CAREGIVER SUPPORT SATISFACTION SURVEY

1. CAREGIVER SUPPORT & SATISFACTION SURVEY Bruce Bondo, SC Dept of HHS Bob Oldendick, University of SC

2. POMP 2 CAREGIVER SURVEY STATEWIDE RESULTS212 RESPONDENTS

3. 3 POMP 2 CAREGIVER SURVEY These are the results of the Family Caregiver Support telephone survey conducted by USC during the summer-fall of 2002. This was part of an Administration on Aging Performance Outcomes Measurement Project grant. Surveys were conducted in all 10 AAA regions by USC�s Survey Research Lab.

4. 4 POMP 2 Caregiver Survey Copies of Statewide Survey results will be handed out for your review. Sample Populations are too small to provide conclusions for a single region. We will be conducting further telephone surveys in all 10 regions for this service during 2003 in conjunction with USC. Survey will be part of POMP IV.

5. 5 DEMOGRAPHICS OF CAREGIVERS Spouse 23% Daughter 41% Parent 14% Sibling 6% Other Relative 9.4% Son 4% Friend / Neighbor 0.5% Age Ranges 77-89 9% 67-76 16% 57-66 30% 47-56 23% 37-46 16% 36 & younger 3.3%

6. 6 Additional Demographics Race: White or Caucasian: 49% Black or African American: 46% Marital status: Married: 58%; Widowed: 8% Divorced: 16%; Separated: 7.5% Never Married: 9.4%; Refused: 2% Gender: Females - 67%; Males � 33%

7. 7 Caregivers� Level of Education Education: Less than High School: 18% High School Graduate: 37% Some College, no degree: 20% Associate Degree: 6% College Graduate: 7% Advanced or Professional Degree: 9.4%

8. 8 TOTAL HOUSEHOLD INCOME $11,250 & Under .......................21.2% (100% Poverty) $11,251-$ -$22,850 ..........��.19.4% (200% Poverty) $22,851-$34,999 .......................29.7% (300% Poverty) $ 35,000 or more .................�..18% (400% Poverty) Don�t Know - 6.1% Refused - 5.7%

9. 9 SERVICES USED THE MOST RESPITE CARE (In-home) 49% CASE MANAGEMENT 39% HOME HEALTH AIDE 37% HOME DELIVERED MEALS 21% RESPITE CARE (ADULT DAY) 20% TRANSPORTATION 20% HOMEMAKER 19% RESPITE (Short-term in LTC facility) 15%

10. 10 Services Caregivers Received Information about services 68% Assistance with access to services 45% Individual Caregiver Counseling 21% Caregiver Support Groups 16% Caregiver Training or Education 14% 93% Rated service as good, very good, or excellent

11. 11 Other help that would be valuable to the caregiver Financial support 91% Tax break, stipend, gov. subsidy 84% Help with housekeeping 69% Help with bathing, dressing, grooming, toileting, feeding, other personal care 62% Respite care or adult daycare 58% Help w/transp, getting places 51% Help with making meals 47%

12. 12 Other information that would be valuable to caregiver Help line 89% Help in dealing w/agencies (bureaucracy) to get services 87% Info about developments/changes in laws which might affect your situation 84% Help in understanding how to pay for nursing homes, ADC, or other services 73%

13. 13 Other information that would be valuable to caregiver Info about client�s condition/disability 68% Someone to talk to/ counseling services/support group 69%� Help in understanding how to select a nursing home/group home/ other care facility 60%

14. 14 Activities Performed inthe Last Month by Caregiver Helped by preparing meals, doing laundry, or cleaning the house? 97% Helped him/her keep track of bills, checks, or other financial matters? 91% Helped him/her dress, eat, bathe, or get to the bathroom? 89% Helped with medical needs such as taking medicine/changing bandages? 87% Helped by taking him/her shopping or to the doctor�s office 85%

15. 15 Burdens Carried by Caregivers 61% of Caregivers get time off or relief from the responsibility of caring for their care recipient with help from agencies, family members or friends. 38% get no relief. 49% of caregivers get relief from caregiving by someone else taking over 4 or less times per month. 13% of caregivers get 2 hours per month relief. 42% get no help from family or friends. 39% carry nearly all of the care.

16. 16 Caregiver Burden 42% get no help from family or friends. 39% carry nearly all of the care. 81% CARRY ALMOST THE TOTAL BURDEN 43% provide care 24 hours during a week day 53% provide care 24 hours during week-end day

17. Caregiver�s Impact on Employer and the Economy

18. 18 Retired vs. Working Caregivers 34% of caregivers surveyed are retired 35% are not working 22% work full time 7% work part time 37% of those surveyed had time conflicts between working & caregiving

19. 19 Because of Caregiving Responsibilities: 34% Stopped working 22% Retired early 26% Reduced official working hours 17% Took a leave of absence to provide care 38% Get into work late or leave work early

20. 20 Impact on the Economy for 56% of Caregivers that Quit Work or Retire Early Median Income for Females: $23,329 Median Income for Males: $32,027 Potential Lost Wages w/Females: $13,134,227 Potential Lost Wages w/Males: $8,871,479 Potential Lost Expenditures in Economy for one year is: $22,005,706 (67% of caregivers in survey are female, 33% are males) 56% of 1500=840. Female caregivers made up 67%, males 33%.56% of 1500=840. Female caregivers made up 67%, males 33%.

21. 21 Economic Impact with State Taxes Lost from Wages Lost Potential Lost Expenditures in Economy for one year is: $22,005,706 Multiplier of 2 for further economic impact: $44,011,412 State Taxes Lost: $44,011,412 X .075 = $3,300,856 $3,300,856 divided by $400,000 (state funds to match Family Caregiver support Program in S.C.) = 8.25 Benefit/Cost

22. 22 Impact on Employer For Those That Quit Work or Retire Early: Retraining Costs: $3.59 billion Caregiver absenteeism: $7.89 billion Productivity loss: $13.22 billion Continuing insurance and cost for workers on leave & fees for temp agencies: $1.32 billion Cost of Employee Assistance Programs: $5.5 million TOTAL: $26.0255 billion dollars for ONE year **National Study of Caregivers of Alzheimer�s patients; Sept., 1998, Ross Koppel, Ph.D.

23. 23 POSITIVE REWARDS OF CAREGIVING 88% of caregivers �nearly always or quite frequently� feel that they are helping their families. 79% of caregivers �nearly always or quite frequently� feel satisfaction for providing care for someone who cared for them. 75% of caregivers �nearly always or quite frequently� feel that the person for whom they are caring appreciates the care that they are providing. 64% of caregivers �nearly always or quite frequently� feel a sense of accomplishment for what they do. 50% of caregivers �nearly always or quite frequently� feel that caregiving provides them with companionship.

24. 24 CAREGIVER BURDEN Never Rarely Sometimes Nearly Always How often does caregiving leave you with not enough time for yourself? 7.5% 8% 26% 56% �How often does caregiving create stress for you? 10.4% 7% 34.4% 46% How often does providing care create a financial burden for you? 17% 9.4% 29% 43% How often does caregiving leave you with not enough time for your family? 21% 10.4% 25% 40% How often does caregiving create problems in your social life? 26% 9% 24% 39%

25. 25 GREATEST DIFFICULTIESIN CAREGIVING FINANCIAL BURDEN 30% CREATES STRESS 24% NOT ENOUGH TIME FOR SELF 14% CONFLICTS WITH SOCIAL LIFE 6% NOT ENOUGH TIME FOR FAMILY 4% AFFECTS FAMILY RELATIONSHIPS 3% INTERFERES WITH WORK 2% INTERFERES WITH PRIVACY 1.4%

26. 26 Benefit/Cost of Caregiver Services Based upon the Survey statistics, we can see some very likely benefits from the caregiver program. ������ Approximately 1,500 persons are receiving financial assistance and services this year ������ 81 % of caregivers are primarily one person, and most are daughters or spouses ������ Loss of the primary caregiver places the care recipient in high �at risk� position of being institutionalized ������ Maintenance of caregiver support can be very cost/beneficial to keep the care recipient from being institutionalized������

27. 27 Benefit/Cost Ratio Net cost of one year of Medicaid sponsored nursing home care is approximately $32,700 �State cost is $9,900 If we assume that if caregivers had to give up their supportive role, 50% could be Medicaid eligible for a nursing home. �Total state cost is 750 x $9,900 or $7,425,000 �$7,425,000 divided by $400,000 (state match for Family Caregiver Support Program) is 18.6 for a Benefit/Cost ratio

28. 28 Comparison with Findings from Project COPE and Robert Wood Johnson Survey

29. 29 South Carolina participated in an AoA funded program called Project COPE which provided respite services for caregivers during 1992 � 2000. Overall client satisfaction was 4.6 in a 1 to 5 scale (4 = quite satisfied; 5 = extremely satisfied).

30. 30 Findings from Robert Wood Johnson Foundation National Strategic Indicator surveys; A Portrait of Informal Caregivers in America, 2001

31. 31 Demographics mirrored S.C. POMP II findings. 38% report financial burden is a burden There were many barriers to service or equipment: Finances Hassle factor Lack of knowledge how to get services

32. 32 Conclusion Caregivers are a population at risk. Many are depressed. They feel isolated and burdened. Caregiving is a long-term commitment and requires increasing time and personal investment.