Positive Approaches Journal, Volume 12, Issue 4

Volume 12 ► Issue 4 ► February 2024

Aging, Health Care, Dementia, and IDD: The Intersection of Ageism and Ableism

Kathleen Bishop, Ph.D. and Kathryn Pears, MPPM

Abstract

Adults with intellectual and developmental disabilities (IDD) are more likely to experience health care inequities as they age. For older adults with IDD, it is the contention of the authors that not only ageism, but also ableism across the lifespan, impacts quality of health care and life. The authors provide examples with the desire that readers will come away as critical thinkers asking the question, ‘are there prejudices in the health care system that may be possible to change?’

Introduction

Adults with intellectual and developmental disabilities (IDD) are living longer, thanks to improvements in medical care for children and adults. (Janicki et al., 1999) Increased life expectancy increases the risk for the expression of age associated and age-related diseases, including Alzheimer’s disease and related dementias, as it does in the general population. (Perkins et al., 2010).

The increased risk for diseases and conditions for older adults with IDD increases the necessity for knowledgeable health care providers, screening, diagnosis, and interventions (Bishop et al, 2015; Moran et al, 2013). Recognition and appreciation of the increased life expectancy of adults with IDD is just now gaining recognition but has not kept pace with the needs of these aging adults. There are fewer health care providers who specialize in the care of adults with IDD and less research compared to the general population. (Institute of Medicine, 2007)

Research indicates health care providers are less likely to feel comfortable providing health care to people with disabilities. An example of such a study is cited by Gallegos (2021). In this study, 82% of survey respondents indicated their discomfort with providing health care to adults with disabilities, including adults with IDD, because of their concern over less information available. This same survey indicated many of the same respondents were reluctant to provide health care, partly due to a perception of a less likely positive outcome (Gallegos, 2021).

In this same article the author cites another study in which older adults with IDD were more likely to die from procedures or lack of accessibility to procedures, such as refusal to provide care during the height of the COVID epidemic (Gallegos, 2021). In yet another study, less than 50% of physicians felt adequate to provide health care to people with disabilities, including people with IDD (Iezzoni et al, 2021).

For aging adults with IDD, who are at risk of or who have developed a form of dementia, it is important that a proper differential diagnosis be conducted prior to labeling the individual as having dementia. “Dementia” is derived from the Latin word ‘demens’ meaning being out of one's mind, and is a general term used to describe a constellation of symptoms, such as personality change, cognitive impairment, and changes in memory. Although the word is frequently used as such, dementia is not an actual disease. Many conditions aside from Alzheimer’s (or one of the other related forms of irreversible dementia) can cause the symptoms we refer to generically as dementia. Therefore, determining the root cause of an individual’s symptoms through a thorough process of differential diagnosis, is imperative to identify the cause of cognitive decline and in providing appropriate interventions when possible (Alzheimer’s Association, 2024; Bishop et al, 2014; National Down Syndrome Society, 2019; Moran et al., 2013). It is the authors’ experience that the differential diagnosis process is rarely undertaken for people with IDD, and especially those with Down syndrome, when a medical assessment is undertaken for cognitive change.

Definition of Ageism and Abelism

According to the World Health Organization (WHO), ageism is defined as prejudice or discrimination based on a person’s chronological age. Ageism can affect older adults’ mental and physical health, as well as cause premature death (WHO, 2021). The discussion above, of less research focus on older adults with IDD and health care providers being less likely to provide care as compared to the general population, is at least partly indicative of widespread and pervasive ageism in health care (Gallegos, 2021).

Ableism is the mistaken belief that adults with disabilities are not as capable or valuable as people who do not have disabilities. This can result, as can ageism, in a lower quality of care and less potential for positive health outcomes from healthcare interventions (Smith, 2023). For example, a 2020 study found that approximately 83% of healthcare professionals studied viewed people with disabilities as already having a lower quality of life or being less healthy because of their pre-existing disability (Smith, 2023). Access to lab tests and other needed health care resources are often limited by lack of physical accessibility (Smith, 2023). These are all defined as implicit bias, that often those helping create the barriers, or the individual receiving services, are unaware of (Smith, 2023).

An estimated 7.39 million people in the United States had an intellectual/developmental disability in 2019, of whom three out of ten are adults. (Institute on Community Integration, 2019) The number of adults with intellectual and developmental disabilities aged >60 years is projected to nearly double from 641,860 in 2000 to 1.2 million by 2030 (Tinglen, 2013).

When you combine ageism with lifelong ableism, it doubles the negative impact of less access to knowledgeable health care for older adults with IDD (Altomara, 2022). Adults with IDD risk being treated differently because each is perceived as a person with a disability first and are defined by that perception (Altomara, 2022).

Ableism can be experienced in many different forms. For the purposes of this paper, the form of ableism focused on here is at the ‘Institutional level’, which includes medical ableism. Medical ableism is defined as the attitude that intellectual/developmental disability is perceived as a problem that needs fixing. This attitude can be taught in medical schools and heightened in health policy that shapes the health care system (Altomara, 2022). Some of this attitude can be seen in the lack of relevant and appropriate assessment tools for screening for age-related diseases such as Alzheimer’s disease and related dementias (ADRDs) in older adults with IDD (Bishop et al, 2015; Esralew et al, 2009). This lack of standardized assessment tools for aging adults with IDD increases the likelihood that health care providers will not conduct a thorough differential diagnosis, as is the standard practice used for the general population.

Persons with IDD, because of their underlying disability, have difficulty reporting symptoms and changes as well as understanding directions, thus making it difficult for health care providers to understand the changes taking place in the individual and to make informed decisions for proper evaluation and treatment. This can result in health care providers diagnosing cognitive impairment as an irreversible form of dementia and overlooking potentially treatable conditions.

The authors have selected three common types of IDD to illustrate how ageism and ableism come together to enforce stereotypes in older adults with IDD.

Down syndrome: Ageism and Ableism

Down syndrome (DS) is the most common genetic disorder and is caused by a partial (less than 100% of the body cells) or complete (affecting every cell of the body) triplication of chromosome 21 (Aldred et al, 2021). It is the most frequent cause of intellectual disability and is the most researched condition in relation to aging and dementia (Aldred et al, 2021; Bishop et al, 2015; National Task Group, 2012). Adults with DS experience what is termed, “accelerated aging,” and have higher mortality rates than the general population. (O’Leary, et.al., 2018)

People with DS also have an increased risk for developing Alzheimer’s disease and do so at an earlier age than in the general population or in the population of other adults with intellectual disabilities. About half of all people with DS will develop Alzheimer’s in their 60s (DeGraff et.al., 2017) compared to only five to six percent in the general population. (Mayo Clinic, 2022). Although beta-amyloid (Aβ) plaques and neurofibrillary tangles are typically observed by 40 years of age in adults with Down syndrome, the onset of symptoms does not typically occur until nearly a decade later. (Head et.al. 2017).

Many health care providers are familiar with early research conducted in the 1970s that referenced this finding but misunderstood that research to mean that the presence of beta-amyloid meant that the individual had clinical Alzheimer’s disease. We now know that the presence of the pathology seen in the brain at age 40, does not necessarily mean that the individual will develop clinical Alzheimer’s disease, as there appears to be a sub-set of people with Down syndrome who do not develop Alzheimer’s at any age. (Head et al 2017) This leads to a tendency to ignore the importance of a differential diagnosis to identify and treat potentially treatable causes of cognitive decline in older adults with DS and an assumption that Alzheimer’s disease is the only cause of cognitive decline in any adult with DS over the age of 40.

Autism, Aging, and Dementia

Autism was originally described as “childhood schizophrenia” or the result of “cold parenting.”  Its use as a diagnostic term was first introduced in 1943 by Dr. Leo Kanner, who first used the term to describe a social and emotional disorder. The Centers for Disease Control and Prevention (CDC) recognizes autism as autism spectrum disorder (ASD) and a developmental disability, caused by differences in the brain for which there can be many causes. The first group of individuals diagnosed with autism are now in their 70s and 80s. Typical characteristics of people with autism include challenges with social skills, repetitive behaviors, speech, sensory processing impairments, and language impairments (Autism Speaks, 2021).

Little data is available on numbers of older adults with autism. (Autism Speaks, 2021). Equally little is known about the prevalence and incidence of dementia in ASD. A 2021 study reported on a sample of adults with ASD aged 30–64 years who were enrolled in Medicaid and found that adults with autism spectrum disorder were approximately 2.6 times more likely to be diagnosed with early-onset Alzheimer’s disease and related dementias compared to the general population. (Vivanti et al. 2021). A few studies have hypothesized that the cortical plasticity associated with ASD might confer a protective mechanism (Happe et al., 2012). While research on childhood issues related to ASD grows, research on aging and autism lags.

Risk factors associated with the risk of dementia in the general population, such as older age, depression, the presence of additional psychiatric conditions, and cardiovascular disease appear to be similar for adults with ASD. (Vivanti et al 2021) Access to informed health care for adults with autism is limited. For young adults without informed health care and data on risk factors, there is an increased likelihood that erroneous assumptions as to the presence of Alzheimer’s disease or a related dementia will be made, as adults with ASD age and develop age-associated decline.

Cerebral Palsy, Aging, and Dementia

Cerebral palsy (CP) is a group of motor disorders due to abnormal brain development or damage to the brain before, during, or after birth affecting the ability to control muscles (Center Disease Control, 2024). There are multiple types of CP with co-occurring conditions including epilepsy, intellectual disability, and motor disorders.

There are very few studies exploring the incidence and prevalence of dementia in adults with CP. In fact, a Google Scholar search of cerebral palsy and dementia only returned four references, one of which was a small 2021 study conducted in the United Kingdom on 72 people, that found no difference in the number of people with CP and control subjects who were diagnosed with dementia during the follow-up. (Smith et al 2021). It has been speculated that chronic inflammation in the brain is a possible increased risk factor for dementia in conjunction with other co-occurring conditions, but more research is needed (CDC).

Due to the pre-existing risk factors related to CP, adults with CP should receive regular medical care to monitor brain health and address risk factors for dementia, as well as other age-related diseases. As for other adults with IDD, adults with CP have a difficult time finding knowledgeable health care with physically accessible offices and equipment.

Summary and Recommendations

The authors have not attempted to prove that ageism and ableism are the cause for all health care inequities for adults with IDD challenged by dementia. It would be impossible to prove in this short article. However, the authors have attempted to demonstrate areas in which older adults with IDD and either a diagnosed or suspected dementia are likely impacted by these systemic and societal prejudices. We hope the readers will be critical questioners about the possibility and, with awareness, begin to apply day to day changes in their attitudes and practices.

We have no conflicts of interests to disclose.

Disclaimer: The opinions expressed in this article are solely those of the authors. They do not necessarily reflect the views or opinions of the publication or any other individuals or organizations. The authors are responsible for the accuracy, completeness, and validity of the information presented in the article. Readers are encouraged to critically evaluate the content and form their own opinions based on reliable sources and additional research.

Kathleen M. Bishop, Ph.D. has 40 years of experience in the IDD field and 30 as a Gerontologist with a specialty in aging with IDD. She has a BS from SUNY at Geneseo, MS in Special Education and a Ph.D. from Syracuse University in aging with disabilities. Dr. Bishop is a consultant for organizations in the aging and IDD networks and teaches online for Utica University, retired from the University of Rochester School and the NYS OPWD as well as VP of the National Task Group on ID and Dementia Practices. Dr. Bishop is Chair of the NTG Education and Training committee and VP for the NTG. Dr. Bishop presents the two-day NTG Dementia Capable Care for Adults with ID and the Third Day Train-the-Trainer with over 3000 attendees for the two-day and 800+ the Third Day. In her personal life, Dr. Bishop under the pen name of Mary Kathleen McKenna is author of the Women with Wisdom Series, two of which were published in 2023.

Kathryn Pears, MPPM Director of Operations, National Task Group on ID & Dementia Practices Principal, Dementia Care Strategies Kathryn is Director of Operations for the National Task Group on Intellectual Disabilities and Dementia Practices (NTG). Prior to accepting the staff position at the NTG she was Co-Vice President of the NTG’s Board of Directors and co-chair of the NTG’s Training and Education Committee. Kathryn is a nationally recognized expert on dementia who trains and consults with families, health care and long-term care professionals and facilities, and disability service providers. She specializes in the non-pharmacologic management of the challenging behaviors that occur with dementia. Personally and professionally involved in the field of dementia for over 30 years, her interest in dementia began in 1981 when her father was diagnosed with Early Onset Alzheimer’s disease at the age of 56. She was Director of Policy and Programs for the Alzheimer’s Association, Maine Chapter for 15 years. She also served as the registered lobbyist for the chapter and led the effort to make Maine one of the first states in the country to require special care unit disclosure for nursing homes, mandated training on dementia for nursing home staff, and a Silver Alert to mobilize law enforcement and the public when a person with dementia wanders and goes missing. In 2011 Kathryn started her own training and consulting company, Dementia Care Strategies. Kathryn lives in Aiken, South Carolina.

Contact Information

Kathleen M. Bishop

Email: kathiebishop@the-ntg.org

Kathryn Pears