Aging

1
Aging Brain InjuryCoping 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 Krystals
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 Isnt Always Bad

• I was a college student!
• I realized I wouldnt 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
• Im hungry
• Housework/chores
• Staff reminders
• Fatigue
• Always wondering if Im 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
Competency Changes

• 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
• -Wisconsins proposed pilot project

14
Can things get Better 25 years later?

• 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.

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
Aging with Brain Injury Issues from 1998

• 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

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 Contd

• 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
  Alzheimers 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)
• 58 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
Aging with Brain Injury -Residential Status

• 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

42
Aging with Brain Injury -Primary Person(s) in
Household

• 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

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 lt.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
51
Aging with Brain Injury -Differences in Health
Perception

• Participants with Seizures
• Negative perceptions of current health BUT
• Do not expect health to get worse
• Participants who Consume Alcohol (but not
  significant for Smokers)
• Positive perceptions of current health BUT
• Expect health to get worse

52
Aging with Brain Injury -Seizures

• More participants report anti-seizure medication
  use than report having had seizures
• Possibility of anti-seizure prophylaxis or
  behavioral intervention

53
Aging with Brain Injury -Health Behaviors

• Trends with smoking and drinking
• Hypertension
• Obesity
• Less health satisfaction
• Less wellness behavior
• More likely to do both
• Question underestimates?

54

Table 1. Body Mass Index (BMI) of BI-ISIG
ACRM Survey Participants
   
55
Table 2. Weight Classification of BI-ISIG
ACRM Survey Participants
     
56
Table 3. Hypertension among BI-ISIG ACRM
Survey Participants  
 
57
Aging with Brain Injury -Prevention and Wellness

• Generally positive regard for physician
  helpfulness in maintaining health
• Wellness activities, regardless of type, appear
  associated with good health health perceptions

58
Physical Health Maintenance

• Last doctors appointment 147 days (SD 225)
• Last physical 257 days (SD 512)
• Complete recommended tests based on age and
  gender - lt15

59
Aging with Brain Injury Wellness and Health
Activities

• None Reported 28
• Traditional Interventions Only 37
• PT, Gym, Walking, Meds,
• Quit Habit, Dieting, Therapy, etc.
• Alternative Interventions Only 10
• Herbs, Supplements, Yoga, Clubs,
• Chiropractic, Meditation, Massage, etc.
• Combined Interventions 25

60
Major Disabling Injuries

• Comparison of Traumatic Amputation and Spinal
  Cord Injury long term outcome data

61
Traumatic Amputation

• Comparative Long-term Outcome
• 40-50 years post-injury life-span
• 80 male
• 75 Caucasian
• 32 years at time of injury range
• Transtibial most common
• MVA primary cause of injury
• (car motorcycle)

62
Traumatic Amputation

• 75 require occupation change
• 50 end up in lower-paying job
• 58-90 return to work
• Half report physical problems related to the
  amputation
• 25 bothered by pain 22 severe
• Pezzin, Dillingham MacKenzie, 2000

63
Amputation vs. salvage

• 24-84 months post-op, Sickness Impact Profile
  worsened, with 65 less favorable than general
  population
• Outcomes were similar between lower limb amputees
  and those with limb salvage/reconstruction
• McKenzie et al., 2005

64
Spinal Cord Injury

• 7-10,000 annually
• MVA, violence, sports and falls
• Survival after first year following high
  tetraplegia is 60 at 15 years
• Hall et. al., 1999

65
Spinal Cord Injury

• Outcome improves with lower level of injury and
  incomplete injury
• WWI 80 of soldiers with SCI died within the
  first two weeks
• Survival has improved dramatically for injuries
  resulting in high tetraplegia (17.5)

66
Spinal Cord Injury

• 56,800 for average 16 days acute care
• 95,000 annually for first two years
• 1,713,267 lifetime for 25 year-old with high
  tetraplegia
• Meyers, Andresen
• and Hagglund, 2000

67
Gender Aging with SCI

• 60 men and 60 women compared
• Women aging - accelerated
• Men aging - complicated
• Women report greater pain, fatigue,
  transportation skin problems
• Men report greater health, diabetes and adaptive
  equipment problems
• Increasingly traditional gender roles with aging
• McColl et al., 2004

68
SCI 20 year studies

• Improved adjustment in many areas
• Problem areas satisfaction with sex life,
  health issues, fewer visitors, more medical
  needs, more days hospitalized, more pressure
  ulcer, increasing needs for suports.
• Best predictor of future problems was the
  presence of earlier problems
• Charliffe et al., 2004 Krause Broderick, 2005

69
SCI 20 year follow-up

• 352 volunteer participants
• Need for more help with ADLs 32
• At least 1 medical complication 85
• Constipation 48
• Bowel accidents 42
• Pressure ulcers 39
• Liem et al., 2004

70
SCI High Tetraplegia

• Injury of late adolescents/young adults
• N128
• Almost 20 years post 85 male
• Hours PCA Ind 64.74 Vent 135.25
• Unpaid Ind 31.20 Vent 10.84
• Over 90 live in private home
• 22 married 25 employed
• Hall et. al., 1999

71
SCI Medical Issues McKinley et.al., 1999 n
6,776 to 500 at year 20

• Develop Complication Year 10 Year 20
• -Abnormal Renal Tests 14.7 25.9
• -Atelectasis/Pneumonia 2.3 1.7
• -Autonomic Dysreflexia 10.6 17.6
• -Deep Vein Thrombosis 0.7 0.7
• -Fracture-long bone 1.3 2.5
• -Pressure Ulcers 23.3 29.4
• -Pulmonary Embolus 0.2 0.0
• -Renal Calculi 2.3 9.4

72
SCI Bowel Bladder

• 52 discharged on intermittent cath
• 14 indwelling urethral catheter
• Indwelling catheter higher CA rate
• Groah et. al., 2002
• Constipation, evacuation difficulty, fecal
  incontinence- abdominal emergencies may cause up
  to 10 of deaths
• Diet, medication, equipment, schedule
• Stiens, Biener Bergman and Goetz, 1997

73
SCI - Pain

• 18-63 either musculoskeletal, neuropathic or
  both 1/3 severe
• 25 have initial onset 10 years post
• Barrett et. al., 2003
• 50 develop upper extremity pain from pushing a
  wheelchair
• Pain adversely impacts activity QOL
• Widerstrom-Noga et. al., 2002

74
SCI, Psych and QOL

• QOL related to younger, paraplegia, married and
  longer duration, female, employed, educated,
  socially integrated
• Putzke et. al., 2002
• High rates of depression, social withdrawal,
  self-endangerment, anxiety and suicide across
  various studies interactions with health and
  ADLs
• Kennedy Rogers, 2000 Krause et. al., 1997
• Krause, Kemp Coker, 2000

75
10 Rules for Successful Aging (Aravich
McDonnell, 2005)

• Take care of the heart
• Cardiovascular risk factors are also Alzheimers
  disease risk factors diabetes, hypertension,
  adverse lipid profile and obesity
• Early diagnosis and treatment of cardiac risk and
  disease

76
10 Rules for Successful Aging (Aravich
McDonnell, 2005)

• Exercise the body
• Protects against heart disease, cancer and stroke
• Improves respiratory fitness
• Improves balance and reduces fall risk
• Elevates mood
• Benefits cognitive functioning
• Reduces risk of DVT and emboli

77
10 Rules for Successful Aging (Aravich
McDonnell, 2005)

• Activate the brain
• Neurons that fire together, wire together
• Cognitive stimulating activities protect against
  Alzheimers Disease
• Value of therapies involving the arts, Clubhouse
  models and hobby development

78
10 Rules for Successful Aging (Aravich
McDonnell, 2005)

• Feed the brain and body
• Avoid sugar, highly refined carbs, saturated fats
  and trans-fats
• Increase whole grains, fresh fruits/veg for
  antioxidant and vitamin benefits
• Mediterranean type diet
• Omega 3 fatty acids and problems with toxic fish
  flax, walnuts, soybeans, canola oil

79
10 Rules for Successful Aging (Aravich
McDonnell, 2005)

• Promote behavioral health
• There are 51 more suicides than homicides in the
  United States
• Depression rates are higher after TBI
• Depression is a risk factor for Alzheimers
  Disease
• Mental illness reduces quality of life and may
  decrease cognition, activity level, wellness
  activities, social integration

80
10 Rules for Successful Aging

• Avoid tobacco, alcohol drug abuse
• Alcohol interferes with TBI recovery
• Alcohol is a risk factor for dementia
• Tobacco is a major risk factor for heart disease,
  stroke, cancer, COPD and emphysema
• Benefits of phytochemicals found in wine can also
  be attained through diet rich in fresh fruits,
  vegetables and whole grains.

81
10 Rules for Successful Aging

• Prevent social isolation
• Social factors impact neural functions in animal
  models (rodent studies)
• Animal models also demonstrate increased rates of
  dementia in socially isolated mice
• Social enrichment exercises the brain and body
• Again, supports Clubhouse models, social groups,
  community service needs

82
10 Rules for Successful Aging

• Protect the brain
• Prevent injuries through helmet and protective
  equipment use
• Second impact syndrome educate and avoid
• Fall prevention for older adults
• Protection of the brain also includes sleep
• Sleep deprivation impairs impulse control,
  cognition, mood, attention, immune function and
  abstinence from drugs/alcohol

83
10 Rules for Successful Aging

• Form advocacy and professional partnerships
• Forming relationships among the brain injury,
  behavioral health and Alzheimers groups
• Overlapping issues include
• Research needs End of life issues
• Lack of services Guardianship
• Respite care Family support
• Social isolation Stigma

84
10 Rules for Successful Aging

• Look for greatness in each person
• The human brain has about as many neurons as
  there are stars in the Milky Way (100 billion)
• There are 10x as many glial support cells
• Each neuron makes connections with thousands of
  other neurons
• These patterns of connection change everytime we
  experience, think, learn or act

85
Thank You for more info

• Tina M. Trudel, PhD
• Lakeview
• Neurorehabilitation Center
• 244 Highwatch Road
• Effingham Falls, NH 03814
• 1-800-473-4221
• ttrudel_at_lakeview.ws