Total Health for Chronic

Moderate-to-Severe Brain Injury:

Maximizing Function and Quality of Life through

Community-Based Physical, Cognitive and Social

Programming

Presenters:

Laura Lorenz, PhD, MEd - Director Research & Education, Supportive Living

Peter J. Noonan, MSA - Executive Director, Supportive Living

Therese M. O’Neil-Pirozzi, ScD, CCC-SLP - Northeastern University, Spaulding/Harvard TBI Model System, and Supportive Living Research Council

Total Health is a series of health and wellness programs created

by Supportive Living, along with many collaborating individuals and

organizations, to improve life for survivors of brain injury.

These collaborating partners are all members of the SLI Brain Injury

Research Council and have created, tested, researched and studied

the effectiveness of these physical, cognitive and social fitness

programs.

The objective of this work is to share evidence based positive

outcomes of health and wellness programs that can be replicated in

an effort to help serve more survivors of brain injury.

Total Health program partners include:

• Advocates, Inc.

• Access Sport America

• The Center for Balance, Wellness and Mobility

• Krempels Center

• The Real School of Music

Total Health program research has been

sanctioned by (IRB approved):

• Brandeis University

• Northeastern University

• MCPHS University

• Some of the studies referenced throughout this presentation have been done by us and some by others.

• We have provided “recommended readings” and “references” to support the concept of a “Total Health” approach to programming for chronic moderate to severe brain injury.

• We hope they will be useful to you as you consider using or developing Total Health programming for people with chronic brain injury and advocate for participation, collaboration and funding.

Total Health Internship relationships include:

• Boston University

• Brandeis University

• Gordon College

• Merrimack College

• Northeastern University

• University of Massachusetts Lowell

Supportive Living SLI was formed in 1991 with a mission to raise the quality of life for survivors of brain injury. To achieve this mission SLI:

• Develops appropriate, affordable, supportive housing

• Provides life-long physical, cognitive and social fitness through “Total Health” programming

• Fosters research aimed at improving the lives of those affected by brain injury

Affordable Housing SLI has developed 4 residential communities providing affordable housing and support services for survivors of brain injury.

• Warren House – 1997, 16 residents

• McLaughlin House – 2002, 8 residents

• Douglas House – 2008, 15 residents

• Old Farm Rockport – 2014, 7 residents

Brain Injury Wellness Center and Programs

• Established 2012

• Physical Fitness study and programming – 2013

• Cognitive fitness study – 2013

• Social fitness studies – 2011 and 2014

• Center for Balance, Mobility and Wellness – satellite physical fitness program – established 2014

• Horticulture Center and program – 2015

• Summer Camp – 2016 - combining physical, cognitive, social fitness & other therapeutic offerings

Total Health from Supportive Living

Health and Wellness Programs for Survivors of Brain Injury

• Total Health is a comprehensive, holistic approach to meet the unique needs of people living with chronic brain injury.

• Total Health approaches the brain and body as integrated and inseparable, and offers complementing physical, cognitive and social fitness programs to help improve life for survivors of brain injury.

Total Health Proven Programs

• Physical Fitness

• Horticulture Therapy

• Music Appreciation

• Creative Arts

• Cooking and Nutrition

• Social Activities

• Support Groups

• Game clubs

• and more

Physical Fitness Programming

Fitness Function Fun

Physical Fitness Programming Exercise is Medicine

• Recovery from Brain Injury is a life-long process.1,2

• Research has proven, over and over, that a consistent physical exercise program after the injury will promote recovery in all aspects of life.3

Fitness Function Fun

Exercise is Medicine A Successful Exercise Program Requires 4,5

• Participants have Realistic Goals

• Staff have Positive Attitudes

• Interns Bring Enthusiasm

• The Group Provides Encouragement

• Everyone Must Have Fun

Fitness Function Fun

Exercise is Medicine An Effective Exercise Program Needs 6

• 25 Minutes Cardio

• 25 Minutes Strength and/ or Stretch

• 3 Sessions a Week

• 40 Weeks a Year

Fitness Function Fun

Exercise is Medicine Benefits of a Successful Program 3,7

• Health

• Function

• Cognition

• Emotion

• Social

• Quality of Life

Fitness Function Fun

All of these benefits can be measured

Exercise is Medicine Health Benefits

• Cardiovascular Condition 8,9

• Exercise Capacity 10

• Physical Function 11

• Weight & Blood Pressure Management 12,13

• Bone Density 14

• Strength & Flexibility 15

Fitness Function Fun

Exercise is Medicine Functional Improvements 4,5,6

• Dressing

• Balance

• Walking

• Personal Hygiene

• Eating (from your own garden)

Fitness Function Fun

Exercise is Medicine Cognitive Improvements 3

• Attention / Focus

• Time Management

• Processing Speed

• Problem Solving

• Task Initiation

Fitness Function Fun

Exercise is Medicine Emotional Benefits: 4,5

• Improves Mood

• Enhances Self- Esteem

• Builds Confidence

• Reduces Anxiety and Depression

• Have Fun

Fitness Function Fun

Exercise is Medicine Social Benefits 4,5

In a gym / group setting • Active in the

Community

• Reduced Isolation & Loneliness

• Create New Friends

• Develop New Social Group

Fitness Function Fun

Exercise Programs Need to Be

Assisted, Accessible, Affordable • Assistance - a majority of survivors of moderate to severe brain injury will

need some level of assistance for life. It may be physical, cognitive, memory, cueing, behavioral and other.

• Accessible - specialized, or adaptive equipment is often needed for participants, from raised garden beds, to fitness equipment. Facilities, homes, restaurants, banks – these all need to be accessible as well.

• Affordable - most survivors living with chronic brain injury were injured when younger and have no financial means, or injured later in life and all assets have been depleted due to the high cost of care. Very few have the financial ability to pay for the care and programming they need and deserve.

Fitness Function Fun

Exercise is Medicine – Reality: • Exercise is medicine, and we should provide it as often as

possible.

• Unfortunately, providing exercise programs for many survivors of brain injury is very difficult.

• However, creative collaboration with interested entities, local universities, and others, can make this medicine available to many more people.

• Let’s get creative. Fitness Function Fun

Cognitive Fitness Programming

What Is Cognition?

“Cognition is a group of thinking abilities

(for ex: attention, memory,

and problem solving)

that work together and enable an individual

to be meaningfully productive.” (T. O’Neil-Pirozzi, 2017)

What Is Cognitive Fitness?

“Cognitive fitness is the health

of an individual’s thinking abilities

and that person’s related ability

to complete functional activities

and maintain a healthy quality of life.” (T. O’Neil-Pirozzi, 2016)

What Is Cognitive Fitness Programming?

…any activity a person engages in

to ‘exercise their brain’/

‘keep their brain in shape’ (T. O’Neil-Pirozzi, 2016)

Examples of Cognitive Fitness

Programming1,2

• Computer thinking games

• Crossword puzzles

• Hobbies/Leisure activities

• Physical exercise

• Socialization

• Sudoku

Is There Evidence that Cognitive Fitness Programming Works?

The jury is still out…2,3,4,5

• Neuroplasticity post-brain injury

• Generalizability of program-based improvement

• How to measure?

How to Measure if Cognitive Fitness Programming Works? 2,3,4,5

• Neurocognitive test scores

• Quality of life/Satisfaction with life

• Life function/Life participation

• ???

Challenges to Cognitive Fitness Outcomes 2,6,7

• Cost

• Discipline

• Motivation

• Time

Cognition Is Part Of All Activities

I’ve just started a new study exploring benefits of different activities on cognitive

fitness - stay tuned!

Social Fitness Programming

Social Fitness Programming: A Focus on Arts and Interactions

Creative Arts programming is known to:

• Enhance engagement1

• Enrich communication2,3

• Facilitate conversation, reflection and focus4,5

• Enhance mood and emotion (and reduce pain,

stress) 6,7,8

• Increase understanding of oneself and others8

• Alter behaviors and thinking patterns8

• Have positive effects on health9

Types of Creative Arts Programming

• Visual Arts help people express experiences difficult to put into words9

• Music therapy calms neural activity in the brain, reduces anxiety and restores immune system function10,11,12,13

• Expressive writing can improve physical health, reduce healthcare visits and improve immune system function14,15

Group Activities Create art that tells a group story16 and encourages social interaction – and interaction with the knowledge produced!17

Almost everyone can make a small picture that becomes part of a group picture...

Individual Activities Create art that reflects and communicates something of importance to the individual 17

Even people with serious impairments can create with support.

Let participants lead the process and make decisions about topic, colors, content, form as you collaborate together.

They want to do more – so let them!

Evaluating Outcomes

• Standardized measures18

• Focus group discussions

• Written evaluations

• Individual interviews

• Physical health

• Brain injury function19

Challenges to Outcomes

• Need for one-to-one supports • Inability to focus on task • Uneven participation (scheduling conflicts) • Comorbidities (anxiety, pain) • Inconsistent implementation

Challenge for facilitators... Finding a balance between control and support. Give people choices!

A Story.... This participant increased his Satisfaction with Life Scale (SWLS) scores by 33% (4 points) between pre-test and post-test.

You don’t have to go home, you can stay here! You can get in this bathroom at a local medical facility, but you can’t get out. Once you are inside, you are at the mercy of someone else to come let you out. I use paper towels or something as a door jam, but where you have a brain injury it’s easy to forget. Bathrooms should all have handicapped buttons. Bathrooms are something everyone needs. Think “community” before you design and build!

In sum...

• Creative Arts programming requires investments – in therapists, supplies, interns

• Blending group and individual activities means being person-centered

• To understand return on investment, evaluation is needed

• Outcomes can be improvements in emotional health, social health, physical health, cognitive health

• Consistent opportunities throughout the year may build potential for improved outcomes over time Creative Arts = Expressive Arts Whatever name you choose, the goal is similar: help people to create along with others – and enjoy the process and interactions.

Total Health - Summary:

• Research has proven that the chances of leading a healthy life, with or without a brain injury, will improve if you: Exercise regularly - Maintain a healthy diet - Spend time with friends - Engage in new activities -Laugh, have fun.

• Unfortunately for many survivors of brain injury these basic activities for a healthy life are limited. Many of the obstacles to these activities have been identified. The challenge is overcoming them.

• Our goal for Total Health is to find creative collaborative ways to provide these opportunities. Our overall objective is to find ways to replicate Total Health programs for as many survivors as possible.

Physical Fitness

Cognitive Fitness

Social Fitness

Total Health

A Plea!

• We hope that this presentation inspires YOU to adapt this Total Health model to your clients and to help people with more severe injuries have better access to meaningful recreational activities.

• The result? People with chronic brain injury who have better access to quality programming will maintain and improve their overall health function and their quality of life.

Q & A

Some suggested questions/food for thought:

• What do you already have in place that is meeting the needs of community-based individuals with more severe injuries?

• What, if any, Total Fitness programming could you adapt to your clients?

• What types of supports could help your efforts?

There is much experience and knowledge in this room. Let’s be resources for each other!

Recommended Readings Exercise (Physical Fitness) • Hassett L, Moseley AM, Tate R, Harmer AR. Fitness training for cardiorespiratory conditioning after traumatic brain injury. Cochrane

Database System Review 2008;CD006123. • Saunders DH, Sanderson M, Brazzelli M, Greig CA, Mead GE. Physical fitness training for stroke patients. Cochrane Database System Review

2013;CD003316. • Charrette, AL, Lorenz, LS, Fong, J, O’Neil-Pirozzi, TM, Demore-Taber, M, Lamson, KS, Lilley, R. (2016). Pilot study of intensive exercise on

endurance, advanced mobility, and gait speed in adults with chronic severe acquired brain injury. Brain Injury, DOI:10.1080/02699052.2016.1187766. Published online 28 Jul 2016.

Cognitive (Cognitive Fitness) • Cicerone KD, Langenbahn DM, Braden C., et al. Evidence-based cognitive rehabilitation: updated review of the literature from 2003

through 2008. Archives of Physical Medicine and Rehabilitation, 2011;92:519-530. • Lebowitz MS, Dams-O’Connor K, Cantor JB. Feasibility of computerized brain plasticity-based cognitive training after traumatic brain injury.

Journal of Rehabilitation Research and Development, 2012;49:1547–1556. • O’Neil-Pirozzi TM, Hsu H. Feaasibility and benefits of computerized cognitive exercise to adults with chronic moderate-to-severe cognitive

impairments following an acquired brain injury: A pilot study. Brain Injury, 2016;1-9.

Expressive Arts (Social Fitness) • Boydell KM, Gladstone BM, Volpe T, Allemang B, & Stasiulis E. The Production and Dissemination of Knowledge: A Scoping Review of Arts-

Based Health Research. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research, 2012, 13(1). http://www.qualitative-research.net/index.php/fqs/article/view/1711/3328

• Lorenz, LS and Jon Chilingerian. Using visual and narrative methods to achieve fair process in clinical care. Journal of Visualized Experiments, 2011, 48, e2342, doi:10.3791/2342. http://www.jove.com/video/2342/using-visual-narrative-methods-to-achieve-fair-process-clinical

• Stuckey, HL and Nobel, J. The Connection Between Art, Healing, and Public Health: A Review of Current Literature. American Journal of Public Health 2010, 100(2), pp. 254-263. doi: 10.2105/AJPH.2008.156497

References – Physical Fitness 1. CDC (Centers for Disease Control and Prevention). Report to Congress on traumatic brain injury in the United States: Epidemiology and rehabilitation.

Atlanta, GA: CDC;2014. 2. Langlois JA, Rutland-Brown W, Wald MM. The epidemiology and impact of traumatic brain injury: a brief overview. The Journal of head trauma

rehabilitation. 2006;21(5):375-378. 3. Pawlowski J, Dixon-Ibarra A, Driver S. Review of the status of physical activity research for individuals with traumatic brain injury. Archives of physical

medicine and rehabilitation. 2013;94(6):1184-1189. 4. Lorenz L, Charrette A, Doucett J, O'Neil-Pirozzi T, Carmichael J. Barriers, supports and sustainability of exercise programming for adults with moderate-to-

severe brain injury: A qualitative exploration. under development. 5. Carmichael J, Chinn R, Lorenz L. "I feel better being active": Motivations to exercise among group home residents with chronic brain injury. under

development. 6. Charrette AL, Lorenz LS, Fong J, et al. Pilot study of intensive exercise on endurance, advanced mobility and gait speed in adults with chronic severe

acquired brain injury. Brain injury. 2016;30(10):1213-1219. 7. Langhammer B, Stanghelle JK, Lindmark B. Exercise and health-related quality of life during the first year following acute stroke. A randomized controlled

trial. Brain injury. 2008;22(2):135-145. 8. Hassett LM, Moseley AM, Tate R, Harmer AR. Fitness training for cardiorespiratory conditioning after traumatic brain injury. The Cochrane database of

systematic reviews. 2008(2):Cd006123. 9. Mossberg KA, Amonette WE, Masel BE. Endurance training and cardiorespiratory conditioning after traumatic brain injury. The Journal of head trauma

rehabilitation. 2010;25(3):173-183. 10. Bateman A, Culpan FJ, Pickering AD, Powell JH, Scott OM, Greenwood RJ. The effect of aerobic training on rehabilitation outcomes after recent severe

brain injury: a randomized controlled evaluation. Archives of physical medicine and rehabilitation. 2001;82(2):174-182. 11. Killington MJ, Mackintosh SF, Ayres M. An isokinetic muscle strengthening program for adults with an acquired brain injury leads to meaningful

improvements in physical function. Brain injury. 2010;24(7-8):970-977. 12. Decaria JE, Sharp C, Petrella RJ. Scoping review report: obesity in older adults. International journal of obesity (2005). 2012;36(9):1141-1150. 13. Carlson DJ, Dieberg G, Hess NC, Millar PJ, Smart NA. Isometric exercise training for blood pressure management: a systematic review and meta-analysis.

Mayo Clinic proceedings. 2014;89(3):327-334. 14. Giangregorio L, El-Kotob R. Exercise, muscle, and the applied load-bone strength balance. Osteoporosis international : a journal established as result of

cooperation between the European Foundation for Osteoporosis and the National Osteoporosis Foundation of the USA. 2017;28(1):21-33. 15. Hayes HA, Gappmaier E, LaStayo PC. Effects of high-intensity resistance training on strength, mobility, balance, and fatigue in individuals with multiple

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References – Cognitive Fitness

1. Jak AJ, Seelye AM, Jurick SM. Crosswords to computers: a critical review of popular approaches to cognitive enhancement. Neuropsychological Review. 2013;23:13–26. 2. O’Neil-Pirozzi TM, Hsu H. Feaasibility and benefits of computerized cognitive exercise to adults with chronic moderate-to-severe cognitive impairments following an acquired brain injury: a pilot study. Brain Injury, 2016;1-9. 3. Cicerone KD, Langenbahn DM, Braden C., et al. Evidence-based cognitive rehabilitation: updated review of the literature from 2003 through 2008. Archives of Physical Medicine and Rehabilitation, 2011;92:519-530. 4. Lebowitz MS, Dams-O’Connor K, Cantor JB. Feasibility of computerized brain plasticity-based cognitive training after traumatic brain injury. Journal of Rehabilitation Research and Development, 2012;49:1547–1556. 5. Owen AM, Hampshire A, Grahn JA, Stenton R, Dajani S, Burns AS, Howard JH, Ballard CG. “Putting Brain Training to the Test,” Nature. 2010;465:775-779. 6. Marin RS, Wilkosz PA. Disorders of diminished motivation. Journal of Head Trauma Rehabilitation. 2005;20:377–388. 7. Norcross JC, Mrykalo MS, Blagys M. Auld Lang Syne: success predictors, change processes, and self-reported outcomes of New Year’s resolvers and nonresolvers. Journal of Clinical Psychology. 2002;58:397–405.

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aphasia. Topics in stroke rehabilitation. 2007;14(1):72-84. 2. Colantonio A, Kontos PC, Gilbert JE, Rossiter K, Gray J, Keightley ML. After the crash: research-based theater for knowledge transfer. The Journal of continuing

education in the health professions. 2008;28(3):180-185. 3. Keen S, Todres L. Strategies for disseminating qualitative research findings: Three exemplars. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research.

2007;8(3):Art. 17. 4. Dyches T, Cichella E, Olsen S, Mandleco B. Snapshots of life: Perspectives of school-aged individuals with developmental disabilities. Journal of Continuing Education

in the Health Professions. 2004;28(3):180-185. 5. Oliffe JL, Bottorff JL. Further than the eye can see? Photo elicitation and research with men. Qualitative health research. 2007;17(6):850-858. 6. Gross J, Swartz R. The effects of music therapy on anxiety in chronically ill patients. Music Ther. 1982;2:43-52. 7. Pennebaker, JW. (1997). Writing about emotional experiences as a therapeutic process. Psychol Sci. 8(3):162-166. 8. VHA (Veterans Health Administration). (2015). Rehabilitation and Prosthetic Services: Recreation Therapy, Creative Arts Therapies.

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2006;34(2):134-141. 11. Mettner J. Creative medicine. Minnesota medicine. 2005;88(7):15-16. 12. Rohner S, Miller R. Degrees of familiar and affective music and their effects on state anxiety. J Music Ther. 1980;17:2-15. 13. Petterson M. Music for healing: the creative arts program at the Ireland Cancer Center. Alternative therapies in health and medicine. 2001;7(1):88-89. 14. Esterling BA, L'Abate L, Murray EJ, Pennebaker JW. Empirical foundations for writing in prevention and psychotherapy: mental and physical health outcomes.

Clinical psychology review. 1999;19(1):79-96. 15. McArdle S, Byrt R. Fiction, poetry and mental health: expressive and therapeutic uses of literature. Journal of psychiatric and mental health nursing. 2001;8(6):517-

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