Aging Intellectual and Developmental Disabilities

1. AgingIntellectual and Developmental Disabilities Presented by: Rita J. Murphy RN,BSN,CDDN Cathy N. Shaffer RN Jody Thomas RN

2. Why are People Living Longer ? • Life expectancy is unpredictable • Remarkable advances over the past 50 years • Public Health • Sanitation • Immunizations • Antibiotics • Nutrition • Social policy • Environment • Historic group of individuals

3. Define: Developmental Disability • A condition that occurs prior to , at birth or during childhood which affects normal growth and development • Depends on the functional capabilities of the individual and affects on physical and /or cognitive abilities • Condition may interfere with: • Mobility • Speech • ADL’s • Learning • Making life decisions • Living independently

4. Life Expectancy • Leading cause of increased life expectancy: • Moving out of institutions • Receive better medical care • Life expectancy is now closely approaching that of the general population • May have related conditions that affect life expectancy • Severe Impairments include: • Cerebral Palsy • Down Syndrome • Epilepsy

5. Dr. William Thomas & Normal Aging “Aging is not a chaoticmechanical breakdown rather…Aging can be thought of as a symphonic physiological developmental process that extends across the decades”

6. TheProcess • Older individuals with ID may exhibit relatively higher rates of: • Mobility Issues • Fractures • Osteoporosis • Visual • Hearing • Mental health • Poly-pharmacy • Depression Older individuals with IDD may not have built reserves to support their aging and wellness- body, mind and spirit Older individuals with IDD/DD may have lead a sedentary life style and have not been encouraged to exercise

7. Maximum Vitality • Reach maximum vitality at an earlier age • The body responds to stressors • Maximum vitality in the general population: • Age 30

8. Common Factors –Aging and IDD/DD • The aging process /factors of aging, can further alter function that has already been affected by a developmental disability. • Down Syndrome, Epilepsy and CP • Layering of Issues due to IDD/DD: • Hearing • Vision • Mobility • Self-care skills • Communication and understanding • Further complicates the aging process and an accurate diagnosis • Difficult to differentiate disease vs. aging process for the severely impaired • May have fragmented care with little medical and family history

9. Lifespan • According to studies, causes of death are similar to those of the general population • Causes of death include: • Cardiovascular disease • Respiratory disease • Cancer (Janicki, Dalton, Henderson,& Davidson,1999)

10. Identifying Changes • Observe facial expressions • Alert • Sleepy • Confused • Anxious • Painful • Observe response • Usual response or off? • Individuals may be poor reporters • It is important to know: • How they have presented throughout their life • Their story • Support and honor the Direct Support Professionals who know our individuals

11. The Integumentary System (SKIN) • Our bodies first line of defense and the system that you notice first with age • Individuals with IDD/DD have a higher risk for: • Immobility • Loss of thickness • Less insulation • Skin tears and breakdown • Inability to report pain and discomfort • Possible bowel or bladder issues • Diminished or elevated sense of touch • Difficulty healing • No access to water on their own or complain of thirst • Poor hygiene skills

12. Specific Issues Hearing, Vision and Oral GI/GU Vaccines Aspiration Pneumonia Sensory Processing Falls

13. Hearing, Vision and Oral • Individuals may experience: • Impaired vision due to a neurological deficit • Unable to voice changes in vision • Improper use bifocals and hearing aides • Higher incidence of hearing issues (wax build up) • Misplace or refuse to wear assistive devices • Unable to open their mouth • Oral changes due to medications • Poor oral hygiene • Lack of adequate dental care • Ill fitting dentures • Problems with choking, aspiration and food consistency • Small group of Dentists who understand and can work these individuals

14. GI/GU • Individuals with IDD/DD have higher risk for: • Bowel obstruction • GERD • Slower stomach emptying • Poor hygiene • Possible gluten intolerance • Wheat sensitivity • Full Celiac disease • Problems with incontinence

15. Vaccines • Who should get a pneumococcal vaccine, flu shot and possibly a shingles vaccine? • Individuals age 65 or older • Those prone to respiratory problems, including: • Myotonic Dystrophy • Down Syndrome • Those who are medically frail • Those with severe IDD/DD • Individuals with Down Syndrome: • Carefully watch for signs and symptoms of an upper respiratory infection, it may lead to pneumonia • Antibiotics should be prescribed early on to prevent full blown pneumonia. Pneumonia is the leading cause of death in this population.

16. Aspiration Pneumonia • Causes: • Inhalation or the breathing in of fluids, vomit or foods • Eat too fast, hoard and may fear the eating process • Poor dentition - missing loose or decayed teeth • Increase the incidence of aspiration and poor fitting dentures • The aging, both the general population and ID/DD population, are prone to aspiration if they have difficulty chewing and swallowing • Individuals with Down Syndrome • Tongue thrust • Mouth breathers • Dry mouth • Individuals with Cerebral Palsy & Myotonic Dystrophy • Increased incidence of aspiration

17. Sensory Processing • The Senses • Hearing • Taste • Vision • Smell • Touch • Proprio-ception • Vestibular • All 7 senses are needed and work together to help make sense of the environment • Senses determine responses to the environment • Information processed by senses can be changed by the process of aging • Vision and hearing affected earlier for IDD/DD • Preferred Senses: • Everyone has one • Possible loss due to aging • Design the environment to enhance our senses as we age • In order to minimize loss of our senses as we age: • Continue to program pathways to the brain (Kathleen Bishop, PH.D.)

18. Falls • Individuals with IDD/DD… • Are living longer • May have a dual diagnosis (IDD,MH) • Have underlying issues with mobility • Increase risk of developing Osteoporosis, due to medication • Led sedentary lifestyles • This decreases bone density, increases prevalence of osteoporosis

19. Falls in the General Population • Environmental • Slippery falls • Poor lighting • Throw rugs • Cluttered walking paths • Uneven sidewalks/broken curbs • Poor fitting shoes • Physical • Change in balance control • Vision and hearing changes • Muscle weakness • Osteoporosis /osteoarthritis • Medication side effects • Taking 3 or more medications • Diabetes (decreased sensation in feet) • Mental decline/confusion • Seizures

20. Down Syndrome Aging and Down Syndrome What Can We Expect? Down Syndrome & Alzheimer’s Dementia

21. Aging and Down Syndrome • Disorder of chromosome 21 • Chromosomes are usually found in pairs • Trisomy of chromosome 21 • Accelerated aging gene found on chromosome 21 • Aging and Down Syndrome not completely understood (ndss 2013) • Appear to slow down in their 40s or 50s (ndss 2013) • Have an increased risk for age related visual and hearing disorders, depression, seizure and Alzheimer’s disease, skin, endocrine and upper respiratory infections /pneumonia, celiac disease and sleep apnea

22. What Can We Expect? Individuals with Down Syndrome Danny at the Ball • Lifespan: • Less than general population and/or DD population • Living into their 50’s, 60’s and 70’s

23. Down Syndrome & Alzheimer’s Dementia • Risk of developing Alzheimer’s increases with age • At age 50: • 30% of individuals • At age 60 • 50% of individuals • Not all individuals will develop Alzheimer’s • At age 30 and 40 • Changes in brain matter may occur • Will not develop clinical symptoms • Diagnosis: • It is over diagnosed • Cannot determine in one MD visit • NTG is an early screening tool • Maximum environmental supports

24. Cerebral Palsy Aging and cerebral palsy Dr. Michael Henderson As People with Cerebral Palsy Age..

25. Aging and Cerebral Palsy • One time injury to the immature central nervous system • Condition not a disease • May or may not have an intellectual or developmental disability • Affects the central control of muscle function • Movement • Balance • Life long neurologically induced motor impairment • Aging is similar to general population • Timing of changes may vary

26. “Cerebral palsy (CP) is one of the most common developmental disabilities. About 65% of people with cerebral palsy have an Intellectual or Developmental Disability. The majority of cases of cerebral palsy are caused by abnormalities of the developing brain that took place prior to birth. Cerebral palsy refers to a variety of conditions that are characterized by abnormal motor actions.” (movements of the muscles and corresponding limbs). Dr. Michael Henderson Simple voluntary action or task may require increased effort Difficulty with muscle movements Poor coordination Rapid muscle movements Weakness in their muscles Involuntary or writhing muscle movements.

27. As People with Cerebral Palsy Age.. • Individuals may experience • Increased pain in muscles and joints • Arthritis • Bursitis • Tendonitis • Pain due to fractures or sprains and osteoporosis • Possibility to opt out of walking • Problems with skin integrity • Depression due to losses in function • Concerns with eating, swallowing, choking issues and GERD • Increased body weight, obesity and deconditioning • Constipation and bladder issues • Spasms may cause pain and decrease function/mobility

28. Down Syndrome & Cerebral Palsy • Observed acute or chronic loss of function in an individual with CP or Down Syndrome(or general population for that matter): • A change in the way the person walks • Inability to use an arm • Decrease in hand writing skills • Feelings that hands do not function as they did before • Must be reported to a medical professional • A prompt and thorough evaluation by an MD is essential to the health and wellness of the individual.

29. Mental Health Cathy will share stories regarding the IDD/DD population from a mental health standpoint. Enjoy photographs from Ontario ARC’s IDD/DD population.

48. Rita Murphy Learning & Development Specialist - RN rmurphy@arcmonroe.org 585-271-0660 Cathy Shaffer Coordinator of Clinical Services - RN cshaffer@lwarc.org 585-658-2828 JodyThomas Manager of Aging Services - RN jthomas@ontarioarc.org 585-919-2161 Contact Information