Larger percentages of adults with intellectual and developmental disabilities (IDD) in the United States are living into their 70s and beyond, parallel with the extended longevity of adults in the general population (Tyler & Noritz, 2009). It is estimated that there are approximately 650,000 adults 60 and older with IDD and related conditions; population projections further note this number will double by 2030 (Tyler & Noritz, 2009). It is also estimated that there are at least double the numbers of adults with IDD who have never sought assistance from an agency and therefore are not counted in the estimated numbers. Many of these older adults live at home with their aging caregivers, who are also experiencing age-related changes and progressively need more day-to-day help. As caregivers age, both families and individuals living with IDD are increasingly likely to need assistance from agencies and service providers in the community (Heller, Janicki, & Hammel, 2001).
IDD is characterized by significant limitations both in intellectual functioning and adaptive behavior, which covers many everyday social and practical skills. By federal definition, this disability originates before age 18 and is expected to last over the lifetime of the individual. The more common types of disabilities include autism, Asperger syndrome, Down syndrome, and cerebral palsy. The severity of the disability will affect activities of daily living, learning, socialization, and vocation, thus affecting the person’s ability to live independently (American Psychiatric Association, 2000; Luckasson et al., 2002).
Aging and Health Care Challenges
Vast improvements in care and residential opportunities have increased the average life span for people with IDD. Studies have shown that adults with IDD in the United States and other industrialized countries have higher rates of comorbidities than the general population (Evenhuis, Henderson, Beange, Lennox, & Chicoine, 2001; Janicki, Dalton, Henderson, & Davidson, 1999). This increase in longevity means an already vulnerable older population will need more attention and support from primary care offices and formal or informal caregivers.
Adults with IDD are experiencing the same age-related diseases and conditions as the general population. However, health care disparities are well documented for this vulnerable and underserved population, especially due to the lack of available research on aging with IDD, lack of experience by health care providers in caring for these individuals, and ageism combined with stereotypes of lack of capacity for self-advocacy due to the disability (Robinson, Dauenhauer, Bishop, & Baxter, 2012). Additionally, self-advocacy for quality health care is often challenged by communication difficulties and the assumption or reality of lack of ability to give informed information on symptoms and treatment choices (Robinson et al., 2012; Tyler & Noritz, 2009).
Diagnostic overshadowing, the tendency to ignore physical or mental illness symptoms—therefore blaming the resulting decline on the primary diagnosis or the chronological age—also adds challenges for maintaining quality of health and life in later years (Luckasson et al., 2002; Mason & Scior, 2004). For example, Tom, a 65-year-old man with Down syndrome, exhibited reluctance to attend his day program, confusion when greeting staff, frequent crying, and inability to perform his activities of daily living. These were all changes from his previous behavior but were assumed by his primary physician to be attributed to aging with Down syndrome. Advocacy by family and the agency nurse, who insisted on further testing, determined that Tom was experiencing significant pain from arthritis and significant hearing impairment, which explained the changes in his behavior.
Approximately 30% to 35% of adults with IDD also have a mental illness diagnosis, complicating accurate diagnoses for new symptoms. These disorders include mood, personality, and anxiety disorders (Robinson et al., 2012). In the early and mid-1900s, adults with both disorders (i.e., dual diagnosis) were treated within the same facilities or moved back and forth between institutions. Rarely were formal diagnostic procedures used, so the labels used at that time continue to be the same today for those older adults who were part of this system (Laughlin, 2004; Noll & Trent, 2004).
Appropriate and prudent prescribing of medications for older adults presents unique challenges in the general population. For older adults with IDD, mental health disorders, several chronic conditions, and longstanding medication regimens, accurate prescribing can be extremely challenging. As health care providers prescribe more medications, the risk of drug reactions and interactions is significantly increased. Unfortunately, little evidence-based research is available on how medications affect the aging body, and little to none is available on how medications affect older adults with IDD (Fick & Semla, 2012).
Heath Care Advocacy
Because of the above health care challenges, advocacy for quality health care is essential to maintain quality of health and life in later years (Robinson et al., 2012). Nurses, other clinicians, and family can play an essential role in the identification of changes and unmet needs for people with IDD and mental health diagnoses to help prevent misdiagnosis of symptoms when an older adult is exhibiting decline or change in behavior (Jones, Howard, & Thornicroft, 2008). Challenges to providing quality care requiring advocacy include—but are not limited to—lack of knowledge about aging with a complex array of pre-existing diagnoses, polypharmacy, and increasing numbers of vulnerable adults in the general population and the IDD subpopulation. These factors can lead to lack of appropriate assessments or interventions, as well as diagnostic overshadowing (Janicki et al., 1999).
Good communication of medical history and current symptoms by health care advocates is essential for receiving appropriate and timely treatment. The baseline cognitive functioning (prior to disease process) of an individual with IDD will determine the ability to recognize and communicate any changes to the health care providers. Without knowledge of baseline abilities, health, and functional status, misdiagnosis can occur, especially if the provider is comparing the adult’s functioning to the general population rather than who that individual has been throughout a lifetime (Robinson et al., 2012). A misdiagnosis can result in the prescribing of inappropriate medications, overlooking significant risk factors or symptoms, and/or missed opportunities for treatment to maintain or improve overall health status (Fisher, 2004; Jones et al., 2008; Jopp & Keys, 2001).
Several key areas for attention by knowledgeable advocates include transitional adjustments such as moving to a new, accessible residence without input from the adult with IDD; personal losses or change in favorite staff or death of a loved family member; and physical changes due to disease process and pain. Too often providers may not look beyond the behavior, assumption of dementia in older years, or pre-existing disability to identify the real underlying physical problem (Evenhuis et al., 2000; Jopp & Keyes, 2001).
The following individual example illustrates the problem of inappropriate assumptions about an older individual with IDD and the resulting misdiagnosis. This example comes from a geriatric assessment clinic (GAC) in Rochester, New York. The GAC consists of a multidisciplinary team comprised of a physician, RN, psychologist, and an occupational therapist, all of whom have years of experience in the field of aging and IDD. The team conducts psychological testing; physical examination; review of medical/health histories; and interviews with the patient, family members, and staff to provide comprehensive assessment and interventions.
A 56-year-old female patient, Ruth (pseudonym), lived in a group home and attended an agency-sponsored day program. She spent many holidays and weekends with her family who lived in the area. Ruth’s original diagnoses were moderate intellectual disabilities, hypertension, hypothyroidism, and gastroesophageal reflux disease. Her limited verbal ability made communication with her health care provider very difficult. During most appointments, her staff or family provided information due to her communication challenges.
At one point in time, Ruth’s attention span decreased dramatically, interest in everyday activities lessened, and she had inappropriate behavioral outbursts. She was under the care of a primary care physician (PCP) who assumed that “dementia” was the cause for the changes in behavior and decline in participation in activities. He placed her on donepezil (Aricept®) and a new anti-anxiety medication without exploring any other causes.
Ruth was referred to the GAC by staff and family as the changes in her behaviors increased. The GAC completed a thorough review of her medical, medication, and behavioral history. She was tested to ascertain memory disorders. Family, day program staff, and residential staff were interviewed so a complete history could be gathered. A brief physical examination was completed by the physician and RN on the GAC team.
The team found that Ruth’s previous documented 20/20 vision had decreased with significant farsightedness noted. It was determined that her inability to focus on close-up objects or her normal activities of daily living caused frustration, anxiety, and anger. She had also expressed disinterest in activities such as puzzles and objects on the table, likely related to her difficulty in seeing the activities. Her inability to express this frustration resulted in previously unseen behaviors. These behaviors led to a misdiagnosis of dementia by the PCP and the start of two potent medications she did not need. Fortunately, the Aricept administration had not been longstanding, so it was discontinued immediately. Had she not had the opportunity to be evaluated by the specialty clinic, Ruth would have remained with an inaccurate diagnosis, medications she did not require, and without glasses.
Summary and Recommendations
Expertise in aging and adults with IDD is paramount for nurses, other health professionals, and family involved in their care, especially as the family caregivers become no longer available to provide day-to-day care or advocacy. The unique challenges of aging healthfully, coupled with the physical and psychiatric diagnoses this population presents, demands this expertise if nurses are to ensure positive outcomes in health care. To enhance this expertise, the authors recommend the following:
- Nurses and other clinicians have the responsibility of being the content expert to work closely with health care providers to ensure the process of differential diagnosis is used and that diagnostic overshadowing and misdiagnosis are avoided.
- Nurses or other trained clinicians must educate caregivers on expected changes with aging in any older adult, as well as changes in adults with IDD. They must be trained in observation and reporting of symptoms by individuals who cannot communicate those symptoms verbally. The symptoms may be masked or mimicked by many diseases, making this a complex process. Nurses are essential to train adults with IDD, staff, and family to advocate with the providers so accurate diagnostic and intervention decisions are made.
- It can be difficult for the health care provider who does not have relevant experience with aging or IDD to consider how the older adult’s system has been compromised with premature aging due to lifelong comorbidities and medications. Whenever possible, it is helpful to seek out providers who work with agencies serving adults with IDD, along with geriatricians.
- Evidence-based research is needed for increased understanding of the challenges and diverse needs of older adults with IDD. Thorough documentation on medical, medication, and behavioral history will make this research possible in the future.
- Nurses and other caregivers must realize the important role of advocating on all levels to ensure that older adults with IDD are afforded the time and effort required to arrive at the best possible outcomes. This advocacy includes assuring accurate information for health care providers and preventive education for caregivers and aging individuals.
Appropriate assessments and interventions, as guided by advocates, can result in older adults with IDD continuing to be involved in ongoing learning, socialization, and lifelong interests, thus assuring a meaningful existence in this last stage of life. Advocacy across the life span for adults with IDD can make a difference for quality of life, health, and functioning in later years.
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