Healthy Aging for Older Adults with Intellectual and Developmental Disabilities

Abstract

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.

Guidelines for Dementia-Related Health Advocacy for Adults With Intellectual Disability and Dementia: National Task Group on Intellectual Disabilities and Dementia Practices

“…1, 2-29 'AAIDD DOI: 10.1352/1934 Some of these challenges may include a lack of knowledge about early symptoms, difficulties with seeking out help for screening and assessment to obtain an accurate diagnosis and finding appropriate clinical services to aid with maintaining health status, as well as poor communication with medical and health services personnel during medical appointments and inadequate follow-up for treatment of comorbidities (Aggarwal, 2013;Iacono & Sutherland, 2006;Janicki et al, 2002;McCarron et al, 2005). There may also be difficulties when locating appropriate assessment and diagnostic services that can help rule out conditions that mimic, mask, or exacerbate the symptoms of chronic dementia (Bishop et al, 2013, Henderson & Davidson, 2000Llewellyn, 2011;Moran et al, 2013;Oliver & Kalsy, 2005;Pary, Rajendran, & Stonechipher, 2006). These difficulties may impede receipt of appropriate health and diagnostic services.…”

“…Given the nature of the problems encountered, it may fall on family, friends, and staff to become advocates. Being alert to suspicions, noting the areas of concern, locating the appropriate practitioner to make an assessment, arranging for assessment visits, and following through on dementia care and support recommendations all fall under the concept of dementia-related health advocacy (Bishop et al, 2013;Keller, 2013;Robinson, Dauenhauer, Bishop, & Baxter, 2012). The NTG posits that the aims of health advocacy related to dementia and intellectual disability include the following: (a) representing the interests of adults suspected of having or being impacted by dementia; (b) aiding in ensuring that all health matters, irrespective of the presence of dementia, receive attention; and (c) initiating and following through on contacts with the health system.…”

“…Adults with ID who have Down syndrome have been found to have a greater risk for Alzheimer's disease and demonstrate an earlier onset of symptoms when affected (Ball et al, 2006;Ball, Holland, Treppner, Watson, & Huppert, 2008;Evenhuis, 1997;Holland, 1999;McCarron, McCallion, Reilly, & Mulryan, 2014a;Oliver & Kalsy, 2005). Even though they have an increased chance of developing early-onset Alzheimer's disease, other age-related conditions may present with symptoms that may appear similar to those of dementia, such as depression and thyroid dysfunction, or that may result from overmedication or undernutrition, which are amenable to treatment (Ball et al, 2006;Ball et al, 2008;Bishop et al, 2013;Holland, 1999;Prasher, 2005).…”

“…Alternative and in some instances treatable conditions that may present as symptoms of dementia include depression, seizures, hypothyroidism, hearing impairment, infections, and adverse side effects of medications, sleep apnea, heart disease, and anemia (Bishop et al, 2013;Janicki et al, 1997;Moran et al, 2013). Acknowledging early signs and symptoms can also help determine proper interventions and lifestyle changes that may delay aggressive decline and health complications (McCarron et al, 2005;Oliver & Kalsy, 2005).…”

“…Consequently, questions have been raised as to how formal (paid staff) and informal (family or friends) caregivers could best obtain help with accessing appropriate diagnostic and post-diagnostic supportive health services (Bishop & Lucchino, 2010;Bishop, Robinson, & Van Lare, 2013;Jokinen et al, 2013). In 2010, the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) was formed and charged to work in correspondence with activities emanating from the government's implementation of the National Plan to Address Alzheimer's Disease (U.S. Department of Health and Human Services [DHSS], 2012), as the nation lacked a coherent policy on enabling adults with ID to receive appropriate community-based diagnostic and dementia care services (Janicki & Keller, 2014).…”