Ageing in Place with an Intellectual Disability Barbara J. Bowers, PhD, RN Ruth Webber PhD

Demographics and Trends Longevity (25-75) A wave is coming! Debate over appropriate residence and support Tension between health and social care

Intellectual Disability and Health New interest in physical health (not just dementia) What’s REALLY important Higher burden of illness ▫Undiagnosed illness ▫Untreated known illness ▫Lower screening rates ▫Different risks and exposures

Old or Sick? How can you tell? Normal age related changes (handout) Increased illness with age Different risks with ID (handout) Highlights ▫Slowing down ▫Walking difficulty and falls ▫Confusion ▫Sleep disturbance ▫Behavior change (often pain) ▫Bladder and bowel

Sorting It All Out Understanding differences between symptoms and aging Assuming its not ‘just getting old’ Advocating when nothing is being done Not letting people languish Collecting useful information

Making a Diagnosis Eighty percent history Knowing when something needs attention Initiating an appointment Explaining the symptoms/history Answering questions Monitoring progression or improvement Trialing a treatment

How Caregivers can Help Notice when something has changed Don’t assume its ‘just ageing’ Initiate an appointment with convincing data Keep track of what’s normal/what’s not Maintain a record Make sure the record gets to the clinician Restate what’s going on, if necessary Ask about source of the problem Ask what else could cause this and how it will be sorted

Challenges for Group Home Staff Assume changes are ‘just ageing’ Assume confusion or aggression is dementia (usually not) Afraid to push Afraid to advocate (no knowledge to back it up) Don’t provide the history needed Don’t know risks or screening needed Often lack relevant policies Don’t collaborate with health care professionals Don’t know local resources Not sure if ageing is appropriate for group home