Alzheimer's disease development in adults with Down syndrome: Caregivers' perspectives.

Research about Alzheimer's disease (AD) in individuals with Down syndrome (DS) has predominantly focused on the underlying genetics and neuropathology. Few studies have addressed how AD risk impacts caregivers of adults with DS. This study aimed to explore the perceived impact of AD development in adults with DS on caregivers by assessing caregiver knowledge, concerns, effect on personal life, and resource utilization via a 40-question (maximum) online survey. Survey distribution by four DS organizations and two DS clinics resulted in 89 caregiver respondents. Only 28 caregivers correctly answered all three AD knowledge questions. Caregivers gave an average AD concern rating of 5.30 (moderately concerned) and an average impact of possible diagnosis rating of 6.28 (very strong impact), which had a significant negative correlation with the age of the adult with DS (p = .009). Only 33% of caregivers reported utilization of resources to gain more information about the AD and DS association, with low levels of perceived usefulness. Our data reveal caregivers' misconceptions about AD development in DS, underutilization of available resources, and substantial concerns and perceived impacts surrounding a possible AD diagnosis. This study lays the foundation for how the medical community can better serve caregivers of aging adults with DS.

Diathesis-stress and depressed mood among adults with mental retardation.

The impact of diatheses, stress, and their interaction on depressed mood was evaluated to determine the appropriateness of cognitive diathesis-stress models of depression for adults with mental retardation. We also tested hopelessness as a mediator in the prediction of depressed mood to evaluate the hopelessness theory of depression. Seventy-three adults with mental retardation and adequate receptive vocabulary participated in semi-structured interviews. Experiencing life stressors and possessing a negative attributional style, but not their interaction, served as predictors of depressed mood. Similar results were obtained using frequency or impact ratings of life stress. Conditions were not met to test hopelessness as a mediator. Treatment implications for depression among adults with mental retardation are highlighted.

Psychometric evaluation of a self-report measure of depression for individuals with mental retardation.

The psychometric properties of the Self-Report Depression Questionnaire (SRDQ) were evaluated, extending a previous assessment of this instrument. Data from two independent studies (Esbensen, 2004; Seltzer & Krauss, 1989) were pooled to generate a sample of 192 individuals with primarily mild or moderate mental retardation. Reliability estimates of this questionnaire were good to excellent and corroborated prior findings. In addition, the measure was found to have sound validity as evidenced by convergent validity, discriminant validity, and predictive validity and by comparing individuals with and without clinical diagnoses of depression. Thus, the SRDQ appears to be a reliable and valid measure of depressive symptomatology for individuals with mild or moderate mental retardation. Screening procedures are suggested.

Use of differential reinforcement to reduce behavior problems in adults with intellectual disabilities: a methodological review.

The least-restrictive-alternative guideline for providing treatment emphasizes the use of non-aversive procedures to reduce maladaptive behaviors in individuals with intellectual disability (ID). Differential reinforcement (DR) is an excellent example of such a non-aversive, reinforcement based behavioral intervention. The purpose of this literature review was to summarize and provide a methodological analysis of studies, conducted between 1980 and 2009, using a DR contingency to reduce problem behaviors in adults with ID. A total of 31 studies were located that met the inclusion criteria. Of these, 15 reported DR to be an effective intervention when used independently. Of the remaining, 10 studies found DR to be useful as part of a treatment package, and six found a DR contingency used independently to be ineffective, and only observed treatment effects when an aversive component was added. Very few studies assessed the use of DR in older adults and in individuals with mild ID; these reflect areas of future research. A methodological analysis found that several studies did not report information on key methodological variables; for example, conducting a functional analysis and a stimulus preference assessment to guide choice of treatment and reinforcers, thinning very dense DR schedules, assessing collateral behaviors, generalization of behavior change across settings and implementers, and following up treatment outcomes over time. The overall positive findings about the effectiveness of DR are encouraging; however, more methodologically robust studies would serve to make such findings more conclusive and practically relevant for implementation in natural settings for adults with ID.

Clinical usefulness of the diagnostic manual-intellectual disability for mental disorders in persons with intellectual disability: results from a brief field survey.

OBJECTIVE: The National Association for the Dually Diagnosed, in collaboration with the American Psychiatric Association, adapted the DSM-IV-TR for use with individuals with intellectual disability. This article presents the findings of a study to examine the utility of the Diagnostic Manual-Intellectual Disability (DM-ID) in clinical practice. METHOD: In a survey conducted during the summer of 2006, clinicians reported on the extent to which the DM-ID was user friendly, whether it allowed the clinician to arrive at an appropriate diagnosis of the patient, if the clinician was able to arrive at a more specific diagnosis than with the DSM-IV-TR, and if it helped avoid the use of "not otherwise specified" (NOS) diagnostic categories. Demographic information about the clinicians and the patients was obtained. RESULTS: Data from 63 clinicians and 845 patients with intellectual disability were included in the study. The patients' level of intellectual disability was approximately evenly divided among the categories of mild, moderate, and severe/profound. The DM-ID was rated as "easy" or "very easy" to use in over 68% of the 845 responses. The positive response to the DM-ID did not vary significantly across levels of intellectual functioning. Clinicians also indicated that the DM-ID helped them avoid the use of the "NOS" diagnosis category, resulting in a more specific diagnosis. CONCLUSIONS: The DM-ID is a useful adaptation of the DSM-IV-TR for persons with intellectual disability. Professionals indicated that it was easy to use, resulted in accurate diagnoses, and can reduce the use of the NOS category. Further research is needed to evaluate the reliability and validity of the DM-ID.

Aggressive challenging behaviour and intellectual disability.

PURPOSE OF REVIEW: The aim of this article is to review reports of aggressive challenging behaviour in individuals with intellectual disability from September 2006 to March 2008. RECENT FINDINGS: Studies continued to demonstrate the prevalence and significance of aggressive challenging behaviour in persons with intellectual disability. Over half of the population engages in some form of aggression, but only a small number is responsible for frequent or severe acts. A publication that identified aggression profiles offered a promising new approach. Aggressive behaviour in adults often has multiple functions. The most frequently studied interventions were either behavioural or somatic. Parents learned skills to effectively intervene with their aggressive preschool child. Reviews of medication efficacy studies concluded that there was insufficient evidence to recommend a single medication. Psychiatrists agreed that medication should not be the first treatment option. In one study, a class of medication was found to reduce aggression, but not aggression with self-injury, or self-injury alone. SUMMARY: Research on aggressive challenging behaviour requires assessment instruments that address the topography and severity of aggression. Identifying aggression types may clarify mixed results of previous research and improve treatment effectiveness. Greater access to effective, nonmedication treatments is needed.

Project MED: effects of a Medication EDucation booklet series for individuals with intellectual disabilities.

We developed eight heavily illustrated booklets covering patients' rights and responsibilities, antiepileptic medicines, and most psychotropic medicines. The language level was very basic but covered a wide range of information. We distributed free copies of the booklets, together with standardized questionnaires, to consumers with and without intellectual disabilities or other developmental disabilities; 604 questionnaires were returned. The majority of consumers indicated that they read the booklets, learned more about their rights/responsibilities and the medicines described, and found the booklets helpful. Consumers with intellectual disability experienced more difficulty than "average" consumers in understanding the materials, but satisfaction and understanding were reportedly high overall. Female and minority respondents indicated somewhat higher satisfaction with the booklets than did their counterparts.