Biomedical and structural factors impact oral health for people with intellectual and developmental disabilities (IDD). The onset of age prevalent chronic diseases and conditions can result in new cognitive or physical disabilities leaving individuals with IDD to contend with ageism as well as ableism and further exclusion from the oral health care systems. Environments and attitudes that inform how health care systems are built and maintained significantly impact quality of life and outcomes, more than the fact of being disabled or old. Understanding and easing the transitions that lay ahead of individuals aging with IDD will come from an inter-professional inclusive approach.
Key points
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Individuals with Intellectual and Developmental Disabilities (IDD) experience accelerated aging.
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Ageism and Ableism are essential barriers to inclusivity for individuals with IDD.
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Individuals who have long dealt with ableism often encounter biases and barriers to oral health care as a result of ageism as they experience increasing dependency as a result of age prevalent diseases.
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New challenges to independence may require managing transitions in care with implications for oral disease prevention and maintaining oral health over a lifetime.
Introduction
This article will define and discuss the significance of ableism and ageism for those aging with Intellectual and Developmental Disabilities (IDD) seeking oral health care. We will discuss accelerated aging in individuals with IDD and the consequences for oral health. Until the latter part of the 20th century, most individuals with IDD experienced markedly shortened life expectancies, particularly in institutional residences. Improvements in medical care have led to longer lifespans for people with disabilities. As adults aging with IDD live longer and with greater independence, providers face unique assessment and treatment challenges. Health care providers can play a pivotal role in promoting, managing, and delivering care that supports a high quality of life for older adults with IDD. Since oral health plays an important role in overall health and wellbeing, it is essential to address oral health concerns for aging individuals with IDD, who have an increased likelihood of developing chronic diseases.
Bioethicist Erik Parens advocates binocular thinking about disability, meaning considering the effects of the biomedical conditions of individuals in tandem with ways that assumptions about disability and social practices create or reduce opportunities for people with disabilities. Sometimes medical interventions can be the best way to promote the flourishing of people with disabilities, but, in many cases, changes to the social/physical environment are the priority. Indeed, both may be necessary. Even though we can make a conceptual distinction, the 2 aspects of binocular thinking about disability influence each other. For example, some of the diseases that aging people with IDD experience may result in a new or increased level of dependency. Parents of, and many baby boomers with IDD had few publicly funded family and community services, with institutional care and services the norm. Due to disability activism, legislation, and changes to social norms over the past several decades, there is greater access, choice, and control over services, which allows some individuals with IDD to gain and retain their independence. Increased dependency in older age can be particularly challenging for adults who may have struggled with ablest stereotypes to gain or maintain their independence over a lifetime. New challenges to independence may require managing transitions in care with implications for oral disease prevention and maintaining oral health over a lifetime. Throughout this article, we will employ binocular thinking to examine biomedical and structural factors that impact oral health for people with IDD.
The Centers for Disease Control and Prevention reports that about 27% of the population in the United States has some kind of impairment, with cognitive (12.8%) and mobility impairments (12.1%) being the most common. According to the US Census Bureau, the number of people 65 and over “reached 55.8 million or 16.8% of the population of the United States in 2020”. Approximately 35% of Americans 65 and older are disabled, and about 41% of disabled people are 65 and older. The number of adults with IDD age 60 years and older is projected to reach an estimated 1.2 million by 2030 when the baby boom generation will be over 65 years of age. National Core Indicators (NCI) data describe the characteristics of older adults with IDD. Data from 2017 to 2018 indicate that those under age 55 are more likely to have diagnoses of autism spectrum disorder or cerebral palsy compared with older cohorts. The proportion of the sample reported to have Down syndrome (DS) decreased with increasing age, likely given the onset of Alzheimer’s disease that is nearly 20 years earlier than the general population, owing to a shorter life expectancy.
The average lifespan for someone with IDD is 66 years old, compared to 77 years old among the general population. Lifespan varies depending on their diagnosis, with the lowest for those with cerebral palsy, whose average life expectancy is 51 . People with IDD have experienced an increased life expectancy along with the broader population; however, this increase is lower overall than the general population and often accompanied by accelerated aging.
Accelerated aging in individuals with intellectual and developmental disabilities and consequences for oral health
Accelerated Aging refers to the early onset of health conditions associated with aging among people with disabilities. Adults with IDD 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. Accelerated aging is the difference between biological and chronologic age. Biological age is often derived from a combination of biomarkers that include but are not limited to: total cholesterol, high-density lipoprotein (HDL), glucose, body mass index (BMI) and others that represent the physiologic effects of “wear and tear” usually associated with chronologic aging. Differences in mortality across race and ethnicity among people with IDD follow the same trends as in the general populations. Heart disease is the leading cause of death for all adults 65 and older, with or without IDD. Cancer and diabetes follow for those with mild to moderate IDD but for those with profound IDD, pneumonia and influenza were second and third, with an increased risk of death from choking. There is also an earlier age of onset of and increased risk of death from Alzheimer’s disease. Understanding these causes of death is important because these conditions and the medications used to treat them can result in specific risks to oral health.
The most common cause of IDD is DS (or trisomy 21). Persons with DS are inclined to a shorter lifespan. The reason for the unrelenting shorter lifespan in the DS population, compared to many other developmental disability populations, is thought to be due to an accelerated aging process, which is manifested by an increased risk for heart problems, metabolic syndrome, cataracts, hearing loss, osteopenia/osteoporosis, hypothyroidism, and Alzheimer’s disease. Moreover, individuals with DS have unique physiologic and physical characteristics, such as muscle hypotonicity, joint hypermobility, and increased tendency for obesity. ,
In one study, individuals with disabilities reported greater rates of hypertension, arthritis, joint pain, and difficulties with vision. For those 65+ years, adults with disabilities reported greater frequency of organ system diseases (diabetes, coronary artery disease and cancer) than those age-matched without disabilities. Health care providers need to be aware of the health needs associated with rapid organ system decline in individuals with IDD. To achieve optimal outcomes, these conditions must be considered when designing treatment plans and planning patient management strategies for patients with IDD in mid or later life. In addition to understanding implications of early onset of chronic diseases, it is necessary to consider how ableism and ageism impact oral health outcomes.
The intersection of ableism and ageism
Aging individuals with IDD will likely have to contend with issues of ageism and ableism as they face the onset of age-associated chronic diseases and conditions. As a result, some seek to avoid being perceived as disabled or old, while others try to hide their disability or refuse to identify as disabled; many aging people resist identifying as old. Both identities carry stigma and the likelihood that others will treat one differently, whether making assumptions about one’s capacities, offering unwanted help, or discounting one’s value. Individuals who identify as Black, Indigenous, and people of color (BIPOC) and/or LGBTQ+ of all ages with impairments and chronic illnesses may not identify as disabled, as an attempt to avoid additional marginalization or because of a historical lack of inclusivity in their communities and a failure to affirm all aspects of their identity.
Many euphemisms refer to old and disabled people. , , The intention of these social and linguistic practices may be kindness, but the unintended effects include erasure of the experiences of those who fall into these categories and continued stigmatization. For example, when a provider denies a person’s status as old, the assumption that being old is inherently bad and the concept is not challenged. The same is true when a disabled person is told that providers tell patients that they “don’t think of them as disabled.” Likewise, the claim that “we are all disabled” ignores the differences between those who are subject to ableism and those who are not. Joel Michael Reynolds contends that “ableism is at the core of ageism” and we “cannot conceptualize ageism without ableism.”
The influential model of “successful aging,” developed by gerontologists John Rowe and Robert Kahn, serve as a useful example of how ageism and ableism intersect. They “aimed to identify the factors that lead some people to an ideal version of aging marked by mental and physical vitality, as opposed to ‘usual aging’ which involves some inevitable decline.” “Success” requires that one maintain exceptionally high levels of physical and cognitive function, avoid disease and impairment, and is “actively engaged in life.” Although these may seem to be useful metrics, this approach has significant limitations. For example, as Lamb characterizes the position of Hailee Gibbons: “successful aging discourse falsely presents being old and being disabled as choices—the result of an individual’s lifelong behaviors.” , Not only does this framework fail to account for factors outside of the control of individuals, but it also excludes, by definition, the possibility that disabled people can age successfully. Ageism and ableism are so pervasive within our society that it can be difficult to think critically about the assumptions and practices premised on them. Yet, it is essential that health care providers do so if they are to have any hope of changing these assumptions of inclusivity and create a society that values all bodyminds —a term Margaret Price coined to emphasize the intertwined nature of our bodies and minds—rather than only those that are meet the ideal of being young and nondisabled.
Nondisabled and/or young people often assume that being disabled and/or old is a fact or set of facts about an individual that automatically leads to a reduced quality of life however, significant empirical evidence supports that this is not the case. The built environment and the attitudes that inform how it is built and maintained do significantly impact quality of life, for better or worse.
The Americans with Disabilities Act (ADA) of 1990, along with subsequent updates, was groundbreaking in establishing legal requirements for access and recourse for people with disabilities who face unjust discrimination. To some extent, responsibility for accessibility shifted from disabled individuals to business owners. As monumental as this law was it would be a mistake to believe that it has led to a nation that is perfectly accessible to disabled people. It is still common for health care providers to be insufficiently familiar with its requirements. Furthermore, even when health care facilities comply with the law this does not guarantee that they are fully accessible and welcoming to disabled people. The ADA 1990 provided a good starting point, but it is necessary to attend to the experiences of disabled patients to learn where it falls short.
Consider examples of how some of the needs of disabled and old people are relevant within clinical spaces. Communication is foundational to providing quality care and access to all patients. The awkwardness of not knowing how to engage with disabled people and the stigma around disability and old age compromises good communication. Too often, clinicians are navigating unfamiliar situations and make errors due to their unfamiliarity of best practices. For instance, when patients use American Sign Language or other type of interpreter, it is important for clinicians to talk and make eye contact with the patient rather than with the interpreter. The same is true in instances in which a disabled patient has someone who accompanies them during appointments to provide support, regardless of the form that support takes (eg, assistance with decision making, physical transfers, managing anxiety, speaking on behalf of a person unable to speak). This simple shift can make the difference between a patient feeling ignored or respected in their interactions with clinicians.
Different considerations come to the fore in communication with individuals who develop hearing impairments later in life. “If communication with a late-deafened individual is difficult due to a lack of residual hearing, a health care worker with time pressures may be more likely to presume choices or hurry through the process rather than take the time to ensure that effective communication has occurred.” Similarly, older individuals seeking to avoid the stigma of having a disability may engage in what Burke calls “bluffing”—attempting to mask the degree of their hearing impairment. For these reasons, it is important for clinicians to ask patients questions to assess their capabilities and comprehension of the information presented. Providing treatment plans in writing is helpful for most people, but especially those with hearing impairments and/or IDD. When clinic staff know that communication with a patient may take longer than it does with a typical patent, scheduling longer appointments can help to alleviate time pressures.
Beyond the walls of the clinic, disabled and/or old people can face a variety of obstacles to accessing dental care and following the recommendations of clinicians. Systems analysis is a method employed within bioethics that asserts the importance of attending to factors outside of an individual’s control that constrains the choices available to them. To be inclusive these external factors and the role they play in a patient’s ability to access care and to successful outcomes must be considered, this method “can help us to see the difference between when people are ‘making bad choices’ and when people only ‘have bad choices’ to choose from.” For example, adequate accessible transportation remains out of reach within many communities or can be hit or miss. Anyone who needs a wheelchair lift to ride the bus is familiar with the experiences of encountering buses with broken wheelchair lifts. , In some places, paratransit is an alternative available to disabled individuals, yet often they are underfunded and unpredictable, which can result in long wait times and late pickups. Arriving late for appointments is a common result, which can frustrate providers and, reflects poorly on patients only to reinforce negative stereotypes about individuals who are disabled or old when in fact the systems to support them have failed or are lacking altogether.
Biomedical and structural challenges intellectual and developmental disabilities face in maintaining oral health
Adults with IDD generally see primary health care providers (physicians and dentists) less often compared with the general population, resulting in reduced access to preventive care, screenings, and health inequities between those with IDD and their peers without IDD ( Box 1 ). Obtaining and maintenance of good oral health, requires conscientious daily home care and routine professional oral health care. Many older adults with IDD need support to achieve optimal oral health outcomes. , These adults experience higher rates of obesity and poor nutritional habits, and they often present with more oral health conditions compared with the general population. Numerous studies have found that adults with IDD are more likely to have poor oral hygiene, periodontal disease and untreated dental caries compared with members of the general population. , Poor oral health is not only due to their limitations to complete good daily oral care, to cooperate during professional dental visits, and medications that affect oral health, but also high rates of poverty. These issues are exacerbated in older adults who have experienced poverty and poor access to dental care throughout their entire lifetime. Barriers people with IDD face in accessing dental care include dental practices not accepting them as patients due to financial disincentives (eg, Medicaid’s low reimbursement rates) and the scarcity of dental professionals trained to serve patients with IDD. Issues related to informed consent may also present barriers to dental care. Without adequate personal and professional care, individuals with IDD are at greater risk for developing severe oral diseases, as these are progressive when left untreated. Extensive dental caries and periodontal disease result in poor oral health and/or edentulism and the need for removable prostheses, which often are poorly tolerated in those with IDD and those with oral motor function disturbances.
