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Introduction
This chapter examines the health and social status of older persons with intellectual disabilities (ID) and older persons with severe and persistent mental illness (SPMI). Although they are distinct populations, they share a variety of characteristics that affect their clinical needs and, hence, their interactions with community-based health-care practitioners. First, for both groups, community-based living and services are now the norm. This is a sharp contrast to several decades ago, when residential, social, and health services were provided largely in isolated state-supported institutional settings. Second, their historic segregation from the general public has resulted in lack of knowledge about these populations by health practitioners, many of whom have little understanding of their special needs. Third, both groups rely heavily on the care and assistance provided by family members. Although the social stigma associated with SPMI and to a lesser extent ID has masked the prevalence of family-based care, greater awareness of and support for family caregivers has resulted in increased demands for basic social and health services for relatives with disabilities. Furthermore, since few adults with ID or SPMI marry and most outlive their parents, their siblings often inherit some measure of responsibility during old age.
In this chapter we discuss the populations with ID and SPMI sequentially. We present relevant information for practitioners regarding health, cognitive, functioning, and social challenges associated with the aging process, and available evidence-based treatments developed to meet these challenges.
Intellectual disabilities
Definition
The American Association on Intellectual and Developmental Disabilities (AAIDD) defines ID as a disability characterized by significant limitations both in intellectual functioning (an IQ score of approximately 75 or below) and adaptive behavior, as well as the collection of conceptual, social, and practical adaptive skills.[1] This disability originates before the age of 18 years. Although the cause of an ID is not known in many cases, some of the more common known causes include Down syndrome (DS), fetal alcohol syndrome, fragile X syndrome, and genetic conditions and birth defects.[2] Many aging individuals with autism also have ID.
Population characteristics and demographic trends
Prevalence
The true size of the older population with ID is not known. The estimates by the AAIDD for older adults aged 60 and over with ID range between 600,000 and 1.6 million.[3] It is estimated that there were 641,860 older people with ID aged 60 or older in the year 2000, and the number is expected to roughly double to 1.2 million by 2030, when the youngest members of the baby boom generation reach age 60.[4]
Life expectancy and mortality
Although persons with ID often die at an earlier age than do adults without a disability, there has been a marked increase in the life expectancy of persons with ID, primarily as a result of improved health care and community-based services. Mortality is closely related to severity of ID as the median life expectancies for people with mild, moderate, and severe levels of disability have been estimated to be 74.0, 67.6, and 58.6 years, respectively.[5] Persons with DS have an elevated risk of premature death, reflecting their general earlier onset of aging, including Alzheimer’s disease (AD).[6,7] However, as a result of contemporary service delivery models and better medical care, life expectancy approaches that of the general population for many adutls with ID.[8] Consequently, the population of older persons with ID is considerably larger than in the past and will continue to grow rapidly.
Demographic and social characteristics
Although persons with ID are more likely to be male (due to the many X-linked causes of ID), the gender profile shifts as populations age with a higher percentage of females (51%) in those 65 years or older.[9] It is estimated that the percentage of adults with ID of all ages who live with families is as high as 75%.[10] However, according the National Core Indicators Adult Consumer Survey 2009–2010 on people with ID served by state systems, most adults aged 65 or older live in group homes (39%) or institutional settings (30%), while 9% live independently, 5% live in a parent’s or relative’s home, and 17% live in a range of other settings such as agency-operated apartments and foster care homes.[9] Older adults are more likely to live in provider-based settings (e.g., group homes) than their younger counterparts.[9] This phenomenon is partly due to the mortality of the parents and siblings.
Age-related changes
Older people with ID show a greater risk of obesity, metabolic syndrome, respiratory infections (in those with severe ID), low bone mass density, and other age-related health risks compared to the general population.[4, 11] This is due to biological factors related to disabilities, limited access to adequate health care, lack of physical activity, and poor nutrition.[4, 12]
Research on the relationship between dementia and ID has been dominated by studies of aging individuals with DS because by age 35 to 40, a majority of adults with DS display the key neuropathological changes characteristic of AD. Although the formation of plaques and neurofibrilllary tangles associated with dementia may occur during the thirties and forties, the clinical onset of AD tends to be in the fifties.[13, 14] Higher-order functional abilities are typically first affected, and it is only as the disease progresses that more basic activities of daily living are affected, which mirrors the progression of AD in the general population.[15] There are several studies that have investigated the risks for dementia in individuals with DS, but few definitive risk factors other than age have been identified.[15] Coppus studied a cohort of 506 individuals with DS aged 45 and older and found that the cumulative risk for AD doubled every five years, from 8.9% among those 45–49 years of age to 32.1% at ages 55–59.[16] After age 60, Coppus found that the cumulative incidence decreased to 25.6%, explaining the decrease as potentially due to the increased mortality of adults with comorbid DS and dementia. Future cohorts of individuals with DS will be very different than today’s aging cohort as they have had far better access to medical care and to educational and rehabilitative services.[15] It is unknown how these cohort differences will affect the risk of future generations of aging adults with DS for developing AD.
Other research has examined the risk of dementia in adults with ID over the age of 65 who do not have DS.[17,18] Whereas Zigman and colleagues found no evidence of increased risk,[18] Strydom and colleagues found an increased standardized morbidity ratio of 2.8 associated with ID.[17] These differences might be explained by taxonomic considerations concerning whether persons with mild cognitive impairments (MCI) are classified together with dementia or as a separate entity.[19] Individuals with ID may have a similar risk for dementia to individuals without ID when dementia cases are limited to those with probable or definite dementia, but are at an increased risk when the definition is expanded to include those with MCI.[20] In consideration of the difficulty in differentiating between MCI and mild dementia for adults with ID, clinicians should focus on assessing the level of support aging individuals need in order to live in the community, irrespective of their diagnosis.
The pattern for age-related changes in functional performances mirrors that of cognitive declines, with those with DS showing the fastest rates of decline.[21] A nine-year longitudinal study of 150 midlife adults with DS found that during the early years of adulthood and early midlife, persons with DS showed a similar pattern of change and stability in functional abilities and behavior problems compared to those with ID due to other causes.[13] However, relative disadvantages in cognitive and functional abilities among adults with DS increased markedly as they entered late-midlife and the aging years.[14] Older persons with DS were less proficient in daily living skills than either younger persons with DS or age-matched persons with other forms of ID.[21, 22]
In addition, older adults with ID are more likely than those under the age of 65 with ID to have a physical disability (21% vs. 15%) and hearing loss (9% vs. 5%) and be legally blind (11% vs. 8%).[9] Although reports indicate a reduction of problematic behaviors (e.g., withdrawal, aggression) with aging, older adults with ID have approximately twice the risk of developing depression as their age peers without ID.[23] Older adults with ID also are more likely to have a diagnosis of a mental illness (44%) than those younger than age 65 (35%).[9]
Due to the long-term use of psychoactive and neuroleptic medications, the ID population is notable for the prevalence of polypharmacy and for frequent complications associated with the long-term use of multiple medications. National Core Indicator Data indicate that 35% of older adults with ID aged 65 or older take medications indicated for mood disorder, 25% for anxiety disorders, 19% for psychotic disorders, and 18% for behavior problems.[9] Thus, “medication-related problems, including polypharmacy, adverse drug effects, drug interactions, and risks associated with longer-term use, may be a particular concern for many adults with DD.”[22, p.213]
Evidence-based interventions
Promising results from health promotion programs for the younger population suggest that adults with ID can benefit from structured efforts to reduce chronic disease risk through lifestyle changes.[12, 24] In a review of interventions to promote healthy aging in adults with ID, Heller and Sorensen classified health interventions into three broad categories: fitness/exercise only; interventions that used mixed approaches or focused on health education; and interventions aimed at health-care screening services, which typically involved either a comprehensive medical exam by a physician or nurse practitioner or screening for specific medical conditions such as high blood pressure, cancer, or heart disease.[12] In general, these three broad groups of interventions have been shown to have beneficial effects and can play a role in reducing health disparities for aging adults with ID. However, for the most part, these studies were designed as small-scale pilot efforts to evaluate the feasibility and efficacy of a newly developed intervention. Also, only a few focused exclusively on adults in middle age and old age. Thus, future research is needed evaluating these interventions using randomized control group designs.
Although several promising health promotion interventions designed for older adults with ID are in the development stage, there are several obstacles to successfully engaging individuals with ID as active participants in treatment. Communication difficulties among older persons with ID are a major barrier to providing health screening and other health services.[12] Physicians often rely on caregivers and family members as sources of medical histories. Clinical reports indicate that a major issue in the provision of health services is the extended time needed for obtaining relevant information, diagnostic testing, and explanation of treatments. Furthermore, some adults with ID have to be desensitized before invasive procedures can be performed.[22]
Older adults with autism spectrum disorders
Autism spectrum disorders (ASDs) are complex, lifelong, neurodevelopmental conditions with complex genetic etiology that can cause significant social, communication, and behavioral challenges.[25] Autism was first identified by Kanner in 1943; hence, the first persons to be diagnosed with autism are now in their seventies. ASD was historically thought to be rare, but it is estimated that about 1 in 68 children had ASD in 2010, which is more than double the rate in 2000.[26] It has been estimated that approximately 25% of the increase in the prevalence rates for ASD are due to changes in diagnostic practices rather than due to putative etiologic factors.[27] Owing to a combination of population aging, the increasing prevalence of ASD, and the demand for services by persons with ASD across the lifespan, improving knowledge about aging and autism has become a very high priority.
Autism is a “lifelong disorder whose features change with development,”[28, p. 527] and the details of these changes over midlife and old age are just now being explored.[29] Mailick and colleagues have conducted a 12-year longitudinal study of 406 families of individuals with autism.[30] At the beginning of the study, 38% of the sample was between the ages of 22 and 52. Over this time period, there was an age-related decline in health, with a more rapid decline after age 45. Medication use tended to increase around age 45, but there was a steady decline in behavior problems across all age groups.[31] There also was a general decline in social activities but not in functional abilities.[32, 33] These findings suggest that there is considerable variability in how individuals with ASD age.
In recognition of the difficulties that older persons with ASD may face, interventions for ASDs may include specific behavioral and speech therapy, as well as pharmacotherapies to treat associated features such as anxiety and depression. However, the evidence on effectiveness and safety of interventions for adults with ASD has not been well established at any age.[29] No medications are currently available to treat the core symptoms of ASD. Only one medication, risperidone, has been approved by the Food and Drug Administration (FDA) specifically for use among individuals with ASD who have serious behavior problems, and there are few clinical studies addressing the effectiveness of other medications in this population.[34]
Severe and persistent mental illness
Definition
Severe and persistent mental illness (SPMI) in adults aged 18 or older refers to disorders commonly accompanied by psychotic symptoms, including schizophrenia, schizoaffective disorder, bipolar disorder, and severe forms of major depression that typically develop in late adolescence or early adulthood and are lifelong conditions, resulting in significant impairment in daily living activities and in social, vocational, and educational functioning.[35]
Older adults with SPMI are a diverse and heterogeneous group with respect to their level of social, occupational, and psychological functioning. The largest subgroup of the population with SPMI consists of persons with schizophrenia, and longitudinal research suggests that the life course of schizophrenia is not one of necessarily progressive decline.[36] Rather, some persons experience fluctuations in symptoms in old age, others have long periods when they are relatively asymptomatic, and still others appear to recover.[37, 38] In a review of the research on older adults with schizophrenia, Jeste and Maglione concluded that “positive symptoms of schizophrenia become less severe, substance abuse becomes less common, and mental health functioning often improves.”[39, p.966] However, many individuals with schizophrenia experience debilitating symptoms into their later life. Even elders who show few residual signs of having suffered a long-term mental illness face many challenges because of the secondary effects associated with social isolation and financial impoverishment as well as the emergence of health problems related to the long-term side effects of psychotropic medication use.
Population characteristics and demographic trends
Prevalence
In 2012, there were an estimated 9.6 million adults with SPMI, representing 4.1 percent of all US adults. However, the data suggest that there was a lower rate of SPMI among those aged 50 and older (3.0%) compared with those aged 25 or younger (4.1%) or those aged 26 to 49 (5.2%).[40] The lower prevalence of SPMI in the older population is likely due to the remission of psychotic symptoms, premature mortality of the population, and the lack of aging-appropriate diagnostic criteria.[41, 42] Nevertheless, we have witnessed an unprecedented increase in the population of older adults with SPMI in the past decade, and the increase in the number and proportion of the population will continue, in part because of the aging of the baby boomer generation.
Life expectancy and mortality
The life expectancy for persons with an SPMI is shorter than that for the general population by 8–32 years.[43, 44] A review of 37 articles drawn from 25 countries found that people with schizophrenia have a 2.5 times higher risk of dying compared with the general population, and this substantial gap has widened over time.[45] The higher mortality in schizophrenia is due to both suicide and medical problems: 30%–40% of the excess deaths in schizophrenia are due to suicide and injuries, and about 60% are due to medical conditions such as cardiovascular diseases.[46]
Demographic and social characteristics
Although SPMI is more prevalent in women (3.6%) than men (2.4%) aged 50 or older, the gender difference in this age group is much smaller than that in younger age groups.[40] The average age of onset of schizophrenia is 2 to 10 years later in women than in men, and for women a second peak occurs between the ages of 40–45.[47] Women with schizophrenia tend to have milder symptoms initially, and progress to more severe symptoms as they age.[48] Although the reasons for the later onset of schizophrenia in women than in men as well as gender differences in disease course are unknown, one potential explanation involves the role of estrogen, which may serve a protective role to delay illness onset and lead to some new cases during menopause.[48, 49]
People with SPMI are likely to live in poverty and be less educated.[50] These adults are less likely to marry and have children than the general population, leading to smaller social networks than their age peers.[40, 51] Unlike earlier years when institutionalization was common, about 85% of older persons with SPMI reside in the community, and one-third to one-half live with family members.[52]
Age-related changes
Medical comorbidity is the rule for older adults with SPMI, with increasing risk also noted for this population. Studies on middle-aged and older persons with SPMI report that they are at increased risk for cardiovascular diseases, respiratory diseases, and diabetes relative to the age-matched general population.[53–55] Research suggests that similar biological mechanisms that are associated with age-related health problems such as shorter telomere length and increased inflammation are also associated with an increased risk of mental illness.[56]
One of the possible explanations for rapid physical aging in SPMI is the cumulative long-term effect of poor health behaviors and their general lack of access to adequate and appropriate health care.[57] Older people with schizophrenia are more likely to smoke,[58] use substances,[59] and maintain a sedentary lifestyle compared to those without a mental illness.[41, 60] Older age also is a risk factor for many long-term side effects of antipyschotics, including metabolic syndrome and movement disorders,[39] which may contribute to the poor health outcomes of persons with SPMI.[41] Compared with their counterparts without psychiatric disorders, older adults with schizophrenia or bipolar disorder show a higher risk of cognitive deficits and poorer neurological performance.[61–63] However, the degree of cognitive decline may vary by diagnosis. In individuals with bipolar, an accelerated decline of cognitive functioning in older age was found.[64] Some cross-sectional studies on schizophrenia also found sharper age-associated declines in cognitive functioning among older adults with schizophrenia than those without the illness,[65, 66] whereas a longitudinal study suggests that the overall pattern and rate of cognitive changes with aging appear parallel between the two groups of individuals.[67]
Evidence-based treatments for older adults with SPMI
Over the past decade, there has been a rapid growth in the number of carefully designed studies to evaluate newly developed nonpharmacological treatments to improve the cognitive, social, and physical functioning of older adults with serious mental illness.[68–75] Bartels and his colleagues have been at the forefront of an effort to develop treatments to improve the physical health of older adults. They adapted the Illness, Management and Recovery (IMR) program, which is an evidence-based practice designed to help patients with serious mental illness self-manage their illness, by extending it to age-related medical conditions commonly experienced by older adults with SPMI.[68] Known as the Integrated Illness, Management and Recovery (I-IMR) program, it contains both a general medical illness component that consists of an individually tailored curriculum for the self-management of general medical illness as well as the standard psychiatric component. In a study comparing I-IMR to the usual standard of care, Bartels and his colleagues found that I-IMR was associated with greater overall improvement in the patient’s self-management skills, improvement in self-management of diabetes, and a reduction in hospitalizations.
Bartels and his group also developed a combined skills training and health management (ST+HM) intervention for older adults with severe mental illness.[69] The intervention targets independent living skills, social skills, and effective management of medical health care needs. In a study comparing ST+HM to the HM intervention alone, individuals who received the ST intervention in addition to HM had better functional outcomes with respect to independent living skills, social skills, and health management skills at a one-year follow-up compared to those who received HM alone.
Finally, Bartels and his colleagues developed a peer collaborative training to improve the access of older persons with serious mental illness at risk for cardiovascular disease.[70] The training consists of nine weekly peer co-led patient education and skills training sessions and a 45-minute video-based training for primary care providers. In a study of 17 older adults aged 50 and older with mental illness, participants assumed a more active role in their health care and showed significant improvement in their health care–related communication skills.
In addition to Bartels’ group, several other teams have evaluated new treatments to improve the health of older adults with SPMI. The Helping Older People Experience Success (HOPES) program was developed to improve both the psychosocial functioning and reduce the long-term medical burden of older adults living in the community.[71] In a randomized trial of 183 older adults with SMI aged 50 or older, HOPES participants showed significant improvements in social skills, psychosocial and community functioning, negative symptoms, and self-efficacy compared to those in the treatment as usual group.
McKibbin and colleagues developed a lifestyle intervention for middle-aged and older patients with schizophrenia and type 2 diabetes mellitus.[72] The program, Diabetes Awareness and Rehabilitation Training (DART), consisted of 24 weekly, 90-minute sessions addressing diabetes education, nutrition, and lifestyle exercise. Sixty-four persons with schizophrenia who were 40 years or older were randomly assigned to DART or standard care. Results showed significant reductions in BMI and plasma trigylcerides for DART participants compared to those receiving standard care.[72]
Van Citters and colleagues examined whether participation in an individualized, community-integrated In SHAPE health promotion program would result in improved physical health behaviors.[73] In SHAPE promotes healthy eating and exercise behaviors and is provided in mainstream community settings. In a pilot study of 76 persons with SMI, participation over a nine-month period was associated with increased exercise, vigorous activity, and leisurely walking. Participants demonstrated a reduction in waist circumference and a decrease in the severity of negative symptoms.
There is a much smaller but growing evidence-based practice aimed at improving the cognitive, social, and daily functioning of older adults with serious mental illness. Granholm and his colleagues developed a 24-session weekly group therapy intervention that combined cognitive-behavioral therapy with social skills and problem-solving training to improve the functioning of mid-life and aging persons with schizophrenia.[74] In a randomized control trial, patients aged 42–74 receiving the cognitive behavior social skills training demonstrated significantly greater skill acquisition and self-reported higher levels of community living skills compared to those receiving the standard of care.
Multiple studies have demonstrated the benefits of cognitive training for patients with SMI, but these studies have focused mainly on younger patients with few targeting older adults with SPMI. McGurk and Mueser found that older adults showed few improvements in cognitive functioning from cognitive training, although they did demonstrate a significant reduction in negative symptoms.[75] This study suggests that cognitive rehabilitation methods may need to be tailored to address the special needs of older patients with severe mental illness.
All of the preceding interventions assume that the patient is receiving standard medications for the treatment of SPMI. However, the long-term safety and effectiveness of antipsychotic medications in older adults with SPMI has not been adequately studied. Older adults with SPMI appear at increased risk for experiencing side effects associated with psychiatric medications. In a study of four commonly prescribed atypical antipsychotics (aripiprazole, olanzapine, quetiapine, and risperidone) in a group of 332 middle-aged and older outpatients with psychotic symptoms, 36% had metabolic syndrome, and approximately 24% had serious side effects.[76] Since a large number of age-related changes may affect the metabolism and absorption of antipsychotic medications, it is generally recommended that older patients be started on a low initial dose (25%–50% provided to a younger adult) and slowly increase it until a therapeutic effect is realized.[76] Family and friends need to vigilantly monitor side effects to help determine whether the medications having their intended effect.
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