Issues in aging

Nurs Clin N Am 38 (2003) 291–312

Issues in aging The role of the nurse in the care of older people with intellectual and developmental disabilities Kathryn Pekala Service, MS, RNC/NP, CDDNa,*, Joan Earle Hahn, DNSc, RN, CDDN, CSb a

Franklin-Hampshire Area Office, Department of Mental Retardation, One Roundhouse Plaza, Northampton, MA 01060, USA b University of California at Los Angeles, School of Nursing, 700 Tiverton Avenue, Box 956919, Los Angeles, CA 90095-6919, USA

Predictions from the Second World Assembly on Aging held in Madrid, Spain, in April 2002 estimate that the number of people who are over the age of 60 will be dramatically increasing from one in ten currently, to one in five by 2050, and to one in three by 2150. With these statistics, nurses and others are actively considering and addressing issues related to aging [1]. Due to advances in medicine, education, science, and technology, people with intellectual and developmental disabilities (I/DD) are also surviving and aging [2]. Although in America, statistics vary as to the actual number of individuals who are aging with lifelong disabilities [3], most demographics estimate that for every 1000 older adults of ages 60 years and older, that four to five adults are living with I/DD [4]. Even people with certain disabilities who in the past had been documented as having a shorter life expectancy are now living longer. In the United States, life expectancy of people with Down syndrome has doubled since the early 1980s [5]. Historically, a lack of awareness about aging of individuals with I/DD can be attributed to a number of factors, including the fact that the life span of these individuals was relatively shorter, just like that of the general population. Additionally, for much of their lives, people with I/DD lived in institutions, and those who lived in the community may have been sheltered

* Corresponding author. E-mail address: [email protected] (K.P. Service). 0029-6465/03/$ - see front matter Ó 2003, Elsevier Inc. All rights reserved. doi:10.1016/S0029-6465(02)00055-5

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or were at a higher level of intellectual functioning so that their disability did not warrant emphasis or significant acknowledgment. Many of these individuals were unknown and may continue to be unknown to the formal disability service system for a variety of reasons [6]. Nurses in almost all settings will come into contact with aging people with developmental disabilities. Thus, the need for information about aging issues for adults with developmental disabilities is intensifying. The provision of supports relating to one’s health throughout the life span contributes to one’s health in older age with and without developmental disabilities. Nurses have had a long and rich tradition of supporting individuals, including those with developmental disabilities, in health activities. Care of older persons with developmental disabilities is emerging as a significant issue for gerontologic nurses [7,8]. Access to health care for persons who are aging with I/DD is restricted by a number of factors, including nurses’ and other health care professionals’ lack of knowledge or lack of education about health issues of aging individuals [9]. This article reviews historic and current information about aging people with developmental disabilities and discusses the role of nurses in the support and care of these individuals. The following list provides facts on aging and intellectual disabilities [4].
Older people with ID have the same needs as do other older people.
The increasing life expectancy of people with ID is now an established fact.
Older people with ID are subject to compounded stigmatization.
Millions of adults with ID are still living with their families.
Adults with ID are too often excluded from planning for aging services.
Older age services or supports help to minimize age-associated conditions and encourage health aging. These include social, housing, health special care needs, and activity or work.
Informational resources are available via the Internet.

Factors influencing longevity The present cohort of people with I/DD who have survived into old age are less likely to have a number of risk factors that contribute to decreased longevity regardless of etiology of the disability [10]. Factors associated with a higher risk for mortality include seizure disorders, cerebral palsy, major medical problems such as chronic upper respiratory conditions, heart conditions, infections, choking, reduced mobility, less independent toileting and eating skills, and severe to profound levels of intellectual functioning. Although a lower level of intellectual functioning does not actually increase chances of premature death, many concomitant health problems are common in individuals with a severe disability [11]. This may put them at a higher risk for mortality. The present cohort of older people is viewed as

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survivors [2] with qualities of resilience or hardiness. Many of these individuals have a higher level of social competence and lesser dependence on others. Concurrently, a number of these older adults are providing meaningful support to others [12].

Aging families Two-generation families consisting of elder parents and their adult children face a number of issues. Parental illness, incapacity, death, or even retirement can contribute to a major life transition for the adult child and other family members. A reciprocal relationship between these family members is frequently noted when the adult child with I/DD assumes the caring responsibilities for the parent. Many parents will avoid succession planning (ie, who will ‘‘care’’ for the adult child when the parent is no longer able to do so) [13] or permanency planning for future residential, financial, or legal concerns, in the event that they are no longer able to be caregivers. Lifelong perception of parental responsibility often blocks the initiation of planning for the future. One mother stated that she needed to live until 106 so that she could care for her child. The likelihood that these adult children will outlive their parents is very high [14,15]. Although this has many implications for the informal and formal networks (particularly with service provision), the impact of family aging on the individual can present many challenging implications and results. As with all families, the history, nature of the characteristics, particular family dynamics, and negotiated commitments all have an impact on the individual and their networks in a multitude of ways [14].

Psychosocial issues Old age is not a medical diagnosis; neither is I/DD [10]. The International Association on the Scientific Study of Intellectual Disabilities Fact Sheet on Aging [4] highlights the notion that older people with intellectual disabilities are subject to the compound stigmatization; ageism with handicapism is particularly common in achievement-oriented societies, such as the United States. Many older adults without disabilities have negative stereotypes and attitudes toward their peers with I/DD. In some community senior centers, older individuals with I/DD are isolated and are not welcomed by their nondisabled peers to participate in the activities. One adult day health program nurse reported that families who tour her facility for placement of their aging family member commonly communicate concerns about the presence of individuals with I/DD who are already attending the program. Prejudice exists toward persons who are aging and for persons experiencing disability, yet different facets of a society show varying levels of acceptance or indifference [6].

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Several terms describe some of the key concepts that may present as dilemmas for older persons with I/DD, such as ‘‘aging in place’’ or being able to stay in a current setting. The concept of ‘‘autonomy’’ also may present as a dilemma. The concepts of ‘‘choice’’ and ‘‘self-determination’’ are integral to the field of developmental disabilities. As all individuals age, the application of these concepts proves to be trying. The general nursing care of older people often disregards the principle of autonomy based on unproven beliefs of the older person’s incompetence or lack of capacity for decision making [16,17]. This has been mirrored for people with I/DD, which can evolve, as previously noted, to compound the stigma associated with aging. Ansello and Janicki [3] proposed the term ‘‘assisted autonomy’’ to describe situations in which individuals are given the opportunity to make their own choices, with negotiation with and assistance from others. This honors the aging person’s fundamental need for respect, care, meaning, and social connectedness. Assisted autonomy also takes into consideration an individual’s social, cultural, and historic context [18], and encourages recognition of personal values, beliefs, and health care practices of individuals [17], which is a key component of nursing care.

Health issues What is currently known about physical aspects of aging in individuals with I/DD is limited; however, it is known that older persons with I/DD may acquire ‘‘normal’’ age-associated conditions. Generally, people with I/DD experience the same physical process of aging as do individuals without lifelong disabilities, with the exception of those individuals who have Down syndrome (who have often been described as having an accelerated aging process) [19]. Some individuals with I/DD may experience some unique concerns associated with aging. These age-related changes have many implications for the role of nurses in the provision of care. Changes associated with normal aging, routine care considerations, and specific concerns for older persons with I/DD are illustrated in Table 1. Like others without disabilities in their age cohort, the lives of aging people with I/DD are influenced by a number of factors including race; gender; cultural background; and physical, emotional, and intellectual state [12]. Similarly, as with the general population, the health status of aging people with I/DD can also be affected by disease, disuse, lifestyle, environmental factors, and level of health promotion and disease prevention practices. The lifestyle and environmental factors listed below [15] are deterrents of good health for people with and without lifelong disabilities.





Overeating Poor nutrition Use of tobacco (smoking) and second-hand smoke Lack of regular exercise

Lymph nodes #in size, #immune function, "risk for infection

Nails #growth, brittle, deformed toenails, thicker, brittle hard, yellowish, "longitudinal ridges, "splitting into layers

Skin/hair #sweat–oil glands, #skin layer–#perspiration, #sensation to heat and cold and tissue repair response, "itching, "dryness, thinner, less elastic, "wrinkles, "age spots (sun), "moles, warty growths, "corns, calluses, "rashes, "risk for skin cancer, "risk for mole changes, fragility of small blood vessels, overall hair loss, graying and thinning of hair, "hair in nares and ears (men), "facial hair (women)

Normal aging

Table 1 Assessment and care guidelines Specific concernsa

Note any swelling in neck, axillae, and groin, and report to medical provider. Note if repeated cough, "temperature, colds (with immune system)

Weekly nail care. Keep nails short and clean. Check hands for any sores or change in range of motion. Observe skin for self-inflicted trauma, scratching, itching, sores from nails trauma

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Cancer. Viral syndromes. Pneumonia. Infections

Calcium deficiency. Brittle nails. Hypothyrodism. Change in nails. Propensity for fungal disorders

Diabetes. Hypothyroidism. Trauma. Skin Baths–showers 2–3 times per week with mild cancer. #insulation against cold temperature or hypoallergenic soap/shampoo. Rinse soap off "brushing. Monitor for skin conditions thoroughly, shampoo weakly, warm water, dry such as psoriasis, dandruff, skin growths or thoroughly, lotion all areas—No powders. Check lesions, scabies, pruritis, fungal infection. skin condition. Avoid remaining in one position, CP: risk of skin breakdown. DS: prone to if immobile turn every 2 hours to prevent xerosis (dry skin). Photosensitivity with breakdown, or shift weight in wheel chairs. Avoid medications such as antipsychotics shearing or friction movement. Avoid sun or "heat as may overheat. Keep hydrated, 6–8 oz. glasses water daily. Dress for weather (avoid overheating or cold exposure). Remove facial whiskers (women). Shave men. Check for dandruff, lesions, abrasions, bruises each day. Sun protection: coverings such as hats, long sleeves, and sunscreen

Routine care

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Routine care

Endocrine #T4 production, "hypothyroidism risk, "fibrotic, Monitor for mental status changes, dry skin, and irregular thyroid. Dizziness with head or neck sensitivity to cold, heat. Prevent falls, teach to move slower to avoid fainting or syncope with movement with risk for falling or head injury, #basal metabolic rate, alteration of tissue quick movement, especially when change in position. Assist with ambulation if at risk for sensitivity to hormones (#insulin response), #thermoregulation and febrile response, falling. Watch for susceptibility to temperature #immune response extremes. With lack of febrile response, monitor other S/S of infection Eyes #visual acuity (presbyopia), #central vision, Annual vision exam. Rooms well lighted, no clutter. No loose rugs, furniture out of the way. Use "night blindness, "IOL pressure, "complaints assistive devices, if needed (canes, walkers). Check of blurred vision, "dry eyes, "scleral brown spots, "difficulty doing near work (reading#), eyes for any signs of infection, discharge, vision #visual fields and accommodation, "eyelid changes. Have large-print books available or sagging or turn in or out, lens yellows, talking books. Note any eyelids sagging or dropping, S/S of infections. Report any c/o vision "distorted depth perception changes (see first item) Ears Hearing, #hearing with presbycusis— Annual hearing exam. Note changes in hearing. degenerative changes with age, less filter of Check ears for cerumen. If uses hearing aid, clean background noise, degeneration of hair at night. Note any discharge or c/o ear pain or cells/organ of corti after age 50, "cerumen, temperature or hearing changes. Decrease "cartilage formation making auricle and nose background noise. Avoid shouting, fast speech, more prominent poor acoustics, as it "distortion.

Normal aging

Table 1 (continued )

Hearing deficit (especially high frequency sounds such as sz, ch, dg). Safety concerns. Socialization and emotional needs, ie, isolation. DS: Narrow canals, prone to cerumen impaction and earlier age-related hearing changes

Glaucoma. Cataracts. Diabetic retinopathy. Hypertension. #vision changes. "falls, macular degeneration. DS: keratoconus, earlier cataracts and other age-related visual changes

Hyperthyroidism. Mental changes. "confusion. Headaches. Hypertension, cardiac history, syncope. DS: hypothyrodism. DS: fragile X, and Sz: earlier menopause. Turner’s syndrome, fragile X and antipsychotic use: earlier menstrual irregularities which #BMD. Sz: changes in sz pattern with menopause, PWS: "risk for diabetes due to obesity

Specific concernsa

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Chest and lungs #chest expansion with lifestyle, #lung capacity, #respiratory muscular strength, loss of lung resiliency, lung becomes fibrous, "dyspnea, ciliary atrophy, "risk for infections due to #lung abilities, "risk for infection, emphysema second to smoking, bronchitis

Nasal #smell, "nasal dryness, "lesions

Mouth Soft tissue changes in mouth, #gingival tissue less elastic, easily injured, "tongue fissures, #motor function, #taste to sweet/sour first, #salivation with medications (anticholinergics, diuretics, antihypertensives, antihistamines, antidepressants, antispasmodics, tranquilizers), angular stomatitis (maceration of corner of mouth), "swallowing problems, "dental problems/difficulty chewing, "dry mouth

Encourage daily exercise. Monitor for SOB, cough, respiration deficiency. Check for changes in lung or breath sounds, wheezing, difficulty breathing, SOB. If history of asthma, monitor for SOB, wheezing, and use of inhaler

Monitor for nasal dryness, nosebleeds, difficulty breathing, nasal discharge, lesions, report colds

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Asthma. Chronic obstructive pulmonary disease. Bronchitis. Pneumonia. Hypertension. Congestive heart failure. Cancer. DS and CP: "susceptibility to infections (CP aspiration)

Allergies. Sinusitis. Nasal lesions. Body odors (socializing). Safety, ie, gas leaking, smoke inhalation, spoiled food. DS: smaller nasal passages, "upper respiratory problems

Annual dental exam. Check dentures for fit, note Weight loss. Poor dentition, edentulous. Stroke. any sores. Check teeth for cavities, pain, swelling, Dental infections. Swallowing difficulties. at time of oral care. Check for fissures, oral Feeding tube: note bowel tones before feeding, lesions. Lip protection/moisturizer. Monitor notes skin condition around the site, head of eating. Note swallowing, choking, eating problems, bed elevated with feedings, prevent aspiration report to provider pneumonia, Dilantin hyperplasia. CP: "risk of aspiration pneumonia due to "swallowing problems with aging, dental erosion. DS: periodontal disease, cheilitis (redness, scaling, crusting around the lips)

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Breast and axillae Relaxation of suspensory ligaments, nipples become smaller, flatter, skin irritation with tissue to tissue contact. Breasts appear flattened Digestive #mobility with #secretion, #digestive enzymes, #peristalsis, esophageal emptying, #ability of liver to metabolize drugs, atypical þ/or #pain perception, "fat around abdomen with weak abdominal muscles, "constipation with changes in bowel patterns, diarrhea, incontinence, "hemorrhoids

Heart/cardiovascular Thickening and loss of elasticity of blood vessels, #baroreceptor sensitivity, altered heart rhythm, #heart rate and responsiveness to stress, "risk for heart disease, angina, #cardiac output and reserve

Normal aging

Table 1 (continued )

History (family or personal) of breast cancer. History of dermatitis. "risk of CA with nulliparous women

History: Constipation, bowel obstruction, gall bladder, hepatitis, recent falls, ulcer/ gastrointestinal upset, cancer, dehydration, laxative use, fecal incontinence associated with fecal impaction, underlying disease, neurogenic bladders, drug interactions with other drugs, food, alcohol. Drug metabolism altered (due to liver, kidney, gastrointestinal changes, ie, #albumin/protein, delay in absorptionofvitaminsandothermedications.) CP and other central nervous system compromises: prone to lower and upper dysmotilities such as GERD, anemias, constipation, and so forth

Monitor, report changes in bowels, constipation, diarrhea, incontinence (note if change from usual), c/o abdominal pain, abdominal distention, nausea, emesis, indigestion, gas, or flatus. Note regular bowel movement, report all abnormal color, amount, consistency. Give 6–8 oz. glasses water daily to prevent hydration and maintain good skin turgor

Coronary artery disease. Peripheral vascular disease. Stroke (CVA). Angina. " or # hypertension. History of heart attack. Atrial fibrillation. Cardiac syncope. Congestive heart failure. Skin changes or edema of legs. DS, fragile X: Exacerbation of pre-existing conditions (eg, congenital heart defect, mitral valve prolapse). PWS: prone to cardiovasculer disease

Specific concernsa

(Self breast exam or with physical exam to rule out masses, breast changes. Note changes in breasts, such as swelling, pain, lumps, change is size, discharge, or lesions

Monitor for c/o ‘‘fast heart,’’ c/o chest pain (with radiation to jaw, neck, back, down left arm), or c/o crushing feeling —SOB, nausea, indigestion, abdominal pain—take vital signs with above complaints and report to medical provider immediately. Teach pacing of activities, and provide means for energy conservation, "time between position changes, avoid activities that "vasovagal response such as bowel movement straining

Routine care

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Genital/urinary History of yeast infections, cancer, urinary #estrogen levels with "vaginal dryness. #sphincter Note at time of bathing any c/o pain, vaginal tract infections renal problems, vaginal discharge, lesions. Note any changes in color control, "urinc—incontinence, dribbling infections (with diabetes). Prostate cancer. of urine, burning, pain, odor, blood, c/o back pain, problems. Male: #testosterone levels, frequent Sexual abuse. CP: worsening of bowel and Report. Note changes, " or #urine output. Good "prostate, "problems with dribbling or starting bladder problems hygiene care daily and after each incontinence to to void, "night voiding, "dribbling, #sphincter prevent skin breakdown, wash penis, clean under tone, voiding changes with bowel or bladder foreskin, (uncircumcised men). Note any c/o testes habits, #glomerular filtration rate, nephrons, pain, swelling, redness, warmth, tenderness. creatinine clearance, and bladder muscular tone, Report c/o burning with urination or blood in altered response to fluid load urine. Close access to bathroom, good night lighting, regular reminders to use toilet, quick response when c/o need to void Musculoskeletal CVA. Problem with syncope, hypotension. Encourage: regular exercise and muscle building, Bone loss/changes (osteoporosis), postural, gait, Rheumatoid arthritis. History of old hip weight-bearing exercises daily. Allow time and balance changes, #long bone, weight fractures. Osteoporosis (risk factors such as for reaction, keep living areas free of obstruction. bearing (more prone to fracture), #reaction A/C use, nutritional deficiencies, small size, Encourage: activities time, #speed in movement and agility, #range immobility). " risk for falls with age. DS: to help hand to eye coordination and muscle of motion, #muscle strength, #muscle bulk, ligamentous laxity, bunions, osteoarthritic strength, ambulation, walking, and activities. #position sense and righting reflex, changes is spine knees, atlanto-axial instability. Monitor for range of motion changes—in "temperomandibular joint pain, "nodules CP: #BMD, back and hip deformities, pain due movement, changes in posture, gait, shuffling. (rheumatoid arthritis), "arthritis osteo/ Report same. Use medications per order for rheumatoid, "kyphosis with "flexion of hips to chronic abnormality in muscle tone, fragile arthritis with activity daily. Monitor for warmth, and knees, head tilts back X: musculoskeletal disorders pain, tenderness of joints, pain with movement of hands, elbows, knees and feet, use of nonslip surfaces and aides such as rails, adaptive equipment (continued on next page) K.P. Service, J.E. Hahn / Nurs Clin N Am 38 (2003) 291–312 299

Specific concernsa

Provide for social activities, contact with friends and loved ones. "time for all activities, encourage emotional and spiritual needs with support of aging changes, life events/losses. Provide daily activities to meet emotional–social and spiritual needs. Use of memory aids or familiar objects to "ability to learn new tasks, speak slowly and distinctly, use environmental cues, routine, give simple messages and allow time to respond. Encourage regular sleep routine, #caffeine and fluids before sleep, use of darkness, quietness, coolness, and comfort for sleep.

Aging changes that interfere with ADLs or routine. Illnesses that cause reactions in life or ability to do normal ADLs, which include CVA, hip fracture Parkinson’s disease, diabetes, cancer, vision or hearing changes or problems, asthma, chronic destructive pulmonary disease, and other respiratory problems. DS: sleep apnea and at risk for AD

Monitor for not eating, c/o food ‘‘not tasting right,’’ CVA. Diabetes. Transient ischemic attacks. excessive use of sweet and salt, monitor for safety– Parkinson’s disease. Neurological disorders. Hypotension. Long-term use of antipsychotics: exposure to heat and cold. Monitor for gait changes, "bruising, lesions, changes in position TD and other movement disorders, DS: earlier sense or balance, use of hot/cold controlled onset of AD, Sz: possible remission of sz so need frequent reappraisal of A/Cs faucets, monitor bath water and heating pad usage

Routine care

Abbreviations: A/C, anticonvulsants; AD, Alzheimer’s disease; ADL’s, activities of daily living; BMD, bone mass density; CA, cancer; c/o, complains of; CVA, cerebrovascular accident; DS, Down syndrome; GERD, gastroesophageal reflux disease; IOL, intraocular lens; PWS, Prader-Willi syndrome; S/S, signs and symptoms; SOB, shortness of breath; sz, seizures; TD, tradive dyskinesia. a I/DD-specific concerns [20] are noted in italics. Data from Cesarotti EO, Stern SMF. The Arizona model: an innovative model for Alzheimer’s care. Nurs Pract Forum 2001;12(1):23–37; with permission. Modified from Hahn JE. Physical aspects of aging: implications for individuals with development disabilities. Chicago: Johnston R. Bowman Health Center for the Elderly 1994; and Service KP. Grow old along with me: issues of aging for people with developmental disabilities [educational module]. Northampton: Massachusetts Department of Mental Retardation; 1996.

Mental changes "time to perform skills and reaction time, slowed stimulus to recognize and respond, change in sleep (#rapid eye movement level-4 sleep, "waking during night, involuntary limb movement)

Neurological #taste (sweet and salty impaired first), #smell, #gait, #sensation–#ability to feel hot and cold, #reflexes ankle, knee with slower reaction time, #abdominal reflexes, vibration sense

Normal aging

Table 1 (continued )

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Increased use of alcohol or other nonmedical drug use Poor hygiene practices, particularly with communicable disease Abuse, violence, neglect disease, and other age-associated conditions Alzheimer’s disease and other dementias Sensory impairments Mobility impairments, for example, as a result of osteoarthritis and pain Use of multiple medications

Similar to their peers without disabilities, many aging people with I/DD consider themselves to be healthy. Good health can be attributed to a healthy lifestyle. Furthermore, the risk of developing chronic diseases that are acquired as adults mirrors the same interaction between hereditary predisposition and environment [9]. As people with I/DD age, one unique concern is that the consequences of early onset age conditions combined with the long-term progression or interactions of older onset conditions can result in additional functional impairment, morbidity, and even mortality [9]. From a review of the literature, older individuals with I/DD may have similar or even higher rates of age-related conditions than do older persons without lifelong disabilities [20]. They are often more prone (compared with the rest of the population) to health problems because of gross obesity, hypertension, epilepsy, cerebral palsy, poor dental health, and an increased level of psychiatric morbidity [21]. As more people with I/DD age, research indicates that individuals with specific conditions or impairments associated with I/DD have particular health risks. Health conditions (which have been termed ‘‘secondary conditions’’ [22]) can result from motor, neurologic, and other significant compromises or from environmental factors (eg, depression that may be associated with isolation) that the person experiences that are associated with a primary disabling condition such as cerebral palsy or Down syndrome. The conditions related to cerebral palsy are as follows [7,20,23]:
Increased respiratory and swallowing problems
Muscle–skeletal issues including back and hip deformities, pain from abnormalities in muscle tone, and loss of bone density with fractures (particularly related to immobility and, historically, the use of certain anticonvulsants)
Urology—worsening bowel and bladder function
Risk for skin breakdown
Increased gastrointestinal (GI) problems such as dysphagia, reflux, constipation, fecal impaction, esophagitis, anemia, feeding problems, aspiration, and pneumonia
Psychosocial issues such as depression
Dental concerns such as dental erosion, which in turn impacts the oral– motor part of the GI tract
Pain from untreated conditions such as degenerative musculoskeletal conditions, constipation, reflux esophagitis, and allergic rhinitis

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The conditions related to Down syndrome include [7,19,20]:
Cataracts
Thyroid disease (such as hypothyroidism) and other endocrine issues such as early menopause
Musculoskeletal problems resulting from ligamentous laxity, bunions
Osteoarthritic changes in the spine
Atlantoaxial instability of the spine
Sleep apnea
Presbycusis with hearing loss
Exacerbation of pre-existing cardiac condition
Obesity
Osteoporosis and decreased bone mineral density
Periodontal disease The use of treatments (associated with the primary condition) may have additional consequences; for example, movement disorders can result from the prolonged use of antipsychotic medications and osteoporosis can result from long-term use of certain anticonvulsants. The acquisition of a chronic health condition may be manifested throughout different stages of the life span or may develop or increase with the impact of age [20]. Research has suggested that people with Down syndrome show physical signs of aging earlier, even as much as 20 years earlier than people without Down syndrome [19]. This includes the development of dementia such as Alzheimer’s Disease. The signs of Alzheimer’s Disease are observed at younger ages and are often expressed differently in people with Down syndrome than in people from the general population [24]. Memory loss may not always be noted and generally not all symptoms that are associated with Alzheimer’s Disease occur. Commonly observed symptoms include loss in self-care skills, changes in personality, periods of inactivity or apathy, loss of conversational skills, possible incontinence, and onset of seizures that have not been noted previously [24]. Support and care for older people in general have been described as challenging [25]. Numerous barriers to providing health care services to people who have I/DD has also been acknowledged in the literature [26] and by nurses and other health care professionals who are active in practice settings [27]. Clinicians who work both with people who are aging and people with I/DD are often involved in care decisions that frequently have a direct impact on the person’s quality of life [25]. Small changes in the ability of the older person to perform daily activities or in the ability of the carer to provide support can have a direct impact on major life decisions [25]. This is also the case for people with I/DD who are aging. For the past 11 years, Hazel, age 80, has been supported in an adult family (foster) care program at the home of Bertha. She attends an adult day health program 5 days a week. Hazel, who was experiencing problems with gait and

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balance, frequently needed to void during the night. Even with a commode by her bedside, she was frequently found with bruises, which resulted from slips from the chair onto the floor that she had while making the transfers. A baby monitor was obtained, but Bertha found that her sleep was so disrupted that she experienced difficulties the next day. A person to spend the night and respond to Hazel could not be obtained. A move to a residence in which this was possible was being strongly considered [25].

As is noted by Gallo (a geriatrician) and colleagues [25], older people are vulnerable to reversible problems that contribute to disability, and even a small improvement in functional status can have significant positive effects. The same is true for people with I/DD. Diagnostic overshadowing or attributing symptoms to the I/DD alone has been noted as a major challenge when caring for a person with I/DD, because of difficulties with separating the disability presentation from comorbid health impairments [28]. For a person with I/DD who is older, ‘‘shadows’’ of normal aging changes can also complicate the assessment process. Nurses practice their discipline using a systematic approach to support those individuals for whom they provide care. The nursing care process encompasses the steps of assessment, diagnosis, planning, and interventions. This article uses these steps as a framework to discuss nursing care of older people with I/DD. Assessment The provision of care for aging individuals, as well as persons with I/DD, necessitates that the nurse use a comprehensive approach to assess functional status in addition to physical and mental health concerns. The multidimensional process of assessment that includes assessment of cultural and socioeconomic status, spirituality, and advanced directives can then guide the nurse in planning care that focuses on improving wellness, preventing illness, and nurturing health [25]. In geriatrics, functional ability is the key focus of the assessment and interventions. Many of the problems that are common for older individuals are of a chronic nature, with little or no possibility of cure. Although it is still necessary to identify and treat possible reversible conditions, the aim is to maximize functional ability and well-being, in contrast to focusing on curing illnesses or the underlying problems [29]. The principles used in geriatric care have the same main focus as that used in caring for people with I/DD; that is, assessment of functional status guides the determination of interventions for developmental, aging, and health concerns. A number of factors compound and influence the assessment of aging persons. A central issue is the apparent lack of knowledge about the effects of the process of normal aging (as opposed to changes caused by disease) [29]. For example, with aging individuals with I/DD, frequently the diagnosis of dementia has been predominently given based on symptoms or

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functional changes associated with normal aging changes—a diagnosis that is later ruled out through appropriate diagnostics and evaluations [30]. The atypical and nonspecific presentations of illnesses and iatrogenic conditions, the coexistence of multiple diseases, and the lack of or underreporting of symptoms by the individuals themselves confound assessment [29]. Emphasis must also be given to a careful review of medication, for many aging individuals may sustain reversible iatrogenic conditions from medications that affect their quality of life. Behavior is another key component in the assessment of older persons. A change in behavior may be the only presenting symptom for a urinary tract infection, for both people who are aging and for people aging with I/DD. The basic framework for any comprehensive geriatric assessment includes the elements of observation, the utilization of such information as the health history and review of systems, obtaining knowledge as to health risks and health practices, and the physical examination, in addition to functional, environmental, and developmental assessments [29]. Consultations with other disciplines are common components of the assessment process in the fields of developmental disabilities and geriatrics. Assessments may require increased time to complete. People who are older may tire quicker and have a reduced stamina. People with I/DD may also have difficulty with a lengthy or demanding process and may not be able to tolerate it. Depending on the setting and reason for the assessment, the nurse may modify the sequence, scheduling, and other components of the process. For instance, planning to schedule an assessment for the first activity after breakfast when the individual is refreshed may capitalize on the person’s best interactive time. When numerous tests and evaluations are needed, the nurse can pace the activities so as not to overtire or overwhelm the person. Other nursing actions include using the person’s personal support networks to assist in interviews and provide comfort. Individuals with I/DD may be supported in a variety of different environments ranging from living in one’s own apartment with an aging spouse with no formal network supports to living in a 24-hour staffed (direct care and nursing) residence [31]. The reliability of information may come into question when obtained from a third party. The data that are received may differ as a result of conflicting opinions between family members and paid staff [32]. Some sources [33] have even questioned the reliability of subjective information given by the individual with I/DD. Assessmentis a matter of validating the information from multiple sources. The assessment of older persons is dynamic, and the diagnoses and plans may be different for one individual at different points in time because of changes in the environment or other factors [31]. Because of commonly reported poor expressive and receptive abilities and deficits in cognitive functioning, the usefulness of self-report can be somewhat limited. Additionally, another common problem that has been encountered is the lack of knowledge of historic information because of the shortness of time

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that many of the paid carers have been involved with the person. Conversely, voluminous historic records may make the assessment process more cumbersome without a streamlined history. The difficulties in gathering reliable information may actually pose more questions than answers during the assessment process [31]. One important recommendation that is useful in the assessment process for aging people with I/DD is the establishment of a record of baseline status (that includes function). Obtaining baseline information (such as functional data and psychometric testing) prior to the age of 40 is key so that a comparison and contrast for changes can be determined [30]. This supports the notion of a life-span approach to care. Functional ability is an integral concept in understanding I/DD and an important issue in geriatric health [23]. Functional decline is one of the most common complaints that brings aging people with I/DD in for an assessment. This decline can be either in self-care or activities of daily living (ADL) skills such as dressing or bathing, or other skill areas based on physical or cognitive performance [23]. Interestingly, many direct care staff have described functional decline, not as losses of specific ADL skills, but rather as changes in quality or type of social skills [23]. Thus, determination of the nature of the decline is an important consideration for the assessment. Numerous conditions could cause a functional decline. Some of these include congenital heart conditions, hypothyroidism, hearing and visual impairments, gastric disorders, depression, and other mental health issues [30]. Inadequately treated pain can impair function. A number of psychosocial issues that can negatively impact function include bereavement and inappropriate residential or day programs. Frequently, many concurrent and even interrelated conditions have the potential to cause disability [23]. Problem identification and diagnosis A number of texts [34,35] describe nursing diagnoses and gerontologic conditions in great detail [35,36]. Key concepts (some of which have been noted previously) are briefly reviewed in this section. With older individuals, many illnesses present with atypical and nonspecific symptoms such as fatigue, weakness, and functional decline [29]. For instance, the failure to thrive that is seen in older persons could be a presenting symptom of a great number of physical or mental diseases or medications. Some of these illnesses with atypical presentations include infections or inflammations, endocrine disorders such as thyroid disease or diabetes, cancer, dental problems, depression, congestive heart failure, isolation, or neglect [29,36]. Other multifactorial diseases present with symptoms that include confusion, fatigue, insomnia, urinary incontinence, pain, and falls [29,36]. Acute disorders present differently in older people because of normal changes of aging. For instance, the presence of a normal body temperature may not mean that infection is absent [36]. Likewise, white blood cell count may

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increase, decrease, or remain unchanged in the presence of an infection [36]. Nurses are often in the role of detective to sort out the nature of the presenting symptoms for older persons. In older people, many common diseases present atypically. For example, congestive heart failure may present with symptoms of urinary incontinence or confusion. Pneumonia may present with anorexia, confusion, weakness, fatigue, or unsteady gait [29]. Matilda was a 66-year-old woman with I/DD whose chief complaints were gradual changes in gait and increasing confusion. The staff believed that she was developing dementia. After a careful assessment, it was determined that she was aspirating silently and had multiple episodes of pneumonia. With dietary and feeding modifications, she no longer had signs or symptoms of dementia.

Because older-age onset diseases are common in older people with I/DD, a high index of suspicion for clinical diagnosis is required [20]. Planning and interventions Although health promotion is a major part of nursing planning, there is tremendous debate as to the benefits of primary (prevention of the disease before it occurs) and secondary health prevention (disease detection at an early stage) practices in older people [37]. Despite controversy, certain preventative measures are indicated for older persons with I/DD. Regular nutrition screening is a vital health promotion strategy for older people with I/DD. A number of nutritional assessment tools can be adapted according to the individual’s needs and resources [21]. Regular screening with mammography for breast lesions, pap smear (frequency according to risk factors) for infection or cancers, stool specimen for occult blood, and digital exam for monitoring prostate size can help to reduce mortality and morbidity among older individuals [37]. Cancer screenings should be determined on an individual basis. Immunizations, including pneumococcal vaccines for older persons, are also an important facet of primary promotion, often overlooked in individuals with I/DD. An increasing body of knowledge exists about gender-specific recommendations, particularly with regard to people with I/DD. An example of a gender-specific recommendation is earlier bone density screenings, which are particularly important for women who have taken certain anticonvulsant, corticosteroid, or neuroleptic medications; who are nonweight bearing, thin, or of a low weight; or who have Down syndrome and may experience menopause at earlier ages [20,38]. Offering adults with I/DD the same array of health preventive practices as are offered to members of the general population could significantly enhance their health and quality of life [20]. Some preventive health interventions may not be worthwhile; however, others may prove helpful. For example, whereas aggressive attempts at cholesterol control in asymptomatic individuals over the age of 75 may not be

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appropriate, observing dietary practices to maintain a reasonable weight is important to maintain one’s functional status and reduce degenerative joint disease problems [37], which, in turn, affects the individual’s quality of life. Growing evidence supports the benefit of exercise for older people [37] along with eating a well-balanced diet for an age-adjusted weight. Older individuals should also optimize their intake of fiber, calcium, and vitamin D. Calcium, vitamin D and weight-bearing exercise need to particularly be acknowledged with a growing recognition of the risk of osteoporosis in people with certain I/DD, sometimes with an earlier onset. Interestingly, when reviewing the pros and cons of nicotine reduction and regular, safe exercise, there are no contraindications [37]. Nurses know that health promotion is more than basic clinical and programmatic health services. It includes social involvement and inclusion [39]. A number of factors affect an older person’s participation in health promotion activities including socioeconomic factors, personal beliefs and attitudes, informal and formal networks, encouragement by carers including health care providers, self motivation, and access to resources. Nurses can intervene in a variety of ways. People with I/DD are just like anyone else when it comes to good nutrition practices and regular exercise. For example, exercise is easier to maintain when there is a positive social component [40]. Nurses can encourage people to exercise with their friends or staff. Likewise, as with anyone, interventions must be individualized both according to the person’s preferences and health status. Individuals with I/DD and their support networks should receive ongoing health education in areas such as nutrition, exercise, safety practices, and oral hygiene; as well as the education on the avoidance of risky behaviors, such as substance abuse [20]. Again, promoting health across the life span is essential. Home or environmental modifications that take into account normal aging changes are beneficial on both a physical and emotional level. Simple modifications such as a grab bar by the toilet can make an important difference in a person’s life. Carers who work with individuals with I/DD are frequently aware of these types of interventions to overcome disability, but may need education regarding the specific effects of the aging process. Pragmatically, many of the staff who provide care for aging individuals with I/DD are often young and, although well-meaning, frequently have not been educated or trained and are uninformed or even misinformed as to the needs of aging individuals. Continuing and meaningful education for these carers is paramount to the well-being of the individual. Nurses can educate both staff and individuals by making the information meaningful and practical. Rosa remembered what the nurse had told her about an older person’s visual accommodation with regard to light and darkness. When she brought Louise to the matinee at the movies, on entering the darkened theater from the bright afternoon light, she waited for a few minutes after she herself adjusted to the change in lighting prior to walking down the

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aisle with Louise. This allowed Louise the extra time that she needed to be able to safely navigate to her seat.

Nurses, through their education and training, are also prepared to identify, intervene, and monitor both physical and psychosocial sequelae of chronic illness. Prompt attention by nurses is essential to prevent acute exacerbation of the underlying pathological process, prevent unnecessary deterioration of the older individual’s physical condition, and maintain optimum physical and mental function. Anticipatory guidance regarding life transitions and assistance in coping with losses (including palliative care) is an intervention with which nurses have skill and experience. Because of the settings in which most of these individuals live, nurses frequently are consultants with the majority of direct care being provided by families, personal care attendants, and direct care staff. Nurses have an enormous role to provide ongoing education of support networks (both formal and informal) and advocacy, particularly with generic health care systems. Health care case management for aging individuals with complex needs [20] is another appropriate and worthwhile role for nurses to assume. In a proactive role, nurses can help design residential and support services that support productive and positive aging and can plan and arrange for resources for monitoring and timely interventions [13]. Nurses also work with other disciplines in the recognition and nurturing of natural support networks [39]. Nurses also play a significant role with regard to more broad-based, system-focused interventions. Nurses, through their community liaisons, can increase awareness of aging and I/DD with the exchange of information and their experience [41,42], linkages to technical assistance and resources [9], and participation in generic community planning endeavors. Marta works in an agency that provides residential services to people with I/DD. She belongs to a professional gerontologic nursing special interest group, and has provided formal presentations to the group on issues of aging people with I/DD. Through many informal exchanges that occur in the group, Marta is now often regarded as ‘‘the expert’’ on aging people with I/DD. In return, she has learned and is able to access many of the elder community services for the people to whom she provides care.

Nurses can also participate in curriculum development in a number of ways including advocating for inclusion of I/DD in aging curriculum and inclusion of aging in I/DD curriculum for health care professionals, staff, and families, and for nurses at local universities or colleges of nursing. Fostering greater interagency cooperation is an endeavor for nursing in most states in which two distinct public agencies are each responsible for ‘‘their’’ specific population, disabilities or aging. The two service systems have differing terminology, definitions, organizational and funding qualifications, philosophies, and priorities of care [23,43]. Because of these differences, much discussion and understanding are needed to ‘‘bridge the

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gap’’ and to develop coalitions. Nurses, who are used to working with different disciplines and among various systems, can bring a holistic approach and understanding to interagency collaboration. This cooperation can develop into innovative cross-system partnerships [44]. Carlos, a nurse with the Alzheimer’s Association, and Harriet, a gerontologic clinical nurse specialist from the local university have developed a support group for families who have an adult child or sibling with Down syndrome and Alzheimer’s disease. Although the support group consists of a small number of families, a relationship between these two organizations has grown and there is a mutual referral system and exchange of knowledge. Carlos is frequently consulted by group homes in the region and Harriet regularly confers to provide additional support and consultation on interventions.

Lastly, nurses need to initiate and participate in research. In both the aging and developmental disabilities fields, much research is being conducted. Despite increasing numbers, the research-based body of knowledge about nursing needs of older persons is limited [7]. In their unique position, nurses have much to contribute to the field of research, whether it be assisting or supporting individuals who are being evaluated, interviewed, or involved in the consent process to designing evidence-based research projects. Professional organizations such as the International Association for the Scientific Study of Intellectual Disabilities, Nursing Division of the American Association on Intellectual Disabilities, or Developmental Disabilities Nurses Association can provide a venue for learning about or disseminating nursing and interdisciplinary research on aging. University-affiliated programs may provide opportunities for nurses to engage in collaborative research or to find sources of education about aging and developmental disabilities as the focus on aging programs grows.

Summary Many people with I/DD are growing older and in increasing numbers. Generally people with I/DD experience the same physical process of aging as do individuals without lifelong disabilities with the exception of those individuals who have Down syndrome who may show physical signs of aging as much as 20 years earlier. Individuals with I/DD may experience some unique concerns associated with aging with similar or even higher rates of age-related conditions than do older persons without lifelong disabilities [20]. Geriatric care principles will guide nurses caring for older people with I/DD, beginning with the assessment of functional status to determine interventions for developmental, aging, and health concerns and health promotion. Nursing interventions must be individualized both according to the person’s preferences and health status. A primary goal is to prevent

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acute exacerbation of any underlying pathological process, prevent unnecessary deterioration of the older individual’s physical condition, and maintain optimum physical and mental function. Nurses can provide individuals who are aging and their families or caregivers the needed anticipatory guidance about life transitions during the aging years, including palliative end-of-life care. This is an exciting and challenging time for nurses who care for aging people with I/DD. John F. Kennedy once said, ‘‘It is not enough for a great nation to have added new years to life. Our objective must be to add new life to those years.’’ As a profession, nurses have historically added years to life. The challenge of nursing is now to add quality life to those years for all older persons with I/DD.

References [1] Commission for the Social Development acting as the preparatory committee for the Second World Assembly on Ageing. International Strategy for Action on Ageing 2002. Report. Available at: www.un.org/esa/socdev/ageing. Accessed February 12, 2003. [2] Hogg J, Lucchino R, Wang KY, et al. Healthy ageing—adults with intellectual disabilities: aging and social policy. J Appl Res Intellect Disabil 2001;14(3):229–55. [3] Ansello EF, Janicki MP. The aging of nations: the impact on the community, the family, and the individual. In: Janicki MP, Ansello EF, editors. Community supports for aging adults with lifelong disabilities. Baltimore: Paul H. Brookes; 2000. p. 3–18. [4] International Association for the Scientific Study of Intellectual Disabilities. Aging and intellectual disabilities: fact sheet. Available at: www.iassid.org/pdf/aging-factsheet.pdf. Accessed June 4, 2002. [5] McConnell H. Down’s syndrome life expectancy doubles in US. Lancet 2002;359: 1019–25. [6] Janicki MP. Growing old with dignity: on quality of life for older persons with a lifelong disability. In: Schalock RL, editor. Quality of life: perspectives and issues (vol. 1). Washington, DC: American Association on Mental Retardation; 1990:115–25. [7] Hahn JE, Service KP. Aging issues. In: Nehring WM, Roth S, Natvig D, editors. Core curriculum for nurses in developmental disabilities and mental retardation. Washington, DC: American Association for Mental Retardation; in press. [8] Newbern VB, Hargett MV. A gerontological nursing issue: the aged developmentally disabled/mentally retarded. Holistic Nurse Practitioner 1992;7:70–7. [9] World Health Organization. Healthy ageing—adults with intellectual disabilities: summative report. J Appl Res Intellect Disabil 2001;14(3):256–75. [10] Hayden MF. Mortality among people with mental retardation living in the United States: research review and policy applications. Ment Retard 1998;36(5):345–59. [11] Eyman RK, Borthwick-Duffy SA. Trends in mortality rates and predictors of mortality. In: Seltzer MM, Krauss MW, Janicki MP, editors. Life course perspectives on adulthood and old age. Washington, DC: American Association on Mental Retardation; 1994. p. 93–105. [12] Edgerton RB. Quality of life issues: some people know how to be old. In: Seltzer MM, Krauss MW, Janicki MP, editors. Life course perspectives on adulthood and old age. Washington, DC: American Association on Mental Retardation; 1994. p. 53–66. [13] Janicki MP. Current tendency and future directions of community care for people with aged intellectual disabilities. Presented at the International Seminar on Welfare of Persons

K.P. Service, J.E. Hahn / Nurs Clin N Am 38 (2003) 291–312

[14]

[15]

[16] [17]

[18] [19]

[20] [21]

[22] [23]

[24]

[25] [26] [27]

[28]

[29]

[30]

[31] [32]

311

with Disabilities: aged persons with disability—community care and quality of life. Tokyo, Japan, March 11, 2002. Bigby C. Informal support networks of older adults. In: Janicki MP, Ansello EF, editors. Community supports for aging adults with lifelong disabilities. Baltimore: Paul H. Brookes; 2000. p. 55–70. Janicki MP. The preferable approach to care and quality of life for people with age and disabilities. Presented at the International Seminar on Welfare of Persons with Disabilities: aged persons with disability—community care and quality of life. Tokyo, Japan, March 11, 2002. Rice VH, Beck C, Stevenson JS. Ethical issues relative to autonomy and personal control in independent and cognitively impaired elders. Nurs Out 1997;45:27–34. Valimaki M, Leino-Kilpi H, Scott PA, et al. The role of the CNS in promoting elderly patients’ autonomy in long-term institutions: problems and implications for nursing practice and research. Clin Nurs Spec 2001;15(1):7–14. Lidz CW, Arnold RM. Institutional constraints on autonomy. Generations 1990; 14(Suppl):65–8. Hawkins BA, Eklund SJ. Aging-related changes in adults with mental retardation: final report. Bloomington: Indiana University, Institute for the Study of Developmental Disabilities; 1994. Evenhuis H, Henderson CM, Beange H, et al. Healthy ageing—adults with intellectual disabilities: physical health issues. J Appl Res Intellect Disabil 2001;14(3):175–94. Mughal DT. Health promotion and disease prevention. In: Janicki MP, Ansello EF, editors. Community supports for aging adults with lifelong disabilities. Baltimore: Paul H. Brookes; 2000. p. 193–227. Pope AM. Preventing secondary conditions. Ment Retard 1992;30:347–54. Henderson CM, Davidson PW. Comprehensive adult and geriatric assessment. In: Janicki MP, Ansello EF, editors. Community supports for aging adults with lifelong disabilities. Baltimore: Paul H. Brookes; 2000. p. 373–86. Janicki MP, Heller T, Seltzer G, et al. Practice guidelines for the clinical assessment and care management of Alzheimer and other dementia among adults with mental retardation. Washington, DC: American Association on Mental Retardation; 1995. Gallo JJ, Fulmer T, Paveza GJ, et al. Handbook of geriatric assessment. 3rd edition. Gaithersburg, MD: Aspen Publishers; 2000. Janicki MP. Toward a rational strategy for promoting health aging amongst people with intellectual disabilities. J Appl Res Intellect Disabil 2001;14(3):171–4. Report of the Surgeon General’s Conference on Health Disparities and Mental Retardation. Closing the gap: a national blueprint to improve the health of persons with mental retardation. Rockville, MD: Office of the Surgeon General, US Dept of Health and Human Services; December 2001. Davidson PW. Intellectual disabilities, aging, health and mental health. Presented at the International Seminar on Welfare of Persons with Disabilities: aged persons with disability—community care and quality of life. Tokyo, Japan, March 11, 2002. Engberg SJ, McDowell J. Comprehensive geriatric assessment. In: Stone JS, Wyman JF, Salisbury SA, editors. Clinical gerontological nursing: a guide to advanced practice. 2nd edition. Philadelphia: W.B. Saunders; 1999. p. 63–84. Acquilano J. A comprehensive geriatric assessment clinic for adults with intellectual disabilities. Presented at the 12th Annual Roundtable on Aging, Quality of Life, and Intellectual Disabilities of the International Association for the Scientific Study of Intellectual Disabilities. Koriyama, Fukishima, Japan, March 11, 2002. Service KP. Health assessment of the adult and the older adult with developmental disabilities [computer software]. Bloomington: Indiana University; in press. Seltzer GB, Luchterhand C. Health and well being of older persons with developmental disabilities: a clinical review. In: Seltzer MM, Krauss MW, Janicki MP, editors. Life course

312

[33] [34] [35] [36] [37] [38] [39]

[40] [41] [42]

[43]

[44]

K.P. Service, J.E. Hahn / Nurs Clin N Am 38 (2003) 291–312 perspectives on adulthood and old age. Washington, DC: American Association on Mental Retardation; 1994. p. 109–42. Martin BA. Primary care of adults with mental retardation living in the community. Am Fam Phys 1997;56(2):485–94. Maas ML, Buckwalter KC, Hardy MD, et al. Nursing care of older adults: diagnosis, outcomes, and interventions. St. Louis, MO: Mosby; 2001. Stone JTWyman JF, Salisbury SA, editors. Clinical gerontological nursing: a guide to advanced practice2nd edition. 1999. Fordyce M. Geriatric pearls. Philadelphia: F.A. Davis Co.; 1999. Resnick B. Geriatric health promotion. Available at: URL:http://nursing.medscape.com/ Medscape/. . ./pnt-mns0515.04.resn.htm. 2001. Accessed April 24, 2002. Walsh PN, Heller T, editors. Healthy aging—adults with intellectual disabilities: women’s health issues. Oxford, UK: Blackwell Science Publishers; 2002. Janicki MP, Ansello EA. Supports for community living: evolution of an aging with lifelong disabilities movement. In: Janicki MP, Ansello EF, editors. Community supports for aging adults with lifelong disabilities. Baltimore: Paul H. Brookes; 2000. p. 529–47. National Institutes on Aging. Exercise: a guide from the National Institute on Aging. Washington, DC: U.S. Government Printing Office, 2001. Publication #NIH01–4258. Hahn JE. Physical aspects of aging: implications for individuals with developmental disabilities. Chicago: Johnston R. Bowman Health Center for the Elderly; 1994. Service KP. Grow old along with me: issues of aging for people with developmental disabilities [educational module]. Northampton: Massachusetts Dept. of Mental Retardation; 1996. Hacker KS, McCallion P, Janicki MP. Outreach and assistance using area agencies on aging. In: Janicki MP, Ansello EF, editors. Community supports for aging adults with lifelong disabilities. Baltimore: Paul H. Brookes; 2000. p. 439–55. Rentz C, Hahn JE. Formation of a support group for family members with a son/daughter with Down syndrome and dementia. Presented at the 10th Annual Roundtable on Aging and Intellectual Disabilities of the International Association for the Scientific Study of Intellectual Disabilities. Geneva, Switzerland, April 20, 1999.