RESUMEN
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.
Asunto(s)
Discapacidad Intelectual , Trastornos Mentales , Anciano , Australia/epidemiología , Estudios Transversales , Humanos , Discapacidad Intelectual/epidemiología , Trastornos Mentales/epidemiología , Salud Mental , Persona de Mediana Edad , Estudios RetrospectivosRESUMEN
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.
Asunto(s)
Demencia/rehabilitación , Hogares para Grupos/métodos , Discapacidad Intelectual/rehabilitación , Evaluación de Procesos y Resultados en Atención de Salud/métodos , Anciano , Demencia/psicología , Humanos , Discapacidad Intelectual/psicología , Calidad de la Atención de Salud , Calidad de Vida/psicologíaRESUMEN
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.
Asunto(s)
Actividades Cotidianas/clasificación , Parálisis Cerebral/diagnóstico , Parálisis Cerebral/epidemiología , Anciano Frágil , Evaluación Geriátrica , Estado de Salud , Discapacidad Intelectual/diagnóstico , Discapacidad Intelectual/epidemiología , Adulto , Anciano , Estudios de Cohortes , Comorbilidad , Estudios Transversales , Trastornos de Deglución/diagnóstico , Trastornos de Deglución/epidemiología , Femenino , Humanos , Masculino , Persona de Mediana Edad , Limitación de la Movilidad , New York , Factores de RiesgoRESUMEN
Information concerning socio-demographics, disability characteristics, and services received and needed became available on approximately 900 autistic children and adults as a result of a statewide needs assessment and case-finding collection project conducted in New York. Analyses of the results confirmed other findings as to the predominance of males to females and a high concomitant occurrence of mental retardation. Results also showed a population having few problems with mobility, hearing or vision, but moderate deficits in most skills related to activities of daily living, and significant deficits in communication and basic independent functioning skills. Differences were observed between institutionalized and noninstitutionalized autistic persons in terms of level of retardation, functional skills, age, and use of medications. Implications of the findings are drawn for clinicians, administrators, and public policy makers.
Asunto(s)
Trastorno Autístico/terapia , Necesidades y Demandas de Servicios de Salud , Investigación sobre Servicios de Salud , Actividades Cotidianas , Adolescente , Adulto , Trastorno Autístico/epidemiología , Niño , Preescolar , Estudios Transversales , Atención a la Salud/organización & administración , Educación de las Personas con Discapacidad Intelectual , Femenino , Política de Salud , Humanos , Masculino , Persona de Mediana Edad , New York , Tratamiento Domiciliario , Ajuste SocialRESUMEN
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.
Asunto(s)
Esperanza de Vida , Personas con Discapacidades Mentales/estadística & datos numéricos , Adulto , Causas de Muerte , Síndrome de Down , Femenino , Política de Salud , Servicios de Salud , Humanos , Masculino , Morbilidad , New York , Instituciones ResidencialesRESUMEN
Preliminary information about the population characteristics of developmentally disabled persons in the State of New York is presented. The information was derived through a "rate-under-treatment" survey approach using the Developmental Disabilities Information Survey (DDIS). The results are based upon statewide data, derived from 36,334 cases, composed of 34% children and 66% adults. The findings revealed that the subject populations socio-demographics were consistent with those of the general population in the areas of age and ethnic distribution, but not in gender ratio. Developmentally disabled persons were located primarily in community settings; only 24% of the children and 45% of the adults were found to reside within various institutional settings. Most were mentally retarded, however more children than adults were identified as having a secondary condition such as autism, cerebral palsy, epilepsy or some other neurological impairment. About half were reported to also have some type of physical disability. The majority were free of ambulation difficulties. Only half had basic self-care skills, and a third were facile in communication skills. Learning capabilities were found to be affected by maturation and experience. It was suggested that a "rate-under-treatment" approach is effective, within certain constraints, in capturing reliable information about a population that could be used for planning and developing public policies.
Asunto(s)
Discapacidad Intelectual/epidemiología , Actividades Cotidianas , Adolescente , Adulto , Anciano , Niño , Preescolar , Femenino , Humanos , Masculino , Persona de Mediana Edad , New York , PoblaciónAsunto(s)
Anciano , Necesidades y Demandas de Servicios de Salud , Investigación sobre Servicios de Salud , Servicios de Salud para Ancianos , Discapacidad Intelectual , Características de la Residencia , Actividades Cotidianas , Parálisis Cerebral/epidemiología , Parálisis Cerebral/terapia , Epilepsia/epidemiología , Epilepsia/terapia , Femenino , Servicios de Salud para Ancianos/estadística & datos numéricos , Humanos , Discapacidad Intelectual/epidemiología , Discapacidad Intelectual/terapia , Masculino , Persona de Mediana Edad , New YorkAsunto(s)
Actitud del Personal de Salud , Personas con Discapacidad , Adulto , Femenino , Humanos , Masculino , RehabilitaciónRESUMEN
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.
Asunto(s)
Discapacidades del Desarrollo/epidemiología , Estado de Salud , Institucionalización/estadística & datos numéricos , Discapacidad Intelectual/epidemiología , Características de la Residencia/estadística & datos numéricos , Adulto , Niño , Estudios de Cohortes , Femenino , Humanos , Masculino , Registros Médicos , Persona de Mediana Edad , Variaciones Dependientes del Observador , Encuestas y Cuestionarios , Taiwán/epidemiologíaRESUMEN
Perske's concept of risk from the perspective of fire safety was examined for approximately 46,000 developmentally disabled persons. The National Bureau of Standards measurement of self-preservation ability was used to define individual risk, resulting in the Evacuation Assistance Score. Environmental risk was measured by grouping residences according to fire safety standards described in the National Fire Protection Association's Life Safety Code. Results indicated that: (a) the Evacuation Assistance Score is best thought of as a single variable that measures any risk that might impede a resident's safe evacuation in a fire emergency, (b) the majority of the developmentally disabled individuals receiving services in New York were totally capable of self-preservation, (c) resident demographic characteristics were not strong predictors of Evacuation Assistance Scores, and (d) the match between individual and physical environment risk vulnerability was not strong.
Asunto(s)
Educación de las Personas con Discapacidad Intelectual , Urgencias Médicas , Incendios/prevención & control , Casas de Convalecencia/normas , Adolescente , Adulto , Anciano , Personas con Discapacidad , Femenino , Humanos , Masculino , Persona de Mediana EdadRESUMEN
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.
Asunto(s)
Casas de Convalecencia/estadística & datos numéricos , Necesidades y Demandas de Servicios de Salud , Investigación sobre Servicios de Salud , Discapacidad Intelectual/rehabilitación , Análisis de Varianza , Servicios Comunitarios de Salud Mental/provisión & distribución , Humanos , New YorkRESUMEN
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.
Asunto(s)
Envejecimiento , Discapacidad Intelectual/psicología , Actividades Cotidianas , Anciano , Enfermedad Crónica/epidemiología , Humanos , Discapacidad Intelectual/complicaciones , Locomoción , Persona de Mediana Edad , Destreza Motora , New York , Sistema de Registros , Instituciones Residenciales , SensaciónRESUMEN
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.
Asunto(s)
Demencia/epidemiología , Discapacidades del Desarrollo/psicología , Adulto , Edad de Inicio , Anciano , Atención a la Salud , Discapacidades del Desarrollo/complicaciones , Síndrome de Down/complicaciones , Síndrome de Down/psicología , Femenino , Planificación en Salud , Humanos , Discapacidad Intelectual/complicaciones , Discapacidad Intelectual/psicología , Masculino , Persona de Mediana Edad , Dinámica Poblacional , PrevalenciaRESUMEN
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.
Asunto(s)
Enfermedad de Alzheimer/rehabilitación , Demencia/rehabilitación , Necesidades y Demandas de Servicios de Salud , Discapacidad Intelectual/rehabilitación , Defensa del Paciente , Atención a la Salud , Humanos , Grupo de Atención al Paciente , Calidad de Vida , Investigación , Apoyo Social , Reino Unido , Estados UnidosRESUMEN
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.
Asunto(s)
Discapacidad Intelectual/rehabilitación , Instituciones Residenciales , Adolescente , Adulto , Factores de Edad , Anciano , Servicios Comunitarios de Salud Mental , Femenino , Humanos , Masculino , Persona de Mediana Edad , New York , Factores SexualesRESUMEN
Deinstitutionalization and the ensuing establishment of residence programs for developmentally disabled persons has stimulated both community support and opposition. The present study considers changes in the levels of community acceptance after residence programs are established, sources of program support and opposition, and strategies used to overcome community opposition. The data are based upon responses to a survey of all community residence programs in New York (n = 459). The findings indicate marked and consistent shifts toward the acceptance of established residence programs.
Asunto(s)
Relaciones Comunidad-Institución , Educación de las Personas con Discapacidad Intelectual , Casas de Convalecencia , Adulto , Actitud , Niño , Desinstitucionalización , Discapacidades del Desarrollo/psicología , Humanos , New YorkRESUMEN
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.
Asunto(s)
Enfermedad de Alzheimer/terapia , Discapacidad Intelectual/terapia , Actividades Cotidianas/clasificación , Actividades Cotidianas/psicología , Adulto , Anciano , Enfermedad de Alzheimer/diagnóstico , Cuidadores/educación , Cuidadores/psicología , Desinstitucionalización , Servicios de Atención de Salud a Domicilio , Humanos , Discapacidad Intelectual/diagnóstico , Persona de Mediana Edad , Grupo de Atención al PacienteRESUMEN
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.