Ageing with an Intellectual Disability

1
Ageing with an Intellectual Disability
2
A Higher Burden of Illness

• Undetected illness
• Untreated illness
• Delayed treatment
• Less likely screening
• General risks related to ageing

3
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

4
Normal Ageing
5
Predictable Changes

• Sensory
• Hearing
• Vision
• Smell
• Taste
• Touch

• Skin
• Reserve, repair and replenish
• Response to illness
• Sleep patterns

6

• HOW WE SEE

7
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

8
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

9
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

10
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

11
Macular Degeneration

• Not reversible or treatable
• Central vision affected
• Leads to blindness
• Optic nerve
• Smoking major risk
• Protection is important

12
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

13
Hearing
14
Sound Transmission
15
Signs of Hearing Loss

• Difficulty hearing with background noise
• Misunderstanding
• Confusion
• Withdrawal
• Anger, irritation
• Uncooperative

16
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

17
Communicating with Hearing Loss

• Decrease background noise (fan, dishwasher, TV)
• Face-to-face, gain attention
• Indicate, gesture
• Change words, rephrase
• Change pitch (womens voices)
• Most people cannot lip read

18
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

19
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

20
Reserve, Repair, Replenish

• Reserve decreases with age
• Decreased ability to maintain body temperature
• Diminished response to illness
• Fever
• Pain
• Heart rate

21
Role of the Caregiver

• Identifying cues (behaviour change)
• Supplement to lost body cues and responses
• Temperature
• Food
• Sleep
• Environment
• Protection (vision and hearing)

22
Health Conditions Common in Older Adults
23
General Comments

• Beware of sudden changes
• Be mindful of slow changes over time, baseline
• Dont 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

24
Common Conditions

• Incontinence
• Falls
• Dehydration
• Untreated pain
• Obesity
• Delirium

25
Incontinence

• Common, multiple causes, often reversible
• Infection
• Diabetes
• Medications
• Treatment for heart disease
• Mobility
• Fluids/caffeine
• Overactive bladder/prostate
• Dont assume ageing

26
Falls

• Not normal
• Serious consequences
• General decline from inactivity
• Vision
• Medications (blood pressure drop)
• Pain
• Balance, tripping (feet, shoes, rugs)

27
Dehydration

• Thirst reflex blunted
• Less water in muscles than younger (reserve)
• Mobility
• Fluid loss (diarrhea, vomiting, fever)
• Can be life threatening

28
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

29
Delirium

• Commonly missed in all older adults
• Often mistaken for dementia
• Caused by
• medications
• illness, infection
• dehydration
• impaction

30
Delirium

• Characteristics
• Altered attention
• Change in cognition
• Sudden onset
• Variable
• Associated with illness

31
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

32
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

33
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

34
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

35
Working with GPs and Specialists

• Double appointment time
• Familiar person
• Decrease the wait time
• Accompany throughout
• Explain services at group home

36
General Comments

• Beware of sudden changes
• Be aware of slow changes over time, baseline
• Dont 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

37
The Manual
38
The Manual

• Not a novel!
• Targeted use
• Whats normal
• Working with providers, families
• Advocating
• Common symptoms providing the 80
• Common conditions
• Resources

39
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

40
The Trainers Guide
41
Using the Guide

• Response to resident
• Symptoms
• Conditions
• General learning
• Practice problem solving
• Tips for trainers

42
Group Activity

• Pick a trainer
• Review the case
• Guide your staff through the case
• Pick a resident you know
• Reconvene to discuss