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Effect of Aging on Persons With an Intellectual Disability (ID):

A Narrative Literature Review

Sarah Dover

Department of Biobehavioral Health, The Pennsylvania State University

BBH 411W: Research Applications

Dr. Jennifer DiNallo

June 28, 2021

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Effect of Aging on Persons With an Intellectual Disability (ID):

A Narrative Literature Review

With greater awareness and healthcare access, more people are being identified as having

an ID (Zablotsky et al., 2019). Additionally, medical advances have allowed people to live longer

with their intellectual disability (Tse et al.m 2018). A study in Sweden found that those with an

ID tend to receive healthcare treatment more often when they are younger, but less commonly as

they age (Sandberg et al., 2016). Explanations for this include that those who make it to older

age are just healthier than the younger population or there is the possibility of being better

watched over as they age (Sandberg et al., 2016). Either way, more people with an ID are making

it to older age, so further knowledge about the population is needed. This leads to the research

question: how does older age alter the level and type of care required among the growing

population of people with an intellectual disability?

Through the implementation of a narrative literature review, a few themes arose. They

include ID prevalence, conditions associated with aging, prescription rates, and provider

familiarity. Considered together, these themes can help identify where concerns lie and help

improve this population’s care and quality of life. A greater understanding of any disparities

associated with this population can change the world.

Inclusion Criteria and Selection Methods

Utilizing a narrative literature review method will find inconsistencies within healthcare.

A narrative literature review will allow for a broader source of information to be evaluated and

understood in answering how aging alters the needs of people with an intellectual disability.

Scholarly articles, fact sheets, and studies were found using the Google Scholar, LionSearch, and

PubMed databases. Being able to accumulate such sources allowed for a more cohesive
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understanding of the topic. Key terms such as ‘intellectual disability name change,’ ‘intellectual

disability AND aging,’ ‘intellectual disability AND age-related illnesses,’ ‘intellectual disability

AND mental health,’ ‘intellectual disability AND provider opinion,’ ‘intellectual disability AND

prescription rates,’ ‘intellectual disability AND restraint,’ ‘intellectual disability AND treatment

methods,’ and ‘intellectual disability AND autonomy’ were entered into the databases to find

relevant articles. In order to be selected, articles had to pertain to adults with an ID. The articles

also needed to discuss topics, like conditions associated with aging and concerns specific to the

population (such as provider bias and stereotyping). Due to limited findings, articles were not

excluded based on the country where the study was conducted.

Most articles pertaining to children with an ID were excluded. Two articles related to

children were still included due to relevance to the topic. One of the articles discussed that more

children are being diagnosed with an ID (Zablotsky et al., 2019). The other article expressed the

importance of having nurses trained in providing healthcare to newly diagnosed children (Doody

et al., 2017). Additionally, articles pertaining to conditions unrelated to aging were not

considered.

Sources published more than ten years ago were also not considered for inclusion. This

decision was made due to the increased acceptance of the population as a whole. More people

with an ID are being included in activities, and opinions may have altered. The name of the

condition was being changed by various international agencies to intellectual disability at this

time (American Psychiatric Association, 2013). By being more commonly discussed in a more

positive light, ID could have been more commonly researched.

Intellectual Disability
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Intellectual disability (also known as intellectual developmental disorder) can affect the

conceptual, social, and practical domains of a person’s ability to engage in tasks (American

Psychiatric Association, 2013). A person’s conceptual domain pertains to their abilities regarding

memory, knowledge, language, reasoning, and other skills required in school (American

Psychiatric Association, 2013). Someone’s social domain involves their ability to empathise and

interact with others, and their practical domain involves their ability to perform activities of daily

living and manage their work, school, and home duties (American Psychiatric Association,

2013).

Diagnosis and Etiology

Along with exhibiting an intelligence quotient (IQ) of 70 or less, the three domains

(conceptual, practical, and social) are also considered in diagnosis (American Psychiatric

Association, 2013). ID onset occurs before adulthood and exhibits effects that can persist for an

individual’s lifetime (World Health Organization, n.d.). Etiology is generally unknown, but has

been associated with birth defects, infection, injury, and genetic mutations (Centers for Disease

Control and Prevention, 2020).

Name Change

Intellectual disability has gone by another name in the past: “mental retardation”

(American Psychiatric Association, 2013). The American Psychiatric Association (2013)

expressed that the name change was to coincide with the World Health Organization’s decision

to alter the name. This decision was likely made, as the term ‘retarded,’ a variation of the

previous name, became a derogatory label towards the population and others (Global Down

Syndrome Foundation, n.d.). It is important to note that some of the articles to be discussed were
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published before the official name change, so they refer to ID as the previous name. However, ID

will only be referred to as the updated name within this narrative literature review.

ID Prevalence

Increased Identification

Numerous sources are suggesting an increased prevalence of people with an ID. A study

that examined data from the United States’ 2009-2017 National Health Interview Surveys

(NHIS) shows that rates of parental documentation of children between 3-17 years old diagnosed

with ID and other developmental disabilities have increased (Zablotsky et al., 2019). Additional

information pertaining to the individual’s sex, age, race and ethnicity, location of home (urban or

rural), birth weight, insurance status, and maternal education were examined (Zablotsky et al.,

2019). This rise also seems to relate to the changing of the name of the condition from mental

retardation to intellectual disability (Zablotsky et al., 2019). The name change could have

reduced stigma against the condition and influenced more people to identify with this condition

(Zablotsky et al., 2019). Not only does this finding suggest that more people are being diagnosed

with an ID, it also may be saying that the condition itself is being more accepted. It was found

that children who were boys, Hispanic or white, had a normal birth weight, were between the

ages of 12-17 years, lived in an urban setting, had families covered under private insurance, and

mothers who had a high school diploma or some college education exhibited a greater rise in

developmental disability prevalence (Zablotsky et al., 2019). This could relate to increased focus

on children due in part to their private health insurance.

A different study looked at ID prevalence throughout the world (Maulik et al., 2011). It

found that more children were being born in lower and middle income countries that have less

health practices (little to no genetic screening, more birth injuries, poor maternal health, and
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lower antenatal care), which could lead to the increased prevalence of ID diagnosis (Maulik et

al., 2011). Maulik and colleagues (2011) also noted that academic/educational screenings were

less likely to diagnose students with a mild ID. These students were misidentified as having a

learning disorder (Maulik et al., 2011). Being able to provide better healthcare procedures to

lower income countries could lower the prevalence, but adequately identifying mild ID could

still maintain the numbers (Maulik et al., 2011).

Premature Death

As people age, death grows near. This notion carries over for anyone, but is especially

pertinent towards people with an ID, as this population tends to have reduced life expectancy

(Heslop et al., 2014). Investigators searched for and requested information about deaths of

people with an ID who were four years or older and died between June 1, 2010 to May 31, 2012

from agencies pertaining to health, volunteer work, social issues, along with prisons, general

practitioners, minority communities, and community groups (Heslop et al., 2014). These deaths

were compared to those from the general population who was similar in terms of sex, age, month

of death, cause of death, and general practitioner (Heslop et al., 2014). Interviews were also

conducted with the family member(s) or careers the deceased left behind in order to gain a better

understanding of what led to the person’s death (Heslop et al., 2014). This, along with the

additional information helped create a reason for the death, which fell into a few different

categories: avoidable (actions could have been taken to prevent the death, such as appropriate

healthcare provision or public health intervention), premature (relating to lifestyle factors or

comorbidities that could have been avoided and the person could have lived longer), and

contributing factors (individual factors, familial/environmental factors, service methods, or care

methods) (Heslop et al., 2014).

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Of the 247 people with an ID identified in the study (likely an underestimate), the median

age at death was 64 years old, and nearly 25% of the people were younger than fifty years old

(compared to 9% of the general population deaths) (Heslop et al., 2014). Among males, those

with an ID had a median death age of 65 years, while those from the general population

exhibited a median age of 78 years when they died (Heslop et al., 2014). Females with an ID

showed a median age of 63 years at death, while those from the general population displayed a

median age of 83 years (Heslop et al., 2014). It was noticed that the greater the severity of the

ID, the younger the age of the person at death (Heslop et al., 2014). Avoidable deaths among the

ID population made up nearly half of the deaths with about one quarter of general populations

being attributable to the cause (Heslop et al., 2014). Additionally, among the ID population 42%

of the deaths were deemed premature (Heslop et al., 2014). This increased prevalence of deaths

that could be prevented is likely due to issues more meaningful for people with an ID: healthcare

provision, consideration, listening to the caregivers and the patient, etc. (Heslop et al., 2014). If

these issues could be addressed more efficiently, those with an ID could likely flourish and live

lives more similar in length to those without an ID (Heslop et al., 2014).

Longer Lifespan

Even with a greater mortality rate, researchers in Germany noticed that German citizens

with an ID are living longer (Dieckmann et al., 2015). Due to the mass murder of people with an

ID performed by the Nazi regime, people with an ID born after World War II are reaching

retirement age (Dieckmann et al., 2015). Additionally, Germany’s citizens as a whole are

increasing in age, so the country will really need to prepare for its aging population (Dieckmann

et al., 2015). Dieckmann and his associates evaluated death rates of people with an ID in various

living facilities and receiving social aid throughout Germany between 2007 and 2009
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(Dieckmann et al., 2015). They also collected data pertaining to gender, birthdate, main

disability, year data was collected, and death date (Dieckmann et al., 2015).

Compared to general population German mortality rates among those the same age, 20

year olds with an ID were significantly higher (Dieckmann et al., 2015). Additionally, males with

an ID exhibited higher mortality rates compared to the male general population and to females

with an ID (Dieckmann et al., 2015). Overall, people with an ID were found to live shorter lives

than the general population (Dieckmann et al., 2015). However, a concept known as the healthy

survivor effect was noted for those in the older age range (Dieckmann et al., 2015). This concept

highlights the notion that people who are healthier in general live longer (Dieckmann et al.,

2015). Therefore, the healthy survivor effect explains why similar mortality rates were noticed

among those who were older, regardless of the presence of an ID (Dieckmann et al., 2015).

Additionally, it relates to the survivors of World War II, as that population was very resilient and

rarely included those who had more significant IDs, which could relate to being unhealthy

(Dieckmann et al., 2015).

Findings related to an increased lifespan among those with an ID have been common.

Researchers in Ireland have also noticed this, taking note that those with more mild ID tend to

live more similar life spans to those in the general population (Doody et al., 2013). While this is

largely due to improvements in treatment and care for people who have an ID, more may be

needed to ensure their quality of life (Doody et al., 2013).

Conditions Associated With Aging

Self-awareness and Opinion of Aging

Part of aging involves self-awareness in terms of one’s own increase in age and what that

may entail. Trip and her colleagues (2020) conducted a study in Australia in which they
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interviewed nineteen people with a mild or moderate ID between the ages of 37 to 58 who were

able to consent on their own and verbally or expressively communicate. These individuals lived

with at least one other person and most lived in a city and had comorbidities like asthma,

epilepsy, depression, hypertension, and arthritis (Trip et al., 2020). Interviews were conducted

mainly at each participant’s home and included a component where the participants were able to

bring a photograph or an item that reminded them of aging, which helped direct the conversation

(Trip et al., 2020). Questions involved personal life, activities of daily living, health, getting

older, the future, and explanations surrounding the object that was brought for the interview (Trip

et al., 2020).

Upon analyzing the data, four themes were elucidated, which involve relationships,

potential independence, understanding ageing, and possibilities (Trip et al., 2020). Answers

pertaining to relationships considered caregiving roles and how they would sometimes switch to

the person with the ID caring for a loved one, potential lack of roles with a feeling of being

trapped, companionship, and being able to leave the house (Trip et al., 2020). Potential

independence included consideration of obtaining more independence, mobility, learning new

abilities, and conducting activities of daily living on their own (cooking, chores, dressing

oneself, etc.) (Trip et al., 2020). Understanding aging entails what the individuals thought aging

meant in terms of age, physical appearance, milestones (like menopause), and death (Trip et al.,

2020). The theme of possibilities included responses regarding freedom (such as moving out),

maintaining one’s own health, and their general hopes for what they plan to do (Trip et al., 2020).

With this in mind, these individuals were able to exhibit autonomy in ways that others might not

consider. They were able to show an understanding for various concerns associated with aging

and life (Trip et al., 2020).

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Certain Conditions

That being said, issues may arise concerning chronic conditions that require caring for

oneself, such as diabetes. Balogh and colleagues (2014) compared the rates of diabetes

(undifferentiated between types) and found that those with an intellectual or developmental

disability had a higher prevalence. The gap between those with and those without an intellectual

or developmental disability became smaller with age, and there was an especially high

prevalence among women with an intellectual or developmental disability (Balogh et al., 2014).

Another condition associated with aging of concern is dementia. A study in Hong Kong noticed

that those with an ID tended to develop dementia earlier on and exhibited symptoms that differed

in stage from the presentation observed within the general population (Tse et al., 2018). This

posed a greater concern, as dementia can be observed in people as young as 40, but geriatric

services and facilities are only available for people sixty years old or older in Hong Kong (Tse et

al., 2018). Additionally, there is no set standardized screening tool to identify anyone with an ID

who may have dementia (Tse et al., 2018). There are additional risk factors to consider among

people with an ID, which can relate to oxidative damage (people with Down’s Syndrome tend to

have an overactive enzyme and too many inflammatory factors that can cause damage and

increase dementia risk), genetic predisposition (especially in terms of ID attributable to genetic

mutations), and telomere shortening (those with Down’s Syndrome tend to have certain

telomeres that are shorter than the ones found in the general population) (Tse et al., 2018).

Multiple Conditions

An important concept to consider is the prevalence of a person having multiple chronic

conditions at once, a concept known as multimorbidity (McCarron et al., 2013). A study was

conducted to see how the cases and relationships of multimorbidity within an Irish group of
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people who are older and diagnosed with an ID differed from the general population (McCarron

et al., 2013). Information pertaining to the randomly selected 753 people who were 40 years or

older and had an ID was obtained from Ireland’s National Intellectual Disability Database

(NIDD), which provides services to residents with an intellectual disability (McCarron et al.,

2013). The sample of people without an ID was randomly selected from the Irish Longitudinal

Study on Aging (McCarron et al., 2013).

Both groups were provided with two questionnaires, with the first one being distributed

before the interview to collect information pertaining to individual demographic data,

medications, health state, healthcare frequency, and whatever chronic disease they may have

(McCarron et al., 2013). The second questionnaire was included with the interview and asked

about the individual's mental, behavioral, cognitive, and physical health; income sources; job

information; social connectedness and participation; quality of life; religion; where they live;

ability to perform activities of daily living; and education (McCarron et al., 2013). It also

confirmed the documented chronic disease(s) reported in the initial questionnaire (McCarron et

al., 2013). Compared to the 58.6% of the general population over 65’s documentation of

multimorbid conditions, 71.05% of those with an ID reported a multimorbidity with a median of

two conditions (McCarron et al., 2013).

The number of conditions documented increased with age, and women seemed to have

greater risk of multimorbidity at any age (McCarron et al., 2013). Although severity of ID was

documented, it did not seem to predict multimorbidity (McCarron et al., 2013). Mental health

conditions, eye disease, neurological disease, and gastrointestinal conditions were the most

common diseases reported among those with an ID (McCarron et al., 2013). Despite high obesity

and physical activity rates, cardiovascular disease seemed to be less of a concern for those with
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an ID compared to the general population (McCarron et al., 2013). This could relate to the

population of people with an ID being less likely to partake in smoking and consumption of

alcohol (McCarron et al., 2013). The increased joint, neurological, and eye conditions may be

related to central nervous system issues associated with particular intellectual disabilities

(McCarron et al., 2013).

A Swedish retrospective study found similar results when examining comorbidity rates

among older adults with an ID who also have affective (mood) and anxiety disorders (El

Mrayyan et al., 2019). Obtaining a true diagnosis of additional conditions can be hard to discern,

as the older person with an ID may not be able to understand or express their experiences (El

Mrayyan et al., 2019). Additionally, diagnostic criteria may be different in people with an ID (El

Mrayyan et al., 2019). Compared to the general population, it was found that those with an ID

who were also experiencing mood or anxiety disorders were eleven times more likely to have

psychiatric comorbidities (El Mrayyan et al., 2019). In terms of bodily comorbidities, this

population was 20% less likely than the general population to have a bodily comorbidity (El

Mrayyan et al., 2019). The most commonly observed comorbidity among the ID group was an

unspecified psychiatric condition (El Mrayyan et al., 2019). This finding could relate to the

patient already exhibiting behavior that deviates from social norms, so the physician may think

that such behavior pertains to the individual’s ID (El Mrayyan et al., 2019). The lack of bodily

conditions could be due to greater difficulty in diagnosing due to poor communication skills

among the population of people with an ID (El Mrayyan et al., 2019).

End of Life

Communication is especially important in palliative care (provided to people with a

life-threatening illness or condition in which they are reaching the end of life), which is
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becoming increasingly needed for people who have an intellectual disability (Vrijmoeth et al.,

2016). Those with an ID are getting older and issues concerning their end of life care and wishes

need to be more openly discussed, as this population is beginning to develop conditions that

could lead to a prolonged death (Vrijmoeth et al., 2016). In order to more understand the extent

of the concern, the researchers interviewed ten intellectual disability physicians in the

Netherlands about their experiences with patients with an ID in need of palliative care

(Vrijmoeth et al., 2016). These interviews were conducted between October and December in

2013, with eight via telephone and two in person (Vrijmoeth et al., 2016).

Most of the physicians were female with 20 or more years of experience, but two were

still training and had less than ten years of experience (Vrijmoeth et al., 2016). These doctors

were each in charge of a median of 152 patients with an ID and experienced a median of four

patients die in the past year (Vrijmoeth et al., 2016). The patients were nearly equal in terms of

severity of ID; had a median age of 53 years at death; and died of conditions, like cancer,

respiratory disease, heart disease, digestive system disease, and general decline in health

(Vrijmoeth et al., 2016). When identifying a need for palliative care for those within this

population, some qualifications are general, such as irreversible decline, comorbidities, and

treatment that is ineffective or unadvisable, but other considerations are more specific towards

this population (Vrijmoeth et al., 2016). These considerations can include the significance of the

person’s ID, which can affect their ability to communicate, which may include the need to

discuss considerations with the patient’s proxies and caregivers (Vrijmoeth et al., 2016). Not only

did the physicians’ own experience with this population influence their decisions on treatment,

but they heavily considered the communication with the patients’ caregivers in terms of

observation of the patient’s behaviors and health (Vrijmoeth et al., 2016).

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Prescription Rates

A study in Taiwan examined the difference in psychotropic prescription rates to people

with an ID between 1997-2007 (Hsu et al., 2014). The researchers used the National Health

Research Institute’s national health insurance ambulatory service to obtain information regarding

those with an ID and the prescriptions they received during the ten year period (Hsu et al., 2014).

Information pertaining to each person’s gender and birthdate, medical expenses, date of receipt

of care, main three diagnoses, and if any new drugs were prescribed at each visit at the service

was obtained (Hsu et al., 2014). Researchers were specifically interested in the new prescriptions

and categorized them into antidepressants, anxiolytics, antipsychotics, and hypnotics/sedatives,

ensuring to take note of those receiving psychotropic medications each year (Hsu et al., 2014).

Over the ten year period, it was found that a greater number of adults were receiving

outpatient care services (Hsu et al., 2014). Additionally, increased prescription rates of

antipsychotic, antidepressant, and hypnotic/anxiolytic drugs were observed (Hsu et al., 2014). A

Swedish study that was published in 2019 compared prescription rates of anxiety and/or mood

disorder drugs (anxiolytics, sedatives/hypnotics, antidepressants, and GABA-agonists) between

its residents living with and without an ID (Axmon et al., 2019). These researchers also found an

increased prescription rate of anxiolytics among older adults with an ID, but similar rates of

antidepressants between the two groups (Axmon et al., 2019).

A prospective cohort study in Scotland examined how psychotropic prescription rates and

mental health diagnoses among those with an ID changed over ten years (Henderson et al.,

2020). It assessed two populations of people eighteen years or older with an ID in the Scottish

community (Henderson et al., 2020). Data pertaining to the first sample (T1) was collected

between 2002 to 2004, from specialist, funding, and social services; the Health Board; and
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general practices that treat people with an ID (Henderson et al., 2020). Information regarding the

second sample (T2) was obtained in 2014 from the individuals’ primary care providers

(Henderson et al., 2020). The researchers used the Community Health Index (each patient’s

unique identification code) to link the participant’s information to the Prescribing Information

System (Scotland’s record of all medications a person is prescribed) (Henderson et al., 2020).

Between the two samples, the researchers noticed a reduction in antipsychotic

prescription rates, but those who were prescribed them never stopped taking them (Henderson et

al., 2020). Additionally, there was a large increase in antidepressant prescriptions, and those

exhibiting problem behaviors were prescribed a greater amount of medications (Henderson et al.,

2020). A different study in Sweden compared the drug of choice to treat dementia between adults

only with dementia and adults who had dementia and an ID or autism (Axmon et al., 2016). They

found that those with an ID and dementia were more likely to be prescribed antipsychotic

medications for their dementia (Axmon et al., 2016). This finding may suggest that further

consideration may be required when prescribing medications for those with an ID and dementia,

as it begs the question as to whether or not the proper medication was utilized.

Overall, there seems to be a general consensus that antidepressant drug prescription rates

are rising among this population. However, there were some differences in regards to the other

drugs studied. While this could be due to culture differences, it could also be in regards to when

information pertaining to the population was collected, as the study conducted by Hsu and

colleagues (2013) involved information pertaining to a population in Taiwan before the year

2000.

A study conducted in the Netherlands examined the frequency in which prescription

errors are made when treating adults with an intellectual disability and attempted to find the
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factors that may influence them (Zaal et al., 2013). They found that within the 600 person sample

of adults with ID prescribed at least one medication, 47.5% of them had a prescription error, and

26.8% of the sample needed to have their medication changed (Zaal et al., 2013). Risk factors

included older age, less severe ID, higher body mass index, medications acting on the central

nervous system, increased frailty, and taking at least five prescriptions (Zaal et al., 2013). This

may coincide with provider unfamiliarity, as some of these risk factors are more commonly

observed among the population of people with an ID (Zaal et al., 2013).

Provider Familiarity

Prevailing Unfamiliarity

Considering the notion that the prevalence of people with an ID is rising, care for the

population of people with an ID is not commonly taught (Lewis et al., 2017). A study was

commenced with the aim of obtaining acute care nurses’ opinion caring for patients with an ID

(Lewis et al., 2017). A literature review was performed by searching the CINAHL, Medline,

Cochrane Systematic Review, PsycINFO, and Web of Science databases with terms related to

nursing care in a hospital for studies published between 2006-2015 discussing first-hand

accounts and empirical research regarding nurses who are untrained in the subject, but are caring

for people with an ID an a hospital (Lewis et al., 2017).

Due to minimal general training pertaining to patients with an ID, nurses may not have

confidence in regards to treating this population (Lewis et al., 2017). As a result, this could affect

performance in providing the necessary care to the patient (Lewis et al., 2017). The lack of

familiarity can extend to complications regarding communication (Lewis et al., 2017). Nurses

have expressed difficulty understanding patients’ noverbal communication methods and

uncertainty surrounding how to refer to the patient who has the ID (Lewis et al., 2017). This can
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affect efficiency of patient treatment (Lewis et al., 2017). Engaging in stereotyping was another

occurrence that was discussed, which can also affect quality of care in regards to expectations of

the patients’ ability to communicate and comprehend what they are experiencing (Lewis et al.,

2017). An unclear designation of the caregivers’ role to the patient could lead to necessary care

not being performed, issues with who can provide consent for procedures, and confusion as to

the role of advocacy (Lewis et al., 2017).

Autonomy

Other concerns can pertain to uncertainty regarding autonomy and how much should be

allotted to the person with an ID. A study in Iceland conducted interviews and observations at

the homes of 41 adults with an ID aged 26-66 years old (Björnsdόttir et al., 2014). Nonverbal

participants (4 of the 25 women and 3 of the 16 men) were only observed for patterns and

behaviors (Björnsdόttir et al., 2014). The researchers wanted to gain more insight into the lives

of participants, with particular focus on their autonomy and living conditions (Björnsdόttir et al.,

2014).

It was found that the perceptions and opinions of the other people in the participants’

lives was a significant factor that could help or hinder autonomy acquisition (Björnsdόttir et al.,

2014). Eight of the participants lived in institutions when they were younger, and they all said

that life was fine until someone stopped listening to the caretakers (Björnsdόttir et al., 2014).

Any form of rebellion against the preset schedule was met with untoward behavior from the

workers (Björnsdόttir et al., 2014). No matter where the participants lived, all of them

experienced paternalistic behavior from those who told them their limitations, further prohibiting

opportunity for autonomy development (Björnsdόttir et al., 2014). Those who required daily

assistance and were unable to verbally communicate were most commonly treated as children,
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ignored in conversations while receiving daily care, and stuck in a repetitive routine that they

could not control (Björnsdόttir et al., 2014). Several of the participants even mentioned difficulty

finding education regarding finances, finding a place to live, etc., further limiting their lives

(Björnsdόttir et al., 2014).

Autonomy can pose an issue throughout all aspects of care. Although Norway’s Patient

Rights Act was created to prevent such occurrences, a study in Norway found cases where

physicians proceed with a procedure when autonomous patients with an intellectual disability

declined a certain treatment (Sparby et al., 2016). The right enabled physicians to sign a form

that expressed need for the procedure (Sparby et al., 2016). However, some physicians may be

engaging in coercive acts, such as overexaggerating the necessity of the treatment and omitting

any moral concerns when filling out the form (Sparby et al., 2016).

Intellectual Disability Healthcare Professionals

The need for healthcare professionals trained in treating patients who have an intellectual

disability appears rather apparent. That being said, such professionals are present, but in limited

numbers. According to a study performed in Australia, there is risk that those numbers will

further dwindle within the country, as the National Disability Insurance Scheme was devised in

response to the notion that taking away institutions implies that general healthcare providers

would provide adequate care to the ID population (Wilson et al., 2019). Currently, Australia still

has nurses who specialize in caring for people with an ID or developmental disability (Wilson et

al., 2019). The researchers wanted to see how the role of nurses who work in settings specific to

people with an ID differs from the role of nurses when caring for people within the general

public (Wislon et al., 2018).

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Nurses working in a setting specific to the provision of care for people with an

intellectual or developmental disability who have Australian Health Practitioner Regulation

Agency approval, along with experience directly caring for patients with an intellectual disability

were interviewed (Wilson et al., 2019). The fifteen females and three males were interviewed

either by telephone or in-person (Wilson et al., 2019). Two of the nurses were interviewed

together (Wilson et al., 2019). These nurses explained their role’s relevance by expressing the

uniqueness of their job, as they engage in patient centered holistic care to the patient and interact

with the patient, the patient’s family, and his or her entire healthcare team (Wilson et al., 2019).

Their role also entails advocating for the patients and bridging the gaps within healthcare and

general ID knowledge (Wilson et al., 2019). Removing this role could be detrimental towards the

care of the patients (Wilson et al., 2019).

Although nurses already know the importance of their job, having patients that

understand the severity of their services is equally important in ensuring successful healthcare.

Ireland has a defined role for nurses specialized in the care for people with an intellectual

disability (Doody et al., 2017). Their training focuses on advocating for the person with the

intellectual disability, along with providing education and consultation to those who require it

(Doody et al., 2017). In order to obtain familial opinion about the work performed by Ireland’s

clinical nurse specialists, four fathers and six mothers of children with an intellectual disability

between the ages of four to nineteen were interviewed in their homes (Doody et al., 2017).

Five themes in the parents’ responses were noted (Doody et al., 2017). They included the

personal aspect of the care, support for the family in addition to the child, being a liaison

between the family and the other healthcare providers, providing significant knowledge to the

family, and empowering the families to be able to continue caring for their child (Doody et al.,
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2017). Although this study related to the parents of children, it was still included within the

narrative literature review because it represents the significant point that the interaction of the

nurses with the families of a child with an intellectual disability can lay out the foundation for

the rest of the child’s life in terms of care received and support provided (Doody et al., 2017).

Conclusion

This narrative literature review started out with the notion that more people are being

diagnosed with an ID and living longer (Zablotsky et al., 2019; Dieckmann et al., 2015). From

there, the search extended to consider what aging entails and how that may differ within this

group. Therefore, the search spread to considering chronic illnesses and other conditions that

crop up with age, along with the types of prescriptions this population receives. Multiple

morbidities are common within this population (McCarron et al., 2013). However, the conditions

normally observed in the general population are not as commonly noted in the population of

people who have an ID (likely due to restrictions in autonomy in terms of partaking in poor

health activities) (McCarron et al., 2013). With that in mind, autonomy can prove to be an

insurmountable issue within this population, as adults are often treated as children, which can

inhibit any form of independence these individuals may be able to obtain (Björnsdόttir et al.,

2014).

Some conditions (especially those relating to neurological dysfunction) present in

different stages and symptomatology can differ (Tse et al., 2018). Even when treating other

neurological conditions, prescriptions for those with an ID tended toward antipsychotics in lieu

of medications specifically for the condition (Hsu et al., 2014). Additionally, medication errors

and mistakes were relatively common (Zaal et al., 2013).

 21

All of these topics held one common thread: provider familiarity surrounding the

population of people who have an ID. Although some countries, like Ireland, seem more

prepared for the influx of individuals with an ID, as they have nurses specialized in this area,

others are not as ready (Doody et al., 2017). General providers do not seem fully aware of the

extent of additional consideration and patience required for treating this population and are not

all confident in doing so (Lewis et al., 2017). All in all, more healthcare providers familiar with

treating people who have an ID are required to be added to the healthcare team, as the population

is increasing in size and will allow for a better quality of life for everyone involved.

Further Considerations

Although this review did not go into the subject, the consideration of the caregiver’s

health may need to be explored. Approximately one third of adults with an ID live with a family

member who is sixty years or older who takes care of them (Ryan et al., 2012). As the person

with the ID ages, their parent, sibling, or other family member ages along with them. If the

caregiver develops an illness or becomes injured, it begs the question as to what may happen in

regards to future care for the individual. This is especially pertinent, as these caregivers are at

greater risk of developing an illness due to the added stress of tending to someone for so long

(Ryan et al., 2012).

Shaw et al. (2011) looked more into this topic by interviewing adults with an ID and their

caregiver. The general consensus was that they wanted the loved one to be in a supportive

environment close to friends (Shaw et al., 2011). Only a few supported individual living, due to

poor personal experiences with roommates (Shaw et al., 2011). However, the possibility of

moving into an assisted living facility was not well supported, as their other occupants tended to

be much older than the adults with an ID (Shaw et al., 2011).

 22

Therefore, more research and consideration may be required in regards to where an adult

with an intellectual disability will go once he or she is no longer able to be cared for by his or her

caretaker. Consideration of individual preferences and needs are pertinent to ensuring a person’s

quality of life, and are equally necessary when considering where someone who has an ID will

go once their caretaker is no longer able to help them. Additional research could go into

evaluating the presence of services implemented specifically to assist the familial caretakers of

those with an ID. Doing so may be able to prolong their ability to take care of their loved one for

a longer period of time.

 23

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