Mental health of older people with mild and moderate intellectual disability in Australia.

BACKGROUND: The progressive increase in life expectancy of people with intellectual disability (ID) has resulted in enhanced survival into old age and has also seen a growth in research on both lifelong and emerging ageing-related health issues. Health issues amongst provider-supported adults have been previously studied, but these studies have not always included older community-dwelling adults with ID. METHODS: A study examining the extent of mental health of 391 community-dwelling adults with ID age 60 and older in both metropolitan and rural areas of two East Coast Australian states was undertaken using a cross-sectional survey. Examined were a range of demographic (age, sex, living arrangements, employment and socio-economic status) and life (co-morbidities, adverse life events and social support) factors. Data were parsed by two age groupings (60-65: n = 234 and >65: n = 157). RESULTS: Findings revealed that older community-dwelling adults with ID have many of the same mental health disorders as do other ageing people, with the exception of significant psychiatric disorders often associated with older age. Over a third (35%: n = 137) reported some one or more mental health disorders. Age, sex, location (rural or urban), financial hardship, social support or type of living arrangement were not statistically significant as risk factors for poor mental health. However, employment status was a clear predictor. Stepwise regression models showed a strong association between mental ill-health and adverse life events and between mental ill-health and multiple physical co-morbidities. CONCLUSIONS: The cross-sectional nature of the study limits causal inference. The cumulative effect of chronic health conditions and adverse life events cannot be prevented retrospectively. However, greater awareness amongst both health professionals and care staff that older adults with ID have a high likelihood of significant and/or repeated traumas and need better health care to limit physical co-morbidity may assist in providing support that is better tailored to individual needs in older age to reduce the burden of mental ill-health.

Quality outcomes in group home dementia care for adults with intellectual disabilities.

BACKGROUND: Dementia, as a public health challenge, is a phenomenon vexing many care organisations providing specialised residential and family supports for older adults with intellectual disabilities. With increasing survivorship to ages when risk is greatest, expectations are that many more adults in service will present with cognitive decline and diagnosed dementia as they grow older. As persons with dementia present with new needs, there is often a call for a reorientation of services. With respect to residential supports, agencies may need to adapt current methods of care, with particular attention to providing care in small group homes. However, dementia-related care also must be quality care and applicable standards need to be met. METHOD: Reviewed were relevant policy and practice organisational guidelines and applied research literature addressing components of care and service provision that are critical to quality care and that were consistent with professional practice. RESULTS: Examined were the nuances and contributing factors of quality dementia care and it was proposed that quality of care criteria need to be universally applicable and serve as a framework for adapting extant residential environments and make them 'dementia-capable'. CONCLUSIONS: It is proposed that efforts to evaluate dementia-related care provision with respect to quality need to consider quality of care provision components such as (1) clinically relevant early and periodic assessment; (2) functional modifications in the living setting; (3) constructive staff education and functionality for stage-adapted care; and (4) flexible long-term services provision that recognises and plans for progression of decline and loss of function.

Functional impairment severity is associated with health status among older persons with intellectual disability and cerebral palsy.

BACKGROUND: Studies have noted high rates of specific health disorders in adults with cerebral palsy (CP). However, it remains unclear how growing older with a lifelong neuromotor physical disability confers risk for health outcomes in adults who have both intellectual disability (ID) and CP. AIM: To assess the relationship between health status in older adults with ID either with or without coincident diagnoses of CP. METHOD: Health status data were drawn from 1373 adults aged 33 to 79 years with ID living in small group homes in New York State. Their health status was defined by the presence of common health disorders. Of these, 177 subjects had coincident CP. Prevalence data for nine diseases representing different organ systems were obtained and compared in individuals with and without CP. A Severity of Functional Impairment Index (SFII) was developed based on subjects' capabilities in activities of daily living (ADLs) and mobility. Two logistic regression analyses were conducted to determine if CP diagnosis was an independent predictor of health disorder prevalence, or rather exerted effects similar to those without CP via severity of functional impairment as determined by SFII scores. In addition, older age, gender, and severity of intellectual disability were examined as predictors of health disorder prevalence in all study subjects. RESULTS: Individuals with CP had higher frequencies in four out of the nine health disorders (overweight/obesity, gastroesophageal reflux, urinary tract infections and dysphagia). Analysis revealed a statistically significant association between SFII score and CP diagnosis. CP diagnosis alone was a statistically significant predictor for all of the above four common disorders; however, after adjustment for SFII score was included in health disorder models, only dysphagia showed an independent correlation with a CP diagnosis. CONCLUSION: With the exception of dysphagia, impairment in ADLs and walking capabilities, and not CP diagnosis alone, accounted for disparities in specific diseases. Although the diagnosis of CP may be correlated with functional impairment, it alone may play a minor role in determining health trajectories in older persons with conjoint ID and CP.

Carer reports of health status among adults with intellectual/developmental disabilities in Taiwan living at home and in institutions.

BACKGROUND: The aim of the present study was to assess the health status of a cohort of adults with intellectual/developmental disabilities (I/DD) residing in family homes or institutions in Taiwan and to examine whether morbidity varied with age, sex, existing diagnosis [Down syndrome (DS), seizures, cerebral palsy (CP), intellectual disability (ID) level] and residential status. METHODS: Systematic randomization based on geographic areas was employed for sampling selection. Primary carers were interviewed to provide health-related information on individuals with I/DD aged 33 years or older living in institutions (n = 614) or living with their family (n = 514) in Taiwan. RESULTS: Cardiovascular, neurological, visual and hearing impairments increased with age; while gastrointestinal, endocrine, infectious and dermatological diseases did not, after adjusting for sex, level of ID, presence of DS, seizures or CP, across settings. Institution cohorts were more likely to have infectious diseases, skin diseases, hepatitis or to be hepatitis carriers, and to have psychiatric disorders. CONCLUSIONS: Organ system morbidity increased with age and generally was influenced by the same factors as have been reported for cohorts in western countries. The results also suggest that disease/condition outcomes may vary or be influenced differentially by residential setting.

Associations between behavior disorders and health status among older adults with intellectual disability.

Few studies have examined the relationship of behavior and health status among aging persons with intellectual and developmental disabilities (I/DD). Behavioral disorders, which often are coincident with functional decline in older persons with I/DD, may be more related to medical morbidity than previously reported. This cross-sectional study examined the association between health status and behavior disorders with increasing age in a cohort of 60,752 adults with I/DD clustered into four adult-age groupings (21-44, 45-59, 60-74, and >74). Age grouping data suggested an association between morbidity and increased likelihood of behavior symptoms in all but the oldest age grouping. The magnitude of the association and trend varied by specific disease across age groupings compared to that found in healthy cohorts. About 25% of the adults with I/DD had psychiatric diagnoses and the frequency of such diagnoses did not decrease with age grouping. These results suggest that adverse health status may increase the likelihood of persistent behavioral disturbances in older persons with I/DD. Moreover, behavioral disorders may be sentinels for occult medical morbidity, which in turn may be responsive to intervention.

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.

The Edinburgh Principles with accompanying guidelines and recommendations.

A panel of experts attending a 3-day meeting held in Edinburgh, UK, in February 2001 was charged with producing a set of principles outlining the rights and needs of people with intellectual disability (ID)and dementia, and defining service practices which would enhance the supports available to them. The Edinburgh Principles, seven statements identifying a foundation for the design and support of services to people with ID affected by dementia, and their carers, were the outcome of this meeting. The accompanying guidelines and recommendations document provides an elaboration of the key points associated with the Principles and is structured toward a four-point approach: (1) adopting a workable philosophy of care; (2) adapting practices at the point of service delivery; (3) working out the coordination of diverse systems; and (4) promoting relevant research. It is expected that the Principles will be adopted by service organizations world-wide, and that the accompanying document will provide a useful and detailed baseline from which further discussions, research efforts and practice development can progress.

Prevalence of dementia and impact on intellectual disability services.

In a statewide survey, dementia was found in 3% of adults age 40+; 6%, age 60+; and 12%, age 80+. Among adults with Down syndrome, the rates were 22% for adults age 40+ and 56% for adults age 60+. Observed onset occurred in the mid-60s (early 50s for those with Down syndrome). Alzheimer-type dementia was the most frequent diagnosis. With the occurrence of dementia expected to rise proportionately with the increase of longevity among adults with intellectual disabilities, care systems will have to raise the "index of suspicion" among staff and families, become "dementia capable," and improve their diagnostic and technical resources, as well as their care management supports designed to prolong the "aging in place" of adults affected by dementia.

Mortality and morbidity among older adults with intellectual disability: health services considerations.

PURPOSE: Described is a study of the mortality and morbidity characteristics of 2752 adults with intellectual disability, age 40 and older, who died over a 10 year period in one American state. RESULTS: The main finding was that although individuals in the current generation of older adults with intellectual disability still generally die at an earlier age than do adults in the general population (average age at death: 66.1 years), many adults with intellectual disability live as long as their age peers in the general population. The results suggest that the longevity of adults with intellectual disability, whose aetiology is not attributable to organic causes, is progressively increasing. The results also confirm an increased longevity for adults with Down syndrome (average age at death: 55.8 years). Findings also showed that the causes of death for the study cohort were similar to those of the general older population, with cardiovascular, respiratory and neoplastic diseases among the most prominent causes of death. CONCLUSIONS: It was proposed that clinical and prophylactic health practices could have significant social and health care consequences for delaying the onset or minimizing the occurrence of life threatening diseases (and thus prolonging life) in adults with intellectual disability. It was suggested that clinical practices could be implemented that deter the onset and lessen the impact and burden of older age-related diseases and secondary conditions and that greater attention needs to be given to training of health care professionals in the area of geriatric medicine and intellectual disability.

Practice guidelines for the clinical assessment and care management of Alzheimer's disease and other dementias among adults with intellectual disability. AAMR-IASSID Workgroup on Practice Guidelines for Care Management of Alzheimer's Disease among Adults with Intellectual Disability.

The AAMR/IASSID practice guidelines, developed by an international workgroup, provide guidance for stage-related care management of Alzheimer's disease, and suggestions for the training and education of carers, peers, clinicians and programme staff. The guidelines suggest a three-step intervention activity process, that includes: (1) recognizing changes; (2) conducting assessments and evaluations; and (3) instituting medical and care management. They also provide guidance for public policies that reflect a commitment for aggressive care of people with Alzheimers's disease and intellectual disability, and avoidance of institutionalization solely because of a diagnosis of dementia.

Generational trends in sensory, physical, and behavioral abilities among older mentally retarded persons.

An extensive client registry data base was used to examine whether there were identifiable patterns in prevalence of chronic disease conditions, in decline of sensory capacities, and in decline of behavioral abilities among 10,532 elderly mentally retarded persons born between 1890 and 1939. Data indicated identifiable patterns in the prevalence of chronic disease conditions (cardiovascular, digestive, musculoskeletal, and respiratory systems) and the decline of behavioral and physical abilities and sensory capacities with increasing age. Functional skill losses were most prominent in mobility and fundamental activities of daily-living skill areas. Some behavioral losses were noted to occur earlier than would be expected in the general population; however, as with nonretarded persons, decline was highly variable and linked to the aging process experienced by each older retarded person. Implications of the findings were discussed.

Clinical need variations of disabled persons residing in group homes.

Group home research has generally entailed comparison of these settings and their residents to institutions and their residents. Group home residents have frequently been treated as a homogeneous cohort of individuals. When group home development began, initial residents--usually individuals recently deinstitutionalized--were probably relatively homogeneous in regard to functional abilities and service needs, and generally similar to other disabled persons living in the community. Today, the residents of one group home may bear little resemblance to those of another. This report presents information about the types of group homes within a state system based upon the characteristics and service needs of 1,050 persons in 118 group homes and questions the role of community mental health centers in addressing certain service needs of group home residents.

Characteristics of New York's community residences for developmentally disabled persons.

A statewide survey of New York's community residences for developmentally disabled persons was conducted in which program auspice, history and affiliation, physical structure, community relations, residence staff, and occupant characteristics were examined. The results revealed a diverse system, with certain characteristics similar to those reported in previous national community residence surveys. Principal differences between the statewide data and the national surveys related to residence auspice, size, and staff demographics. These differences are explained as a function of both survey sampling strategies and program differences. Implications of the data are discussed.