Caregivers as Clients: Who s Caring for the Caregivers
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1 Caregivers as Clients: Who s Caring for the Caregivers Nancy Weber, MA, CBIS Neurologic Rehabilitation Institute, Brookhaven Hospital, Tulsa, OK
2 Housekeeping Please feel free to interrupt if you have comments or questions What happens here stays here confidentiality please Please be willing to share your experiences we will all learn more Please silence your cell phones
3 Learning Objectives: To identify caregiver demographics To recognize caregivers as clients To examine the roles & responsibilities of caregivers To understand the risks to caregivers health & satisfaction To explore the impact of caregivers wellbeing on the patients wellbeing To offer suggestions for improving caregiver support & assistance
4 Caregiver Demographics Unpaid family member, friend, neighbor 44 million people over age 18 40% are male Average age is 47 Working at least part time In need of support
5 With Brain Injury there is an Increased Survivability
6 Earlier medical intervention
7 but, shorter medical rehab
8 Individuals with greater disabling conditions being sent home sicker and quicker
9 17 days of acute medical care in 2012 vs. 57 days in 1990 for high moderate to severe injuries Ashley, M. Santa Clara Valley Brain Injury Conference, 2012
10 Occurance of Severe TBI: 50,000 to 75,000 people per year ⅓ to ½ of those will die
11 Cost of Severe TBI: $15-17 million over the course of a person s life
12 It s a Marathon Not a Sprint!
13 Community Neuro Rehab Study Community-based neurobehavioral rehabilitation
14 Age at injury: 36.33
15 Home support needs 75% requiring more than 2 hours/day of paid support
16 When the Unthinkable Happens
17 Every Survivor is a Miracle!
18 But as Time Goes By
19 The Feelings Come Exhaustion Anxiety Anger Sadness Guilt
20 Stages of Recovery
21 The Family s Initial Response Stage 1 One to Three Months Shock Hopeful, relieved Denial
22 What are the needs at this stage? Support from friends and family General information from nurses and doctors factual without too many details Listen
23 Adjusting Stage 2 Three to Nine Months Realization of the Situation Anger, Anxiety, Fear, Depression, Loss
24 What are the needs at this stage? Ongoing support More specific information Allow for venting anger, frustration, fear, loss
25 Annoyance Stage 3 Six to Twenty-Four Months Discouragement Depressed Reviewing the Information
26 What are the needs at this stage? Information about resources for brain injury Support groups for caregivers Validation of feelings
27 Exhaustion Stage 4 Ten to Twenty Four Months Realism sets in Less Time Spent with Loved One Grief
28 What are the needs at this stage? Counseling Social Support Time off
29 Sadness Stage 5 Twelve to Twenty Four Months Ambiguous Loss Accepting the New Normal
30 What are the needs at this stage? Expression of grief Family- Community-Based Interventions
31 Acceptance Stage 6 Two to Three Years Greater Understanding Accepting the Person as They Are Now From Patient Focus to Family Focus
32 What are the needs at this stage? New Social Networks Help with Daily Activities to Avoid Burnout Recognition
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34 Challenges Facing the Caregiver: Financial Social Psychological Physical
35 Financial Resources: Private Funding Insurance Medicaid Medicare Waiver Programs
36 Social Isolation: The Family The Caregiver The Patient Increased social support leads to decreased distress in caregivers. Ergh, Tanya C., et al. 2002
37 Psychological/Emotional Health of the Caregiver: Predictors of Caregiver Burden Global Handicap Level of Executive Function Signs of Caregiver Burden Depression Somatic symptoms Anxiety Substance abuse Bayen, Eleonore, MD, et al., 2013; Kreutzer, J., et al., 2009.
38 Physical Impact of Caregiving: Increased Health-Risk Behavior, i.e. smoking Sleep Disturbances Lower Immune Functioning Slower Wound Healing Increased Insulin Levels & Blood Pressure Increased Risk for Cardiovascular Disease Changes in Sexual Roles for Spouses Reinhard, Susan C., et al.,
39 Predictors of Success: Behavioral & Cognitive Function of Patient Premorbid Function Social Support Economic Status
40 Caring for the Caregiver: Caregiver as the client Individual as opposed to group Counseling One-to-one telephone calls Home visits
41 Caring for the Caregiver: Improve Confidence & Competence Home Care Team Problem Solving Strategies Safe Plan for Caregiver & Patient
42 Caregivers as Providers: Potentially Harmful Behaviors Abuse & Neglect Medication Errors Abandonment
43 Positive Consequences of Caregiving: Increased Mutuality Sense of Meaning Developing New Relationships
44 Assisting Caregivers Healthcare Providers Family & Friends Support Groups Caregiver Counselor Home Care Team
45 Areas of Vulnerability for Caregivers: Lack of Funding Lack of Facilities Lack of Social Support Lack of Therapeutic Services Lack of Understanding community, family, friends, professionals
46 Resources Academy of Certified Brain Injury Specialists, Brain Injury Association of America, Bayen, Eleonore, MD, et al. Predictors of Informal Care Burden 1 Year After a Severe Traumatic Brain Injury: Results From the PariS-TBI study. Journal of Head Trauma Rehabilitation, Vol. 28, No. 6, pp , Boss, Pauline, Ph.D., Ergh, Tanya C., Rapport, L. J., Coleman, R. D., Hanks, R. A. Predictors of Caregiver and Family Functioning Following Traumatic Brain Injury: Social Support Moderates Caregiver Distress. Journal of Head Trauma Rehabilitation, Vol. 17 (2), pp , 2002.
47 Gainer, R., Brown, T., Shields, D., Hernandez, D., (2001 ongoing). CNR outcome validation study. CNR, Des Moines, Iowa. Reinhard, Susan C., Given, B., Petlick, N.H., Bemis, A. Chapter 14. Supporting Family Caregivers in Providing Care, Patient Safety and Quality: An Evidence- Based Handbook for Nurses, April Russell, Debra, Ph.D. Chapter 7. Brain Injury: A Family Perspective, The Essential Brain Injury Guide, 4.0 edition, Academy of Certified Brain Injury Specialists, Brain Injury Association of America, 2009.
48 Questions? Comments?
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53 Synopsis Brain injury occurs when we least expect it and few people are prepared to take on the role of primary caregiver. Research has now shown the long-term effects of caregiving and the impact of the caregiver s health and well-being. What are the risks? Are there warning signs? What can be done to better support and educate caregivers?
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