The number of older adults with intellectual and developmental disabilities (IDD) has increased rapidly in the United States as part of the general "graying"of the country. This has presented challenges in maintaining the quality of life and health for these individuals in later years. Issues including diagnostic overshadowing (the tendency to overlook symptoms of mental or physical illness as causes for decline), lack of knowledge about aging in adults with IDD, and health care disparities are discussed in this article along with recommendations for clinicians to help them meet this growing challenge.
The Consensus recommendations will ensure greater and more appropriate support at end of life for persons with intellectual disabilities and advanced dementia.
Similar to the general population, adults with intellectual and developmental disabilities (IDD) are living into their 70s and beyond. Health care disparities have been well-documented for this vulnerable and underserved population. Social workers are often responsible for assessment, coordination of care, and negotiation of needed services for people with IDD. This article explores the challenges facing social workers in meeting the growing health and social needs of aging adults with IDD and their families. Trends in social work practice and gaps in education are discussed as they relate to addressing and reducing current health disparities.
Increasing numbers of adults with intellectual disabilities (ID) are living into old age. Though this indicates the positive effects of improved health care and quality of life, the end result is that more adults with ID are and will be experiencing age-related health problems and also exhibiting symptoms of cognitive impairment and decline, some attributable to dementia. Early symptoms of dementia can be subtle and in adults with ID are often masked by their lifelong cognitive impairment, combined with the benign effects of aging. A challenge for caregivers is to recognize and communicate symptoms, as well as find appropriate practitioners familiar with the medical issues presented by aging adults with lifelong disabilities. Noting changes in behavior and function and raising suspicions with a healthcare practitioner, during routine or ad hoc visits, can help focus the examination and potentially validate that the decline is the result of the onset or progression of dementia. It can also help in ruling out reversible conditions that may have similar presentation of symptoms typical for Alzheimer's disease and related dementias. To enable caregivers, whether family members or staff, to prepare for and advocate during health visits, the National Task Group on Intellectual Disabilities and Dementia Practices has developed guidelines and recommendations for dementia-related health advocacy preparation and assistance that can be undertaken by provider and advocacy organizations.
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.
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