TBI and the Caregiver. TBI and the Caregiver. The Role of the Caregiver after Traumatic Brain Injury TBI TBI DR. CHIARAVALLOTI HAS NO

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1 The Role of the Caregiver after Traumatic Brain Injury Nancy D. Chiaravalloti, Ph.D. Director of Neuroscience and Neuropsychology Director of Traumatic Brain Injury Research DR. CHIARAVALLOTI HAS NO DISCLOSURES TO REPORT Kessler Foundation Associate Professor of Physical Medicine and Rehabilitation Rutgers, New Jersey Medical School TBI TBI Incidence: 1.4 million per year 90,000: long term impairments and disabilities 17% have moderate to severe disability Persisting deficits in everyday functioning CDC: 5.3 million Americans currently have a longterm or lifelong need for help to perform activities of daily living as a result of TBI Primary custodians family TBI Result changes to the family system Family members often have to assume the caregiving role Assist with physical, cognitive, financial and leisure activities TBI and the Caregiver The impact of TBI on a caregiver is often overlooked due to the immediate treatment needs of the individual with the TBI Caregiver studies have shown Significant levels of emotional distress 3 months post-injury to 5 years post-injury Majority of caregivers report unhealthy family functioning Both cause and effect of caregiver distress TBI and the Caregiver Family Members also report Increased social isolation over time Shrinking social network Decreased satisfaction with available social support 1

2 TBI and the Caregiver Caregiver burden and stress Associated with negative outcomes in individuals with TBI Poorer functional ability Poorer cognition Decreased psychosocial well-being Less social integration Poorer work productivity and employability Poorer adjustment to disability TBI and the Caregiver The overall result: poor quality of life For caregivers and individuals with TBI Negatively impacts recovery Successful rehabilitation requires family participation and involvement Individuals with TBI whose family systems experience high stress Lower cognitive and physical functioning at hospital admission Longer lengths of hospitalization Less satisfaction with their rehabilitation program Status of Our Knowledge We know that caregivers are affected by providing care for an individual with TBI We DO NOT know Aspects of the caregiving role that contribute to decreased health-related quality of life Quality of Life reflects how mental, physical, or social health influence overall health status No way to understand this in the caregiver Lack of means of measuring and understanding the caregiver Why Do We Know So Little? We use generic measures of Quality of Life evaluate emotional distress do not capture emotional distress specific to the caregiving role Clear need for a Quality of Life measure that is targeted for caregivers of individuals with TBI Caregivers are Being Noticed Civilian population Recent increase in research treating caregivers of persons with TBI NIDRR now funding projects examining coping, appraisal, and social support in determining caregiver distress after TBI Caregivers are Being Noticed Military Population Congress mandated the development of a family caregiver curriculum United Health Foundation released the 2010 Caregiver of Veterans Report negative sequelae for caregivers of veterans marital strain, feelings of isolation, emotional distress, physical strain, burden... Congress mandated that family members of a member incurring TBI participate in a 15-year longitudinal study 2

3 What are we doing about this? In collaboration with the University of Michigan, we have developed a conceptual framework to help us understand the caregiver Will provide the basis for a new quality of life measure for use in caregivers of individuals with TBI 9 focus groups 55 caregivers Michigan, New Jersey, and Texas SOCIAL HEALTH (1) Companionship/Support You don't want to do anything with that person, because you just feel like they hate you Role Changes you're taking care of somebody that basically cannot take care of themselves, so you tend to lose it's not your life anymore SOCIAL HEALTH (2) Finances Financially for us it's been absolutely devastating. I'm a lawyer, but I'm a sole practitioner, and I was out of my office for a year and a half Community Life/Recreation This weekend my husband and I we went to a marriage conference - that s the first time we ve done anything in almost seven years now Vocation I had a business. And I went from making an extremely good income to not working at all, to taking care of her SOCIAL HEALTH (3) Social Isolation The patient is actually isolated but then you become isolated too Stigma Even people around you don't understand what it takes Abuse My son gets angry with himself because one time, only one time, but that s when he was real bad, you know, he beat me EMOTIONAL HEALTH (1) Caregiver Strain you get to this point where you don't want to think about anymore because the situation just seems impossible Caregiver-specific Anxiety You're scared for them, because they don't know how to decipher good from bad anymore Anger And the frustration the basic frustration is what can I, we as the care providers, what can we do? 3

4 EMOTIONAL HEALTH (2) Feeling Trapped something I m learning to cope with is knowing I just cannot get in the car and takeoff Positive Emotions It's made me much more empathetic for other people and what they're going through Depression to see him the way he is now it breaks your heart and it puts you more into a depressive stage EMOTIONAL HEALTH (3) Emotional Roadblocks And you think you're going crazy. Really, I think sometimes, am I going crazy? Is it me? Guilt how do you deal with the fact that you don t like them General Anxiety I feel like I'm always nervous Spirituality/Religion I start praying, and thinking God, help me to keep going...that's how I keep moving on PHYSICAL HEALTH (1) Health Behaviors I went back to smoking, after not smoking for 5 years Medical Care/Medication I have carpal tunnel on both hands. I'm supposed to get surgery, because you see this hand, I really can't even open it that well. And I can't even do that, because who's going to take care of my son? Sleep Difficulties I don't sleep. If I sleep three hours a night, that's a lot PHYSICAL HEALTH (2) Fatigue I feel like more tired, like every day Sexual Functioning you don't want to have sex Weight Gain/Loss I've gained like 100 pounds Pain I hurt my shoulder because I was trying to help him so that he could move his arm GI Complaints I've developed IBS because of the stress COGNITIVE HEALTH (1) Memory I don t remember like I used to Attention I start losing my concentration. I can't function as well Mental Clarity Very foggy. I'd forget appointments. I'd forget where I was COGNITIVE HEALTH (2) Executive Functioning The higher the stress level, the less your ability to reason through and figure out a solution Language/Comprehension I used to be very, very sharp, very quick, very articulate... And it's all gone 4

5 FEELINGS OF LOSS Related to the person with the injury I have a hard time seeing my son the way he is, because I know what he used to be Related to changes due to the caregiver role Well, you have to put your life on hold. You don't want to. You just do what you have to do, step up to the plate. Impact of Caregiver Stress Affects caregiver mental, social and physical health Emotional health concerns are a huge issue anxiety, depression, stress, and anger In focus groups, much time was spent on social concerns social isolation, concerns with social support Consistent with the existing literature Impact of Caregiver Stress Noting additional areas of importance for caregivers of persons with TBI guilt role changes i.e., dealing with the stress of feeling like a spouse one minute and a parent the next feeling trapped in the caregiver role feelings of loss related to: the individual with the TBI (and that individual s future) their own future KIR and KF Programming Resource for Consumers and Caregivers Consumer Conferences 3 per 5-year cycle Held at KIR Conference Center Speakers selected from across the nation Disability advocacy, Yoga, Interpersonal relationships / intimacy, cognitive issues Panels Forum for discussion, education and peer support KIR and KF Programming Resource for Consumers and Caregivers KIR and KF Programming Resource for Consumers and Caregivers Consumer Newsletter 2 published per year Distributed to all consumer son our mailing list Columns discuss Successes Challenges Resources Research 5

6 A New Study with Caregivers Funded by the NJ Commission on TBI Research Provides new resources for caregivers Caregiver specific support groups Tip cards Examine impact of the additional resources Quality of life Emotional functioning Nancy D.. Thank You 6