1. Family Caregiving of Frail Older Members: Recent Trends; Current Concerns; and Future Challenges Prepared for distribution by the CSWE Gero-Ed Center

2. Changes Impacting Caregiving  Increased life expectancy & aging of population  Shift in epidemiology  Decrease in death rates from heart disease and stroke  An increase in five-year cancer survival rates  An increase in multigenerational families  Changes in family structure

3.  More women in the labor force  Increasing costs of institutional care  National and state level initiatives to support caregivers  Changes in health care reimbursement and medical technology Changes Impacting Caregiving

4. Definitions  Caregiver  Informal Caregiver  Formal Caregiver

5. Selected Caregiver Statistics  Informal care givers  1 out of every 4 households in caregiving  By 2007, 39 million households in caregiving  20.3 million households have at least one member with a disability  Estimated 15% of U.S. adults are caregivers  Estimated 13.3 million Americans have potential caregiving responsibilities

6. Statistics continued...  More than 7 million provide unpaid help  5 million are caring for age 50+ with dementia  65% of community-based older persons depend on family and friends for their care  28% received both informal and formal care  8 % use paid care only

7. Persons Needing Care  12.8 million Americans need care  7.3 million are 65 and older  5.1 million are between 18-64  400,000 are children under age 18  Most persons needing care require help with everyday activities  66% of caregivers assist older persons with ADLs  75% help with grocery shopping, transportation, and housework, 66% prepare meals or manage finances  50% help administer medicines

8. Long-distance Caregiving  7 million are long-distance caregivers  Average time to reach relatives is four hours  46% live 20 minutes away  18% live over 1 hour away  Only 19% live with the person needing care

9. Gender and Age of Caregivers  75% are female  Women spend 50% more time with person needing care  Female caregivers are usually wives, daughters, daughters-in-law, and sisters  Average age is 43-46

10. Ethnicity  Family caregiving differs across cultures and ethnicity  A higher percentage of family caregivers are from ethnic minority groups  In the 70+ age group, wives are most likely to receive care from their spouses, Hispanics from their children, and African-Americans from a non- family member

11. Employment Status  25% of all workers provide elder care  Most are employed full-time  Two-thirds are employed either full- or part-time  Most have to rearrange their work schedule  Take unpaid leave  Decrease paid working hours

12. Time Spent Caregiving  Average time spent is 17.9 hours per week  For ages 65+, average is 20 hours per week  20% spend over 40 hours per week  Ethnic differences exist in the amount of time spent

13. Impact on Physical and Emotional Health  Spousal caregivers experience mental and emotional stress  31% of those caring for the elderly describe their own health as “fair” to “poor”  Caregivers experience depression, anxiety, and insomnia  Stress is inversely related to income

14. Value and Cost of Informal Caregiving  The value of informal caregiving is estimated at $196 billion per year  Informal caregiving exceeds nursing home and home care expenses by $81 billion  Caregiving costs U.S. businesses $11.4 billion annually  Caregivers lose up to $659,139 over a lifetime

15. Caregiver Assistance  Half of all caregivers have no outside help  Only an estimated 10% to 20% use formal services  Support services for caregivers have been shown to delay institutionalization  Access to adult day services decrease caregiver stress and increase their psychological well-being

16. Significant Caregiving Problems  Coping with increased needs of the dependent family member  Coping with disruptive behaviors  Isolation and loneliness  Lack of sleep  Disruption of household routines  Conflicted multiple role demands

17. Significant Caregiving Problems  Emotional reaction to the decline and anticipated death of a loved one  Physical and emotional abuse by the dependent patient  Lack of support and assistance from other family members  Disruption of family relationships  Lack of sufficient assistance from human service agencies and agency professionals

18. Signs of Caregiver Stress  Denial  Anger  Social Withdrawal  Anxiety  Depression  Exhaustion  Sleeplessness  Irritability  Lack of Concentration  Health Problems

19. Stages of Caregiving  Problem Discovery  Acceptance and Adaptation  Problem Resolution  Developmental Planning  Life Review  Life Care Planing

20. Problem Discovery  For the client  Recognition of the limitations and changes in appearance that result from the illness or impairment  For the caregiver and family  Recognizing the limitation that the illness or impairment places on their interaction with the client

21. Acceptance and Adaptation  Caregiver response to the client’s acceptance of limitations  Caregiver may experience isolation: training may help  When caregiver and family do accept limitations, they adapt  Some denial is useful, such as hope for a cure  For acceptance and adaptation to occur, some control over functional limitations or treatment is mandatory

22. Problem Resolution  Resolution is reached when a chronic condition stabilizes or patient goes into remission  If the illness trajectory changes or developmental stage changes, the problem resolves itself temporarily when the family redirects care and establishes new roles  Caregiving problems also end if patient dies. Social and emotional reactions do not end.

23. Developmental Planning  For the client:  Redirecting planed directions and goals  Integration of still-intact skills with newly developed abilities  For the caregiver:  Integrating personal goals with the goals and responsibilities of the caregiving role

24. Life Review (For the client)  Symptom review  Treatment review  Comeback review  Stable Trajectory review  Downward Trajectory review  Life review

25. Life Review (For Caregivers)  Symptom Review  Treatment Review  Comeback Review or Stable Trajectory Review  Downward Trajectory review

26. Life Care Planning  Caregiving families are sensitive to the need to plan for possible incapacity  Caregivers are likely to make provisions for their own care in the event of incapacity  The professional social worker can ease movement through the acceptance and adaptation stage

27. Caregiver Issues and Elder Abuse  Domestic  Maltreatment of an older person  In the elder’s home or in home of caregiver  Institutional  Any form of maltreatment that occurs in residential facilities  Perpetrators are usually those who have a contractual obligation for care

28. Types of Abuse  Passive neglect  Active  Physical abuse  Material or financial Abuse

29. Types of Abuse cont’d.  Psychological Abuse  Sexual Abuse  Violation of basic rights  Self Neglect

30. Potential Indicators of Abuse  Passive and active neglect  Physical abuse  Material or financial abuse  Psychological abuse  Sexual abuse  Violation of basic rights  Self neglect

31. Self-Neglect  Behavior of an elderly person that threatens his/her own safety  Manifests itself as a refusal or failure to provide for his/her own basic needs  Excludes the mentally competent person

32. Potential Factors Leading to Self- Neglect  Long-term chronic self-neglect  Dementia  Illness, malnutrition, and overmedication  Depression  Substance Abuse  Poverty  Isolation

33. Possible Causes of Elder Abuse  Caregiver Stress  Dependency or Impairment of the elder  External stress  Social Isolation  Intergenerational transmission of violence  Intra-individual dynamics or personal problems of the abuser

34. National Elder Abuse Incidence Study  551,011 persons, aged 60 and over, experienced abuse, neglect, and/or self-neglect in a one-year period  Almost four times as many new incidents are not reported  Persons, aged 80 years and older, suffered abuse and neglect two to three times their proportion of the older population

35. Elder Abuse Offenders  The Overwhelmed Offender  Impaired Offenders  Narcissistic Offenders  Domineering or bullying offenders  Sadistic Offenders

36. Understanding domestic violence in later life  Caregiver stress is not the primary cause of elder abuse  The majority of non institutional elder abuse is family violence  As professionals, we must understand the dynamics of elder abuse  Relying on the caregiver stress model may place victims in greater danger  Understanding the dynamics of power and control can help professionals intervene more effectively

37. The National Family Caregiver Support Program  Sponsored by the Administration on Aging  Designed to support families  Information about resources  Assistance in locating services  Caregiver counseling, training, and peer support  Home-based respite care, adult day care centers  Limited supplemental services

38. Summary Families, not social service agencies, nursing homes, or government programs are the mainstay underpinning long-term care for the elderly. Recognition of the role of the family in providing long-term care is moving to the forefront of national policy making.  Example: Family Medical Leave Act of 1993  November is National Family Caregiver Month  The Family Caregiver Initiative