Ageing with an
Intellectual
Disability
A Higher Burden of
Illness
• Undetected illness
• Untreated illness
• Delayed treatment
• Less likely screening
• General risks related to ageing
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
Normal Ageing
Predictable Changes
• Sensory
• Hearing
• Vision
• Smell
• Taste
• Touch
• Skin
• Reserve, repair
and replenish
• Response to
illness
• Sleep patterns
HOW WE SEE
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
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
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
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
Macular Degeneration
• Not reversible or treatable
• Central vision affected
• Leads to blindness
• Optic nerve
• Smoking major risk
• Protection is important
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
Hearing
Sound Transmission
Signs of Hearing Loss
• Difficulty hearing with background noise
• Misunderstanding
• Confusion
• Withdrawal
• Anger, irritation
• Uncooperative
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
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
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
Sleep and Ageing
• Less sleep needed and changed patterns
• Causes of sleep problems (Expectations)
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Sleep during the day
Insufficient exercise
Medications
Pain, restless leg
Frequent urination (infection, diabetes)
Prostate enlargement
Cardiac problems
Reserve, Repair,
Replenish
• Reserve decreases with age
• Decreased ability to maintain body
temperature
• Diminished response to illness
• Fever
• Pain
• Heart rate
Role of the Caregiver
• Identifying cues (behaviour change)
• Supplement to lost body cues and responses
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Temperature
Food
Sleep
Environment
Protection (vision and hearing)
Health Conditions
Common in Older
Adults
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
Common Conditions:
• Incontinence
• Falls
• Dehydration
• Untreated pain
• Obesity
• Delirium
Incontinence
• Common, multiple causes, often reversible
• Infection
• Diabetes
• Medications
• Treatment for heart disease
• Mobility
• Fluids/caffeine
• Overactive bladder/prostate
• Don’t assume ageing
Falls
• Not normal
• Serious consequences
• General decline from inactivity
• Vision
• Medications (blood pressure drop)
• Pain
• Balance, tripping (feet, shoes, rugs)
Dehydration
• Thirst reflex blunted
• Less water in muscles than younger
(reserve)
• Mobility
• Fluid loss (diarrhea, vomiting, fever)
• Can be life threatening
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
Delirium
• Commonly missed in all older adults
• Often mistaken for dementia
• Caused by
• medications
• illness, infection
• dehydration
• impaction
Delirium
• Characteristics
• Altered attention
• Change in cognition
• Sudden onset
• Variable
• Associated with illness
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
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
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
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
Working with GPs and
Specialists
• Double appointment time
• Familiar person
• Decrease the wait time
• Accompany throughout
• Explain services at group home
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
The Manual
The Manual
• Not a novel!
• Targeted use
• What’s normal
• Working with providers, families
• Advocating
• Common symptoms: providing the 80%
• Common conditions
• Resources
Uses of the Manual
• General learning
• Support for advocating
• Creating expectations (Screening)
• Symptoms
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Brief background/causes/consequences
Information needed
Team approach
Useful information for professionals
The Trainer’s Guide
Using the Guide
• Response to resident
• Symptoms
• Conditions
• General learning
• Practice problem solving
• Tips for trainers
Group Activity
• Pick a trainer
• Review the case
• Guide your staff through the case
• Pick a resident you know
• Reconvene to discuss