Meeting the Needs of Aging Persons with Developmental Disabilities Cross Network Collaboration for Florida Aging in Individuals with a Developmental Disability Module 3 Based on ADRC training developed by: Kathleen M. Bishop, Ph.D., and Ron Lucchino, Ph.D. ADRC Training

Purpose of Module 3 Understand aging as a normal process Dispel myths about aging and developmental disabilities Recognize how aging may increase risk factors for disease Note – The summary emphasizes that all individuals experience the same influences as they age ADRC Training

Purpose of Module 3 Understand aging with developmental disabilities is the overlap of aging and disabilities Recognize how medications may affect adults with developmental disabilities Note – The objective is to increase the understanding of aging changes by the ADRC to better determine appropriate services for the caregiver and adult child with developmental disabilities ADRC Training

Meeting the Needs of Aging Persons with Developmental Disabilities Cross Network Collaboration for Florida What Is Aging? ADRC Training

Aging Factors Determined by interaction of three factors Life-long choices (diet, physical and mental exercise, self-esteem) Environment (physical, cultural and social) Genetics Successful aging from positive genes Negative aging from life-long or late-onset gene 1. Emphasize that the interaction of lifestyle, environment and genetics influence individual aging changes 2. Individuals can choose lifestyle and environment 3. Successful aging is considered “normal” aging ADRC Training ADRC Training 5

Aging Changes Age related: Common to everyone Interventions may slow decline Age associated: Not common to everyone Associated with disease, disorders, poor lifestyle choices, negative environment Controlled by individual choices Common means everyone will experience the same aging changes ADRC Training

Aging in Adults with Developmental Disabilities Interaction of pre-existing disability with factors of aging may result in: Increased risk factors with earlier onset of symptoms Increased risk for inappropriate medical treatment Increased vulnerability to a more restrictive environment Emphasize that adults with DD also experience common aging changes – but overlapping disabilities may modified how they are expressed ADRC Training

Aging in Adults with Developmental Disabilities Interaction of pre-existing disability with factors of aging may result in: Increased challenging behaviors due to communication difficulties Increased cost for treatment and interventions Increased staff/family frustration due to lack of communication and knowledge The key point is that services may be inappropriate due to mimicking or masking of diseases with overlapping changes ADRC Training

Meeting the Needs of Aging Persons with Developmental Disabilities Cross Network Collaboration for Florida Myths About Aging and Developmental Disability ADRC Training

Myths - Aging and Developmental Disability All individuals with developmental disabilities experience earlier onset of aging - False All adults with Down syndrome will exhibit the symptoms of Alzheimer’s disease - False Majority of adults with developmental disabilities live in supervised residential care facilities - False Emphasize these myths are common false perceptions about adults with DD ADRC Training

Consequences of Myths Affect quality of assessment and intervention Influence attitudes of staff, family, and providers Limit available choices and resources Affect quality of life Emphasize myths may result in inappropriate or no services ADRC Training

Myth 1 – Early Onset of Aging Persons with mild to moderate developmental disabilities and the general adult population experience: Same rate and age-related changes Similar longevity Individual aging influenced by genetics and lifestyle choices The main point is even though aging is an individual process everyone experiences the same aging changes and rate of change ADRC Training

Myth 1 – Early Onset of Aging (Continued) The older adult with Down syndrome or cerebral palsy also experiences: Same aging changes but earlier onset Same rate of change but compressed due to shorter longevity Emphasize the adult with Down syndrome or cerebral palsy experience the same rate and changes of aging - but earlier ADRC Training

Aging Curve Maximum vitality 100 vitality vitality % vitality 30 age General aging curve vitality vitality % vitality Aging DD curve 1.      The three lines in the graph illustrate the same changes and rates in the general population and the developmental disabilities population but earlier for Down syndrome and cerebral palsy adults 2.      The DD and the DS and CP lines have reduced vitality due to the overlay of disabilities Vitality describes the level of biological functioning – 100% is maximum functioning minimum vitality Down syndrome and Cerebral Palsy death 30 birth age conception ADRC Training

Myth 2 – Down Syndrome and Alzheimer’s Disease 1.      Emphasize that Down syndrome adults have early onset of Alzheimer’s disease - 70% by age 70 2. Emphasize that only 70% of adults will be diagnosed with Alzheimer’s disease - 30% will not be Janicki, M.P. & Dalton, A.J.  (2000).  Prevalence of dementia and impact on intellectual disability services.  Mental Retardation,38, 277‑289. ADRC Training

Myth 3 – Living Situation 10 % Note that the majority of DD adults are living with caregivers Full citation: Braddock, D., Felce, D., Emerson, E. & Stancliffe, R.J. (2001). Living circumstances of children and adults with mental retardation or developmental disabilities in the United States, Canada, England and Wales, and Australia. Mental Retardation and Developmental Disabilities Research Reviews, 7, 115-121. 90% Braddock, D., Felce, D., Emerson, E. & Stancliffe, R.J. (2001). Mental Retardation and Developmental Disabilities Research Reviews, 7, 115-121. ADRC Training

Meeting the Needs of Aging Persons with Developmental Disabilities Cross Network Collaboration for Florida Aging in Individuals with a Developmental Disability Emphasize that the next set of slides illustrate that adults with developmental disabilities experience the same aging as the general population ADRC Training

Differentiate “Normal” Aging Changes from Disease Determine types of interventions to best meet needs Determine appropriate services Develop activities appropriate for age- related cognitive/physical changes Maintain quality of health through increased awareness of changes The key point is no diseases are part of the aging process – diseases are the result of poor lifestyle or negative genes ADRC Training

Pre-existing Developmental Disability Aging Effects Likelihood of “diagnostic over-shadowing” Changes related to the disability result in inappropriate or no interventions Pre-existing cognitive challenges assumed to be symptoms of dementia Pre-existing disability may be misdiagnosed as disease 1.      Over-shadowing means overlay of the disabilities influences aging 2.      Call attention to the decline in vitality in slide 16 due to over-shadowing or overlaying ADRC Training

Risk from Inappropriate Intervention Reduced vitality and quality of life Modified aging process Increased misdiagnosis for other diseases (especially Alzheimer’s disease) Increased behavioral changes Note that if over-shadowing is not taken into account there may be risk of inappropriate services ADRC Training

Meeting the Needs of Aging Persons with Developmental Disabilities Cross Network Collaboration for Florida Age-Related Changes Everyone Experiences Mention that the next set of slides describe aging changes experienced by everyone ADRC Training

Sensory Changes Affect the Older Adult Reduced sensory acuity Increased masking of sensory impairments Reduced potential for quality of life and independence Increased social isolation Emphasize the next 3 slides describe reduced hearing and vision ADRC Training

How Is Hearing Affected by Aging? Increased loss of high frequency sounds (children and females voices in particular) Increased interference with hearing Background sounds interfere with communication Increased tinnitus – ringing in the ears Emphasize the next 3 slides describe reduced hearing and vision ADRC Training

How is Vision Affected by Aging? Increased glare (light reflection) sensitivity Increased difficulty adjusting to reduced lighting Increased difficulty with busy visual patterns Emphasize the next 3 slides describe reduced hearing and vision ADRC Training

Effects of Hearing and Visual Impairments on Older People Increased risk of falls Decreased social interaction Increased inappropriate behavior Decreased verbal communication Increased misdiagnosis of dementia Emphasize that the reduction in senses may be miss-diagnosed as a disease ADRC Training

Other Age-related Changes in Older People Reduced muscle mass by 15% Increased risk of falls Decreased ability for physical activities Decreased thyroid function Decreased body temperature Increased symptoms of acute dementia 1.      Emphasize muscle loss is normal, but lack of exercise can result in greater loss - increasing risk for falls 2.      Important to emphasize that although slowing of the thyroid is normal it can be miss-diagnosed as dementia ADRC Training

Other Age-related Changes in Older People Reproductive system (male) Enlarged prostate - reduced flow of urine and reduced ability to urinate Reproductive system (female) Decreased estrogen - menopause Increased bone loss Increased risk of depression Increased risk of heart disease Increased short-term memory impairment 1.      The key point is male adults with developmental disabilities may have enlarged prostate glands that interfere with urinating 2.      Point out that they may not complain of reduced ability to urinate due to communication problems - may result in behavior problems ADRC Training

Lesser Age-related Changes in Older People IQ remains the same or increases Personality remains the same Ability to learn new skills remains the same Long-term memory remains the same Little change in memory recall The key point is many functions of the nervous system are not affected by aging – noticeable changes may be a sign of a problem ADRC Training

Meeting the Needs of Aging Persons with Developmental Disabilities Cross Network Collaboration for Florida Early Aging Changes Experienced by Adults with Down Syndrome and Cerebral Palsy Point out that the next section describes early aging changes that are experienced later by the general population ADRC Training

Early Aging Down Syndrome and Cerebral Palsy Risk Factors Increased early symptoms Increased severity of symptoms Increased symptoms may be: Overlooked Assumed to be “normal” aging Misdiagnosed as dementia Note: An individual with Down syndrome must also have a diagnosis of retardation to be eligible for APD services. Note that Down syndrome adults can receive services if they have accompanying diagnosis of retardation ADRC Training

Early Aging in Down Syndrome Adults Shorter longevity Reduced cognitive and physical function Increased behavioral problems Changes may mimic or mask diseases or disorders Remind audience of DS adult line in slide 15 – early symptoms and fast decline ADRC Training

Early Aging in Down Syndrome Adults Slowing of the thyroid (hypothyroidism) increases risk for: Increased feelings of cold, tiredness, lethargy Decreased appetite Increased need for sleep Increased short-term memory impairment Increased confusion Note – hypothyroidism is a major problem in Down syndrome adults and is often overlooked ADRC Training

Early Age-related Changes in Cerebral Palsy Adults Decreased muscle strength after many years of no change Increased risk for urinary tract infections and incontinence Increased difficulty in swallowing Reduced stamina Increased fatigue Note - muscle loss in adults with cerebral palsy is very noticeable ADRC Training

Meeting the Needs of Aging Persons with Developmental Disabilities Cross Network Collaboration for Florida Adverse Drug Reaction Risk Factors in Adults with Developmental Disabilities Note - summarize this section by noting very little is know about medications and developmental disabilities ADRC Training

Medication Risk Factors in Older Adults Increased levels of medications in the blood for longer times Increased use of multiple medications Little understanding of medication interaction Increased adverse drug reactions (ADRs) masking or mimicking dementia Note - in all older adults there is an increased risk for adverse drug reactions – unwanted response to medication ADRC Training

Medication Risk Factors in Older Adults Increased dosages of medications Few studies of medication use in older adults with developmental disabilities Few health care providers trained to identify adverse effects of medications Note - health care practitioners are not prepared to recognized adverse drug reactions in adults with developmental disabilities - often attribute them to diseases ADRC Training

Additional Risk Factors Affecting Drug Reactions in Older Adults Population variations due to gender, race, ethnicity Increased side effects from anti-depressants Prozac & Paxil are twice that in Caucasions than in Hispanics Increased Tardive Dyskinesia from anti- psychotic drugs in African-Americans Increased response to anti-psychotic drugs by Asians Little knowledge of how medications affect females Note – in addition to aging, gender, ethnicity and race also influence medications in all individuals ADRC Training

Additional Risk Factors Affecting Drug Reactions in Older Adults Individual variations in response Age-related differences Disability specific variations in response Older adults with developmental disabilities will “age into” medications with long-term use Note - the concept of “aging into” medications means that long term use of medication may begin to have adverse drug reactions with aging when there was no prior evidence of reactions ADRC Training

Adverse Drug Reactions Affect Body Function Examples of biological changes Increased/decreased blood pressure Increased urine retention or incontinence Examples of behavioral changes Increased risk for depression Increased risk for paranoia Note - adverse drug reactions are listed in four categories – biological and behavior changes are two of the four – see Manual Module 3 for additional information ADRC Training

Adverse Drug Reactions Affect Body Function Examples of neurological changes Increased change in sleep patterns Increased risk for seizures Examples of decline in muscle coordination Increased risk for muscle tremors Decreased coordinated muscle movement Note- neurological and muscle coordination are the other two – see Manual Module 3 for additional information ADRC Training

Adverse Drug Reactions That Mimic Dementia Increased agitation Increased anxiety Increased behavioral changes Increased decline in cognitive functioning It is important to emphasize that adverse drug reactions mimic or mask diseases, including dementia. ADRC Training

Adverse Drug Reactions That Mimic Dementia Decreased communication skills Increased disorientation to person, place or time Increased loss of interest in normal activities Note- emphasize that many adverse drug reactions may not be recognized by the health care profession resulting in miss-diagnoses and inappropriate services ADRC Training

Adverse Drug Reactions That Mimic Dementia Increased risk for confusion Increased risk for delusions Increased risk for depression, sadness Increased risk for unexplained excitability Increased risk for restlessness, wandering Note- emphasize that these changes may be either adverse drug reactions, dementia or both ADRC Training

Summary of Module 3 Myths may affect how services are applied Aging is experienced by everyone Aging is an individual process Influenced by genetics and lifestyle Disabilities over-lay influences on aging Summarize Module 3 by noting: 1. There are myths that interfere with the types of services 2. Aging is experienced by everyone ADRC Training

Summary of Module 3 Increased risk of mimicking or masking diseases or disorders from early aging in adults with Down syndrome and cerebral palsy Increased risk for adverse drug reactions that mimic or mask diseases Summarize Module 3 by noting: 1. An increased risk of misdiagnosis of dementia in Down syndrome 2. Medications may mimic or mask diseases and disorders ADRC Training

Group Discussion Questions ADRC Training