1. Outcomes Based Program Evaluation 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

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

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

5. Logic Model –Caregiver Supports Program Inputs Staff Funding Advisory Board Project Partners Planning processes Activities 1:1 Support Powerful Tools for Caregivers Training Connection to local resources and services Individual consumer-directed budgets Outcomes Help received Hours spent caregiving Caregiver Characteristics Care Recipient Characteristics Client Satisfaction Program components utilized

6. Underlying Premise

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

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

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)

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

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%)  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%)

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

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

19.  Kellogg Foundation’s Evaluation Handbook  http://www.wkkf.org/knowledge-center/resources/2010/W-K-Kellogg-Foundation-Evaluation- Handbook.aspx 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

20. Family Caregiver Alliance, National Center on Caregiving, www.caregiver.orgwww.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 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.pdfhttp://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=1695http://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 http://www.caregiver.org/caregiver/jsp/content/pdfs/op_2002_resource_inventory.pdf

21.  Vidya Sundar, 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