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? : 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?
Saturday I attended a funeral . . . : 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.
Why her? By Erma Bombeck (as read at Krystal’s funeral) : 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."
The Worst Question : The Worst Question How long did it take you to recover?
My Life then . . . : 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.
Denial Isn’t Always Bad : 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
My life now . . . : My life now . . . “Her brain is broken”
I’m hungry
Housework/chores
Staff reminders
Fatigue
Always wondering if I’m not “aware”
Reading
My friends with injuries . . . : 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
We think . . . : 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
Aging and Changes : Aging and Changes Competency
Physical Abilities/needs
Developmental Stage Differences
Adolescence
Menopausal
Support Changes
Aging Parents/siblings
Spouse/Significant Other
Children
Changes in funding
Competency Changes : 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
Asset Development & Management : Asset Development & Management New programs to reduce disincentives to save & invest through the IRS
“Making Work Pay”
-Wisconsin’s proposed pilot project
Can things get Better 25 years later? : 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.
Brain Care : 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
Thank You! : 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.
I hope we all can share our experiences and find a common purpose within BIA : 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.
Slide18 : Aging with Brain Injury Long Term Issues Task Force
Brain Injury – Interdisciplinary Special Interest Group (BI-ISIG)
Aging with Brain Injury: Long-Term Outcomes & Comparisons to SCI and Amputation : 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
Brain Injury, Aging and the L.T.I.T.F., B.I.-I.S.I.G., A.C.R.M. : 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
Brain Injury, Aging and the L.T.I.T.F., B.I.-I.S.I.G., A.C.R.M. : Brain Injury, Aging and the L.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
Brain Injury, Aging and the L.T.I.T.F., B.I.-I.S.I.G., A.C.R.M. : Brain Injury, Aging and the L.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
Aging with Brain Injury : 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
The Graying of America : 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
The Graying of Brain Injury : 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)
Aging with Brain Injury Issues from 1998 : 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
Slide27 : Aging & Brain Injury Comparison Memory impairment & slower new learning
Gait & balance problems
Ataxia
Decreased sensorium
Diminished executive functions
Reduced appetite and libido
Slide28 : 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.
Slide29 : 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
Recent Long-Term Studies : 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
Recent Long-Term Studies Cont’d : 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
Slide32 : 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
Slide33 : 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)
Slide34 : 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
Slide35 : 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
Slide36 : 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
Aging with Brain Injury Current Update : 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
Aging with Brain Injury – Cause of Injury : Aging with Brain Injury – Cause of Injury
Aging with Brain Injury – Racial Distribution : Aging with Brain Injury – Racial Distribution Under represents statistical race data
Influence of funding mechanisms and relationship with healthcare system
Aging with Brain Injury - Marital Status : Aging with Brain Injury - Marital Status
Aging with Brain Injury - Residential Status : 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
Aging with Brain Injury - Primary Person(s) in Household : 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
Aging with Brain Injury - Educational Status : Aging with Brain Injury - Educational Status
Aging with Brain Injury - Employment Before & After : Aging with Brain Injury - Employment Before & After
Aging with Brain Injury - Occupations : 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%)
Aging with Brain Injury - Social Integration : Aging with Brain Injury - Social Integration
Social Visits and Phone Calls : 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
Aging with Brain Injury - Funding : Aging with Brain Injury - Funding
Aging with Brain Injury - Primary Reported Health Problems : 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%
Aging with Brain Injury - General Health Rating : Aging with Brain Injury - General Health Rating
Aging with Brain Injury - Differences in Health Perception : 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
Aging with Brain Injury - Seizures : 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
Aging with Brain Injury - Health Behaviors : 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?
Slide54 : Table 1. Body Mass Index (BMI) of BI-ISIG ACRM Survey Participants
Slide55 : Table 2. Weight Classification of BI-ISIG ACRM Survey Participants
Slide56 : Table 3. Hypertension among BI-ISIG ACRM Survey Participants
Aging with Brain Injury - Prevention and Wellness : 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
Physical Health Maintenance : Physical Health Maintenance Last doctor’s appointment – 147 days (SD= 225)
Last physical – 257 days (SD= 512)
Complete recommended tests based on age and gender - <15%
Aging with Brain Injury – Wellness and Health Activities : 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%
Major Disabling Injuries : Major Disabling Injuries Comparison of Traumatic Amputation and Spinal Cord Injury long term outcome data
Traumatic Amputation : 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)
Traumatic Amputation : 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
Amputation vs. salvage : 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
Spinal Cord Injury : 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
Spinal Cord Injury : 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%)
Spinal Cord Injury : 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
Gender & Aging with SCI : 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
SCI 20+ year studies : 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
SCI 20+ year follow-up : 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
SCI – High Tetraplegia : SCI – High Tetraplegia Injury of late adolescents/young adults
N=128
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
SCI – Medical Issues McKinley et.al., 1999; n= 6,776 to 500 at year 20 : 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%
SCI – Bowel & Bladder : 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
SCI - Pain : 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
SCI, Psych and QOL : 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;
10 Rules for Successful Aging (Aravich & McDonnell, 2005) : 10 Rules for Successful Aging (Aravich & McDonnell, 2005) Take care of the heart
Cardiovascular risk factors are also Alzheimer’s disease risk factors – diabetes, hypertension, adverse lipid profile and obesity
Early diagnosis and treatment of cardiac risk and disease
10 Rules for Successful Aging (Aravich & McDonnell, 2005) : 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
10 Rules for Successful Aging (Aravich & McDonnell, 2005) : 10 Rules for Successful Aging (Aravich & McDonnell, 2005) Activate the brain
“Neurons that fire together, wire together”
Cognitive stimulating activities protect against Alzheimer’s Disease
Value of therapies involving the arts, Clubhouse models and hobby development
10 Rules for Successful Aging (Aravich & McDonnell, 2005) : 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
10 Rules for Successful Aging (Aravich & McDonnell, 2005) : 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 Alzheimer’s Disease
Mental illness reduces quality of life and may decrease cognition, activity level, wellness activities, social integration
10 Rules for Successful Aging : 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.
10 Rules for Successful Aging : 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
10 Rules for Successful Aging : 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
10 Rules for Successful Aging : 10 Rules for Successful Aging Form advocacy and professional partnerships
Forming relationships among the brain injury, behavioral health and Alzheimer’s groups
Overlapping issues include:
Research needs End of life issues
Lack of services Guardianship
Respite care Family support
Social isolation Stigma
10 Rules for Successful Aging : 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
Thank You – for more info: : Thank You – for more info: Tina M. Trudel, PhD
Lakeview
Neurorehabilitation Center
244 Highwatch Road
Effingham Falls, NH 03814
1-800-473-4221
ttrudel@lakeview.ws