Caregivers in end of life care

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Caregivers in end of life care

  1. 1. Caregivers in End of Life Care Rebecca H. Davis, PhD, RN Grand Valley State University
  2. 2. What is a caregiver? <ul><li>One who provides assistance to another </li></ul><ul><li>Often a relative </li></ul><ul><li>Most often female (75% of the time) </li></ul><ul><li>May do it for emotional or financial reasons </li></ul><ul><li>Often are expected to take on the role due to relationship with the ill person </li></ul>
  3. 3. Role of caregiver <ul><li>Physical care </li></ul><ul><li>Emotional care </li></ul><ul><li>Transportation </li></ul><ul><li>Financial responsibility </li></ul><ul><li>Other roles still exist (wife, mother, work related) </li></ul>
  4. 4. Facts about Caregivers <ul><li>Family caregivers provide 80-90% of care to frail elderly relatives </li></ul><ul><li>25% of families are involved in care to elders. </li></ul><ul><li>25% of caregivers are in the workforce. </li></ul><ul><li>Of those providing care, 39% are over age 60. </li></ul><ul><li>75% of caregivers are women. </li></ul><ul><li>Average caregiver provides 18 hrs of care/week. </li></ul><ul><li>Up to 1/3 of adult children caregivers experience depression after one year of caregiving. </li></ul>
  5. 5. Potential Benefits of Caregiving <ul><li>Companionship </li></ul><ul><li>Fulfillment </li></ul><ul><li>Enjoyment </li></ul><ul><li>Satisfaction of meeting an obligation and providing QOL for loved one </li></ul><ul><li>Less depression and grief reaction after the person died for those who report caregiver benefit </li></ul><ul><li>Source: Boerner, K., Horowitz, A., Schultz, R. (2004). Positive aspects of caregiving and adaptation to bereavement. Psychology and Aging, 19(4), pp. 668-675 </li></ul>
  6. 6. Caregiver Burden <ul><li>Strain or load born by a person who cares for another </li></ul><ul><li>The needs of the ill individual exceed the caregiver’s resources </li></ul><ul><li>Multidimensional response </li></ul><ul><li>Qualified by the caregiver’s perception of the burden </li></ul>
  7. 7. Caregiver Burnout <ul><li>Progression of caregiver burden </li></ul><ul><ul><li>No longer a good option for patient </li></ul></ul><ul><ul><li>No longer a good option for caregiver </li></ul></ul>
  8. 8. Prevalence <ul><li>50% have financial burdens </li></ul><ul><ul><li>20% must quit work or make major life changes </li></ul></ul><ul><ul><li>31% lose family savings </li></ul></ul><ul><li>75% are in ill health themselves </li></ul><ul><li>Many experience fatigue, frustration and stress </li></ul><ul><li>2/3 say puts a strain on marriage </li></ul><ul><li>¼ feel despair as a result </li></ul>
  9. 9. Risk factors for Caregiver Burnout <ul><li>The people are socially isolated </li></ul><ul><li>Caregiver lacks knowledge about how to care for the ill individual </li></ul><ul><li>Caregiver has limited interpersonal skills </li></ul><ul><li>Caregiver is frail and/or in poor health </li></ul><ul><li>Past problems coping </li></ul><ul><li>Past strain on relationship </li></ul><ul><li>Guilt is involved </li></ul>
  10. 10. Patient symptoms and Caregiver burden <ul><li>Problems with symptom management lead to problems with caregiver burden </li></ul><ul><li>Patient symptoms and immobility are related to depression, which is related to caregiver stress </li></ul>
  11. 11. Why the emphasis? <ul><li>Increased demands on caregivers </li></ul><ul><ul><li>Sicker patients </li></ul></ul><ul><ul><li>Move from hospital to home sooner </li></ul></ul><ul><ul><li>More technological care being given </li></ul></ul><ul><ul><li>Increased skills needed, little/no training </li></ul></ul><ul><li>If the caregiver fails, the patient also suffers </li></ul>
  12. 13. Burden on Caregivers <ul><li>Increased life expectancy </li></ul><ul><li>More women in workforce </li></ul><ul><li>Expectations of the role </li></ul><ul><li>Often older and sick </li></ul><ul><li>Families no longer live nearby </li></ul><ul><li>Put own needs last for the “good” of the patient </li></ul>
  13. 14. Symptoms of Caregiver Burnout <ul><li>Increased stress and anxiety </li></ul><ul><li>Circular thinking </li></ul><ul><li>Social isolation </li></ul><ul><li>Depressive symptoms </li></ul><ul><li>Diet or nutritional problems </li></ul>
  14. 15. Assessment of Caregiver Burden <ul><li>Informal assessment </li></ul><ul><li>Formal assessment (i.e. Caregiver Burden Index) </li></ul><ul><li>Informal assessment (subjective) of caregiver’s emotional and physical health and responses </li></ul>
  15. 16. Nursing Interventions to Reduce Caregiver Strain <ul><li>Educational instruction and training </li></ul><ul><li>Support groups, classes </li></ul><ul><li>Psychotherapy </li></ul><ul><li>Cognitive-Behavioral – how to develop problem solving skills </li></ul><ul><li>Massage, touch therapy </li></ul><ul><li>Respite/adult day programs </li></ul><ul><li>Accessing community resources (i.e. hospice) </li></ul>
  16. 17. Other ways to help <ul><li>Hospice care an option </li></ul><ul><li>Encourage caregivers to use resources </li></ul><ul><li>When visiting in the home, don’t impose your values </li></ul>
  17. 18. Other interventions <ul><li>Counseling </li></ul><ul><li>Education </li></ul><ul><li>Preplanning </li></ul><ul><li>Self-Care </li></ul>

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