Caring for Caregivers Dr. Dawn-Elise Snipes Objectives ~ Explore what caregivers really are ~ Identify some of the things caregivers do ~ Identify the consequences of adopting a caregiver role ~ Review cognitive behavioral strategies to help caregivers prevent physical, emotional and interpersonal problems Analogy ~ Caregiving can be though of like a company merger (Integrative Behavioral Health) ~ Change in location or alterations in current structure ~ New policies and procedures ~ New supervisors telling you what to do ~ Alterations in mission and vision ~ Not everyone in the company is on board with the merger ~ Change causes crisis Who ~ Formal caregivers: Social workers, counselors, nurses, clergy ~ Informal caregivers: Family and Friends ~ Tasks ~ Activities of daily living (bathing, feeding, toileting) ~ Meal prep ~ Shopping ~ Cleaning / laundry ~ Yard work ~ Animal care ~ Companionship ~ Bill paying Who ~ Issues (not all inclusive) ~ Infants/children (bio parents or alternative caregivers) ~ Aging (memory issues, balance issues, health conditions that must be managed) ~ Dementias ~ Schizophrenia ~ Fetal Alcohol Spectrum Disorders ~ Autism Spectrum Disorders ~ Down’s syndrome ~ Chronic medical conditions: Kidney/liver/heart failure ~ Acute injury/illness: Hip replacement, amputation, open heart surgery Tasks ~ Prevention of ~ Depression, anxiety, addiction ~ Stress-related health issues ~ Family dysfunction ~ Job loss ~ Financial hardship Behavior = Communication Physical Issues ~ Sleep / Circadian rhythms ~ Respite ~ Fatigue from chronic stress ~ Management of current health personal conditions ~ Nutrition and hydration ~ Pain from new physical demands Affective ~ Emotional support ~ Acute stress reactions if a trauma was involved ~ Baby born with a severe defect ~ Adult having a stroke or heart attack ~ Grief about their loved one’s condition ~ Grief about their change in circumstance ~ Anxiety about their loved one and their abilities to care/cope ~ Frustration at subsequent problems (children acting out, job challenges, caregiver turnover) ~ Guilt about anger, resentment and happiness ~ Feelings of emptiness if the condition resolves or when the loved one passes Affective ~ Validation ~ Caregivers with positive experience viewed caregiving as a responsibility; the opposite viewed it as having 'no choice’ ~ Positive experiences ~ Empowerment framework ~ How are you coping better today ~ How is the person doing better today ~ In what ways is your help improving the quality of life for the person ~ Journaling ~ Dialectics ~ Reminiscence Cognitive ~ Health literacy regarding the ~ Condition, prognosis ~ Confabulation ~ Delusions/hallucinations ~ Competence/confidence at implementing care plan ~ Training and support of caregivers in the home setting should incorporate caregivers’ perspectives ~ Mindfulness and strategies to assess and understand the changes within themselves (physical, emotional, attitudinal, motivational) Cognitive ~ Resilient caregivers exhibit attributes including ~ Determination and curiosity ~ Flexibility and resourcefulness ~ Positive thinking finding positive gains despite hardship, such as a sense of purpose, increased closeness with the SO, and feelings of mastery and gratification ~ Self-efficacy ~ Mindfulness ~ Effective communication social support ~ Spirituality / Sense of meaning and connectedness Cognitive ~ Acceptance of aversive experiences and commitment to personal values when caring for someone who has a chronic condition or is in significant pain (Emotional of physical) ~ Subjective appraisal Caregivers who believe the problem behaviors are voluntary tend to experience more distress than those who view the behaviors as a consequence of the condition or developmental abilities. ~ People do the best they can do with the tools they have at any given time in any given circumstance ~ Contextual CBT ~ FCB– Unhook from emotional reasoning Environmental/Financial ~ Case management assistance tapping into available ~ Consumer Directed Care programs Insurance (SSI/SSDI/Medicare/Medicaid/Private insurance/Long term care insurance) ~ Financial support programs for ~ Nutrition ~ Structural alterations ~ Supplies ~ Personal housing or loved one’s housing or utilities ~ Resources for assuring environmental safety ~ Community resources for support, respite and recreation ~ Awareness of online employment opportunities Relational ~ Cultural values ~ Traditional beliefs about family obligations in Asian and Latino/Hispanic communities may lead to dysfunctional thoughts emphasizing the need for complete dedication to caregiving at the expense of one’s own needs and feelings. ~ Other cultural beliefs may focus more on independence, wealth and success and promote institutional caregiving instead of family. ~ Engaging in social activities which were meaningful before the life-event. Summary ~ When someone suddenly is charged with the care of another regardless of the reason, it generally alters all aspects of their life. ~ There are a multitude of physical, emotional and cognitive reactions that can be explored, normalized and addressed with the individual. ~ Too often informal caregivers are treated as ancillary to the treatment team or patient which leaves them feeling invalidated, ignored, unsure of themselves and confused ~ Ideally all caregivers will be provided with tools to understand the diagnoses, effectively implement care, know how to request help and maintain their own health and wellbeing.