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Supporting People with Developmental Disabilities During the Aging Process
Supporting People with Developmental Disabilities During the Aging Process
Prepared and funded through collaboration between:
The Developmental Disabilities Council of Washington,
The University of Washington Center on Human Development and Disability, Northwest Center,
and Washington State Division of Developmental Disabilities
Prepared and funded through collaboration between:
The Developmental Disabilities Council of Washington,
The University of Washington Center on Human Development and Disability, Northwest Center,
and Washington State Division of Developmental Disabilities
Project StaffProject Staff Sharan Brown, JD, EdD
Principal Investigator
Kathleen Watson, PhD, RN Project Director/Trainer and Parent
Esther Moloney Project Assistant and Parent
Effects on Health During the Aging ProcessEffects on Health During the Aging Process
Normal aging process Lifestyle choices Genetic effects Environment
Aging With a Developmental DisabilityAging With a Developmental Disability
Person with a Disability
Normal effects of aging
Negative attitudes about people with disabilities
Lifestyleeffects
Limited access to quality
health careLack of knowledge
about aging for people with DD
Decreased Quality of Life
Inadequate fundingfor health care
Effects of the disability
and its treatment
Support During the Aging Process Support During the Aging Process Need to document current level of function.
Consider PCAD assessment Recognition of changes that need attention, especially
in non-verbal residents. e.g., dementia vs. more treatable problems
Agency plan for aging in place or alternative care. End-of-life planning. End-of-life care.
Vision Changes of Aging Vision Changes of Aging
Loss of acuity. Loss of accommodation (presbyopia). Decrease in light transmission. Changes in color perception (esp greens, blues, violets). Decrease in dark adaptation. Less able to adapt to glare. Decreased visual field.
Symptoms of a ProblemSymptoms of a Problem
Rubbing eyes. Squinting. Shutting or covering one eye. Tilting or thrusting head forward. Redness of eye or area around eyes.
Changes in FunctionChanges in Function
Stumbling. Hesitancy on a step or curb. Holding page or object closer to eyes. Refusing to participate in previous activities. Sitting close to TV.
Eye DiseasesEye Diseases Dry eyes - scratchy, irritated Blepharitis - red, itchy lids, person may rub too much. Age-related macular degeneration (ARMD). Cataracts - gradual clouding of lens. Diabetic retinopathy -damage to retina leading to blindness. Glaucoma – gradual tunnel vision, then blindness. Keratoconus – disease of eye surface (cornea). More
common in persons with Down Syndrome.
Types of Vision LossTypes of Vision Loss
Loss of central visionBlind spot for central fieldUnable to see faces, read. Loss of acuity or clarityCaused by macular disease
Types of Vision Loss (cont’d)Types of Vision Loss (cont’d)
Loss of peripheral visionFrom glaucoma or retinitis pigmentosaAffects safe mobility
Diffuse loss across visual fieldFrom diabetes, cataracts, keratoconus.Vision may fluctuate based on amount and direction of light.
Support Strategies for VisionSupport Strategies for Vision Get regular eye exams to check for asymptomatic
problems or unexplained symptoms. Get professional explanation of the problem. Modify the environment:
Use high contrast colors, non-glare lighting and surfaces, large print.Red, oranges, yellows better than blues, greens, violetsProvide increased lighting, use night lights.Organize belongings and keep locations consistent.Keep eyeglasses clean and prevent scratches.
Support Strategies for VisionSupport Strategies for Vision
Modify activities:Engage in daytime activities.Provide support for night-time activities.Allow time to adjust to change of light.Protect the “good” eye.
Hearing Changes of AgingHearing Changes of Aging Loss of auditory nerve cells and fibers Reduction of blood supply to auditory nerve
transmission area Thickening of eardrum Increased ear wax Presbycusis (loss for high pitched speech
sounds) Decreased tone discrimination, localization.
Types of Hearing LossTypes of Hearing Loss Conductive –
Problem with the physical conduct of sound through the ear structures. From earwax, infection, head trauma, damage to ear drum.
Sensori-neural – Problem with the conduct of the sound signal through the nerve to the brain or the processing of the information in the brain. From head trauma, drugs, diabetes, high blood pressure, heredity, kidney failure, coronary artery disease.
Possible SymptomsPossible Symptoms
Turning TV up loud. Speaking loudly. Inappropriate response to questions. Confusion in noisy situations. Isolating. Self injurious behaviors.
Support Strategies for HearingSupport Strategies for Hearing Get regular exams with a hearing professional to
check for wax, disease, gradual hearing losses. Hearing aid if indicated. Speak slower, with lower tones, clearly. Reduce background noise. When speaking, face person with light on your
face, not behind you. Keep hearing aid batteries fresh and aid clean.
Aging Effects on Mouth/TasteAging Effects on Mouth/Taste
Decrease in taste buds Recession of gums, Thinning of dental enamel
Abnormalities and Disease in MouthAbnormalities and Disease in Mouth
Decreased saliva from drugs or diseases. Dental caries. Root caries and abscesses. Periodontitis (gum disease). Sores, especially with dentures. Infection of mucus membranes. Cancers.
Support StrategiesMouth/TasteSupport StrategiesMouth/Taste Regular dental checkups and good oral hygiene,
even if no teeth. Floss or use proxi-brush. Consider battery-powered toothbrush. Alcohol-free mouth wash. Ask dentist about chlorhexidine mouthwash to
decrease bacteria and infections (prescription). Increase seasonings of food except salt.
Nose/SmellNose/Smell
Decrease in nerve fibers. Drying of mucous membranes in nose. Decreased sensitivity to odors.
Support Strategies forNose/SmellSupport Strategies forNose/Smell
Use of smoke detectors. Care if using propane stoves or water heaters. Discarding food after recommended time, check
for spoilage. Assist with awareness of body odor or over-use
of fragrances.
Skin/TouchSkin/Touch
Decrease sweat glands, subcutaneous fat, blood supply, elasticity, thickness of skin
Loss of pigment Decrease skin cell production and hair growth Changes in nail matrix Decreased sensation of touch, pain
Protecting SkinProtecting Skin Minimize use of soap and rinse well. Dry well and use moisturizers. Reposition frequently if mobility is limited. Check skin frequently for problems. Label hot and cold water and monitor water
temperatures. Increased risk with Down Syndrome, immobility, poor
nutrition. Use sun protection.
Aging of the GI SystemAging of the GI System
Decreasing total calorie needs every decade Less gastric juice may lead to increased indigestion
and ulcers Decreased saliva production may lead to more gum
disease Decreased smooth muscle tone, slower emptying
and digestion, less absorption of nutrients.
StrategiesStrategies
Promote elimination through fluids, fiber and physical activity.
Observe for constipation. Encourage slower eating, smaller, more frequent
meals. Avoid empty calories.
Urinary and Reproductive -GenitourinaryUrinary and Reproductive -Genitourinary
Bladder capacity and muscle tone decrease Kidneys become less efficient Enlargement of prostate common Relaxation of pelvic muscles Effects of decreased hormones
Support StrategiesSupport Strategies Observe for voiding patterns- increased or
decreased frequency, changes in continence. Observe for signs of infection- frequency,
urgency, accidents, discomfort, unusual odor, color or bleeding. There may be no fever or usual symptoms.
Regular screening tests and examinations. Good hygiene practices.
Heart and Blood VesselsHeart and Blood Vessels Decreased responsiveness to stress, leading to difficult
breathing, fatigue. Heart rate decreases due to slower contraction of muscle
fibers. Slow return to normal HR after elevation. Build up of calcifications and fat in arteries. Decreased elasticity of arteries leads to heart needing to
pump faster.
Protecting the HeartProtecting the Heart Encourage regular, moderate exercise Slow the pace of activities Watch for signs of decreased endurance - distress,
dizziness, confusion Change position slowly to prevent dizziness Reduce or stop cigarette smoking Healthy, low sodium diet, blood pressure checks. Decrease fat and trans fatty acids from diet. Learn signs and symptoms of a heart attack
Signs of a Heart AttackSigns of a Heart Attack Chest discomfort that lasts more than a few minutes or
goes away and comes back. Discomfort in other areas of the upper body, including
one or both arms, neck, jaw, back, stomach. Shortness of breath with or without chest discomfort. Other symptoms: nausea, lightheadedness, breaking
out in a cold sweat.
Lungs - Pulmonary SystemLungs - Pulmonary System
Lungs become less elastic, less able to take in oxygen
Breathing becomes less efficient, tolerance for exercise decreases
Decreased cough reflex. Decrease in cilia lining respiratory tract.
Protecting the LungsProtecting the Lungs Avoid smoking and second-hand smoke. Encourage deep breathing, physical activity. For persons with difficulty, slow pace of activity, allow
rest. Help alleviate stress. Proper diet and enough fluids. Immunizations for lung diseases (flu and pneumonia). Watch for signs of infection (increased coughing,
shortness of breath, colored sputum, increased confusion).
Protecting the Lungs (cont’d)Protecting the Lungs (cont’d)
Observe for signs of reflux:Heartburn, discomfort after meals or at night.Difficulty or painful swallow.Swallowing or excessive salivation when not eating.Coughing during night.
Nervous SystemNervous System
Loss of nerve cells and fibers with decreased conduction.
Decreased blood flow and oxygen to brain. Less REM stage of sleep. Altered pain response
Behavior and CognitiveBehavior and Cognitive
Intelligence, ability to learn, don’t necessarily change
More difficulty processing, organizing new information, recalling old information
Mental illness more prevalent in those with I/DD than in general population -depression most common.
Balance and Protective ResponsesBalance and Protective Responses
Sense of balance decreases due to loss of hair cells in middle ear.
Slow movement and less sensation lead to slower reaction time and decreased protective responses.
Age-related Musculo-skeletal ChangesAge-related Musculo-skeletal Changes
Decrease in muscle mass, strength and tone Decrease in joint mobility Increased porosity and fragility of bones Shortening of the spinal cord Increased likelihood of developing arthritis
Protecting theMusculo-skeletal SystemProtecting theMusculo-skeletal System
Encourage independent movement and self-care. Promote regular exercise. Implement safeguards to prevent falls. Promote safe use of mobility aids. Provide seating that is comfortable, firm, and not too deep. Ask health care provider about calcium and vitamin D
supplements, weight-bearing exercise, hormone replacement therapy.
Down SyndromeDown Syndrome
Longer lifespan than in the past More rapid aging at the cellular level-affects all
body systems Normal aging processes occur earlier than in
persons without Down syndrome Poor function of immune system
Down SyndromeDown Syndrome
Increased incidence of Alzheimer’s DementiaEarly onset type of ADBegins at earlier age than in general population.First noticed in daily function rather than memory loss.Progresses more rapidly.Affects about 25% of DS population.May have new onset of seizure disorder.
Down SyndromeDown Syndrome
Dry skin, more fungal infections of nails. Increased incidence lifelong risk of thyroid
dysfunction, usually hypothyroid. Earlier onset of visual and hearing problems of
aging. Increased incidence of sleep apnea. Overweight, especially those living with family.
Down SyndromeDown Syndrome
Joint problems of neck, knee, and hip and more likely to develop bunions.
Lower peak bone density and earlier risk for osteoporosis.
Many born with heart abnormalities. Increased risk of heart valve disease later in life. Decreased risk of atherosclerosis.
Down Syndrome Down Syndrome
Atlanto-axial Instability Spinal column instability-about 14%.May compress cord leading to neck pain, poor posture and gait, loss of upper body strength, abnormal neurological reflexes and changes in bowel and bladder emptying. Treatment controversial- ask health care provider.
Cerebral PalsyCerebral Palsy
Amount of decrease in life expectancy related to degree of severity of condition.
Abnormal muscle toneMuscular and joint painHip and back deformitiesWorsening bowel and bladder functionOrthopedic surgeries
Cerebral PalsyCerebral Palsy Abnormal movement of food through the throat
and stomach: Dysphagia (abnormal swallowing)Reflux of stomach acid into throat (GERD gastro-esophageal reflux disease)Delayed emptying of the stomach.All contribute to dental erosion, irritation of the esophagus, anemia, feeding problems, aspiration and pneumonia.
Cerebral PalsyCerebral Palsy
Abnormal movement of food and waste through the small and large intestine.
High incidence constipation, fecal impactionIncreased risk of death from bowel obstruction and intestinal perforation
Cerebral PalsyCerebral Palsy Feeding and digestion problems worsen. Joint pain and deterioration worsens. Breathing difficulties worsened by above
problems. Speaking more difficult. More susceptible to pressure sores due to
decreased mobility and thinning of skin. Nutritional deficits, limited movement and
medication usage increase risk of osteoporosis.
Prader-Willi SyndromePrader-Willi Syndrome
Hypogonadism- low hormonal levels. Problems related to uncontrolled obesity
CardiovascularDiabetes
Fragile X SyndromeFragile X Syndrome
Increased rates of mitral valve prolapse Musculo-skeletal disorders Early menopause Epilepsy Visual impairments. Earlier osteoporosis
Seizure DisordersSeizure Disorders
Change in seizure frequency, increase or decrease
Cumulative effects of long term use of seizure medications
Decreased bone density and increased trauma and falls due to seizures may lead to fractures
What Is Dementia?What Is Dementia?
Impaired brain function. Problems with memory and judgment. Often accompanied by confusion. Loss of ability to use information once known or
learned. Loss of basic abilities to think and understand.
Types of DementiaTypes of Dementia Alzheimer’s Dementia (AD or DAT).
Most common type.Gradual onset with stages of increasing severity.
Multiple Infarct Dementia (MID). Second most common type.Numerous tiny strokes-related to heart disease and high blood pressure.Can have sudden onset.
Other types.
Stages of Alzheimer’s DementiaStages of Alzheimer’s Dementia
Mild(early stage)
Confusion and memory loss.
Disoriented in space.
Problems with routine tasks.
Changes in personality and judgment.
Moderate(mid stage)
Difficulty with ADL’s
Anxiety, paranoia,agitation.
Sleep difficulty.
Difficulty recognizing familiar people.
Severe(late stage)
Loss of speech.
Loss of weight, appetite.
Loss of bladder/bowel control.
Total dependence on others.
What Else Could Be Causing These Behaviors?
What Else Could Be Causing These Behaviors? Medical problems- anemia, high blood pressure, brain
tumor. Medication side effects. Hearing and/or vision problems. Metabolic disturbances-diabetes or thyroid dysfunction. Alcohol or other substance abuse. Affective disorders-delirium or depression. Vitamin deficiencies.
Get Medical EvaluationGet Medical Evaluation
Rule out other possible causes for symptoms, behaviors.
Document a progressive decline from the person’s former or baseline status.
Possible or probable diagnosis by process of elimination and characteristic pattern of difficulties.
Documenting Baseline FunctionDocumenting Baseline Function
Use a standardized test. Give periodically beginning before you anticipate
problems. Include a video recording of the person’s
functional abilities. Compare change over time. The PCAD project (see sample handout).
Service Delivery ModelsService Delivery Models
Aging in place- adaptation as client needs, abilities and behaviors change.
Dementia-specific environment-specialized staff and setting.
Referral out, usually to long-term care facility or other generic community programs.
ReferencesReferences Parts of this presentation were adapted from: Factor, A.R.
(1997). Growing Older with a Developmental Disability: Physical and Cognitive Changes and Their Implications. Chicago: Rehabilitation Research and Training Center on Aging with Mental Retardation,, University of Illinois at Chicago.
Many other resources at this website:http://www.uic.edu/orgs/rrtcamr/
