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Prepared and funded through collaboration between: The Developmental Disabilities Council of Washington, The University of Washington Center on Human.

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Presentation on theme: "Prepared and funded through collaboration between: The Developmental Disabilities Council of Washington, The University of Washington Center on Human."— Presentation transcript:

1 Supporting People with Developmental Disabilities During the Aging Process

2 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

3 Project Staff Sharan Brown, JD, EdD Principal Investigator
Kathleen Watson, PhD, RN Project Director/Trainer and Parent Esther Moloney Project Assistant and Parent

4 Effects on Health During the Aging Process
Normal aging process Lifestyle choices Genetic effects Environment Genetic probably has most effect All three are interactive We can’t change genetic, but we can modify the environment and lifestyle behaviors

5 Aging With a Developmental Disability
Effects of the disability and its treatment Normal effects of aging Limited access to quality health care Lack of knowledge about aging for people with DD Inadequate funding for health care Person with a Disability Lifestyle effects Negative attitudes about people with disabilities Decreased Quality of Life

6 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.

7 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.

8 Symptoms of a Problem Rubbing eyes. Squinting.
Shutting or covering one eye. Tilting or thrusting head forward. Redness of eye or area around eyes.

9 Changes 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.

10 Eye 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. Dry eyes and blepharitis less serious, but rubbing of eyes can lead to keratoconus ARMD-leads to central blind spot. Cataracts lead to opaque lens, can be corrected with surgery Diabetic retinopathy leads to vision loss up to total blindness Glaucoma, asymptomatic, may lead to gradual loss of peripheral vision and total blindness Keratoconus disease of cornea; any age.

11 Types of Vision Loss Loss of central vision
Blind spot for central field Unable to see faces, read. Loss of acuity or clarity Caused by macular disease Remaining peripheral vision allows safety in moving around familiar environment.

12 Types of Vision Loss (cont’d)
Loss of peripheral vision From glaucoma or retinitis pigmentosa Affects safe mobility Diffuse loss across visual field From diabetes, cataracts, keratoconus. Vision may fluctuate based on amount and direction of light.

13 Support 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, violets Provide increased lighting, use night lights. Organize belongings and keep locations consistent. Keep eyeglasses clean and prevent scratches.

14 Support 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.

15 Hearing 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. Reduce background noise and commothion Hearing exams. Speak lower tones, face person. Hearing loss leads to social isolation and emotional concerns

16 Types of Hearing Loss Conductive – Sensori-neural –
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.

17 Possible Symptoms Turning TV up loud. Speaking loudly.
Inappropriate response to questions. Confusion in noisy situations. Isolating. Self injurious behaviors.

18 Support 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.

19 Aging Effects on Mouth/Taste
Decrease in taste buds Recession of gums, Thinning of dental enamel Altered taste-may over season food or lose appetite-watch for increased use of salt. Mouth may be more susceptible to injury and dental problems. Maybe more nosebleeds. Dentures may irritate or n o longer fit. May not be able to smell – safety, food odors, body odor, fragrance use, smoke, gas. Need dental and mouth exams Attention to safety and hygiene issues

20 Abnormalities 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.

21 Support Strategies Mouth/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.

22 Nose/Smell Decrease in nerve fibers.
Drying of mucous membranes in nose. Decreased sensitivity to odors.

23 Support Strategies for Nose/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.

24 Skin/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 Issues of warmth, overheating , drying of skin (hygiene), fluid intake, sun damage, burns, easy damage and poor healing.

25 Protecting 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.

26 Aging 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.

27 Strategies Promote elimination through fluids, fiber and physical activity. Observe for constipation. Encourage slower eating, smaller, more frequent meals. Avoid empty calories.

28 Urinary 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 Incontinence of urine Medications more difficult to clear.

29 Support 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.

30 Heart 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.

31 Protecting 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

32 Signs 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. Can feel like uncomfortable pressure, squeezing, fullness, or pain. Women often have discomfort in places other than the chest area.

33 Lungs - 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.

34 Protecting 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). Flu shots

35 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.

36 Nervous 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

37 Behavior 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.

38 Balance 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.

39 Age-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

40 Protecting the Musculo-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.

41 Down 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 Great increases in early childhood survival related to heart surgery, general health management. Deinstitutionalization led to fewer communicable diseases Extra chromosome 21 means extra proteins it codes for; one is superoxide dismutase—leads to increased production of reactive oxidative species (free radicals), defective repair of oxidative damage to DNA; increased rate of programmed cell death (apoptosis); increased CV disease, leukemia, immune deficiency, increased frequency of osteoporosis, especially in males; increased prevalence of thyroid disease. Give anti-oxidants to decrease free radicals (eg melatonin)

42 Down Syndrome Increased incidence of Alzheimer’s Dementia
Early onset type of AD Begins 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. Early onset usually begins about age 50 –age 40 for DS Disease course usually lasts up to 20 years—8 for DS

43 Down 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. Eyes: dry eyes, blepharitis, kerataconus Greater risk for eye related disorders and age related eye diseases occur earlier for them.

44 Down 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.

45 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.

46 Cerebral Palsy Amount of decrease in life expectancy related to degree of severity of condition. Abnormal muscle tone Muscular and joint pain Hip and back deformities Worsening bowel and bladder function Orthopedic surgeries

47 Cerebral 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. Normal function requires directional, coordinated muscular movements.

48 Cerebral Palsy Abnormal movement of food and waste through the small and large intestine. High incidence constipation, fecal impaction Increased risk of death from bowel obstruction and intestinal perforation

49 Cerebral 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.

50 Prader-Willi Syndrome
Hypogonadism- low hormonal levels. Problems related to uncontrolled obesity Cardiovascular Diabetes Osteoporosis Obstructive sleep apnea

51 Fragile X Syndrome Increased rates of mitral valve prolapse
Musculo-skeletal disorders Early menopause Epilepsy Visual impairments. Earlier osteoporosis

52 Seizure 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 Seizure free for one year or more should be weaned off drugs in case there is no more seizure problem. Some may require increase or change in drugs to respond to change in seizure type or frequency.

53 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.

54 Types 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.

55 Stages 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.

56 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.

57 Get 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.

58 Documenting 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).

59 Service 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.

60 References 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:


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