Matthew P. Janicki

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.

Physical Health of Adults with Intellectual Disabilities

Physical health considerations of persons with an intellectual disability are attracting attention within the contexts of human rights, public health, and health promotion. Research has shown that the prevalence of certain conditions and diseases is much higher in adults with an intellectual disability than in the general population. Experts from specific healthcare specialties draw on a strong research base to discuss key physical health considerations for the intellectual disability community. The result is a core resource for practitioners, researchers, students and advocates in this field.

Grandparent Caregivers I: Characteristics of the Grandparents and the Children with Disabilities for Whom They Care

Summary Using an informal data capture technique, 164 grandparents caring for 208 children with developmental delay or diagnosed disabilities were surveyed in New York City to determine their health status, emotional state, use of formal and informal services, and general life situation. The vast majority of grandparents were female (96%) and African-American (80%). Their ages ranged from 40 to 82. Generally they had cared for at least one grandchild for an average of seven years. The data showed that for these grandparents (1) caregiving was an all-consuming role, (2) their lives were fraught with uncertainty and they could not access sufficient formal and informal supports, and (3) they were constantly worried about the future.

Older Adults With Intellectual Disability in Residential Care Centers in Israel: Health Status and Service Utilization

To determine their health status, we studied 2,282 Israeli adults with intellectual disability who were at least 40 years of age and lived in residential care. Results showed that age is a significant factor in health status. The frequency of different disease categories (e.g., cardiovascular disease, cancer, and sensory impairments) increased significantly with age for both genders. Cardiovascular disease in this population was less prevalent when compared to the general population, suggesting that underdiagnosis of some diseases or conditions may be prevalent in this population. The patterns of organ-system morbidity with increasing age were similar to those in other studies conducted in several countries, suggesting that health status and outcomes could be independent of cultural factors.

Sensory impairments among older adults with intellectual disability

The extent of vision and hearing impairment was evaluated in a study of 45,500 adults with an intellectual disability, 35 years of age and older. Visual impairment or blindness was recorded in 25% of adults in the total sample, 21% of adults aged 35 to 59 years, 36% of adults aged 60 to 79 years, and 50% of adults aged 80 and older. Impaired hearing or deafness was recorded in 22% of adults in the total sample, 16% of adults aged 35 to 59 years, 35% of adults aged 60 to 79 years, and 62% of adults aged 80 and older. The results indicated a prevalence among adults with intellectual disability comparable to or greater than that found in the general population and that these sensory deficits occurred with increasing frequency with advancing age. These findings point to the need to heighten awareness among staff and other carers about vision and hearing problems, and the consequent problems which may develop in interpersonal, communication, and adaptive functioning. Findings also support general screening for...

Grandparent Carers II: Service Needs and Service Provision Issues

Summary A demonstration project was undertaken in two of New York Citys five boroughs using an intervention model to assess how a three-prong approach using outreach, provision of support groups, and case management could be used to aid grandparents acting as primary carers for children with developmental delay or disabilities. Three small community-based agencies participated in the demonstration. Several common themes were identified that warrant attention when working with older adults who assume later-age parenting roles: (1) recruitment, (2) pressing grandparent problems, (3) unresponsive service systems, (4) falling between the cracks, (5) mutual support, and (6) need for long-term planning.

Dementia-Related Care Decision-Making in Group Homes for Persons with Intellectual Disabilities

Abstract Alzheimers disease and related dementias affects a significant number of adults with intellectual disability (ID), in particular those with Down syndrome. Many affected adults live in small community group homes or with their families. How to provide sound and responsive community care is becoming a challenge for agencies faced with an increasing number of affected adults. This study reports the outcome of a survey of group homes serving adults with ID and dementia, explores the onset, duration and effects of dementia, and speaks to the impact of these on planning for community care of adults with ID. It also examines emerging community care models that provide for “dementia capable” supports and services. Two models, “aging in place” and “in place progression” are examined, as well as “referral out” reactions, with regard to care practices and critical agency decision making. A programmatic approach, the ECEPS model, for responding to dementia is offered.

Group home care for adults with intellectual disabilities and Alzheimer’s disease

The growing numbers of individuals with intellectual disabilities affected by Alzheimer’s disease and related dementias has raised new challenges for community care providers. This article examines means of providing community group home-based care in a sample of care providers in five different countries. The aim is to identify trends that have emerged. Two samples of group homes for adults with intellectual disabilities affected by dementia were studied to determine: (1) what are the physical characteristics of the homes; (2) what physical environmental adaptations have been made in response to behavioral deterioration expressed by residents with dementia; and (3) what are the demands on staff resulting from dementia care. The first sample of group homes in five countries provided comparative international data on home designs, staffing, costs, and residents. The second sample, drawn from homes in the USA and the UK, provided data on the impact of dementia. Findings revealed staffing and design of homes varied but generally abided by general practices of dementia care; homes relied on existing resources to manage changes posed by dementia care; programmatic and environmental adaptations were implemented to address progression of dementia; and residents with dementia presented more demands on staff time with respect to hygiene maintenance and behavior management when compared to other residents not affected by dementia.

The National Task Group on Intellectual Disabilities and Dementia Practices Consensus Recommendations for the Evaluation and Management of Dementia in Adults With Intellectual Disabilities

Adults with intellectual and developmental disabilities (I/DD) are increasingly presenting to their health care professionals with concerns related to growing older. One particularly challenging clinical question is related to the evaluation of suspected cognitive decline or dementia in older adults with I/DD, a question that most physicians feel ill-prepared to answer. The National Task Group on Intellectual Disabilities and Dementia Practices was convened to help formally address this topic, which remains largely underrepresented in the medical literature. The task group, comprising specialists who work extensively with adults with I/DD, has promulgated the following Consensus Recommendations for the Evaluation and Management of Dementia in Adults With Intellectual Disabilities as a framework for the practicing physician who seeks to approach this clinical question practically, thoughtfully, and comprehensively.

Controlled Evaluation of Support Groups for Grandparent Caregivers of Children with Developmental Disabilities and Delays.

There have been growing reports of older women and men caring for their grandchildren and great grandchildren. Many of these grandparents are caring for children with developmental disabilities. To systematically examine the effectiveness of a support group intervention for such grandparents, we recruited 97 grandparents through three agencies in New York City and assigned them to treatment and wait list control conditions. Significant reductions in symptoms of depression and increases in sense of empowerment and caregiving mastery were found for the treatment group. Similar effects were found for the control subjects when they later received the intervention.