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.

Area agency on aging outreach and assistance for households with older carers of an adult with a developmental disability.

A demonstration project was undertaken in the state of New York to assess how area agencies on aging (AAAs) would approach outreach and direct aid to families caring for someone with a developmental disability. It was found that AAAs organized their outreach and direct-aid efforts using three main approaches: direct operation, contract operations, and multi-organizational. They generally organized staff time so that about two days per week of effort was devoted to undertaking outreach activities, conducting community education, and providing casework and referrals for target families. Four major distinctions were identified that differentiated work with older carers of persons with a developmental disability from that with other kinds of carers: complexity of problems presented by households identified, vagaries of fiscal resources, diverse household composition, and planning for eventualities. It was concluded that targeting AAAs for outreach and providing help to these carers was effective and productive and should be replicated throughout the United States.