Adults With Intellectual and Developmental Disabilities:
A Unique Population
By Carolyn C. Tinglin, MSc, RN
Today’s Geriatric Medicine
Vol. 6 No. 3 P. 22
Older adults with intellectual and developmental disabilities can present clinicians with unique challenges related to appropriate assessment and treatment. Providers need to develop the skills and sensitivity necessary to effectively treat these patients.
Adults with developmental disabilities are living longer, healthier, more meaningful lives. Within the past seven years, advancements in medicine and public policy changes, along with a societal push for inclusion, have provided physicians with an opportunity to play a pivotal role in promoting, managing, and delivering care that supports a high quality of life for older adults with intellectual and developmental disabilities (I/DD).
Many health care providers, people with disabilities, and families are unfamiliar with the latest information about the age-related health issues that affect people with I/DD. A need exists not only for more research in this area but also for disseminating information and for improved preventive and surveillance strategies across the life span for adults with I/DD. These strategies include targeted health education programs, appropriate screening, and community health promotion programs.
The number of adults with I/DD aged 60 and older is projected to nearly double from 641,860 in 2000 to 1.2 million by 2030.1 Adults with I/DD are more likely to develop chronic health conditions at younger ages than other adults because of biological factors related to syndromes and associated developmental disabilities, limited access to adequate health care, and lifestyle and environmental issues. These adults experience higher rates of obesity, sedentary behaviors, and poor nutritional habits compared with the general population.
Additionally, adults with I/DD can have a shorter life span compared with other older adults, which is thought to be caused by an accelerated aging process, manifest in their increased rates of cataracts, hearing loss, osteopenia, and hypothyroidism and a genetically elevated risk of developing Alzheimer’s disease. In fact, until the latter part of the 20th century, most individuals with I/DD experienced markedly shortened life expectancies, particularly in institutional residences.
However, aging adults with I/DD now often live well into old age in community settings. Families often provide specialized care early in the lives of these patients who are no longer left to languish in institutions. Group homes can offer adequate housing options for adults with I/DD whose parents or families cannot care for them. As individuals with I/DD are living longer, geriatrics providers and care team members need to learn about the characteristics, health care needs, and common clinical issues in this population.
Public policies increasingly have supported the rights of people with disabilities to live in the communities of their choice. Making this relevant to people with I/DD requires a corresponding increase in environmental supports to allow their full community participation. Until they reach the age of 21, individuals with I/DD are eligible to receive support services (eg, education, training, health promotion) through the Individuals With Disabilities Education Act. When eligibility for these services ends, the task of securing support shifts from the educational system to the individual and his or her family or other caregivers.
This task becomes more challenging over the individual’s life span as aging-related changes impact both the person with I/DD and his or her supporting family members. Key challenges that must be addressed by communities, families, and adults aging with I/DD include improving the health and function of these adults and their families, enhancing consumer-directed and family-based care, and reducing barriers to health and community participation.
Adults with I/DD generally see primary care physicians less often in comparison with the general population. Several barriers contribute to this, including the following:
• lack of access to primary care providers who are knowledgeable and experienced with the I/DD population;
• behavioral issues that could negatively impact the individual’s cooperation for tests, injections, etc;
• communication issues that make interaction among the provider, caregiver, and patient difficult;
• physical challenges (eg, cerebral palsy) that make it physically difficult to access a health care facility;
• environmental issues that may involve sensory challenges (eg, lighting, sound, smells) that interfere with a patient’s ability to effectively participate in the visit;
• burn out that renders caregivers unable to manage their own health in addition to the health of an adult with I/DD, including taking the adult to scheduled appointments; and
• a shortage of time for providers to accommodate adults with I/DD who may have communication and behavioral difficulties that create challenges to patient assessment and treatment.
Certain conditions are strongly associated with adults with I/DD and are more prevalent among this population. For example, there is a higher incidence of dental disease, functional decline, mental illness, bowel obstruction, gastrointestinal cancer, and obesity. Additionally, hearing impairment and vision loss are common in older adults with I/DD because of preexisting undiagnosed pathologies.
Regularly scheduled screening and assessments (yearly or every six months, if required) is recommended along with a multidisciplinary approach to health maintenance. Key health issues that require careful examination include the following:
• Pain and distress: Nonverbal patients can be assessed with a caregiver’s help as well as pain assessment tools adapted for adults with I/DD.
• Polypharmacy: It’s common for the I/DD population to have numerous medications prescribed by various providers. It’s important to sort out medication use, capacity to follow the medication regime, and assistance required to support medication compliance.
• Vision and hearing: Screen for cataracts and glaucoma (yearly for those aged 45 and older) and assess hearing, especially in light of reported changes in behavior. (Cerumen impaction may be a common cause.)
• Dental disease: General oral examinations may reveal the need for further investigation or closer monitoring by a dental professional.
• Musculoskeletal disorders: Adults with I/DD are at high risk of osteoporosis and contractures related to reduced or limited activity. Osteoporosis occurs earlier in the I/DD population compared with the general population. Osteoarthritis also is an area of concern.
• Gastrointestinal disorders: Screening plays an important role in the identification of gastroesophageal reflux disease. Colon cancer screening follows the same protocol used in the general population.
• Vaccinations: Recent research reveals that adults with I/DD do not receive vaccinations at the same rate as adults in the general population.
Adults with I/DD who also have mental health issues often are misdiagnosed. Psychiatric screening is imperative and tools such as the Abberant Behavior Checklist and the Psychiatric Assessment Schedule for Adults with I/DD are most helpful.
Nonverbal patients pose a more complicated challenge, and it may be difficult to make a clear diagnosis when symptoms such as delusions and hallucinations are present. Leading practice suggests the use of an interdisciplinary team of primary care providers, psychiatrists, and psychologists to manage psychological, emotional, and behavioral issues.
Most patients are accompanied to medical appointments either by a professional caregiver or a family member. Although a caregiver’s input can be helpful, clinicians are encouraged to not only include a patient in all interactions but also to speak directly to the patient unless communication becomes a barrier. Even patients who have no verbal communication skills should be addressed by name during the visit and included in conversations pertaining to the routines and processes.
Health goals for adults with I/DD are similar to those that apply to the general population: to maintain or improve community participation, support a good quality of life (as defined by the individual and/or caregiver), promote wellness, and minimize acute care visits.
Careful planning prior to examining an adult with I/DD will ensure good use of scheduled time and no overlooked assessments. When planning for tests and screenings, there are important questions to consider, including the following:
• What is the best way to communicate with this patient? This information can be obtained from someone who knows the patient well or directly from the caregiver.
• Will the environment hinder the flow of the appointment (eg, distracting sounds, enclosed space, proximity to other patients)?
• Are there sensory issues that may impede the appointment (eg, smells, light, white noise)?
• Does the patient require sedation to complete any tests or exams?
• Can the caregiver assist with the visit (eg, repositioning the patient, answering questions)?
• Are any other health care team members needed to complete the visit, such as nurses, audiologists, speech therapists, or dietitians?
• Does the patient use adaptive devices (eg, iPad, communication cards, voice interpreters)?
It’s important to consider the accommodations in terms of staffing and procedures that may need to be made during the course of the visit.
Current research provides no specific age range or cutoff that clearly defines the geriatric adult with I/DD. Typically, aging adults with I/DD may not have mobility or functional issues as observed in older adults in the general population. Adults with I/DD in their 40s may present with conditions commonly seen in the general population after the age of 70 (eg, diabetes, mental health deterioration, chronic respiratory conditions). Regularly scheduled physical exams play an important role in the monitoring and management of acute and chronic health conditions.
Clinicians can utilize care coordination to help monitor and manage the health of patients with I/DD. Care coordination does not need to be elaborate or increasingly time consuming. But because of the complex needs of this patient population, understanding and communicating with the patient’s network of support ensures that all medical and social professionals involved with the patient are clear about the patient’s health goals and strategies developed to accomplish those goals.
Tapping Into Resources
A collaborative approach has proven to be the most successful in the care of adults with I/DD. Clinicians can rely on several resources to develop a plan of care for I/DD patients. Caregivers provide a good source of personal and practical information, and community support agencies such as the Developmental Disabilities Services and the Administration on Intellectual and Developmental Disabilities (at the federal level) that connect patients with community resources and funding are an instrumental part of the care continuum. Accessing information from community resources may be necessary to get a better understanding of a patient’s level of function in the community in order to set realistic health goals. The patient and/or a caregiver will be able to provide background information regarding which specific local community agencies provide him or her with financial and social support.
— Carolyn C. Tinglin, MSc, RN, is a health consultant working with youths and adults with dual diagnoses of intellectual and development disabilities and mental health needs. She has worked extensively in long term care, specializing in psychogeriatrics throughout the United States and Canada.
1. Heller T. People with intellectual and developmental disabilities growing old: an overview. Impact. 2010;23(1).
Rita, 49, lives in her own home with care staff who have known her for more than 15 years. She is nonverbal, using signs and grunts to communicate her needs. Diagnosed with autism, her developmental age is 1 1/2.
Rita’s primary caregiver reports that she has been much more irritable than usual, sometimes hitting and spitting at staff. Her sleep routine has changed over the last three months. She has been getting little sleep, with no more than four hours of uninterrupted sleep per night.
She is visiting the physician’s office/clinic for the first time and is scheduled for a new patient exam. Rita’s previous physician encounters addressed only specific urgent physical matters.
Weeks prior to Rita’s appointment, it was necessary to assess the pertinent information related to her visit, as follows:
• If Rita can’t make treatment decisions independently, who is responsible for doing so?
• Can Rita’s caregiver provide any background information about previous physician visits, hospitalizations, dental care, and/or psychological testing? Can the caregiver provide consent to obtain information from Rita’s other health care providers?
• If Rita has behavioral issues, does she require any as-needed medications to help her relax prior to the appointment? Are there favorite toys or objects that can be brought to the appointment?
• How much time should be scheduled for this appointment? Can Rita tolerate sitting or limited movement for this length of time?
• Does Rita have sensory issues? Will they affect how the exam is conducted?
It also was important to assign specific staff members to assist with Rita’s examination and treatment.
It was necessary to keep Rita’s wait time to a minimum. For many adults with I/DD, sitting quietly in a waiting room for long periods of time may contribute to soreness, pain, or increased irritability.
A friendly face goes a long way, so one staff member was assigned to assist Rita for the duration of her appointment, greeting Rita and her caregiver, providing reassurance and comfort, and preparing Rita for the new patient exam.
After being greeted and seated in the exam room, Rita and her caregiver could engage in familiar activities such as reading or playing with personal toys or objects.
Once in the exam room, Rita spontaneously began self-stimulation (“stimming”) by rocking back and forth and humming. Rita often does this when feeling anxious. The clinician waited until the stimming stopped. (An alternative would be to ask the caregiver to attempt to calm the patient or even redirect her attention to something else she enjoys.)
Before beginning the exam, the clinician explained to Rita and her caregiver what would be done and confirmed with the caregiver what assistance would be needed. Short, direct face-to-face communication worked best with Rita.
Rita’s tolerance dictated the exam’s success. It was necessary for the clinician to monitor Rita’s responses and modify procedures as necessary. For example, had Rita become agitated when the clinician attempted to assess her lungs, the caregiver and assigned staff member could have assisted with calming Rita while the clinician moved on to the next aspect of the exam. The overall goal is to make the experience a positive one for all involved.
During the exam, it was necessary for the clinician to maintain periodic communication with both Rita and her caregiver. “Checking in” with a patient helps to establish trust and can help relieve anxiety. Checking in can be as simple as saying, “Rita, we’re almost finished here. Are you OK? You’re doing a fantastic job!”
After the Appointment
Once the appointment was finished, the clinician reviewed his findings. With a collaborative approach in mind, he needed to decide whether other team members or clinical professionals could be instrumental in maintaining a good quality of life for Rita.
The clinician had staff follow up with the caregiver by phone or e-mail to communicate the next steps for Rita’s care and discuss subsequent appointments. He also asked for feedback regarding Rita’s appointment, soliciting suggestions for improvement if there were any.
Useful Resources for Clinicians
• Guidelines for Structuring Community Care and Supports for People With Intellectual Disabilities Affected by Dementia (http://aadmd.org/sites/default/files/NTG_Guidelines-posting-version.pdf)
• Bridging the Aging and Developmental Disabilities Service Networks: Challenges and Best Practices (www.acf.hhs.gov/sites/default/files/aidd/bridgingreport_3_15_2012.pdf)
• Primary Care of Adults With Developmental Disabilities — Canadian Census Guidelines (www.cfp.ca/content/57/5/541.full.pdf)