The relationship between levels of mood, interest and pleasure and 'challenging behaviour' in adults with severe and profound intellectual disability

Background Research on affective disorders in adults with intellectual disability (ID) suggests that depression may not present a ‘classic picture’ in individuals with severe and profound ID, but may include challenging behaviours, which are referred to as ‘atypical symptoms’, such as self‐injury, aggression and irritability. The aim of the present study was to explore whether there is an association between constructs relating closely to the core symptoms of depression and challenging behaviours in adults with severe and profound ID. Method Mood and levels of interest and pleasure were measured in 53 adults with severe or pro‐found ID using the Mood, Interest and Pleasure Questionnaire (MIPQ). Results Two groups of adults were identified based on MIPQ scores: (1) a ‘low mood’ group (lowest score = 12); and (2) a comparison group (highest scoring = 12). The groups were clearly differentiated on the MIPQ (P < 0.0001), but were comparable on age, gender and medication use. The Challenging Behaviour Interview showed no difference between the two groups in self‐injury, aggression or disrupting the environment. A secondary analysis revealed that participants who showed challenging behaviour scored significantly lower on the MIPQ than those who did not show challenging behaviour. Conclusions Possible reasons for these results and considerations for future studies are discussed.     

Use of the Interact Short Form as a tool to evaluate emotion of people with profound intellectual disabilities

Background One of the essential purposes of intervention programmes for people with profound intellectual disabilities (ID) is to enhance the desirable mood and behaviour and decrease the undesirable ones through stabilizing their emotion. There is lack of validated instrument to offer a comprehensive measure that covers the mood and behaviour, both desirable and undesirable, appropriate for people with profound ID. Method This study aimed to examine the validity and reliability of the Interact Short Form for evaluating the mood and behaviour of people with profound ID, and at the same time, review their emotional profile using the Interact Short Form. Both content validity using expert panel review and construct validity by means of factor analysis were investigated. A total of 75 people with profound ID were recruited. Inter‐rater reliability was tested. The results of the Interact Short Form were described to reflect the emotional profile of this group of participants. Results Using the results of expert panel review and those from factor analysis, we found three subscales representing the mood and behaviour of people with profound ID. They were: ‘emotional expression’, ‘interests towards tasks’ and ‘behaviours to environment’. All three subscales were found to be internally consistent (α = 0.71–0.88). The Interact Short Form– People with profound ID version also showed good inter‐rater reliability (mean = 0.72). The results of the Interact Short Form showed that this group of participants had fairly stable emotion under the structured setting and activities in the residential institutions where data were collected. Conclusions The Interact Short Form– People with profound ID version serves as a helpful tool for both clinical and research use in assessing the mood and behaviour of people with profound ID in a simple, comprehensive and systematic way.     

An Exploratory Factor Analysis and Construct Validity of the Resident Choice Assessment Scale With Paid Carers of Adults With Intellectual Disabilities and Challenging Behavior in Community Settings

Introduction: The Resident Choice Assessment Scale (RCAS) is used to assess choice availability for adults with intellectual disabilities (ID). The aim of the study was to explore the factor structure, construct validity, and internal consistency of the measure in community settings to further validate this tool. Method: 108 paid carers of adults with ID living in supported accommodation and residential care facilities in urban, rural, and semirural areas in England completed the RCAS. Exploratory factor analyses were performed and the construct validity and internal consistency of the emerging factors were assessed. Results: Principal axis factoring with oblique rotations suggested a scale with two factors (Everyday Choices and Participation in Household Activities) which explained 45% of the variance; the factors showed favorable construct validity as they identified significant differences between those living in residential care homes compared with supported living; the factors also differentiated between people with different levels of intellectual impairment with less choice and participation in domestic activities for those with more severe ID compared to their counterparts with moderate and mild impairment. Five items did not load onto any factor, suggesting that these could be dropped from the scale when administered in community settings, thus resulting in an 18-item measure (RCAS-18). Conclusion: The RCAS-18 may provide a useful measure to assess choice availability for people with ID supported by paid carers in the community. The revised measure may be more suitable in capturing choice than the original version for use in community samples.     

Health status and use of medications by adults with intellectual disability in Western Australia

Background Evidence suggests that adults with intellectual disability (ID) are vulnerable to poor health outcomes. This paper describes the health status and medication use of adults with ID in Western Australia.

Method We conducted a cross-sectional survey by interview of 328 adults with ID (M age?=?37 years, range: 18–82) and their families/support persons (79% proxy or joint informants).

Results Although 90% of participants reported long-term health conditions (M?=?2.6, range: 0–10), including epilepsy, allergies, eczema, asthma, and mental health problems, three quarters of the participants (77%) described their health as good or very good. Younger participants (18–44 years) reported osteoporosis and stroke, conditions commonly associated with ageing, more often than the general population at those ages. Medication use was high, with 70% taking one or more medications (Mdn?=?3 medications, range: 0–21).

Conclusions Many participants reported that health problems affected their daily lives, yet the majority reported good health. Long-term health conditions were common and many people used several types of medications. Participants had poorer health than the Western Australian population overall. Careful monitoring of health conditions and regular review of medications are recommended to improve health outcomes for adults with ID.     

Psychiatric diagnoses in relation to severity of intellectual disability and challenging behaviors: a register study among older people

ABSTRACT

Objective: To investigate the possible association between severity of intellectual disability (ID) and presence of challenging behavior, respectively, on diagnoses of psychiatric disorders among older people with ID.

Methods: People with a diagnosis of ID in inpatient or specialist outpatient care in 2002–2012 were identified (n = 2147; 611 with mild ID, 285 with moderate ID, 255 with severe or profound ID, and 996 with other/unspecified ID). Moreover, using impairment of behavior as a proxy for challenging behavior, 627 people with, and 1514 without such behavior were identified.

Results: Severe/profound ID was associated with lower odds of diagnoses of psychotic, affective, and anxiety disorders than was mild/moderate ID. People with moderate ID had higher odds than those with mild ID of having diagnoses of affective disorders. Diagnoses of psychotic, affective, and anxiety disorders, and dementia were more common among people with challenging behavior than among those without.

Conclusions: People with severe/profound ID had lower odds of receiving psychiatric diagnoses than those with mild and moderate ID. Whether this is a result of differences in prevalence of disorders or diagnostic difficulties is unknown. Further, challenging behaviors were associated with diagnoses of psychiatric disorders. However, the nature of this association remains unclear.     

Environmental, medical, behavioural and disability factors associated with Helicobacter pylori infection in adults with intellectual disability

In institutionalized adults with intellectual disability (ID), Helicobacter pylori infection occurs at approximately twice the rate it appears in the general population, and it may be responsible for the twofold higher rates of peptic ulcer disease and gastric cancer in this population. Medical, behavioural and additional environmental factors, as well as level of ID, may be related to the risk of infection with H. pylori. One hundred and sixty‐eight adults with ID who were currently, had previously been or had never been institutionalized underwent a biopsychosocial evaluation. This included assessment of: level of ID using the Adaptive Behaviour Scale (ABS) Part I; levels of maladaptive behaviour using the ABS Part II; demographic, medical and environmental factors; as well as H. pylori tests using serology and faecal antigen. The overall rates of past or current infection with H. pylori in institutionalized and previously institutionalized participants were about twice that of the overall group of never‐institutionalized participants, i.e. 87% and 79% compared to 44%, respectively (P < 0.001). The rates of H. pylori infection appeared to increase with age in the never‐institutionalized group, but were consistently high across all ages in the other groups. The rate of infection was higher in those institutionalized for more than 5 years (95% versus 76%, P = 0.02), in those with flatmates with excessive oral secretions (65% versus 21%, P < 0.001) or faecal incontinence (67% versus 27%, P < 0.001), and in those with more chronic illness and medications. All mean domain scores of the ABS Part I (Intellectual Disability) were significantly lower (indicating more severe ID) in the group currently infected with H. pylori compared to their non‐infected counterparts. The majority of mean domain scores of the ABS Part II (Behaviour) were also worse, with half of these score differences reaching statistical significance in the currently infected group. The presence of alarm symptoms (e.g. vomiting, weight loss, haematemesis and melena), iron deficiency and body mass index were not significantly different in currently infected subjects. Adults with ID appear to be particularly at risk of infection with H. pylori. Environmental associations with infection include past or current institutionalization, a longer period of institutionalization, living with flatmates with excessive oral secretions and faecal incontinence. Medical associations include chronic disease and more medications, but not alarm symptoms or body mass index. Demographic associations may include increasing age in never‐institutionalized adults, but no age effect in currently or previously institutionalized individuals. Psychosocial associations include more severe ID and maladaptive behaviour with current infection.     

Persons with mild and moderate Alzheimer's disease use verbal-instruction technology to manage daily activities: Effects on performance and mood

Objective: To extend the evaluation of verbal-instruction technology for helping persons with mild and moderate Alzheimer's disease recapture daily activities and improve their mood.

Methods: Two studies targeted two activities (i.e. snack preparation/sharing and shaving) with six and three new participants, respectively. Intervention effects on activity performance were assessed through non-concurrent multiple baseline designs across participants. The impact of intervention (activity) on mood was assessed by recording indices of happiness or indices of unhappiness during activity and non-activity trials.

Results: The use of a technology providing verbal instructions helped all participants perform the target activities. Performance was largely accurate with seven of the participants. Eight of the participants also showed mood improvement (i.e. increases in indices of happiness or decreases in indices of happiness) during activity.

Conclusion: These results suggest that the approach reported may be a useful strategy for helping persons with Alzheimer's disease enhance their activity and mood.     

Solution-Focused Approaches in the Context of People With Intellectual Disabilities: A Critical Review

Introduction: Solution-focused brief therapy (SFBT) has a growing evidence base and several authors have recognized the advantages of applying this approach with people with intellectual disabilities (ID). The purpose of this review is to summarize and critique the literature that has used solution-focused (SF) approaches in ID, and consider future directions. Methods: A literature review was carried out, identifying 12 studies; six with individuals, and six with staff and families. Results: There is preliminary evidence for the effectiveness of SFBT for individuals with mild ID and Solution-Focused Coaching or Consultation (SFC) for staff working with individuals with moderate and severe ID. However, the current evidence base consists primarily of case studies. Recommended adaptations include shortened scales and more concrete approaches to eliciting exception-seeking. Conclusions: Solution-focused techniques should be modified to accommodate the cognitive abilities of people with ID and carers should be involved in sessions where possible. There is a need for further controlled studies, with valid and reliable outcome measures, larger samples, and longitudinal data.     

A Large Scale Study of the Psychometric Characteristics of the IBR Modified Overt Aggression Scale: Findings and Evidence for Increased Self-Destructive Behaviors in Adult Females with Autism Spectrum Disorder

The psychometric characteristics of the IBR Modified Overt Aggression Scale were studied in over 2,000 people with Intellectual Disability (ID). Reliability ranged from good to excellent. Aggression toward others and objects was highest in the youngest adults, in those in the moderate to severe range of ID, and in those with an autism spectrum diagnosis. Self-injury was highest in those in the severe to profound range of ID and in those with autism, particularly the females. Females with autism were also more likely to make the most self-deprecating statements. Our data suggest that adult females with autism are a unique group and support the notion that mood and anxiety disorders play a role in self-destructive behaviors in this population.     

Reliability and validity of the Japanese version of the Behavior Problem Inventory-Short Form

BackgroundThe Behavior Problems Inventory-Short Form (BPI-S), which assesses behavior problems in individuals with intellectual disabilities (ID), is a shorter version of the BPI-01. This study investigated the reliability and validity of the BPI-S Japanese version (BPI-S-J) for adolescents/adults with ID and behavior problems.MethodsThe test–retest reliability included participants with ID and behavioral problems who were enrolled in welfare services. For test–retest reliability, 42 caregivers independently responded to the BPI-S-J every two weeks. Inter-rater reliability was independently assessed using the BPI-S-J by two caregivers who were familiar with the 42 participants. The participants of the validity assessment were 227 students from special needs schools or patients with ID admitted to medical institutions. The total frequency total score was compared based on the degree of ID. To examine the criterion-related validity, we analyzed the total frequency score, the total score of the Criteria for Determining Severe Problem Behavior (CDSPB) and the total score of the Aberrant Behavior Checklist-Japanese version (ABC-J).ResultsThe BPI-S-J of test–retest reliability was satisfactory (intra-class correlation; ICC) = 0.954), and the total score significantly (ICC = 0.721) represented good inter-rater reliability. For the validity, the BPI-S-J score of participants who had severe and profound ID was significantly higher than those who had mild and moderate ID. Significant correlations were observed between the BPI-S-J score and CDSPB score (r = 0.499), and the ABC-J score (r = 0.699), indicating adequate criterion-related validity.ConclusionThis study showed the utility of the BPI-S-J to assess behavior problems in the Japanese ID population.     

Feasibility and outcomes of multiplex ligation-dependent probe amplification on buccal smears as a screening method for microdeletions and duplications among 300 adults with an intellectual disability of unknown aetiology

Background Determining the aetiology of intellectual disability (ID) enables anticipation of specific comorbidity and can thus be beneficial. Blood sampling, however, is considered stressful for people with ID. Our aim was to evaluate the feasibility of a non‐invasive screening technique of nine microdeletions/duplications among adults with ID of unknown aetiology. Methods In a random sample of 300 adult clients of Dutch ID services without an aetiological diagnosis, DNA was collected on site using oral swabs. Multiplex Ligation‐dependent Probe Amplification was applied to screen for nine microdeletions/duplications related to ID syndromes (Williams 22q11‐deletion, 1p‐deletion, Miller–Dieker, Smith–Magenis, Prader–Willi, Alagille, Saethre–Chotzen and Sotos syndrome). Results Feasibility: prior to the consent procedure, for 2.1% (10/471 eligible participants), the method was considered undesirable. In 0.7% (2/300 participants) oral swabs failed because of resistant behaviour, while in 16.1% (48/298 swabs) analysis was unsuccessful because of insufficient amounts of DNA. A repeated attempt yielded an equal success rate. Outcome Microdeletions were diagnosed in four participants: 22q11 deletion (n = 2), 5q35 deletion (Sotos syndrome) (n = 1) and 1p deletion (n = 1). One participant had a duplication of the Prader–Willi Region (15q11‐13) owing to mosaicism of a supernumerary marker chromosome (15). Conclusions Oral swabs are a feasible method for DNA sampling in adults with IDs. A diagnosis could be made in five out of 275 people with ID of unknown aetiology. After screening, in the total population sample (n = 620), the prevalence of syndromes associated with the microdeletions/duplications studied was at least 2.3% (95% confidence interval 1.1–3.4%).     

Evaluation of cerebral activity in the prefrontal cortex in mood [affective] disorders during animal-assisted therapy (AAT) by near-infrared spectroscopy (NIRS): A pilot study

Objective. Previous studies have shown the possibility that animal-assisted therapy (AAT) is useful for promoting the recovery of a patient's psychological, social, and physiological aspect. As a pilot study, we measured the effect that AAT had on cerebral activity using near-infrared spectroscopy (NIRS), and examined whether or not NIRS be used to evaluate the effect of AAT biologically and objectively. Methods. Two patients with mood [affective] disorders and a healthy subject participated in this study. We performed two AAT and the verbal fluency task (VFT). Results. The NIRS signal during AAT showed great [oxy-Hb] increases in most of the prefrontal cortex (PFC) in the two patients. When the NIRS pattern during AAT was compared with that during VFT, greater or lesser differences were observed between them in all subjects. Conclusion. The present study suggested that AAT possibly causes biological and physiological changes in the PFC, and that AAT is useful for inducing the activity of the PFC in patients with depression who have generally been said to exhibit low cerebral activity in the PFC. In addition, the possibility was also suggested that the effect of AAT can be evaluated using NIRS physiologically and objectively.     

Vitamin D status and optimal supplementation in institutionalized adults with intellectual disability

Background Adults with intellectual disability (ID) have several risk factors for osteoporosis. Feeding problems with consequent nutritive deficiencies, and lack of sunshine exposure may lead to vitamin D deficiency. The purpose of this study was to evaluate vitamin D status in adults with ID living in nursing homes and to compare two different means to administer vitamin D in adults with ID. Methods The study included 138 adults (95 males and 43 females) with ID living in nursing homes of Pääjärvi Inter‐Municipal Association. Clinical data on the etiology and severity of ID, other illnesses, medications, anthropometry and fractures during the preceding 5 years were collected from medical records. The participants were alternately allocated to receive vitamin D3 either per orally 800 IU daily for 6 months (PO group, n = 72) or as a single intramuscular injection of 150 000 IU (IM group, n = 66). Blood samples were obtained at baseline and at 6 months for parameters of calcium homeostasis, including serum concentrations of 25‐hydroxyvitamin D (S‐25‐OHD) and parathyroid hormone (P‐PTH). Results At baseline, the mean S‐25‐OHD was low, 40 nmol/L in the PO group and 41 nmol/L in the IM group. The low vitamin D levels were associated with secondary hyperparathyroidism in 17%. At 6 months the mean S‐25‐OHD was 82 nmol/L in the PO group (P < 0.001 for the difference from baseline) and 62 nmol/L in the IM group (P < 0.001). P‐PTH decreased in both groups: from 51 ng/L to 33 ng/L in the PO group (P < 0.001) and from 54 ng/L to 34 ng/L in the IM group (P < 0.001). With daily dosing (800 IU/day) the recommended level (>80 nmol/L) was attained in 42%, but with intramuscular dose only in 12%. S‐25‐OHD was >100 nmol/L in 14 participants in the PO group and in one participant in the IM group; these high values were associated with hypercalcemia in two and hyperphosphatemia in six participants. Participants with S‐25‐OHD >100 nmol/L at 6 months were lighter (51.9 kg vs. 67.5 kg, P = 0.002) and had smaller body mass index than participants with lower S‐25‐OHD (20.5 kg/m² and 24.4 kg/m², P = 0.017). Conclusions Vitamin D insufficiency was common in adults with ID living in nursing homes. Both oral and intramuscular administrations of vitamin D3 improved vitamin D status without adverse effects. The treatment response at 6 months was better in the PO group. High‐dose intramuscular vitamin D3 injections may be a convenient way to maintain sufficient vitamin D status in adults with ID but further studies are needed to establish the optimal dose and interval as well as subsequent potential health benefits in these patients. Based on this study, vitamin D supplementation with per oral 800 IU/day is recommended to all adults with ID living in nursing homes.     

Cerebral white matter diffusion properties and free‐water with obstructive sleep apnea severity in older adults

Characterizing the effects of obstructive sleep apnea (OSA) on the aging brain could be key in our understanding of neurodegeneration in this population. Our objective was to assess white matter properties in newly diagnosed and untreated adults with mild to severe OSA. Sixty‐five adults aged 55 to 85 were recruited and divided into three groups: control (apnea‐hypopnea index ≤5/hr; n = 18; 65.2 ± 7.2 years old), mild (>5 to ≤15 hr; n = 27; 64.2 ± 5.3 years old) and moderate to severe OSA (>15/hr; n = 20; 65.2 ± 5.5 years old). Diffusion tensor imaging metrics (fractional anisotropy (FA), axial diffusivity (AD), radial diffusivity, and mean diffusivity) were compared between groups with Tract‐Based Spatial Statistics within the white matter skeleton created by the technique. Groups were also compared for white matter hyperintensities volume and the free‐water (FW) fraction. Compared with controls, mild OSA participants showed widespread areas of lower diffusivity (p < .05 corrected) and lower FW fraction (p < .05). Participants with moderate to severe OSA showed lower AD in the corpus callosum compared with controls (p < .05 corrected). No between‐group differences were observed for FA or white matter hyperintensities. Lower white matter diffusivity metrics is especially marked in mild OSA, suggesting that even the milder form may lead to detrimental outcomes. In moderate to severe OSA, competing pathological responses might have led to partial normalization of diffusion metrics.     

Occurrence of mental health problems in Swedish samples of adults with intellectual disabilities

Abstract. Objective: The aim of this study was to investigate the occurrence of mental health problems in adults with intellectual disabilities (ID) and the number of adults with ID receiving care at general mental health clinics. Method: The Reiss Screen for Maladaptive Behaviour and the Psychopathology Inventory for Mentally Retarded Adults were used to investigate mental health problems in samples from two Swedish counties. Adults with ID receiving psychiatric care at general mental health clinics were investigated via the mental health services register in one county. Results: The overall occurrence of mental health problems in adults with ID ranged from 34 % to 64%. The most common mental health problems were aggressive, self-injurious behaviours, signs of depression, anxiety or adjustment problems. The occurrence of adults with ID among patients receiving out- or in-patient psychiatric care was approximately 1%. Between 70 % and 90% of these persons had a mild level of ID. Conclusion: The overall occurrence of mental health problems was similar to reported overall figures in comparable studies conducted in the US, UK and Denmark. The number of adults with ID registered for out- or in-patient psychiatric care was low compared with the occurrence of mental health problems based on the screening results.     

A pilot study of a test for visual recognition memory in adults with moderate to severe intellectual disability

Objective assessment of memory functioning is an important part of evaluation for Dementia of Alzheimer Type (DAT). The revised Picture Recognition Memory Test (r-PRMT) is a test for visual recognition memory to assess memory functioning of persons with intellectual disabilities (ID), specifically targeting moderate to severe ID. A pilot study was performed to investigate whether the r-PRMT could differentiate DAT-related memory decline from pre-existing poor memory functioning of persons with moderate to severe ID. The r-PRMT scores were compared between 26 participants with DAT and moderate to severe ID and 33 controls with similar levels of ID. The results revealed that the controls with DS showed uniformly high scores in contrast to those with DAT on the r-PRMT and the score distributions of two groups were distinctly different with no overlap. On the other hand, the controls with non-DS etiologies scored much lower with a wider score spread, resulting in significant overlap with the score distribution of the participants with DAT. In conclusion, the r-PRMT may be effective in identifying persons with DAT among persons with moderate to severe ID from DS. However, the r-PRMT may result in a high false positive error rate in discriminating those with DAT among persons with moderate to severe ID from non-DS etiologies, if the judgment is based on a single point assessment.     

Sexual health services and support: The views of younger adults with intellectual disability

Abstract

Background?The sexual health needs of younger adults with intellectual disability (ID) are not currently being met by mainstream sexual health services. Little research has been conducted into improving these services’ accessibility.

Method?Thirty-four people with ID aged 16–35, who attended ID services in Lothian, Scotland, completed a questionnaire at a face-to-face interview about whom they could go to for advice and information about sex and relationships, which information sources they used, their experiences of sexual health services, and their preferences regarding these services.

Results?Most participants wanted to attend mainstream services and felt staff from these services should be able to meet their special needs. Preferences on services varied between individuals.

Conclusions?It is important that there continues to be a variety of sexual health services available and that staff are appropriately trained in working with people with ID. Further research is needed to identify and resolve unmet needs in this area.