Understanding Aging with a Disability: Insights for Practitioners

1. Aging with a Disability: What the Practitioner Needs to Know AACPDM Presentation Summary Sept 29, 2004 Bryan Kemp, PhD University of California at Irvine

2. % Capacity 20 40 60 80 100 AGE What is Aging? A Look at the Organ Systems Rate of Aging = 1% per year Reserve Capacity 40 Required Capacity

3. % Capacity 20 40 60 80 100 AGE Aging with a Disability vs. Typical Aging Non-Disabled = 1% per year 40 Disabled = 1.5% per year

4. Walking Cessation by Age in CP Group n = 27 • Stopped by 30 due to: • fatigue • inefficiency % Stopped by 50due to: • pain • fatigue 11 - 20 21-28 38-50 >60 Murphy K, et al. Dev Med Child Neuro. 1995, 37, 1075-1084. AGE

5. Incidence of Pain by Impairment Group n = 337 Severity mild mod/severe % (9) (120) (23) (60) (125) RRTC on Aging with a Disability Natural Course of Aging with a Disability Study, 2002

6. Incidence of Fatigue by Impairment Groups n = 351 % Polio CP SCI Control RRTC on Aging with a Disability, Natural course of aging with a disability study, 2001

7. Disabled Non-disabled Loss of Function with Age Recreation Recreation Employment IADLs Employment IADLs ADLs ADLs 30 40 50 60 70 80 AGE

8. Example of Typical Daily Functional Demands for W/C users To bed - Sleep? Household chores Exercise? Outings (work, school, social, community chores, recreation) Propulsion (hills, rough terrain, ramps, curb cuts, distance) Transfers (cars, chairs, toilets, bathbench, couches, floor, bed) Bathing/Toileting/Dressing/Pressure relief raises Rise and Shine -Up and out of bed!

9. Two Important Psychological Issues • Coping and the problem of depression • Quality of Life and community involvement

10. Depression Scores Across Groups Percent

11. Why Depression Is Poorly Recognized • The symptoms of depression overlap with the symptoms of chronic disease. • Clinicians and others “normalize” depression. • Clinicians believe depression is untreatable because of the disability.

12. Causes of Depression • Not caused by the disability or the impairment. • Most likely caused by difficulties coping with the disability and the societal problems.

13. Factors Related to Positive QOL in Persons Aging with a Disability • Not related to age, severity of impairment or to degree of disability. • The ability to engage in meaningful, enjoyable or productive activities. • The number and kind of community activities the person does. • Somewhat related to social support, attitude, and personality.

14. QUALITY OF LIFE:The presence of a reasonable amount of pleasurable, successful and meaningful experiences.

15. Initial Rehabilitation focus • Recognize the value of education about long-term life issues. Initial rehab may be the only teachable moment. • Assist with finding the balance between the need for exercise and the need for efficient movement. • The primary means of mobility should not be the means for exercise. • Emphasize performance skills that protect the musculoskeletal system and provide the rational for specific performance techniques. • Educate clients about potential changes and how to recognize and respond to symptoms associated with functional change.

16. Instead of… “Use it or lose it” “No pain, no gain” • Consider… “Conserve it to preserve it”

17. Website Resources • “Aging with a Disability: Putting Research into Practice and Education” March 2003 • Video of presentations • Powerpoint slides • http://www.cdihp.org/aging.html

18. Additional Readings • Lankasky, K. (2004). A consumer’s perspective on living with a disability: How change in function affects daily life. In B.J. Kemp & L. Mosqueda (Eds.), Aging with a Disability: What the Clinician Needs to Know (pp. 9-18). Baltimore: The Johns Hopkins University Press. • Murphy, K.P., Molnar, G.E., & Lankasky, KI. (1995). Medical and functional status of adults with cerebral palsy. Developmental Medicine and Child Neurology, 37, 1075-1084.