Autism spectrum disorder in older adults with intellectual disability: a scoping review.

INTRODUCTION: Ireland has an ageing population of persons with intellectual disability (ID), autism spectrum disorder (ASD) and both (ID/ASD). Despite this, little is known about the prevalence of ASD and its effect on functional outcomes, psychiatric comorbidity or diagnostic issues in an older population with ID. This article reviews the literature on older adults with ID/ASD and identifies opportunities for future research in this population. METHOD: The authors searched the Medline, Pubmed, Embase, CINAHL and PsychInfo databases using the search terms using key words: (older adults) AND (ID OR mental retardation OR learning disability) AND (autism OR ASD). After excluding articles for relevance, a scoping review was carried out on the results retrieved. RESULTS: Of the 1227 articles retrieved from the literature on ID and autism/ASD in older adults, 85 articles were relevant to an adult population with ID/ASD. The data were collated and are presented covering domains of diagnosis, prevalence, psychiatric comorbidities and functional outcomes. CONCLUSIONS: Despite increased prevalence in childhood ASD in the last 20 years, there is a lack of research regarding adults, especially older adults, with ASD, up to half of whom will have some level of ID. The existing literature suggests that older adults with ID/ASD may have reduced functional independence, increased psychiatric comorbidity and psychotropic prescribing and more behavioural presentations than the older population generally or those with ID only. There is a need for longitudinal data to be collected on this ageing population so that care and management needs can be met in the future.

Overweight/obesity and chronic health conditions in older people with intellectual disability in Ireland.

BACKGROUND: This study examines overweight/obesity and chronic health conditions (CHCs) in older people with intellectual disability (ID). METHODS: Data for this cross-sectional observational study emanated from Wave 2 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing, a longitudinal study assessing the health and well-being of older Irish adults with ID aged ≥40 years across all levels of ID. Participation involves an interview process and collation of objective health measures. In this study, body mass index (BMI) (n = 572), used as a measure of weight status, was examined with clustered doctor's diagnosed CHCs. Descriptive analysis was conducted where counts (n) and proportions (%) were used to summarise the variables univariately, while cross-tabulations were used for bivariate summary into counts and proportions. With overweight/obesity prevalence established and patterns described using logistical regression, Pearson's chi-squared test was used to test for significant associations. RESULTS: Overweight/obesity identified in 69% of participants occurred with greater frequency in women (72%). A higher percentage of participants aged <50 years (72.5%) were overweight/obese than those aged 50-64 (70%) and 65+ (61.4%). Level of ID and residence type were significantly associated with weight status (P < 0.001), with overweight/obesity more prevalent in mild (85.7%) than moderate (72%) or severe/profound ID (51.4%). Of those who lived independently/with family, 78.4% were overweight/obese, as were 74% living in a community group home (P < 0.001). Almost all overweight/obese participants' waist measurements were in the substantially increased risk of metabolic disease waist measurement category (92%, P < 0.001). Logistical regression used to model CHCs on BMI showed significant association between BMI and gastrointestinal tract [odds ratio (OR) = 0.57, P < 0.008, 95% confidence interval (CI) = (0.37; 0.86)], respiratory condition [OR = 8.95, P < 0.004, 95% CI = (2.57; 56.72)] and musculoskeletal disorders [OR = 0.40, P < 0.001, 95% CI = (0.25; 0.63)]. CONCLUSIONS: The findings illustrate the strong cross-sectional association between overweight/obesity and CHCs. These findings suggest a need to prioritise weight status as a health risk to people with ID as they age.

The impact of COVID-19 on the social inclusion of older adults with an intellectual disability during the first wave of the pandemic in Ireland.

BACKGROUND: Social restrictions and service closures from COVID-19 have negatively impacted social inclusion and well-being for some people with intellectual disabilities (IDs). METHODS: The fourth wave of a national longitudinal study on ageing in people with ID in Ireland was interrupted during the COVID-19 outbreak. Social inclusion data for pre-existing participants interviewed before COVID-19 (n = 444) were compared with data for pre-existing participants interviewed during/after lockdown (n = 62). RESULTS: More people interviewed after lockdown reported frequent family contact. Significantly greater numbers in the post-lockdown group reported access to and use of technology than the pre-lockdown group. Technology use was higher among those living in grouped residences supported by services compared with individuals living independently or with family. CONCLUSIONS: During the early stages of the COVID-19 pandemic in Ireland, many older adults with ID stayed connected with family and reported rates of contact higher than were reported by others before COVID-19. This connection may have been supported by a significant increase in technology use during the pandemic. However, uneven use of technology may disadvantage some including individuals living with family or independently. Given that COVID-19 restrictions are likely to continue to restrict social opportunities, increased digital support may assist more people with ID to use technology to maintain their social connections.

Biopsychosocial factors associated with depression and anxiety in older adults with intellectual disability: results of the wave 3 Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing.

BACKGROUND: Depression and anxiety are amongst the most prevalent mental health disorders in the older population with intellectual disability (ID). There is a paucity of research that pertains to associative biopsychosocial factors for depression and anxiety in this population. The aim of this study is to determine the biopsychosocial factors associated with depression and anxiety in a population of older adults with ID in Ireland. METHODS: The study was part of 'The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing'. Depressive symptoms were assessed using the Glasgow Depression Scale for people with a Learning Disability. Anxiety symptoms were measured using the Glasgow Anxiety Scale for people with a Learning Disability. The cross-sectional associations of depression and anxiety with biopsychosocial parameters were measured using a variety of self-report and proxy-completed questionnaires. RESULTS: For the study population, 9.97% met the criteria for depression, and 15.12% met the criteria for an anxiety disorder. Participants meeting criteria for depression were more likely to be taking regular mood stabiliser medications and to exhibit aggressive challenging behaviour. Participants meeting criteria for anxiety were more likely to have sleep difficulties and report loneliness. Participants meeting criteria for either/both depression and anxiety were more likely to report loneliness. CONCLUSIONS: This study identified both treatable and modifiable, as well as unmodifiable, biopsychosocial factors associated with depression and/or anxiety in older adults with ID. A longitudinal study follow-up will further develop our knowledge on the causality and direction of associated biopsychosocial factors with depression and anxiety in older adults with ID and better inform management strategies, prevention policies and funding of services.

Examining the effects of computerised cognitive training on levels of executive function in adults with Down syndrome.

BACKGROUND: Individuals with Down syndrome (DS) are at much greater risk of developing Alzheimer's disease, and one of the early clinical symptoms of Alzheimer's disease is executive dysfunction. In the general population, cognitive training has shown some promising results in relation to maintaining or improving cognitive processes. There is currently a gap in the literature in relation to cognitive training for adults with DS. METHODS: A quasi-experimental mixed factorial design with partial crossover was used involving an 8-week intervention period using a brain training programme. Participants were matched on age and then randomly assigned to either the intervention group or the delayed intervention group. Forty adults with DS, aged between 30 and 49 and with a mild or moderate level of intellectual disability, participated in the study. All participants completed baseline measures of executive function, using both neuropsychological assessments and an informant-rated measure of behavioural executive function. The intervention group first completed the training and then the delayed intervention group. Executive function assessments were repeated for both groups following the training. RESULTS: The study aimed to examine whether a cognitive training programme could have an effect on levels of executive function. While conclusions are limited owing to small sample size, improvement was seen in neuropsychological assessments of executive function following cognitive training. Positive effects reflected in everyday behaviours were not as promising. CONCLUSIONS: This study showed that, while it has not been previously an area of focus, individuals with DS can complete a computerised cognitive training programme. Furthermore, the results were promising with significant improvements found in neuropsychological assessments of executive function. These findings need further investigation with a larger sample size and would benefit from the use of a brain imaging component to strengthen the findings.

The association of life events and mental ill health in older adults with intellectual disability: results of the wave 3 Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing.

BACKGROUND: Exposures to life events are associated with emotional, psychological and behavioural problems in those with intellectual disability (ID). Older adults with ID may experience different life events given differences in living circumstances, cognitive decline, greater dependency on others and less autonomy. This study examines the relationship of life events and mental ill health in an older ID population in Ireland. METHODS: The study was part of 'The Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing'. The frequency of life events was assessed using a 20-item checklist, and the level of stress experienced was assessed using a three-point Likert scale measuring the burden of the life event. The associations of life events with factors associated with mental ill health were measured using a variety of self-report and proxy completed questionnaires. RESULTS: For the study population, 88.1% had been exposed to at least one life event in the preceding 12 months and 64.5% to two or more life events. Frequency and burden of life events were significantly higher in individuals living in institutional settings and in individuals with any current psychiatric condition, increased depressive and anxiety symptoms, challenging behaviour and reported poorer self-rated mental and physical health. More life events were significantly associated with new psychiatric diagnoses as well as initiation and increased dosage of mood stabilising, hypnotic and sedative medications. CONCLUSIONS: Life events are significantly associated with mental ill health in the older ID population. Service providers must focus on limiting the exposure to these events and, in situations where they cannot be avoided, should support and manage individuals compassionately and effectively, prioritising their mental and physical well-being.

The exercise of human rights and citizenship by older adults with an intellectual disability in Ireland.

BACKGROUND: The UN Convention on the Rights of Persons with Disabilities (CRPD) provides the benchmark for assessing human rights and citizenship for people with disabilities. This emphasises autonomy, choice, independence, equality and participation for individuals as its fundamental guiding principles. METHODS: This paper explores the exercise of human rights and citizenship for older adults with intellectual disabilities (ID) in Ireland, including choice-making, advocacy and political participation. Cross-sectional data (n = 701) is drawn from wave 2 of the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing. Rates of participation are reported, along with bivariate associations across a range of demographic, personal and social variables, while factors associated with level of choice-making and voting are explored. RESULTS: We found very low rates of choice-making, advocacy and political participation amongst this population. Two factors of choice were explored: key life choice and everyday choice. Some commonalities were identified between the two factors, yet key differences were also noted. Type of residence was the strongest predictor of key life choice yet not significant in everyday choice, while the reverse was true for functioning in activities of daily living. Other factors were also significant in determining choice, including level of ID, contact with family, functional limitation, literacy, age, having friends and respondent type. CONCLUSIONS: Low rates of participation reported here impinge on the rights of older adults with ID under the principles of the UN CRPD. Choice-making emerged as a multi-factorial phenomenon, with different factors important depending on the type of choice involved. This encourages a nuanced and personalised response from policy and support services to overcome individual challenges to participation as equal citizens. The significance of respondent type also highlights the difficulty of including self-report, supported and proxy participants in ID research.

Supporting advanced dementia in people with Down syndrome and other intellectual disability: consensus statement of the International Summit on Intellectual Disability and Dementia.

BACKGROUND: The International Summit on Intellectual Disability and Dementia (Glasgow, Scotland; October 2016) noted that advanced dementia can be categorised as that stage of dementia progression characterised by significant losses in cognitive and physical function, including a high probability of further deterioration and leading to death. METHOD: The question before the Summit was whether there were similarities and differences in expressions of advanced dementia between adults with intellectual disability (ID) and adults in the general population. RESULTS: The Summit noted challenges in the staging of advanced dementia in people with ID with the criteria in measures designed to stage dementia in the general population heavily weighted on notable impairment in activities of daily living. For many people with an ID, there is already dependence in these domains generally related to the individuals pre-existing level of intellectual impairment, that is, totally unrelated to dementia. Hence, the Summit agreed that as was true in achieving diagnosis, it is also imperative in determining advanced dementia that change is measured from the person's prior functioning in combination with clinical impressions of continuing and marked decline and of increasing co-morbidity, including particular attention to late-onset epilepsy in people with Down syndrome. It was further noted that quality care planning must recognise the greater likelihood of physical symptoms, co-morbidities, immobility and neuropathological deterioration. CONCLUSIONS: The Summit recommended an investment in research to more clearly identify measures of person-specific additional decline for ascertaining advanced dementia, inform practice guidelines to aid clinicians and service providers and identify specific markers that signal such additional decline and progression into advanced dementia among people with various levels of pre-existing intellectual impairment.

Pharmacological behaviour support for adults with intellectual disabilities: Frequency and predictors in a national cross-sectional survey.

OBJECTIVE: To report frequency and predictors of reported pharmacological behaviour support use among older adults with intellectual disabilities (ID) accessing dental care in Ireland. METHODS: Data from a nationally representative cross-sectional survey of adults with ID over 40 years of age allowed identification of the reported frequency of pharmacological behaviour support use. Predictors of pharmacological support were identified using multiple logistic regression. RESULTS: Most older adults with ID did not report the use of any pharmacological support to receive dental care: only 0.9% reported use of inhalation sedation; 2.4% intravenous (IV) sedation; 8.6% general anaesthesia (GA); and 16.0% oral sedation. Participants reporting challenging behaviour (OR = 1.9, 95% CI = 1.3-2.9), significant difficulty speaking (OR = 3.0, 95% CI = 1.8-4.8) and obvious oral problems (OR = 2.5, 95% CI = 1.6-4.1) had greater odds of reporting pharmacological, that is, GA or conscious sedation (CS), rather than nonpharmacological supports for dental care, compared to those who were not. CONCLUSIONS: People with ID report a diverse range of support use, with many using GA or CS, particularly oral sedation, for dental treatment. This highlights a need for training and governance for dentists who provide this care. Patients who present with challenging behaviour, oral problems and, interestingly, difficulty with expressive communication are more likely to report use of pharmacological supports. The above has implications for dental service design and delivery for this population.

Prevalence and patterns of anti-epileptic medication prescribing in the treatment of epilepsy in older adults with intellectual disabilities.

BACKGROUND: The prevalence of epilepsy is higher in people with intellectual disability (ID) and increases with the degree of ID. Although life expectancy for people with ID is increasing, people with ID coexisting with epilepsy have a higher mortality rate, particularly those who had recent seizures. There have been few observational studies of the prevalence and patterns of anti-epileptic prescribing among older people with ID and epilepsy. The aim of this study was to investigate prevalence and patterns of anti-epileptic prescribing in the treatment of epilepsy in a representative population of older people with ID and epilepsy. METHODS: This was an observational cross-sectional study from wave 1 (2009/2010) of Intellectual Disability Supplement to the Irish Longitudinal Study on Aging, a nationally representative sample of 753 persons with ID aged between 41 and 90 years. Participants and/or proxies recorded medicines used on a regular basis and reported doctor's diagnosis of epilepsy; medication data were available for 736 (98%). Prescribing of anti-epileptic drugs (AEDs) for epilepsy in those with a doctor's diagnosis of epilepsy (N = 205) was the primary exposure of interest for this study. Participant exposure to these AEDs was then categorised into AED monotherapy and polytherapy. Participants/carers reported seizure frequency, when epilepsy was last reviewed and which practitioner reviewed epilepsy. In addition, medications that may lower the seizure threshold that were listed in the Maudsley prescribing guidelines in psychiatry were examined. RESULTS: Of the 736 participants with reported medicines use, 38.9% (n = 287) were exposed to AEDs, and 30.6% (225) had a doctor's diagnosis of epilepsy. Of those with epilepsy (n = 225), 90.9% (n = 205) reported concurrent use of AEDs and epilepsy. Of these 205 participants, 50.3% (n = 103) were exposed to AED polytherapy, and 63 different polytherapy regimes were reported. The most frequently reported AEDs were valproic acid (n = 100, 48.7%), carbamazepine (n = 89, 46.3%) and lamotrigine (n = 57, 27.8%). In total, 13.7% had a concurrent psychotropic, which should be avoided in epilepsy, and 32.6% had a psychotropic where caution is required. Antipsychotics with potential epileptogenic potential accounted for 80% of these medications. Of those with AED polytherapy (n = 103), 29.5% (28) reported being seizure free for the previous 2 years. CONCLUSIONS: Prevalence of epilepsy was high among older people with ID, and half were exposed to two or more AEDs. Despite the use of AED therapy, over half had seizures in the previous 2 years. As the primary goals of optimal AED treatment are to achieve seizure freedom without unacceptable adverse effects, this was not achievable for many older patients with ID and epilepsy. Our findings indicated that people with ID and epilepsy were often exposed to psychotropic medications that may lower the seizure threshold. Regular review of epilepsy and medicines (including medicines that may interact with AEDs or lower the seizure threshold) by multidisciplinary teams working to agreed standards may improve quality of prescribing. Improved exchange of information and coordination of care between specialists and primary care practitioners in line with expert consensus recommendations could bring substantial benefit.

A prospective 20-year longitudinal follow-up of dementia in persons with Down syndrome.

GOAL: To examine dementia characteristics, age at onset and associated co-morbidities in persons with Down syndrome. METHOD: A total of 77 people with Down syndrome aged 35 years and older were followed up from 1996 to 2015. The diagnosis of dementia was established using the modified ICD 10 Criteria and a combination of objective and informant-based tests. Cognitive tests included the Test for Severe Impairment and the Down Syndrome Mental Status Examination; adaptive behaviour was measured using the Daily Living Skills Questionnaire, and data from the Dementia Questionnaire for People with Intellectual Disabilities have been available since 2005. RESULTS: Over the 20-year period, 97.4% (75 of 77) persons developed dementia with a mean age of dementia diagnosis of 55 years (SD = 7.1, median = 56 years). Clinical dementia was associated with cognitive and function decline and seizure activity. Risk for dementia increased from 23% in those aged 50 years to 80% in those aged 65 years and above. There were no differences by level of ID. CONCLUSION: The previously reported high risk levels for dementia among people with Down syndrome were confirmed in this data as was the relationship with late onset epilepsy. The value of the instruments utilised in tracking decline and helping to confirm diagnosis is further highlighted.

Prevalence, patterns and factors associated with psychotropic use in older adults with intellectual disabilities in Ireland.

BACKGROUND: People with intellectual disability (ID) are at increased risk of exposure to psychotropic drugs and psychotropic polypharmacy because of the higher prevalence of mental health conditions present and more controversially, the use of these agents to treat challenging behaviours. Despite the fact that many adults with ID are exposed to psychotropic polypharmacy, few studies to date have focused on the patterns of use of multiple psychotropics, or factors associated with psychotropic polypharmacy, particularly in the older population. This study aims to examine the prevalence, patterns and factors associated with psychotropic use in general and psychotropic polypharmacy in particular in a representative sample of ageing people with ID. METHODS: This was an observational cross-sectional study from Wave 1 of Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing; a nationally representative sample of 753 persons with ID aged between 41 and 90 years. Participants/proxy reported medicines (prescription and over the counter) taken on a regular basis; medication data were available for 736 participants (98%). Participants were divided into those with no psychotropic exposure, exposure to 1 psychotropic and psychotropic polypharmacy (2+ psychotropics). Patterns of psychotropic use were analysed. A multinomial logistic regression model identified factors associated with use of 1 psychotropic and psychotropic polypharmacy. RESULTS: Overall, 59.1% (436) of the sample was exposed to any psychotropic; of these, 66.2% reported psychotropic polypharmacy. Antipsychotics were the most frequently reported psychotropic class by 43% of the sample. Living in a residential institution and having a history of reporting a mental health condition or sleep problems were associated with psychotropic polypharmacy after adjusting for confounders, while those with epilepsy were less likely to experience exposure to polypharmacy, but age, gender had no significant effect. CONCLUSIONS: Psychotropic use and polypharmacy were commonplace for older adults with ID. Psychotropic use, particularly the use of psychotropic combinations, needs to be regularly reviewed for safety, efficacy and adverse effects, and rationale for use of multiple agents needs to be clear and documented.

Understanding differences between caregivers and non-caregivers in completer rates of Chronic Disease Self-Management Program.

OBJECTIVES: The Chronic Disease Self-Management Program (CDSMP) was developed to advance participants' self-care of chronic illness and may be offered to both individuals with chronic conditions and their caregivers. Previous studies of CDSMP have identified multiple resulting health benefits for participants as well as factors associated with participants' completion rates. This study investigated differences on these issues between caregiving and non-caregiving participants. STUDY DESIGN: Secondary analysis using regression analysis to predict the outcome. METHODS: Baseline data were collected directly from adult (over 18 years) participants of CDSMP workshops in New York State from 2012 to 2015 (n = 2685). Multi-level logistic regression analysis was used to compare the difference on completion of workshops (attended four or more of sessions) and contributing factors with the independent variable of whether participants provided care/assistance to a family member or friends with long-term illness or disability. Additional individual-level variables controlled for in the model were age, gender, race/ethnicity, living arrangement, education, the number of chronic conditions and disabilities; as were workshop-level characteristics of class size, language used, workshop leader experience, location urbanity and delivery site type. RESULTS: Participants who provided care to family or friends were 28% more likely to complete the workshop compared with those who did not (odds ratio = 1.279, P < 0.05). Different factors influenced the completion of CDSMP workshop for caregivers and non-caregivers. CONCLUSIONS: People who provide care to others appeared to have stronger motivation to complete the workshops with greater benefits. Agencies offering CDSMP should encourage caregivers to attend.

Measuring choice for adults with an intellectual disability - a factor analysis of the adapted daily choice inventory scale.

BACKGROUND: For most people, choice making is an everyday occurrence, but for adults with an intellectual disability (ID), such opportunities are often limited, if not, absent. Defining choice, and related opportunity capacity and supports continue to feature prominently in academic, practice and policy discourse within the field of ID as reflected in the range of measures available. This paper examines the factor analytic properties of an adapted 14-item choice inventory scale. METHOD: Presence and type of choice were recorded in wave 1 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing using a choice inventory scale adapted for the Irish context for 753 participants with ID over age 40 years. Analysis included both an exploratory and confirmatory factor analysis. Descriptive statistics on choice by type of living arrangement, type of interview (proxy, self or supported) and level of ID are presented. RESULTS: Exploratory factor analysis indicates good model fit when using both a 3-item and 4-item response with the 4-item version suggesting a two-factor model. Further exploration of this two-factor model through confirmatory factor analysis highlighted an improved fit for the 4-item model. Further improvement in model fit is found when four item pairs are co-varied within the model. CONCLUSION: Two broad types of choice were found to exist for adults with ID - everyday decisions and key life decisions. In addition, the factor analysis support for the inclusion of a 'no choice' response may help reduce the potential for missing data.

An exploration of the bone health of older adults with an intellectual disability in Ireland.

BACKGROUND: Many risk factors have been confirmed for poor bone health among the general population including age, gender and corticosteroid use. There is a paucity of investigation among people with intellectual disability; however, research points to differing risks namely anti-epileptic medication use, Down syndrome and poor behaviour lifestyle. METHODS: Data was extracted from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing in Ireland. In total, 753 participants took part, and data was gathered on participants' health status, behavioural health, health screenings and activities of daily living. The prevalence of osteoporosis and related risk factors were specifically examined. RESULTS: Overall, 8.1% reported a doctor's diagnosis of osteoporosis with over 20% reporting history of fracture. Risk identified included older age (P < 0.0001), female gender (P < 0.0001), difficulty walking (P < 0.0001) with older age and being female the stronger predictors for osteoporosis, odds ratio = 6.53; 95% confidence interval 2.82-15.11 and odds ratio = 4.58; 95% confidence interval 2.29-9.17, respectively. There was no gender difference regarding the level of fractures; however, epilepsy and anti-epileptic medication were strong predictors. Overall, 11.1% attended for bone screening diagnostics. CONCLUSION: Despite low levels of reported doctor's diagnosis of osteoporosis risk factor prevalence was high. Considering the insidious nature of osteoporosis and the low levels of diagnostic screening, prevalence could be possibly higher.

A prospective 14-year longitudinal follow-up of dementia in persons with Down syndrome.

BACKGROUND: To examine dementia characteristics, age at onset and associated comorbidities in persons with Down syndrome. METHOD: Seventy-seven people with Down syndrome aged 35 years and older were followed longitudinally. The diagnosis of dementia was established using the modified International Classification of Diseases, Tenth Revision (ICD-10) criteria and a combination of objective and informant-based tests. Cognitive tests included the Test for Severe Impairment and the Down Syndrome Mental Status Examination; adaptive behaviour was measured using the Daily Living Skills Questionnaire. The Dementia Questionnaire for Mental Retarded Persons (DMR) was added to the test battery in 2005 and this study includes follow-up data for this instrument. RESULTS: Over the 14-year period the average age of diagnosis at 55.41 years (SD = 7.14) was in the higher range of previously reported estimates (51-56 years) and a median survival of 7 years after diagnosis. Persons with dementia in the sample were significantly older than persons without dementia. The presence of dementia was also associated with epilepsy and sensory impairments. Among instruments the DMR appeared most sensitive to tracking change in symptoms over time before diagnosis. CONCLUSION: The previously reported high risk levels for dementia among people with Down syndrome was confirmed in these data as was the value of the instruments utilised in tracking decline and helping to confirm diagnosis even in persons with severe intellectual disability.

Factorial validity and consistency of the Maslach Burnout Inventory among staff working with persons with intellectual disability and dementia.

BACKGROUND: Burnout has been considered important to understanding the well-being of workers in the intellectual disabilities (ID) field and the quality of services delivered to clients/consumers. However, little research has examined the psychometric properties and applicability to staff in ID services of one of the most widely used burnout measurements - the Human Services Survey version of the Maslach Burnout Inventory (MBI-HSS). METHODS: Data were gathered using a mailed questionnaire comprising the MBI-HSS and demographic information. The sample consisted of 435 staff delivering direct care and working in out-of-home community placements for persons with ID in New York state. The factorial structure of the scale was examined using confirmatory and exploratory factor analysis. Internal consistency estimates of reliability of the MBI-HSS were determined using Cronbach's alpha. RESULTS: Confirmatory factor analysis supported the MBI-HSS as an acceptable measure to evaluate burnout in ID services staff. However, the reliability statistics obtained for the Depersonalization (DP) sub-scale was much lower than what has been reported in studies with other staff populations. An exploratory factor analysis suggested that a four-factor solution, dividing the DP sub-scale into two factors, provided a somewhat better fit for the sample. CONCLUSIONS: The use of the MBI-HHS as an instrument for measuring burnout among ID workers has its attraction but also its limitations. In particular, the DP sub-scale should be used with caution because there appear to be wording issues for staff in ID settings that may lead to inconsistent responses.

Health co-morbidities in ageing persons with Down syndrome and Alzheimer's dementia.

BACKGROUND: Consideration of the relationship between physical and mental health co-morbidities in ageing persons with Down syndrome (DS) and Alzheimer's dementia (AD) is of clinical importance both from a care and resource perspective. AIM To investigate and measure health co-morbidities in ageing persons with Down syndrome with and without AD. METHODS: Recorded physical and mental health needs were ascertained for 124 persons with DS>35 years through a systematic and detailed search of individual medical and nursing case records. Differences in persons with and without AD were investigated, by stage of dementia and by level of intellectual disability (ID). A summed score for health co-morbidities was created and compared using t-tests. RESULTS: Persons with AD had significantly higher co-morbidity scores than persons without AD (t=-8.992, d.f.=121, P<0.0001). There was also a significant difference in summed co-morbidity scores for persons at end-stage vs. persons at mid-stage AD (t=-6.429, d.f.=56, P<0.0001). No differences were found by level of ID. CONCLUSIONS: Increasing health co-morbidities in persons with DS and AD have important implications for care and resources. Appropriate environmental supports combined with competent skilled staff are crucial and will have an important impact on the quality of life for this increasingly at risk population.

A measure of subjective burden for dementia care: the Caregiving Difficulty Scale--Intellectual Disability.

BACKGROUND: It has been suggested in the literature on family caregiving for persons with Alzheimer's dementia (AD) that levels of objective and subjective burden among carers often predict institutionalization of the persons with AD. There is a paucity of measures to assess whether perceived burden among formal caregivers may also predict movement to more restrictive settings for persons with intellectual disabilities (ID) and AD. This study focused upon the development of a measure of subjective burden, The Caregiving Difficulty Scale - Intellectual Disability (CDS-ID) as a first step in addressing this measurement deficit. METHODS: An existing caregiver subjective burden scale, the Caregiving Hassles Scale (CHS) was adapted for use with 203 staff caregivers of persons with ID and AD. Preliminary testing of existing CHS items and proposed new items was carried out in two countries, Ireland and the USA. Confirmatory factor analysis with the existing items and exploratory factor analysis with existing and proposed new items for the scale was used to establish the content and test the psychometric properties of a revised scale, the CDS-ID. RESULTS: On the existing CHS items, staff carers appeared to experience greater subjective burden than has been reported for family caregivers. However, the psychometric properties of the CHS found with this population were poor. Factor analysis produced a revised scale, the CDS-ID with three subscales with Cronbach alphas ranging from 0.75 to 0.93 and 38 items overall. CONCLUSIONS: This new scale when used with objective burden and other scales offers an opportunity to more systematically measure the difficulties staff experience when caring for persons with ID who present with symptoms of AD.

Health characteristics and health services utilization in older adults with intellectual disability living in community residences.

BACKGROUND: The health status and health needs of adults with intellectual disability (ID) change with advancing age, and are often accompanied by difficulties with vision, hearing, mobility, stamina and some mental processes. AIM: The present study collected health status information on a large cohort of adults with ID aged > or = 40 years living in small group, community-based residences in two representative areas of New York State, USA. METHOD: Adult group home residents with ID aged between 40 and 79 years (n = 1371) were surveyed to determine their health status and patterns of morbidity. RESULTS: Most subjects were characterized as being in good health. The frequency of cardiovascular, musculoskeletal and respiratory conditions, and sensory impairments increased with age, while neurological, endocrine and dermatological diseases did not. Psychiatric and behavioural disorders declined with increasing age, at least through 70 years of age. Although most conditions increased with age, their frequency varied by sex and level of ID. Frequencies of age-related organ system morbidity were compared to data from the National Health and Nutrition Evaluation Survey III. It was found that adults with ID had a lower overall reported frequency of cardiovascular risk factors, including hypertension and hyperlipidaemia, and adult-onset diabetes. Inconsistencies with mortality data among older adults with ID were observed (which showed equal if not greater prevalence of deaths as a result of cardiovascular disease and cancer). CONCLUSION: These results suggest that either a cohort effect is operating (i.e. contemporary populations are healthier than previous populations), or that there may be under-recognition of select risk factors and diseases.