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Ageing with an
Intellectual Disability
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A Higher Burden of Illness
• Undetected illness
• Untreated illness
• Delayed treatment
• Less likely screening
• General risks related to ageing
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What Can Group Home Staff do?
• Anticipate and prevent problems that are preventable
• Identify indicators of illness
• Advocate for appropriate screening and treatment
• Prevent premature relocation
• Protect from harm and suffering
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Normal Ageing
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Predictable Changes
• Sensory• Hearing• Vision• Smell• Taste• Touch
• Skin
• Reserve, repair and replenish
• Response to illness
• Sleep patterns
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HO
W W
E S
EE
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Signs of Vision Problems
• Sheltering eyes from light
• Squinting, tilting head
• Being unusually cautious, falling, tripping
• Bumping into things
• Poor table manners
• Change in personal appearance
• Change in activity, withdrawing
• Confusion
• Difficulty recognizing people or objects
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People with Intellectual Disability• Increases with age like all older adults
• Higher vision conditions before old age
• People with Down Syndrome high risk
• Often goes undetected
• May require specialized vision screening
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Age Related Eye Conditions: Glaucoma
Treatable, preventable blindness
Irreversible vision loss, blindness
Silent and painless
Easily detected with exam
Treated with daily drops
Affects peripheral vision
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Diabetic Retinopathy
• Irreversible blindness• Bleeds from small vessels in
back of eye• Stains tissue and blocks vision
• Prevent diabetes
• Control blood sugar
• Mostly preventable with laser
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Macular Degeneration
• Not reversible or treatable
• Central vision affected
• Leads to blindness
• Optic nerve
• Smoking major risk
• Protection is important
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Role of Caregiver
• Preventable (diabetes)
• Detectable: prevent vision loss
• Often slow and subtle changes
• Advocate for screen and treatment
• Support follow through
• Behavior change is major indicator
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Hearing
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Sound Transmission
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Signs of Hearing Loss
• Difficulty hearing with background noise
• Misunderstanding
• Confusion
• Withdrawal
• Anger, irritation
• Uncooperative
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Intellectual Disability and Hearing Loss
• Much higher than general population
• Almost 100% in Down Syndrome
• Tremendous amount undetected
• May require specialized testing
• Poor follow through
• Challenges managing hearing aids
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Communicating with Hearing Loss
• Decrease background noise (fan, dishwasher, TV)
• Face-to-face, gain attention
• Indicate, gesture
• Change words, rephrase
• Change pitch (women’s voices)
• Most people cannot lip read
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Other Sensory Changes
• Smell• Decreased
olfactory cells• Medications• Spoiled food,
gas leaks, fire• Body odor
• Taste• Linked to smell• Taste buds 1/6• Decreased saliva• Medications• Consequences
• Eat more• Eat less• Eat spoiled
food• Eat odd foods• Salt and sugar
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Sleep and Ageing
• Less sleep needed and changed patterns
• Causes of sleep problems (Expectations)• Sleep during the day• Insufficient exercise • Medications• Pain, restless leg• Frequent urination (infection, diabetes)• Prostate enlargement• Cardiac problems
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Reserve, Repair, Replenish
• Reserve decreases with age• Decreased ability to maintain
body temperature• Diminished response to illness
• Fever• Pain• Heart rate
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Role of the Caregiver
• Identifying cues (behaviour change)
• Supplement to lost body cues and responses• Temperature• Food• Sleep• Environment • Protection (vision and hearing)
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Health Conditions Common in Older Adults
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General Comments
• Beware of sudden changes
• Be mindful of slow changes over time, baseline
• Don’t assume ‘its just getting older’
• Behavior change is common indicator of illness
• Ask the most familiar person or people
• The same symptom can be many things
• Sometimes there is more than one thing
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Common Conditions:
• Incontinence
• Falls
• Dehydration
• Untreated pain
• Obesity
• Delirium
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Incontinence
• Common, multiple causes, often reversible• Infection• Diabetes • Medications• Treatment for heart disease• Mobility• Fluids/caffeine• Overactive bladder/prostate• Don’t assume ageing
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Falls• Not normal
• Serious consequences
• General decline from inactivity
• Vision
• Medications (blood pressure drop)
• Pain
• Balance, tripping (feet, shoes, rugs)
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Dehydration
• Thirst reflex blunted
• Less water in muscles than younger (reserve)
• Mobility
• Fluid loss (diarrhea, vomiting, fever)
• Can be life threatening
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Unrelieved Pain
• Until recently believed to be pain insensitive
• High level of undetected and untreated
• Same population comparison (much lower)
• Many chronic conditions associated with pain
• GPs and specialists sensitive to verbal cues
• Patient report is gold standard
• Facial expression reliable indicator
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Delirium
• Commonly missed in all older adults
• Often mistaken for dementia
• Caused by• medications• illness, infection• dehydration• impaction
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Delirium
• Characteristics• Altered attention• Change in cognition• Sudden onset• Variable• Associated with illness
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What We Know
• People with ID are:• less likely to be diagnosed• less likely to be treated• suffer needlessly
• Untreated illnesses are often irreversible if left
• Caregivers are in a pivotal position to identify, advocate and protect and keep people home
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Older People with ID
• Same illnesses as all older adults
• Higher rates• Respiratory (leading
cause of death)• Diabetes (obesity,
inactivity)• Gastrointestinal
Increasing• Cancer (GI,
testicular)• Arthritis
• Less likely to treat• Heart disease
• Related to disability
• Obesity• Inactivity
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Gastrointestinal Conditions
• Much higher rate• Constipation up to 70% (meds, inactivity)• Reflux 50% (vs 7%)• Bowel and GI cancer• Hepatitis and H Pylori (institutional
exposure)• Choking• Highly associated with behavioral changes• Even with speech, unable to articulate
symptoms
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Why so Many Unidentified?
• 80% of diagnosis based on history
• Caregiver misinterpreting symptoms as age
• Misinterpreting symptoms as behavior
• Caregiver not noticing symptoms
• Change in caregiver
• Assumptions that screen will not be tolerated
• GP unfamiliar
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Working with GPs and Specialists
• Double appointment time
• Familiar person
• Decrease the wait time
• Accompany throughout
• Explain services at group home
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General Comments
• Beware of sudden changes
• Be aware of slow changes over time, baseline
• Don’t assume ‘its just getting older’
• Look for patterns
• Behavior change is common indicator of illness
• Ask the most familiar person
• The same symptom can be many things
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The Manual
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The Manual• Not a novel!
• Targeted use
• What’s normal
• Working with providers, families
• Advocating
• Common symptoms: providing the 80%
• Common conditions
• Resources
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Uses of the Manual
• General learning
• Support for advocating
• Creating expectations (Screening)
• Symptoms• Brief background/causes/consequences• Information needed• Team approach• Useful information for professionals
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The Trainer’s
Guide
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Using the Guide
• Response to resident• Symptoms• Conditions
• General learning
• Practice problem solving
• Tips for trainers
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Group Activity
• Pick a trainer
• Review the case
• Guide your staff through the case
• Pick a resident you know
• Reconvene to discuss