Meeting the End of Life Needs of Older Adults with Intellectual Disabilities (original) (raw)

The Influence of Intellectual Disability on Life Expectancy

The Journals of Gerontology Series A: Biological Sciences and Medical Sciences, 2002

Background . To date, relatively few representative data have been available to health planners and advocacy groups on the life expectancy of people with intellectual disability. A study of trends in the survival profiles of people with intellectual disability was undertaken to assist in the planning of appropriate medical and support services.

Life expectancy of people with intellectual disability: a 35-year follow-up study

Journal of Intellectual Disability Research, 2000

A -year follow-up study based on a nationwide population study of the life expectancy of people with intellectual disability (ID) was undertaken. The study population consisted of a total of   person-years. A prospective cohort study with mortality follow-up for  years was used and the life expectancy of people with ID was calculated for different levels of intelligence. Proportional hazard models were used to assess the influence of level of intelligence and associated disorders on survival. People with mild ID did not have poorer life expectancy than the general population and subjects with mild ID did not have lower life expectancy in the first  decades of life. In cases with profound ID, the proportion of expected life lost was > % for almost all age groups. The female preponderance was manifested from the age of  years onwards,  years later than in the general population. Respectively, survival between sexes differed less. Epilepsy and/or hearing impairment increased the relative risk of death for all levels of ID. The prevalence of people with ID over  years was .%. People with ID now live longer than previously expected, and the ageing of people with mild ID appears to be equal to that of the general population, posing new challenges to health care professionals.

The Impact of Ageing in People with Intellectual and Developmental Disability

In the countries of Western Europe, death rates declined rapidly during the 20th century, resulting in present-day life expectancies that range from 75-79 years for males and 80-84 years for females. Premature mortality among people with intellectual and developmental disability (IDD) also decreased very significantly, especially over the course of last 50 years, with the result that life expectancy estimates are now over 70 years for people with mild IDD and 60 years for those with severe levels of IDD. The pattern of increasing survival of people with IDD means that in future years they almost inevitably will be at greater risk of age-related ill-health. There are many disorders that arise later in adulthood which commonly affect those with IDD, such as obesity, osteoporosis, epilepsy, cardiovascular disease, and dementia. Generally, the age-related ill-health experienced by people with IDD occurs at younger ages than in the general population, and greater focus is needed on disorders which emerge during middle age to senescence so that appropriate management regimes can be implemented. These are important considerations in terms of the types and continuity of care to be made available, especially since many people with IDD already outlive their parents and other family members.

Increased longevity and the comorbidities associated with intellectual and developmental disability

The health and survival of people with intellectual and developmental disabilities (IDD) have increased significantly during the past century, aided by deinstitutionalisation and improved access to health care. In high-income countries, life expectancy estimates are now approximately 70 years for people with mild IDD and 60 years for those with more severe levels of IDD. The increasing survival of people with IDD will result in a greater risk of age-related morbidity, both adult-onset cancers and non-malignant disorders, especially since age-related comorbidities generally appear at younger ages than in the general population. In disorders such as Down syndrome, a 'whole of life' approach to health care is required, with greater focus especially needed on the period spanning middle age to senescence so that appropriate management regimes can be implemented on an individual and disorder-specific basis. Secondary conditions that arise later in adulthood, including osteoporosis, obesity, cardiovascular disease, epilepsy and dementia, additionally need to be considered within health care plans. The types of interventions offered and continuity of care are of critical importance, especially since people with IDD, including those with Down syndrome, will frequently outlive their parents and even their siblings. DC: American Psychiatric Association. Ashman Af, Suttie Jn, Bramley J (1995) Employment, retirement and elderly persons with an intellectual disability.

Unique and Universal Barriers: Hospice Care for Aging Adults with Intellectual Disability

American Journal on Intellectual and Developmental Disabilities, 2012

As life expectancy of people with intellectual disability (ID) has increased, there has been a concurrent increase in age-related illnesses and conditions similar to that of the general population. These circumstances result in people with ID dying from typical life-ending conditions, and thus, they require similar end-of-life services such as palliative and hospice care. Although there are notable barriers to hospice for all, people with ID face additional challenges in accessing the benefits of these services. This article presents a review of the literature on these issues, underscoring the multiple challenges and the importance of a more collaborative approach between hospice and palliative care workers with people with ID, their families, and other important stakeholders.

Social impact of ageing in people with intellectual disabilities

Introduction: People with intellectual disabilities have a longer life expectancy than ever before, which is resulting in an increase in population of the elderly in this group. There is scant information about ageing related issues in this population especial the psychosocial aspects. Aims: The objectives of the review is to highlight the social impact related to ageing in the growing population of the individuals with intellectual disabilities in different areas and cultures and to suggest ways of addressing any difficulties. Methods: Relevant articles were searched from electronic databases. Results: There is a lack of appropriate studies to compare the care and health status for the elderly with learning disabilities in developed and developing countries. In different parts of the world those growing old with learning disabilities are managed in different ways; some are placed in specialist care homes while others are cared for by their families. There is inadequate support for this population which is leading to social isolation and marginalization and this is a major concern. Conclusion: Appropriate emphasis for the needs of the growing ageing intellectual disability population is required. Culturally appropriate actions to deal with social isolation and to develop facilities for elderly with learning disability are to be explored and put into place. There is a need to expand support for family and community care givers. Developing and improving the strategies that would address the needs will need a multidisciplinary effort.