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by Beth Marks and Jasmina Sisirak
Individuals with developmental disabilities living in community settings are increasingly enjoying similar lifespans as the general population. However, life expectancies are lower for individuals with a variety of syndromes and conditions (e.g., Down syndrome, severe intellectual disability, cerebral palsy, multiple disabilities). While many of the health concerns are similar to their peers without disabilities, they also often have health concerns related to their disability and the combination of aging with a life-long disability.
Disabilities Health issues related to disability are often not stable across a lifespan. Many people with disabilities show signs of earlier medical, functional, and psychosocial changes that are customarily not experienced by persons without disabilities until much later in life. For example, recent studies have documented higher rates of disease and death for adults aging with disabilities in comparison with the general population for a number of health conditions, such as difficulty eating or swallowing, dental disease, gastroesophageal reflux, esophagitis, respiratory disease and infections (leading cause of death), and constipation (White-Scott, 2007). Several chronic conditions seem to be more prevalent among individuals with disabilities than in the general population, including non-atherosclerotic heart disease, hypertension, hypercholesteremia, diabetes, obesity, reduced mobility, bone demineralization, and osteoporosis. Also, thyroid disease, effects of taking multiple psychotropic drugs, and deaths due to pneumonia, bowel obstruction, and intestinal perforation have a higher prevalence among groups of people with various disabilities.
Individuals with disabilities have a higher risk of developing chronic health conditions at younger ages than other adults, due to biological factors related to syndromes and associated developmental disabilities, problems with access to adequate health care, and lifestyle and environmental issues. Although people aging with developmental disabilities can now expect to live late into life along with their peers without disabilities, many experience major changes in health, function, and psychosocial status at much earlier ages. The new problems they report as early as in their 20s and 30s include the onset of age-related chronic health conditions, pain, and loss of energy and endurance. These changes, suggestive of premature aging, have a major impact on their ability to engage in community activities.
Persons with developmental disabilities who have syndrome-related conditions and certain health conditions (e.g., Down syndrome, Fragile X, Prader-Willi, cerebral palsy, epilepsy) are predisposed to certain health conditions based on their type of disability. For example, adults with Down syndrome have a higher prevalence (15% to 40%) of early-onset Alzheimer’s disease occurring 15-20 years earlier compared to the general population, and may experience hypothyroidism and sleep apnea more frequently (McCarron, Gill, McCallion, & Begley, 2005). Adults with Fragile X may have more issues with heart problems (mitral valve prolapse), musculoskeletal disorder, earlier menopause, epilepsy, and visual problems. Persons with Prader-Willi have high rates of cardiovascular disease and diabetes (Prasher & Janicki, 2002). As persons with cerebral palsy age, they have an increased likelihood of having reduced mobility, bone demineralization, fractures, decreased muscle tone and increased pain, difficulty eating or swallowing, and bowel and bladder concerns (White-Scott, 2007). People aging with cerebral palsy and epilepsy who use psychotropic and anti-seizure medications on a long-term basis also have a higher risk of developing osteoporosis (brittle bone disease) and tardive dyskinesia (repetitive, involuntary, purposeless movements caused by the long-term use of certain drugs). This risk is often compounded by limited physical activity and diets low in calcium and vitamin D. Anti-epileptic medications are also frequently given long-term to individuals with developmental disabilities. Studies suggest that osteoporosis and osteomalacia (softening of the bones) are potential side effects of certain antiepileptic medication, and vitamin D may be reduced, leading to possible loss of bone mass.
As people age, “confusion” is used as a broad and imprecise term to describe behavior changes. Common causes of confusion consist of the following: drug intoxication, circulatory disturbances, metabolic and fluid imbalances (e.g., thyroid and kidney problems), major medical and surgical treatments, neurologic disorders, infectious processes, nutritional deficiencies, abrupt loss of significant person, multiple losses in a short span of time, and moves to radically different environments (Ebersole et al., 2004). To provide appropriate care, it is important to understand distinctions between three conditions that can manifest as “confusion”: delirium, dementia, and depression (Edwards, 2003).
Delirium (used synonymously with “Acute Confusional State”) is severe confusion with hyperactivity. It is characterized by a rapid impairment of intellectual function resulting from a widespread disturbance of brain metabolism. Characteristics include clouding of consciousness, mental incoherence, and impaired concentration and attention; it may also be reversible (Edwards, 2003).
Dementia is broadly defined as an observable decline in mental abilities (APA, 2000). In general, its onset is insidious and memory impairment is often a prominent early symptom. People with dementia have difficulty learning new material. Short-term memory problems commonly result in losing valuables such as wallets and keys, or forgetting about food that is being cooked on the stove. In more severe dementia, people may forget previously learned material, such as the names of loved ones.
The World Health Organization defines depression as a “common mental disorder that presents with depressed mood, loss of interest or pleasure, feelings of guilt or low self-worth, disturbed sleep or appetite, low energy, and poor concentration” (WHO, 2010). It may coincide with major life changes and is typically worse in the morning. A person with depression has minimal impairment in attention, although they are easily distracted. Depression is more prevalent among people with developmental disabilities compared to their general population peers (Stavrakaki, 1999) and is frequently under-assessed, under-diagnosed and untreated. Several conditions may mimic depression, such as metabolic and endocrine disorders (e.g., serum glucose abnormalities, pernicious anemia, hypothyroidism, or hyperthyroidism) (Edwards, 2003; Sutherland & Sklar, 1999).
Age-related changes in health and functioning and psychosocial losses necessitate accessing an array of potential supportive services. As people with developmental disabilities age and have more difficulties with activities of daily living (ADLs), maintaining a household or employment may become more difficult. Also, they often have greater needs for family and social support, assistive technologies, environmental accommodations, therapeutic and nursing services, and respite and other housing and vocational supports.
Families and professional caregivers have a pivotal role in meeting the increased needs for support of people with developmental disabilities as they age. As people with life-long disabilities live longer, parents may experience extended caregiving responsibilities at a time in life when they are experiencing their own health care issues and are potentially in need of caregiver support for themselves. Many service delivery systems and communities are not prepared to meet the needs of adults with developmental disabilities who will likely need day and residential services as they age, and no longer have parents to provide care for them.
As individuals with long-term disabilities and other older adults face declines in health and function, a greater need exists for assistive technology and environmental interventions to help them maintain their independence and community participation. New and highly personalized devices and technological advances can now aid aging individuals with disabilities in maintaining or increasing independence, productivity, and quality of life. Innovations in assistive technology and environmental interventions reduce their dependencies on others for assistance, lower their risk of secondary conditions, allow caregivers to provide assistance more easily, and forestall the need for nursing home care. Advances in microelectronics, computer science, communications, bioengineering, and health and rehabilitation sciences have led to the development of a host of physical and cognitive aids. These aids can help older adults function in work, home, recreational, and other community settings as they encounter age-related changes. Examples of the uses of such technologies include the following:
While many older individuals and their caregivers could benefit from such advances, often they are unaware or unable to access or pay for them. This is particularly true for individuals with developmental disabilities who lag behind other disability groups in their use of technology. Barriers to use include lack of proper equipment, poor fit of mobility devices, lack of training in use of equipment, poor communication of needs, and reluctance to accept the necessity for the devices. In the United States, the Technology Act (Technology-Related Assistance for Individuals with Disabilities Act of 1988, and 1994 amendments) provides financial assistance to the states to support programs of technology-related assistance for individuals with disabilities of all ages. These programs provide technical assistance, information, training, and public awareness activities relating to the provision of assistive technology and environmental intervention devices and services. They also promote initiatives to increase the availability of funding for, access to, and provision of such devices and services.
Now that people are living longer with a disability, health promotion and disease prevention increase in importance. Key components of health promotion include adequate health care, diet and nutrition, and physical activities. Although persons with developmental disabilities have a significant need for routine primary care screenings as they age, in general, for them surveillance and early detection of chronic health conditions are poor. Screening activities such as breast, pelvic, and prostate examinations; blood pressure and cholesterol checks; urinalysis; and bowel analysis can lead to enhanced functioning, prevention of conditions, and an increased quality of life.
Physical barriers often constitute a chronic problem for many persons with disabilities. Health care facilities often are not accessible to individuals who may have physical and sensory impairments. In addition, persons with disabilities often experience difficulties with examinations and procedures. For many people, the most important barrier to effective medical care is case complexity. They encounter a variety of medical subspecialists, dentists, mental health providers, and other health care professionals, often without sufficient guidance.
With the scant attention given to health promotion strategies for people with disabilities, a need exists for community organizations to provide health promotion services (e.g., health education and fitness activities) for persons with disabilities to address age-related and disability-related conditions and decrease the risk of acquiring new health conditions. For example, for people with cerebral palsy, exercise prescriptions need to consider the potential for muscle overuse resulting in pain, injury, and fatigue. Adults with Down syndrome are more prone to osteoporosis and are more likely than other people to require calcium and vitamin D supplements as they age. Although specific guidelines pertaining to the types of exercises, nutritional requirements, and use of medications for individualized care are limited, in the past decade health promotion programs developed for adults with developmental disabilities have demonstrated positive psychosocial and physical health outcomes (Heller, Hsieh, & Rimmer, 2004; Rimmer, Heller, Wang, & Valerio, 2004).
The coordination of care between persons with disabilities, various health care providers, and families is critical for provision of health-related activities. Many primary care providers have received little education in disability or geriatrics, and they often lack training in dealing with multiple conditions, interacting medicines, and unique aspects of various disabilities. Increasing the understanding of ways that exercise and nutrition influence health, and of ways to promote more positive lifestyle behaviors among individuals with developmental disabilities and their supports is critical to improving health status and participation in community life.
The aging and disability service systems will need to build greater capacity to provide services to a growing number of persons with lifelong disabilities who are aging, and to other older individuals with disabilities who will increasingly need more services and supports to maintain their health and independence. Communities will need to make adaptations for this population by designing environments that accommodate elders of diverse abilities and functional limits. This includes developing more accessible transportation, recreational facilities, and businesses. In addition, there is a need for better and more training of health care professionals on age-related changes in people with disabilities. Finally, family caregivers, who provide the greatest amount of care physically, emotionally, psychologically, and financially, will need supportive services.
Note: The contents of this article were developed under Grant #H133B080009 from the National Institute on Disability and Rehabilitation Research, U.S. Department of Education, to the Rehabilitation Research and Training Center on Aging with Developmental Disabilities, University of Illinois at Chicago.
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Prasher, V. P., & Janicki, M. P. (2002). Physical health of adults with intellectual disabilities. Malden, MA: Wiley-Blackwell.
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Stavrakaki, C. (1999). Depression, anxiety and adjustment disorders in people with developmental disabilities. In N. Bouras (Ed.), Psychiatric and behavioural disorders in developmental disabilities and mental retardation. Cambridge, United Kingdom: Cambridge University Press.
Sutherland, D., & Sklar, V. (1999). Psychosocial issues. In S. Malony, C. Waszynski, & C. Lyder (Eds.). Gerontological nursing: An advanced practice approach (pp. 473-503). Stanford, CT: Appleton & Lange.
White-Scott, S. (2007). Health care and health promotion for aging individuals with intellectual disabilities. Paper presented at the State of Science in Aging with Developmental Disabilities, Atlanta, GA.
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Beth Marks is Associate Director for Research at the Rehabilitation Research and Training Center on Aging with Developmental Disabilities, University of Illinois at Chicago. She may be reached at 312/413-4097 or Bmarks1@uic.edu. Jasmina Sisirak is Associate Project Director for the Health Promotion Projects at the center and may be reached at 312/996-3982 or email@example.com.
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