Supporting People with Developmental Disabilities During the

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Supporting People with Developmental Disabilities
During the Aging Process
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Prepared and funded through collaboration
betweenThe Developmental Disabilities Council
of Washington,The University of Washington
Center on Human Development and Disability,
Northwest Center, and Washington State
Division of Developmental Disabilities
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Project Staff

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

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Effects on Health During the Aging Process

• Normal aging process
• Lifestyle choices
• Genetic effects
• Environment

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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
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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.

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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.

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Symptoms of a Problem

• Rubbing eyes.
• Squinting.
• Shutting or covering one eye.
• Tilting or thrusting head forward.
• Redness of eye or area around eyes.

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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.

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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.

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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

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Types of Vision Loss (contd)

• 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.

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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.

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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.

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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.

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Types 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.

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Possible Symptoms

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

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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.

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Aging Effects on Mouth/Taste

• Decrease in taste buds
• Recession of gums,
• Thinning of dental enamel

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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.

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Support 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.

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Nose/Smell

• Decrease in nerve fibers.
• Drying of mucous membranes in nose.
• Decreased sensitivity to odors.

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Support 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.

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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

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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.

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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.

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Strategies

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

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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

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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.

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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.

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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

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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.

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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.

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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).

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Protecting the Lungs (contd)

• 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.

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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

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Behavior and Cognitive

• Intelligence, ability to learn, dont 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.

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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.

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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

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Protecting 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.

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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

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Down Syndrome

• Increased incidence of Alzheimers 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.

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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.

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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.

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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.

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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

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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.

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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

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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.

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Prader-Willi Syndrome

• Hypogonadism- low hormonal levels.
• Problems related to uncontrolled obesity
• Cardiovascular
• Diabetes

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Fragile X Syndrome

• Increased rates of mitral valve prolapse
• Musculo-skeletal disorders
• Early menopause
• Epilepsy
• Visual impairments.
• Earlier osteoporosis

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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

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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.

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Types of Dementia

• Alzheimers 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.

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Stages of Alzheimers Dementia
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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.

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Get Medical Evaluation

• Rule out other possible causes for symptoms,
  behaviors.
• Document a progressive decline from the persons
  former or baseline status.
• Possible or probable diagnosis by process of
  elimination and characteristic pattern of
  difficulties.

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Documenting Baseline Function

• Use a standardized test.
• Give periodically beginning before you anticipate
  problems.
• Include a video recording of the persons
  functional abilities.
• Compare change over time.
• The PCAD project (see sample handout).

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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.

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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
• http//www.uic.edu/orgs/rrtcamr/