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Aging & Brain Injury: Coping & Wellness Audrey Nelson, MS

Aging & Brain Injury: Coping & Wellness Audrey Nelson, MS. A Personal Perspective from a survivor, support group facilitator and a caregiver. Has our advocacy been working? . National Council for Independent Living (NCIL) conference last week Legislative priorities

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Aging & Brain Injury: Coping & Wellness Audrey Nelson, MS

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  1. Aging & Brain Injury:Coping & WellnessAudrey Nelson, MS A Personal Perspective from a survivor, support group facilitator and a caregiver

  2. Has our advocacy been working? • National Council for Independent Living (NCIL) conference last week • Legislative priorities • Marches on the Capitol demanding community care & real choices • Legislative visits • The Brain Injury Association has done this too • What is different?

  3. Saturday I attended a funeral . . . • Not what I had planned for my Memorial Day Weekend • For the child of a High School classmate • Crystal was born 21 years ago and given 3 weeks to live. She had massive brain damage and constant seizures. • But, I am so glad I went-it was the most powerful celebration of a life I have ever been to.

  4. Why her?By Erma Bombeck (as read at Krystal’s funeral) • God passes a name to an angel and smiles, "Give her a handicapped child." • The angel is curious. "Why this one God? She's so happy." • "Exactly," smiles God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel." • "But has she patience?" asks the angel. • "I don't want her to have too much patience or she will dorwn in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it." • "I watched her today. She has that feeling for self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give here has her own world. She has to make her live in her world and that's not going to be easy." • "But, Lord, I don't think she even believes in you." God smiles, "No matter. I can fix that. This one is perfect - she has just enough selfishness." • The angel gasps, "Selfishness? Is that a virtue?" • God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it! I will permit her to see clearly the things I see... ignorance, cruelty, prejudice... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side." • "And what about her patron saint?" asks the angel, his pen poised in mid-air. • God smiles, "A mirror with suffice."

  5. The Worst Question How long did it take you to recover?

  6. My Life then . . . • I had a depressed skull fracture, a penetrating injury to my right frontal lobe with with bone and glass imbedded in brain tissue • I could not remember what I or anyone else just said nor could I think of the words to say what I wanted • I got angry easily and at times was violent • TV pictures moved too fast and reading was impossible • I felt that everyone was keeping the big secret that I was “retarded” now.

  7. Denial Isn’t Always Bad • I was a college student! • I realized I wouldn’t be able to work and go to school, so I enrolled in a public University • My Neurosurgeon did not think this was a good idea-right frontal lobe and all • Falls & stumbles

  8. My life now . . . • “Her brain is broken” • I’m hungry • Housework/chores • Staff reminders • Fatigue • Always wondering if I’m not “aware” • Reading

  9. My friends with injuries . . . • Sherry-2 years ago was diagnosed with a brain tumor • Cheryl-porous bones due to long term seizure and steriod medications • Patsy-Dystonia • 6 of the 7 co-founders of Fairhaven Institute have been diagnosed with MS

  10. We think . . . • There may be a Post TBI syndrome that is magnified at menopause. • There may be a great cost to our phenomenal recovery-over stress • More research needs to be done on aging and brain injury

  11. Aging and Changes • Competency • Physical Abilities/needs • Developmental Stage Differences Adolescence Menopausal • Support Changes Aging Parents/siblings Spouse/Significant Other Children Changes in funding

  12. CompetencyChanges • May have needed a guardian and now does not • Maybe needs a guardian when they did not before • Consider variations available: Voting and Marriage rights Guardianship of Estate/Person

  13. Asset Development & Management • New programs to reduce disincentives to save & invest through the IRS • “Making Work Pay” -Wisconsin’s proposed pilot project

  14. Margie -25 years post this month -she has lived with us for over five years -initially a very violent & angry person -little to no short term memory -memory challenges led to violence -she recently said to staff, “I know I probably already asked you, but ….” -two weeks ago she cried when a staff person told her she was moving and could no longer work with her -staff that get through her “proving” process grow to love her and consider her a friend. Can things get Better 25 years later?

  15. Brain Care • Diet & Exercise! • Medication Management-reducing long term consequences/increasing positive effects • Sense of belonging/purpose • Support Group Support Group Support Group • Learning New Things • Humor

  16. Thank You! For it is people like you who have cared and continue to care about people like me that mad it possible for my personal journey through the challenges of brain injury.

  17. I hope we all can share our experiences and find a common purpose within BIA Together we can find ways to maximize recovery and life long opportunities for all of us.

  18. Aging with Brain Injury Long Term Issues Task Force Brain Injury – Interdisciplinary Special Interest Group (BI-ISIG)

  19. Aging with Brain Injury: Long-Term Outcomes & Comparisons to SCI and Amputation Tina M. Trudel, PhD President, Lakeview Healthcare Systems, Inc. & Lakeview Virginia NeuroCare, LLC Sr. VP of Clinical Services Lakeview Management, Inc. Adjunct Asst. Professor of Psychiatry, Dartmouth Medical School

  20. Brain Injury, Aging and the L.T.I.T.F., B.I.-I.S.I.G., A.C.R.M. • The A.C.R.M. • Long established rehab organization - this year is the 85th annual meeting • Multidisciplinary • Serves individuals with disabling conditions • Mission involves R & D, practice guidelines, advocacy and dissemination of information • Publishes Archives of Physical Medicine and Rehabilitation

  21. Brain Injury, Aging and theL.T.I.T.F., B.I.-I.S.I.G., A.C.R.M. • The B.I. - I.S.I.G. • Brain Injury Interdisciplinary Special Interest Group • The largest and most active ACRM ISIG • Develop practice guidelines, professional standards, input for legislation/regulation • Contributed to ADA, CARF standards, evidence-based guidelines for cognitive rehabilitation practice, etc. • Conducting brain injury related research

  22. Brain Injury, Aging and theL.T.I.T.F., B.I.-I.S.I.G., A.C.R.M. • The L.T.I.T.F. • Long Term Issues Task Force • Reached crossroads 1998 • Decision to engage in research project • Input from many sources and constituents • Health and QOL implications of aging with brain injury • Input from professionals, individuals with brain injury, other disability groups, families • 1998-2000 - literature review, pilot study • 2001-2003 – data collection, analysis & articles

  23. Aging with Brain Injury ACRM Research Study Participants Tina M. Trudel, PhD – Study Coordinator & Chair Long Term Issues Task Force Tom Felicetti, PhD - Research Facilitator Mike Mozzoni, PhD - Research Facilitator David Strauss, PhD - Research Facilitator

  24. The Graying of America • By 2030, 20-25% will be 65 or older • Previously only 10% lived past age 65, now 80% • Aging baby boomers are fastest growing group • Medical advances are extending life spans • Death rates from injuries continue to decline

  25. The Graying of Brain Injury • 55 million with disability in US • 7 million 65+ disabled by chronic conditions • 5+ million Americans with disability due to BI • 80,000 individuals per year experience onset of long term disability due to BI • Most brain injuries occur prior to age 30, with 2/3 living 30-40 more years (NIH, 2000)

  26. Physical Seizures Degenerative disorders Incontinence Spasticity Neuroendocrine Pulmonary Balance/Falls Cognitive/Behavioral Memory Behavioral challenges Substance abuse Depression/fatigue Poor preventive care Lifestyle factors Dementia Aging with Brain Injury Issues from 1998

  27. Aging & Brain Injury Comparison • Memory impairment & slower new learning • Gait & balance problems • Ataxia • Decreased sensorium • Diminished executive functions • Reduced appetite and libido

  28. Early “Long-Term” Studies • United Kingdom studies • Brooks, McKinlay & others-Burden increasing over time • Oddy et. al.-Divergent appraisal of family vs. person • Tate et. al. • Scandinavian studies • Thomsen • 10-15 years post-injury-burden related to issues other than physical disability. • Limited social and voc reintegration over time.

  29. More Recent Long Term Studies… • Dawson & Chipman, 1995 • 454 participants in Canada • Average 13 years post-injury • 66% needed some ADL assistance • 75% not working • 90% limited/dissatisfaction with social integration • 47% not talking with others on phone • 27% never socialize at home • 20% never visit others

  30. Recent Long-Term Studies • Colantonio, Ratcliff, Chase & Vernich, in press • 286 individuals with TBI followed from consecutive discharges of PA rehabilitation hospital • 44 years old and 14.2 years post-DC • 96% caucasian

  31. Recent Long-Term Studies Cont’d • Colantonio, Ratcliff, Chase & Vernich, in press • Most common health symptoms: • Nervousness, tension • Arthritis • Sleep problems • 5% required basic ADL support • 30% assisted with community ADLs • 29% employed • 42% had been rehospitalized

  32. Affective and Emotional Disorders • Hibbard et. al. (1998) • 51% pre-existing psychiatric disorders • 80% post-injury Axis I psychopathology • Rosenthal et. al. (1998) • Literature review (27 studies) TBI and depression • Dynamic relationships among neurological, psychological, social and vocational variables

  33. Post-traumatic Psychosis • 8.9% - 20% over long term • Mild/Mod. injury: 2% - 5% • Severe injury: 10% or more • Medication complications and long term adverse impact • Reduced side effects with newer medications • (atypical antipsychotics)

  34. Post-traumatic Epilepsy • Increased psych complications (33% with temporal or limbic foci) • Neurotoxic/recovery effects of meds • Mild/moderate injury increases risk 2-5x; severe injury –10x; severe stroke/ penetrating injury increases risk 50x • 50% do not remit

  35. Dementia • Jane & Francel (1996), Lye (2000); Mehta et.al. (1999), Mayeux et. al. (1995), Nemetz, et. al. (1999), Plassman et. al. (2000); Rasmusson et. al. (1995) • - Ambiguous data • Significant brain injury may be a risk factor for Alzheimer’s Dementia • May reduce time to onset of dementia • Complications of depression and diagnosis • Proposed mechanisms and interactions

  36. Aging with Brain Injury - Implications from Literature • Chronic condition • Anticipate need for 1/3 –2/3 • Subjective burden of care often increases over time • Persisting problems are physical, cognitive and psychosocial/behavioral • Continuum of care needed over time • Life Care Planning • ACRM and Research

  37. Aging with Brain Injury Current Update • The typical respondent: • 45.2 years old • Injured at age 27.5 • Male (77%) • 5’8” tall • 203 lbs. • Not overly concerned about/dissatisfied with health status

  38. Aging with Brain Injury – Cause of Injury

  39. Aging with Brain Injury – Racial Distribution • Under represents statistical race data • Influence of funding mechanisms and relationship with healthcare system

  40. Aging with Brain Injury -Marital Status

  41. At Time of Injury: 86% of all survey respondents resided in a private residence Current Status: 33% reside in a private residence 44% reside in a program community site 19% reside in a rehabilitation site, post-acute or residential Aging with Brain Injury -Residential Status

  42. At Time of Injury 37% Parents 24% Spouse 21% Alone 1% Other Family 9% Roommates 3% Partner 4% Other Current 48% Residents 22% Alone 13% Spouse 6% Parents 4% Friends 2% Partner 1% Other Aging with Brain Injury -Primary Person(s) in Household

  43. Aging with Brain Injury -Educational Status

  44. Aging with Brain Injury -Employment Before & After

  45. Aging with Brain Injury -Occupations • Occupations prior to injury and currently are distributed among various types, with a number of students preparing for work at time of injury • Current participants have over-representation of unemployed, responding not applicable or unknown re: occupation (61%)

  46. Aging with Brain Injury -Social Integration

  47. Social Visits and Phone Calls • Correlated (p <.05) with: • Each other • Increased alcohol use • Higher education • Fewer days in 24-hour care setting • Expressed concerns about work • Not significant re: perceived health

  48. Aging with Brain Injury - Funding

  49. Aging with Brain Injury -Primary Reported Health Problems • Chronic pain 17% • Ambulation related 16% • Musculoskeletal 14% • Hypertension 14% • Sensory 10% • Allergy/autoimmune; Cognitive; GI; Incontinence related; Neurobehavioral; Respiratory; Seizure related all 8-9%

  50. Aging with Brain Injury -General Health Rating

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