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 (women’s 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 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

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 Don’t 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 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

37. The Manual

38. Not a novel! Targeted use What’s 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 Trainer’s 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