CHAPTER 5 Intellectual disability and ageing
FRAMEWORK
The recognition that people who have an intellectual disability have a right to access quality health care is becoming more apparent. The authors have raised significant issues surrounding the increasing life expectancy of this group and the poor response from health care providers in recognising their special needs. Not only is there a poor understanding of rights but there is also a lack of knowledge of the adverse social circumstances, associated physical disabilities and reaction to disease and health problems this group endures. Management of such common health concerns as pain, sensory loss, immobility, skin conditions and others is often not addressed as importantly as in the non-disabled population. This chapter contributes to the need to re-examine the primary health care program and the need for change. It also recognises the importance of interdisciplinary care if outcomes are to be successful. [RN, SG]
Introduction
Older people with an intellectual disability will increasingly be found among the patients in health care systems, due both to their increased life expectancy and policies of social inclusion. Unlike the past, contemporary health and social policy recognises the intrinsic human worth and citizenship of people with intellectual disability and their right, like the rest of the population, to expect and access quality health care. Whilst it is important to remember that each person with intellectual disability has a unique personality and experience of emotions, people with intellectual disability do share many other common characteristics including low cognitive capacity and poor adaptive skills. This means they master basic skills more slowly than the general population, find it difficult to communicate or engage socially in the world, and have less capacity to solve problems and understand abstract concepts. They also share the common experiences of encountering social arrangements in society that discriminate against them by failing to adapt to their needs and by having to use services that are ill-equipped to cope with people who are different. All of which should alert practitioners to think carefully about the way they communicate and interact with people with intellectual disability.
While considerable improvements in the health and health care of people with intellectual disability have been made, there is convincing evidence that as a group they continue to have compromised health, poorer quality of life and lower life expectancy (Connolly 2001; Fisher & Kettl 2005; Janicki et al 1999; Ouellette-Kuntz et al 2005; Walsh et al 2001). They experience significant health disparities, compared with their age peers in the general population, that stem from lifelong poor health care and the interplay between health conditions associated with their impairment and those commonly associated with ageing. Their life experiences also mean they are more limited in informal sources of support and other resources to draw on as they age. For example, many will have lived in large scale institutions; most will not have married or had children or ever engaged in paid employment or managed their own financial affairs.
People with intellectual disability as a group continue to have compromised health, poorer quality of life and lower life expectancy.
Appropriate health care for people with intellectual disability requires a stance that respects their rights and equal status as citizens.Life expectancy
Over the past 50 years, the population of people with intellectual disability has undergone dramatic change in life expectancy. For example, the life expectancy of people with Down syndrome almost doubled from 26 years in 1983 to 49 years in 1997 (Carter & Jancar 1983; Janicki et al 1999; Yang et al 2002). Although the impact of intellectual disability on life expectancy is variable, most people with mild to moderate impairment can now expect to live as long as their non-disabled peers (Bittles et al 2002; Fisher & Kettl 2005; Janicki et al 1999; Ouellette-Kuntz et al 2005; Patja et al 2000). Those with more severe or multiple impairments or specific genetic syndromes, however, continue to have a lowered life expectancy. For example, individuals with Down syndrome have a high incidence of cardiac anomalies and an increased incidence of other medical conditions that shorten life expectancy (Barnhart & Connolly 2007). The continued relationship between severity of intellectual disability and life expectancy means people with intellectual disability who reach old age tend to be those with mild to moderate disability. The life experiences and social context of people with intellectual disability, such as institutionalisation, poor access to quality health care, inability to communicate effectively and devaluing social attitudes are also believed to contribute to their shorter life expectancy (Barnhart & Connolly 2007; Brown & Gill 2002; Connolly 2001; Fisher 2004; Fisher & Kettl 2005).
Institutionalisation, poor access to quality health care, inability to communicate effectively, and devaluing social attitudes are believed to contribute to shorter life expectancy.Health conditions common in people with intellectual disability
Intellectual disability is associated with an increased rate of many health conditions, some of which are caused by genetic syndromes and birth-related traumas. These include seizure disorders, vision and hearing impairments, cardiac anomalies, endocrine abnormalities and compromised mobility (Ouellette-Kuntz et al 2005). For example, many individuals with cerebral palsy acquire both intellectual and physical disability as a result of birth trauma. Individuals with Down syndrome often suffer from genetic cardiac conditions, musculoskeletal problems, endocrine disorders, and vision impairments (Barnhart & Connolly 2007). Provision of adequate health screening, assessment and preventive care for people with intellectual disabilities as they age requires an understanding of associated conditions (comorbidities) and specific genetic syndromes (Ouellette-Kuntz et al 2005). Detailed summaries are available in texts such as Graves (2007) but the common conditions likely to impact on processes of ageing are outlined below.
Vision
There is a significantly increased incidence of cataracts, keratoconus, refractive errors, strabismus and nystagmus within the population of individuals with intellectual disability (Barnhart & Connolly 2007; Kapell et al 1998; Owens et al 2006). For people with Down syndrome, vision problems occur at an earlier age and at an even higher rate. For example, studies have found between a three and a ten-fold increase in the incidence of vision impairment for people with Down syndrome as compared with their non-disabled age peers (Kapell et al 1998). This has important implications for the timing of vision screening in all adults with intellectual disability but particularly for those with Down syndrome.
There is a significantly increased incidence of cataracts, keratoconus, refractive errors, strabismus and nystagmus within the population of individuals with intellectual disability.Hearing
Hearing loss is significantly higher in people with intellectual disability than it is in the general population (Connolly 2001). Seltzer and Luchterhand (1994) reported that half of the adults with intellectual disability screened for hearing problems were found to have hearing loss, compared to 25% of their age peers in the general population. Much of the hearing loss experienced by people with intellectual disability is conductive loss. It is currently believed that this conductive loss is the result of multiple, often untreated, middle ear infections in childhood. As these people age, any existing hearing problems are likely to be compounded by neurosensory hearing loss associated with ageing. Identification of hearing impairment is particularly important for people with intellectual disability as any loss of acuity can undermine their already compromised ability to communicate. Some research shows that many older people with intellectual disability are found to have diminished hearing that has not been previously identified and could have been present for some time (Haveman 2004; Seltzer & Luchterhand 1994).
Identification of hearing impairment is particularly important for people with intellectual disability.Dental health
People with intellectual disability have more dental caries, malocclusion and periodontal disease than their non-disabled peers (Fisher & Kettl 2005; Gizani et al 1997; Ouellette-Kuntz et al 2005). They have also been found to have fewer teeth when they reach older adulthood, having experienced higher rates of tooth extraction during childhood (Fisher & Kettl 2005). Factors contributing to dental problems for people with intellectual disability include: poor access to dental care, low levels of health insurance coverage, negative attitudes of care providers, general acceptance of care that would not be considered acceptable for non-disabled populations (i.e., tooth extractions as opposed to preventive care and tooth-sparing treatments), and inability to cooperate during dental care (Ouellette-Kuntz et al 2005). Collectively, dental disease and the associated tooth loss, speech difficulties and chronic pain have a negative impact on both health outcomes and quality of life.
Dental disease and the associated tooth loss, speech difficulties and chronic pain have a negative impact on both health outcomes and quality of life.Musculoskeletal conditions
Musculoskeletal conditions such as osteoporosis are more common in adults with intellectual disability than in the general adult population (Barnhart & Connolly 2007). The higher incidence of osteoporosis has been traced to a number of factors including: inactivity; diets low in calcium and vitamin D; lack of exposure to sunlight (especially in people who spent years in institutional settings); and history of anticonvulsant medications that interfere with Vitamin D metabolism (Ouellette-Kuntz et al 2005). One of its most significant consequences is a high rate of vertebral compression fractures, and fractures in both wrists and long bones (Barnhart & Connolly 2007; Brown & Gill 2002; Connolly 2001, Jaffe & Timell 2003). For example, one study of people over 50 with Down syndrome found evidence of fracture in long bones of over half the individuals studied (Wagemans et al 1998).
Mobility
Decreased mobility is common in adults with intellectual disability and often associated with lifelong physical disabilities that interfere with ambulation (Brown & Gill 2002). It may also be the result of fractures that occur following seizures, which are more likely given the lower bone density that is common among this population (Barnhart & Connolly 2007). People with Down syndrome are particularly at risk of mobility problems resulting from low bone density and osteoporosis (Brown & Gill 2002). This may be related to the earlier menopause experienced by women with Down syndrome, the high rates of thyroid disease, poor diet, and lack of weight-bearing exercise found in this population (Brown & Gill 2002). Down syndrome is also associated with decreased muscle tone and hip dysplasia (Barnhart & Connolly 2007).
People with Down syndrome are particularly at risk of mobility problems resulting from low bone density and osteoporosis.Swallowing/choking
Swallowing disorders, which increase significantly with ageing, are common among some groups with intellectual disability (Wells 2007). People with severe or profound intellectual disability are much more prone to choking than are those with moderate or mild intellectual disability. People with cerebral palsy are at particularly greater risk for swallowing disorders and choking (Connolly 2001). Interviews with older people who have cerebral palsy suggest that choking becomes more common with ageing as tongue control is decreased and gagging occurs more frequently (Connolly 2001; Ferrang et al 1992). Assessment of people with cerebral palsy should include a comprehensive assessment of swallowing ability, possible dietary modification, and suggests the need for increased vigilance during meals.
People with severe or profound intellectual disability are much more prone to choking.Thyroid disorders
Thyroid disorders are more common in people with intellectual disability than the general population. This is particularly the case for people with Down syndrome for whom both hyperthyroidism and hypothyroidism occur more frequently, although hypothyroidism is more common. The detection and treatment of thyroid disease is important as untreated thyroid disease leads to other serious problems. For example, hyperthyroidism can increase bone mineral loss, exacerbating low bone density and increasing fracture risk (Connolly 2001; Fisher & Kettl 2005). Hypothyroidism can lead to hyperlipidemia, obesity and decreased strength and exercise tolerance. It can also cause constipation, a condition that is uncomfortable and frequently leads to agitation and behaviour change. Hypothyroidism can also lead to a decline in cognitive skills, and may be mistaken for dementia (Barnhart & Connolly 2007).
Hypothyroidism can also lead to a decline in cognitive skills, and may be mistaken for dementia.Mental health
Depression is more common in people with intellectual disability than among the general population with estimates placing it as high as 30%. Depression can be caused by many things, including the side-effects of medication, chronic pain, hypothyroidism and unpleasant life circumstances. Symptoms are sometimes difficult to distinguish from both hypothyroidism and dementia, requiring special skill to differentiate conditions. As many as one-third of all people with intellectual disability take antipsychotic medication over extended periods of time. In many cases, people with intellectual disability have been taking medications for years without having an effective review of continued necessity or potential drug interactions. This puts older people with intellectual disability at considerable risk for polypharmacy. For example, in a sample of 1254 people with intellectual disability in the UK residing in supported accommodation, 31% were prescribed antipsychotic medication and 22% were at substantial risk of polypharmacy (Emerson 2002).
Depression is more common in people with intellectual disability.Health conditions associated with ageing
Cardiovascular disease
Cardiovascular disease is the most common cause of death among older people with intellectual disability, just as it is for the non-disabled population (Fisher & Kettl 2005; Haveman 2004; Janicki, McCallion & Dalton 2002). In addition to the general age-related risk for cardiovascular disease, people with intellectual disability often have additional cardiovascular risks that stem from unhealthy lifestyles and a lack of preventative care. For example, rates of obesity are considerably higher in people with intellectual disability than they are in the general population (Brown & Gill 2002; Fisher & Kettl 2005). In the US, for example, 50% of adults with intellectual disability are overweight compared to one-third of the general population (Janicki, Davidson, Henderson et al 2002).
Many people with intellectual disability have not had appropriate health screening and may have untreated hypertension and hyperlipidemia which increases their risk of cardiovascular problems as they age (Carlson et al 1994; Haveman 2004).
Many people with intellectual disability have not had appropriate health screening.Dementia
It is still commonly believed that intellectual disability increases the chances of developing dementia. While it is true that people with Down syndrome are at greatly increased risk, other people with intellectual disability have the same chances as non-disabled adults of developing dementia as they age (Fisher & Kettl 2005). By age 50, the rate of dementia for people with Down syndrome is over 40%, increasing to over 50% by age 60. The early symptoms of dementia mimic those of a number of other conditions that are treatable, including depression, thyroid dysfunction, urinary tract infections, diabetes, poor diet and sensory loss. The loss of previous abilities — that is, activities of daily living (ADL) — is an important indicator of dementia but if the condition is suspected, a thorough diagnostic assessment is needed to eliminate all other treatable causes of the symptoms (Janicki et al 1996). Diagnostic assessment should include physical examinations and identification of a pattern of functional decline over time. Clinicians are often very dependent on accurate, reliable accounts of change from those who know the person well. Diagnostic difficulty is compounded by communication problems and the inappropriateness of standard tests based on population norms. Various diagnostic tools specific to people with intellectual disability have been developed (see for example Janicki et al 1996; Prasher 2005).
Dementia in people with intellectual disability is generally characterised by wandering, sleep disturbance, delusions and hallucinations, loss of conversational skills and the loss of ADL abilities. Aggressive behaviour is rare in people with Down syndrome who have dementia (Fisher & Kettl 2005). This factor together with the similarity of symptoms of dementia with those of other medical problems reinforces the need for a thorough investigation of medical causes of behaviour changes in people with intellectual disability, especially those who are non-verbal.
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