressive behavior, but less is known about their relationship with core autism spectrum disorder symptoms. We investigated the relationship between autism spectrum disorder and gastrointestinal symptom severity while accounting for three associated behavioral symptom domains (Irritability, Aggressiveness, and Specific Fears), in a sample of 176 children (140 males and 36 females) ages 2–7 years old with autism spectrum disorder. Most participants had at least one reported gastrointestinal symptom (93.2%) and had more than one gastrointestinal symptom (88.1%). After accounting for each associated behavioral symptom domain, repetitive behaviors and stereotypies were positively associated with gastrointestinal symptom severity. Social and communication difficulties were not significantly associated with gastrointestinal symptom severity after accounting for associated behavioral symptoms. Our findings replicate a previously described association between irritability and aggression and gastrointestinal symptoms. Furthermore, gastrointestinal symptom severity is associated with repetitive behaviors, a subset of core autism spectrum disorder symptoms. This suggests that gastrointestinal symptoms may exacerbate repetitive behaviors, or vice versa, independent from other associated behavioral symptoms. Lay Abstract Individuals with autism spectrum disorder are more likely than typically developing individuals to experience a range of gastrointestinal abnormalities, including chronic diarrhea, constipation, food sensitivities, and abdominal pain. These gastrointestinal symptoms have been associated with higher levels of irritability and aggressive behavior, but less is known about their relationship with core autism spectrum disorder symptoms. We investigated the relationship between autism spectrum disorder symptom severity and gastrointestinal symptoms while accounting for three associated behavioral symptom domains (Irritability, Aggressiveness, and Specific Fears), in a sample of 176 children (140 males and 36 females) ages 2–7 years old with autism spectrum disorder. A large majority (93.2%) of the sample had at least one reported gastrointestinal symptom, and most (88.1%) participants had more than one gastrointestinal symptom. Various types of gastrointestinal symptoms were reported; the most common symptoms reported were constipation, food limits, gas/bloating, and stomach pain. After accounting for each associated behavioral symptom domain, repetitive behaviors and stereotypies were significantly associated with gastrointestinal symptom severity. Increased severity of autism spectrum disorder symptoms was correlated with increased gastrointestinal symptom severity. Social and communication difficulties were not significantly associated with gastrointestinal symptom severity after accounting for associated behavioral symptoms. Our findings replicate a previously described association between irritability and aggression and gastrointestinal symptoms. Furthermore, we found that repetitive behaviors, but not social or communication symptoms, are associated with gastrointestinal symptom severity, even after accounting for associated behavioral symptoms. This suggests that gastrointestinal symptoms may exacerbate repetitive behaviors, or vice versa, independent from other associated behavioral symptoms.

Effectiveness of “Reducing Disability in Alzheimer’s Disease” Among Dyads With Moderate Dementia

Replications of evidence-based dementia care receiver–caregiver dyad interventions in the community are scarce. We aimed to assess the effectiveness of the Kansas City implementation of Reducing Disability in Alzheimer’s Disease (RDAD) among a convenience sample of dyads with moderate dementia, which addressed needs identified by nine participating community agencies. We hypothesized that dyads’ mental health and physical activity outcomes would improve from baseline to end-of-treatment. The final analytic sample included 66 dyads. Outcomes improved ( p < .01) from pre- to post-intervention: behavioral symptom severity (range 0–36) decreased from 11.3 to 8.6, physical activity increased from 125.0 to 190.0 min/week, caregiver unmet needs (range 0–34) decreased from 10.6 to 5.6, caregiver behavioral symptom distress (0–60) decreased from 15.5 to 10.4, and caregiver strain (0–26) decreased from 11.1 to 9.7. This adapted implementation of RDAD leads to clinically meaningful improvements and might inform scaling-up.

Effectiveness of “Reducing Disability in Alzheimer’s Disease” among dyads with moderate dementia

Interventions such as Reducing Disability in Alzheimer’s Disease (RDAD) improve the health of care receiver-caregiver dyads but plans to implement it locally in regional community agencies yielded three changes: 1) reduced reliance on licensed clinicians, 2) centralized exercise interventionists and 3) more flexible delivery. We aimed to assess the effectiveness of the Kansas City RDAD implementation (RDAD-KC) among a non-probabilistic sample of dyads with moderate dementia, which addressed these changes. We hypothesized that dyads’ health would improve from baseline to the end-of-treatment. Outcomes improved (p<0.01) from pre to post-intervention: Behavioral symptom severity (range 0-36) decreased from 11.3 to 8.6, physical activity increased from 125.0 to 190.0 minutes/week, caregiver unmet needs (range 0-34) decreased from 10.6 to 5.6, caregiver behavioral symptom distress (0-60) decreased from 15.5 to 10.4 and caregiver strain (0-26) decreased from 11.1 to 9.7. This adapted implementation of RDAD leads to clinically meaningful improvements and might inform scaling-up.