Aging with A Developmental Disability - State of Florida

Aging with A Developmental
Disability

Old age is like everything else. To make a
success of it, you’ve got to start young.
Theodore Roosevelt

Each Individual Ages Differently

Genetics, injuries, nutrition and life style
Psychological outlook
If we want to age gracefully and gradually
with our mental faculties intact
Our today's will influence our tomorrows

Aging in Place

Many individuals with DD live with aging
parents who are also aging
The needs of these individuals must be met
We need to increase our knowledge of the
aging process so we can be proactive not
just reactive to their needs
All people deserve to age with dignity and
respect

1

Effects on Health During the
Aging Process

• Normal aging

process

• Lifestyle choices
• Genetic effects
• Environment

Aging With a Developmental

Disability Effects of the

Normal disability
Limited access to and its treatment

effects of aging quality

health care Lack of knowledge

Inadequate funding about aging for

for health care Person with people with DD

a Disability

Negative attitudes about Lifestyle
people with disabilities effects

Decreased

Quality

of Life

Support During the Aging
Process

• Need to document current level of function.
• 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.

2

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 Problem

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

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.

3

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.

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

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.

4

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.

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.

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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Support Strategies

• Reduce background noise and commotion
• Hearing exams.
• Speak lower tones, face person.
• Hearing loss leads to social isolation and

emotional concerns

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.

Possible Symptoms

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

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What Words sound like with
hearing loss
• Tell me exactly what you want to keep”
• “Ell me ezaly wha you wan oo ee”
• Decreased ability to hear high pitched

sounds- some women-

• Can hear vowels (a,e,I,o,u) easier than

“c,k,p,s,t

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.

Aging Effects on Mouth/Taste

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

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Be Alert For:

• 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

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.

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.

8

Nose/Smell

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

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.

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 harsh soaps 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 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.

Aging Liver

• Decrease in size
• Becomes less efficient in processing

medications, their effect lasts longer and
dosage needs to be decreased

• Less efficient in absorbing nutrients

10

Strategies

• Promote elimination through fluids, fiber

and physical activity.

• Observe for constipation.
• Encourage slower eating, smaller, more

frequent meals.

• Avoid empty calories.

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

Observe For

• Incontinence of urine
• Urinary leakage, frequency
• Medications more difficult to clear
• Swelling in extremities or signs of

dehydration

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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.

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.

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.

Endocrine System

• Thyroid function may decrease,

metabolism slows

• Increase incidence of diabetes
• Menopause for women

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).

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 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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Aging Nerves

• Reflexes slow
• After age 60 the number of cells in the

spinal cord decrease

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.

Intellectual Health

• The 9 elements of cognitive health are:

language, thought, memory, executive
functions, perception, judgment,
attention, remembered skills (such as
driving), and the ability to live a
purposeful life. Preserving these functions
can literally make the difference between
leading an independent or a dependent
life.

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Emotional Health

• Emotional health is just as important as

cognitive health. Like cognitive health,
emotional health is not simply the absence
of psychiatric illness, but the ability to
control one's emotions and emotional
intelligence (the ability to use and identify
emotions constructively)

Emotional Health

• Emotional health comprises personal traits

that promote successful adaptation, such
as resilience, mastery, self-efficacy, and
wisdom. Self-efficacy and the ability to
engage with others may ward off the
sadness and depression that often
characterize old age and speed cognitive
decline

Risk Factors

• Advancing age is the most important risk factor

for cognitive decline, cognitive impairment, and
dementia.

• There are strong associations between cognitive

decline and both physical inactivity and vascular
disease.

• The link between hypertension in midlife and

later cognitive decline is particularly strong.
Cardiovascular disease increases the risk for
severe and permanent neurologic deficits.

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Control Risk Factors

• Controlling the risk factors for heart

disease (hypertension, smoking, obesity,
lack of exercise) may slow the process of
cognitive decline, but it is not yet known
whether such changes can actually
improve cognitive function

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.

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 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.

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

Aging with Down Syndrome

• 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

and leads to increased production of tangles and plaques
defective repair of oxidative damage to DNA; increased
rate of programmed cell death

• Increased heart and vascular disease, leukemia, immune

deficiency

• Increased frequency of osteoporosis, especially in males;

increased prevalence of thyroid disease.

• Increase in vision and hearing issues

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Down Syndrome

• Increased incidence of Alzheimer’s

Dementia

– Early onset type of AD
– Begins at age 40 instead of 50s or 60s
– First noticed in daily function rather than

memory loss.
– Progresses more rapidly (8 years not 20)
– Affects about 25% of DS population.
– May have new onset of seizure disorder.

Behavioral changes in Dementia

• Changes in normal routines of ADLS
• Eating and sleeping habits change
• Difficulty making choices
• Lose possessions
• Loss of enjoyment in normal activities
• Increase in anxiety and confusion may

lead to aggression

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.

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 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.

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

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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Support Strategies

• Get at least 7 hours rest each night
• Avoid cold and high humidity as this

increases spasticity

• Avoid stress and relax– hot baths
• Avoid caffeine- increases spasticity
• Keep body weight within normal range
• Exercise-keep moving

Prader-Willi Syndrome

• Hypogonadism- low hormonal levels.
• Problems related to uncontrolled

obesity

– Cardiovascular
– Diabetes

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

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 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.

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Stages of Alzheimer’s

Dementia

Mild Confusion Disoriente Problems Changes
(early and d in space. with in
stage) memory personality
loss. routine and
Moderate tasks. judgment.
(mid Difficulty
stage) with ADL’s Anxiety, Sleep Difficulty
paranoia, difficulty. recognizin
Severe Loss of g familiar
(late speech. agitation. people.
stage)
Loss of Loss of Total
weight, bladder/bo dependenc
appetite. wel e on
control. others.

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 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.

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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).

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.

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/

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