Aging & Quality of Life for People with Developmental Disabilities INTRODUCTION Traditionally, people with developmental disabilities have been perceived as “perpetual children,” and often have not been expected to live past young adulthood. But today, with improvements in medical care and life supports, many people with developmental disabilities have life expectancies similar to those of people without disabilities. In 1929, the life expectancy for a person with Down’s Syndrome was 9 years. In 1986 it was 47 years. In 1996 it was 60-64 years. (Herr & Weber, 1999) For this reason, it is becoming important for supporters of people with disabilities to be even more aware of the aging process in general as well as special considerations for the people they support. This course will focus on the characteristics of successful aging and how a supporter can enhance these variables during the aging process of the person he or she supports. WHAT IS AGING? Liz Ward (http://health.howstuffworks.com/life-stages/aging/aging-causes2.htm) defines aging as, “the inevitable decline in the body’s resiliency.” Some biological changes affect nearly everyone, such as diminished eyesight. Other biological changes such as disease can be influenced by genes and environmental factors. But aging is not just about biological changes. Late life is a time of transition for most people; a time of changes in residence, evolution of family structure, and loss of health, status, and treasured relationships. There are three types of aging: Chronological aging (a person’s actual number of years of life) Biological aging (gradual loss of physiological reserves) Social aging (fulfillment of social/cultural expectations) There are 4 stages of aging through the lifespan: 1. Infancy/childhood (dependence, socialization, immaturity) 2. Teenagerhood/young adulthood (independence, responsibility, earning) 3. Middle age (personal fulfillment) 4. Old age (dependence, decrepitude, death) SUCCESSFUL AGING “Successful aging” is a term used by professionals to reflect the level of satisfaction a person has with his or her life as he or she ages. According to Shalock, DeVries ,and Lebsack (1999), the principles of successful aging include recognition that: -There is much capacity remaining in older adults. -Knowledge-based interventions (learning, memory, or problem –solving activities) can affect age-related decline in cognitive mechanisms. -Optimal aging occurs under development-enhancing and age-friendly environmental conditions. -Functioning is enhanced through factors such as active lifestyle, quality social supports, improved socioeconomic status, and minimal medications. AGING FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES The aging process of people with developmental disabilities can be different from the aging process of an adult without disabilities in that people with disabilities are already subject to the negative stereotypes and direct violations of basic human rights that typically-developing people may only begin to experience with age. Negative stereotypes of older adults (“ageism”) can result in neglect, avoidance, rejection, discrimination, and denial of access to services. Violations of human rights for people with disabilities include fewer opportunities for decision-making, dependence on caregivers’ decisions and control, and little or no opportunity for self-determination. Shalock, DeVries, and Lebsack (1999) list the basic human rights for all older Americans as: -freedom, independence, choice -adequate retirement income to provide an adequate standard of living -opportunities for employment free from discrimination -opportunities to participate in a wide range of meaningful activities -suitable housing -necessary level of physical and mental health services -ready access to effective social services -appropriate institutional care when required -a life and death with dignity Although these are considered “basic rights” for older Americans, many people with disabilities spend their entire lives fighting to achieve these rights, and some are never successful. Because of this, many of the characteristics of the aging process are magnified for people with developmental disabilities, and they may require more extensive supports than what would be necessary for a typically-developing older adult. SUPPORTING PEOPLE THROUGH THE AGING PROCESS Risk factors for age-related decline in function can be extrinsic or intrinsic: *Extrinsic = within the environment ~stairs, slippery floors, dark rooms *Intrinsic = within the person ~poor balance, cognitive impairment, depression Questions for supporters to ask: *Can the decline in function be reduced? ~Example: balance and strength deficiencies can be reduced through exercise *Can the decline in function be accommodated? ~Example: nearsightedness can be corrected with glasses or bifocals; diminished hearing can be improved with a hearing aid PHYSICAL AGING Vision Changes *Decreased peripheral vision *Decreased night vision *Decreased capacity to distinguish color *Reduced lubrication (dry, itchy eyes) Supporting Vision Changes *Approach people face-on, not from the side *Use more lighting *Assist in choosing clothes if necessary *Use natural tear products Hearing Changes *Increased sensitivity to loud noises *Decreased ability to locate sounds *Prone to wax buildup that can affect hearing Supporting Hearing Changes *Reduce extra noise when trying to have a conversation *Place yourself so the person can see you *Increased volume is not helpful *Make sure you have the person’s attention before speaking *Ask a doctor to remove wax if needed *Arrange for hearing assessment and provide support to use a hearing aid if needed Tooth and Gum Changes *Aging produces a drier mouth and receding gums, both of which promote tooth decay *Dry mouth makes it harder to speak and swallow *Teeth become more brittle and prone to breaking Supporting Tooth and Gum Changes *Offer fluids frequently *Help the person practice good dental hygiene *Arrange for regular dental check-ups Reduced Smell and Taste *Decreased number of taste buds and saliva *Decreased sensitivity to smell Supporting Changes in Smell and Taste *Provide smaller attractive meals *Being present during food preparation may stimulate the person’s appetite *Person may be at risk of eating spoiled food Skin Changes *Decreased skin moisture & elasticity *Prone to sunburn *Skin tears easily—is sensitive to shear *Decreased subcutaneous fat *Decreased sweat glands=less ability to regulate body temperature *Decreased tactile sensation Supporting Skin Changes *Use moisturizers *Keep nails short *Pat gently dry after bathing *Be careful; the person may bruise easily *The bottom of the person’s feet may be sore *Be aware of risk of heat stroke *Use sunblock, hats, long sleeves *Be careful with items such as hot water bottles *Watch for skin breakdown Metabolic System Changes *Decreased metabolic rate *Weight gain or loss of appetite *Decreased thyroid gland functioning Supporting Metabolic Changes *Person may feel cold; provide necessary clothing or blankets so the person feels warm, but avoid overheating. *Weight loss or gain of 10 pounds in 6 months warrants a medical check. Digestive Changes *Swallowing impairments can cause aspiration *In general, older people need fewer calories *Sense of thirst decreases *Kidneys may be filtering more medications Supporting Digestive Changes *Video swallow study to evaluate food and liquid consistency if a person coughs during or after a meal *Provide foods rich in nutrition but lower in calories unless the person is underweight *Offer extra fluids Elimination Changes *Bladder atrophy- person cannot hold bladder for long periods *Incontinence may occur due to lack of sphincter control *Men can develop prostate problems causing frequent need to urinate *Constipation can become a concern because of slower metabolism and some medications Supporting Elimination Changes *Maintain routines *Plan ahead- know where restrooms are *Decrease caffeine intake *Eat lots of fiber and exercise *Put bowel elimination protocols in place if necessary—probably after 2 days without a bowel movement, depending on the person’s normal pattern *Provide appropriate supplies and emotional support Respiratory Changes *Decreased volume and expansion of lungs *Increased susceptibility to lung infections if the person is inactive *Decreased ability to replace fluids lost by breathing Supporting Respiratory Changes *Plan activities of shorter duration *Plan more rest periods if needed *Assure adequate fluid intake and seek medical help if you think the person could be dehydrated Cardiovascular Changes *Heart works harder to maintain oxygen levels in the body *Plaque buildup in arteries increases heart attack/stroke risk, causes increased blood pressure *Congestive heart failure leads to edema Supporting Cardiovascular Changes *Plan for more rest during a busy day *Monitor blood pressure *Re-position person frequently if the person is unable to move on his/her own so that fluids don’t build up *Physical therapy may be needed Bone and Joint Changes *Decreased height due to bone changes *More brittle bones- increased fracture risk *Changes in absorption of calcium *Pain from previous falls or broken bones *Joints are less lubricated, tendons & muscles lose strength and flexibility *Arthritis Supporting Bone and Joint Changes *Do light exercise including weight bearing if possible *Take precautions to prevent falls *May need medications, calcium, and vitamin D supplements as well as a balanced diet *Monitor and treat pain appropriately *Person may need to do things more slowly Nervous System Changes *20% less oxygen to the brain affects balance and coordination *Older people are more prone to falls [hyperlink to “falls”] Supporting Nervous System Changes *Use a rocking chair to maintain balance *Use walkers and canes *Exercise leg muscles to maintain strength *Have the person get up slowly so he/she does not become dizzy Sleep Changes *Older people need the same amount of sleep as they did when they were younger, but -it takes longer to fall asleep -more time is spent in “light sleep” so it is harder to stay asleep -person gets sleepy earlier and wakes up earlier Supporting Sleep Changes *Discourage long naps and caffeinated products late in the day *Encourage regular patterns and rituals at bedtime *Consider other issues that can affect sleep: sleep apnea, reflux, menopause Changes in Ability to Cope with Physical Stress *Decreased ability to handle extremes in humidity and temperature *Decreased reserves for recovering from injury and illness *Decreased physical strength and endurance Supporting Exercise to Cope with Physical Stress *Watch for symptoms of heat stroke: difficulty breathing, hot/red/dry skin, leg cramps, headache, nausea, and exhaustion *Strength, flexibility, and endurance exercises can build muscle tissue, maintain bone density, and help prevent depression *Work with physician and physical therapist to develop exercise programs Changes in Cognitive Ability *More concrete learning *Decrease in complex vocabulary comprehension *Less efficient memory Supporting Changes in Cognitive Ability *Use cues to help retrieve information stored in memory *Try giving a choice of answers rather than asking the person to retrieve the answer directly from his/her memory *Use actual names instead of pronouns *Be patient; the person may need more time to form sentences Changes in Mood and Mental Health *Older people are most at risk for depression and anxiety Supporting Mental Health [hyperlink] *Watch for symptoms of depression and anxiety such as withdrawal, changes in sleep patterns, changes in appetite, irritability, sadness *Support the person in seeking help from a mental health professional Appearance of Dementia/Alzheimer’s Disease *Dementia is over-diagnosed in individuals with intellectual disabilities *Mild to moderate Alzheimer’s Disease = severely impaired mental functioning affecting memory, intellect, and orientation for time and place; can include delusions, hallucinations, and lack of impulse control *Severe Alzheimer’s Disease=failure to recognize faces, sleep disturbances, limited speech abilities, incontinence, gradual loss of physical abilities, seizures, weight loss, skin infections Supporting Individuals with Dementia/Alz. *Memory games and puzzles may help prevent dementia *Recognize early symptoms such as forgetfulness, confusion, and problems with speech and judgment, and changes in mood *Use assessment and screening [hyperlink] *Take into account other risk factors (age, Down Syndrome, family history of Alzheimer’s Disease) *Rule out treatable dementias [hyperlink] *Encourage the person to continue to do things as independently as possible AGING & QUALITY OF LIFE Successful aging encompasses many variables which are of varying importance to each person, but some commonly included indicators of successful aging are: Physical well-being Emotional well-being Material well-being Interpersonal relationships Personal development Self-determination Social inclusion Rights We will explore each of these areas in detail, as each is vital in maintaining quality of life during the aging process. PHYSICAL WELL-BEING Health *Physical health is usually defined as the absence of disease, but it is all about the person’s perception of his or her health status. *Physical health is influenced by genetics (heart disease and cancer are thought to be somewhat linked to genes) as well as environment (smoking and other lifestyle choices can make one more susceptible to disease). Health care *The availability of good health care services is important to quality of life. For people with developmental disabilities who do not have good verbal communication skills, it is vital that they have supporters who can advocate for them and help build a relationship with doctors and other health care staff. Medications *Fewer medications, in general, lead to greater quality of life. Energy *Energy levels can be affected by diet and exercise. Exercise can be continued throughout the life span and is beneficial not only to energy levels but also to general physical health, strength, and mood. EMOTIONAL WELL-BEING Freedom from fear, harm, injury, or neglect Spirituality *The option and opportunity to believe as one wishes is an important factor of quality of life. Older adults with developmental disabilities must be supported to attend religious services, be involved in whatever spiritual activities they choose, and pursue their personal belief system freely, without judgment. Mental health *Old age is a stressful time for most people. Older adults have to deal with a variety of losses including the loss of their physical and cognitive abilities, physical health, social status, and self-esteem. Factors that enable a person to cope with stressors (interpersonal relationships, material items, cultural rituals) are often lacking or absent for people with developmental disabilities, so they are at higher risk for experiencing stress-related mental illnesses such as depression and anxiety. *To increase a person with disabilities’ coping abilities, providers should offer a fulfilling life with opportunities for personal growth, lower stress levels if possible, and adequate social support. *It is also important for people with disabilities to have access to quality mental health services. Special considerations for people with developmental disabilities include: (Moss, 1999) ~Recognition that it is sometimes difficult to notice or diagnose mental illness in a person with developmental disabilities. Mental illness is traditionally diagnosed through patient reports, so that presents a significant obstacle if the person has fewer verbal communication abilities. ~The most common mental illnesses of old age-- depression and anxiety-- do not usually have noticeable outward symptoms, or the symptoms may present as physical illness. ~When mental illness is noticed by others, it is usually a result of the person’s lack of fulfillment of social roles. People with developmental disabilities don’t have as many formal role expectations, so it is less common for outsiders to notice the symptoms. Self-concept *People with developmental disabilities are already devalued by society, so adding the negative stereotypes associated with aging can further depress a person’s self-concept. *One way for supporters to combat this is to help the person fill as many valued roles as possible (employee, volunteer, friend). MATERIAL WELL-BEING Home *For individuals who have lived their entire lives with little support, perhaps with parents who are getting older as well, the increased needs caused by aging may require a change in living situation. *If parents are the sole supporters of the person, planning should take place for where the person will live and who will support them when the parents are no longer available to do so. It is crucial that the person select the residence and supporters, choose personal belongings and furnishings to fill the space, and participate in events such as housewarming parties in order to ease the transition. Money *Retirement not only removes a person from one valued role (employee), which can affect self-esteem, but it also affects income. Less income equals less money to spend doing fulfilling activities and lower socioeconomic status, which can in turn further affect self-esteem and even physical and mental health. Clothing/Personal Items INTERPERSONAL RELATIONSHIPS Family Friends Neighbors and co-habitants Caregivers *For some older people with developmental disabilities, caregivers and other paid supporters might comprise their only relationships. It is very important that we support them in creating and maintaining friendships in other areas of their lives. PERSONAL DEVELOPMENT Education and Activities *Meaningful opportunities to develop new skills leads to more productivity and higher quality of life. Arts and crafts and Bingo are popular activities for older adults, and activities such as Bible study or book clubs can add a social component to the person’s life as well. Intellectual stimulation * Playing memory games can reduce the effects of dementia and Alzheimer’s for some people. Helping others *People need to feel needed. Volunteering is a common pastime of retired people. Help the person volunteer doing something they enjoy, such as dog walking for the humane society or helping with children’s programs at the library. * Supporting people to complete household chores is a great way to help them maintain physical and intellectual health and to keep them involved in the maintenance of their home. SELF-DETERMINATION Choice *A person should have freedom to make decisions about all aspects of everyday life, including how he or she spends time, what clothing he or she wears, and what he or she eats and drinks. Personal opinions *A person should have opportunities to express personal opinions and values. Goals *A person should have support to achieve his or her goals in both the short- and long-] term. SOCIAL INCLUSION Acceptance by co-habitants and neighbors Acceptance by caregivers Participation in community activities RIGHTS Privacy Ownership of possessions Informed consent Safety AGING CAREGIVERS Older adults with developmental disabilities who live at home with their parents have the additional obstacle of declining support abilities of their caregivers at precisely the time when their support needs are increasing. Many of these parents did not plan well for the future because they expected to outlive their children. Aging parents of adults with disabilities may hesitate to ask for help because: They are unaware assistance is available or don’t know how to access it They recall earlier disrespectful interactions with professionals They may fear that their son/daughter will be removed from the home They may believe that professionals do not know what is best for their family They may have a sense of pride in their ability to care for their son/daughter and are unwilling to face the consequences of their own aging process But aging parents of people with developmental disabilities need to take action to plan for the future of their adult child. They will need to access supports for: Permanency planning This is important because some parents assume that a sibling will take care of the person after they are gone, but they never officially plan for the transition. Planning for relocation, if necessary Planning for availability of health care and new supporters Grief counseling CONCLUSION/SEVEN MARKERS OF SUCCESSFUL AGING Baltes and Baltes (1990) compiled this list of the seven markers of successful aging: 1. Long life 2. Positive mental health states 3. Good physical health 4. Sustained cognitive effectiveness 5. Personal control over one’s life and destiny 6. Sustained social competence and productive involvement 7. High perceived satisfaction with life As you can see, aging is not just about physical health. As supporters of people with developmental disabilities, our goal should be to help the individuals we support maintain all of these attributes as they age. Supporters have the power to help the people they support experience successful aging and live their lives to the fullest. MORE INFORMATION: INFORMED CONSENT Older people with intellectual disabilities are at risk for both under-treatment of medical problems and overly aggressive treatment due to their limited ability to express choices. For this reason, older adults with intellectual disabilities need extra support with making choices about medical care, especially if their parents or siblings are deceased or incapacitated. Supporters of people with intellectual disabilities often ask, “If choice and self-determination are so important for the person I support, why is he or she not permitted to make decisions about his or her own medical care?” The answer to this is that the law requires that a person give informed consent for most medical procedures, and some people with intellectual disabilities do not have the attributes that informed consent requires. Informed consent requires competency, knowledge, and voluntariness. *Competency ~The person must have the ability to make decisions. ~ Competency could be compromised for people with disabilities due to: -Impairments in basic knowledge -Limited communication skills -Self-denial of disabilities/unwillingness to seek assistance -Learned inability to make decisions (learned helplessness) -Biological factors (dementia, stroke, depression) *Knowledge ~The person must receive all relevant information and be able to process it *Voluntariness ~The person must have the freedom to accept or reject treatments. People with intellectual disabilities are also subject to parens patriae laws. *These laws protect the well-being of people who cannot protect themselves from harm (also known as involuntary guardianship). *Many medical providers honor the concept of “beneficence:” refusing to nihilistically neglect or abandon people with disabilities to theoretical but unreal autonomy. *The power to intervene using these laws is very limited—the interventions must be least restrictive and with legitimate purpose. *Service providers are obliged to manipulate barriers whenever possible to help a person make decisions. If it is decided that a person is not able to give informed consent, other options are available: *Advance directives ~Living wills or declarations *Proxy/surrogate decision-making ~proxy can be chosen by the person while he/she is still competent ~proxy can be chosen by the courts (guardianship) -this is often the case for people with intellectual disabilities who rely heavily on paid supports and have no available family members to act as surrogates - this should only be used as a last resort as it entails extensive deprivation of basic rights and involves extensive time, financial, and emotional costs -proxy can either make decisions based on what they feel is in the person’s best interest or by “substituted judgment,” which is where the proxy makes decisions that he/she believes the person would have made for him/herself FALLS According to information from the U.S. Department of Health and Human Services, “falls are the leading cause of injury deaths among individuals who are 65 years of age or older.” Preventing falls can keep health care costs down and improve quality of life for the individuals we support. Risk factors for falls include: *Muscle Weakness *History of falls *Gait or Balance Deficit/Use of Assistive Devices *Medical Issues -Arthritis -Arrhythmia -Cardiopulmonary Disease -Cognitive Impairment -Depression -Dizziness -Foot Disorders -Hypotension -Impaired Activities of Daily Living -Metabolic Disorders -Neuromotor Impairment -Peripheral Neuropathy -Polypharmacy -Reduced hip, knee, and ankle strength -Syncope -Vertigo -Vestibular Impairment -Visual Deficit -Vitamin B12 Deficiency *Medication Use *Functional Impairment *Cognitive Impairment *Environmental Hazards Supports that can reduce the occurrence or severity of falls: *Supervised exercise -Tai chi -Strength training with free weights or machines -Platform balance -Endurance and flexibility exercises *Support with Activities of Daily Living *Disease management and medication monitoring *Home modifications/assistive devices -Pill Box -Bath Mat -Bath Stool -Shower Bench -Bath Seat -Tub Rail -Hand Held Shower -Raised Toilet Seat -Personal Emergency Response System -Carpet Tape