Knowing what is important in Caregiver Supports

1. Outcomes Based Program Evaluation Knowing what is important in Caregiver Supports The Many Faces of Respite, Lifespan Respite Conference, Arizona, 2011

2. Presentation objective: To provide guidance on tips, tools and resources on evaluating a program that supports family caregivers • Staff development and training • Designing program components • Developing an assessment tool • Determining what outcomes you want Introduction

3. Information and Referral • Assessment • Development of “Well-Being Plan” • 1:1 Support • Connection to local resources, trainings and services • Individual consumer-directed budgets for respite care & other goods/services Program Components

4. Assessment team • Program evaluator, Project manager, “Cathy” & Caregiver Specialists • What to collect • Validated tools • Collecting the data • Evaluating the data Assessment

5. Measuring Outcomes

6. Underlying Premise Measuring Outcomes

7. Starting point • Research on Power Tools for Caregivers • Mary Mittleman Study -Preserving health of Alzheimer caregivers: impact of a spouse caregiver intervention • Review of other assessment tools – California, Utah, Massachusetts & NH • Caregivers Count Too! from the Family Caregiver Alliance (Section 3) • Input from Caregiver Specialists • Analysis of Program Components Measuring Outcomes

8. Brainstorming • Identify outcome based on program components • Caregiver related - Depression, burden, coping, quality of life, stress strain, competence, caregiver reaction, caregiving effects • Care recipient related – Activities of daily living, cognition, functional limitations Measuring Outcomes

9. Criteria for the final Cut • Psychometric properties • Reliability – test retest, inter-rater & Validity – construct, content • Cultural appropriateness • Length of the Instrument • Relevance of questions • Overall fit with other tools • ALDs & IADLs adopted from the NH state Medicaid Eligibility Determination (MEDs) Measuring Outcomes

10. The Final Cut • Demographic information • Gender, marital status, income and assets, relationship to care recipient • Respite – currently available, needed • Zarit Burden Inventory • Patient Health Questionnaire (PHQ-9) • SF-12 Quality of Live • Revised Memory and Behavior Scale • Care recipient Characteristics • ADLs – NH Medicaid Eligibility Determination • Short Portable Mental Status Questionnaire Measuring OUtcomes

11. Gender • Female – 294 (70.2%) • Age – 65.30 (SD 12.4) • Marital Status • Single – 32 (7.6%) • Married – 338 (80.7%) • Divorced/Widowed – 43 (5.3%) • Caregiver Employment status • Not Employed – 286 (68%) Preliminary Findings - Caregivers • Caregiver Race • White (Alone) Non Hispanic – 398 (95.0%) • Relationship to Caregiver • Spouse - 209 (49.9%) • Son/Daughter - 168 (40.1%) • Length of Time as Caregiver – 2 months-8.3 years

12. Gender • Female 236 (56.3%) • Age – 80.98 (SD 8.3) • Marital Status • Married 242 (57.8%) • Divorced/Widowed – 161 (35.1%) • Living Status • With someone – 359 (86%) Preliminary Findings – Care recipient

13. Preliminary Outcome

14. Preliminary Findings - Caregiver Burden

15. Outcome Measures – care recepient

16. Preliminary Findings – Types of supports

17. When compared to Spousal caregivers, adult children reported • Higher levels of burden • Slightly higher levels of Quality of Life • Higher levels of depression • Needing more instrumental support • Lesser emotional support Preliminary Findings – Adults vs. Spouse Caregiver

18. This has… helped me step back and look at the whole picture… I am not so overwhelmed. I am able to meet friends occasionally – that I was never able to do before. Gave us a break so we could spend time together [husband and wife]… Provided homemaker and Med Alert. Thank God! Just having the time for myself. Weight lifted off my shoulders. Given me the ability to be a caregiver without the negative aspects associated with physical health. This program made me realize how much I need to ask for help. Video Interview - Sheila Caregiver Comments

19. Kellogg Foundation’s Evaluation Handbook • http://www.wkkf.org/knowledge-center/resources/2010/W-K-Kellogg-Foundation-Evaluation-Handbook.aspx • Overview of Program evaluation http://extension.psu.edu/evaluation/category.html • Article on Evaluating Family Caregiver Programs A pilot evaluation of the Family Caregiver Support Program. Chen YM, Hedrick SC, Young HM. Evaluation and Program Planning. 2010 May;33(2):113-9. • Planning for Program Evaluation http://learningstore.uwex.edu/assets/pdfs/G3658-1.pdf • Developing a Logic Model http://www.uwex.edu/ces/pdande/evaluation/pdf/lmguidecomplete.pdf Evaluation Resources

20. Family Caregiver Alliance, National Center on Caregiving, www.caregiver.org • National Consensus Report on Caregiver Assessment: Volume I, Principles, Guidelines and Strategies for Change (2006) • Volume I, Caregiver Assessment: Principles, Guidelines and Strategies for Change, http://www.caregiver.org/caregiver/jsp/content/pdfs/v1_consensus.pdf • Volume II, Caregiver Assessment: Voices and Views from the Field,  http://www.caregiver.org/caregiver/jsp/content/pdfs/v2_consensus.pdf • Caregivers Count Too! An Online Toolkit to Help Practitioners Assess the Needs of Family Caregivers, http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=1695 • Selected Caregiver Assessment Measures: A Resource Inventory for Practitioners (2002), http://www.caregiver.org/caregiver/jsp/content/pdfs/op_2002_resource_inventory.pdf Evaluation Resources

21. VidyaSundar, PhD. University of New Hampshire Vidya.Sundar@unh.edu • Cathy Creapaux NH Bureau of Elderly and Adult Services clcreapaux@dhhs.state.nh.us Thank You Contact Information