1. The Many Faces of Respite 14th Annual National Lifespan Respite Conference November 2011 Improving Health and Quality of Life for Today's Caregivers Healthy Living (CDSMP) in Arizona Part or all of this work first appeared in the 2006 Chronic Disease Self-Management Leader’s Manual and is derived or adapted from the Chronic Disease Self- Management Program and is copyrighted by The Board of Trustees of the Leland Stanford Junior University.

2. Agenda Background Living Well Institute Overview Healthy Living (CDSMP) Caregiver Programs Referral Mechanism for Caregivers Closing & Questions Arizona Living Well Institute

3. Arizona has a growing older adult population Cost of treating chronic conditions over time is significant  Chronic illnesses are: “conditions that last a year or more and require ongoing medical attention and/or limit activities of daily living.”  Include, but not limited to: arthritis, asthma, lung disease, diabetes, heart disease, and hypertension Transition to preventative services at all levels and more affordable care  Vision: Aging well in supportive, healthy communities U.S. Dept. of Health & Human Services/HHS Initiative on Multiple Chronic Conditions (http//www.hhs.gove/ash/initiatives/mcc/) Arizona Living Well Institute What we are preparing for…

4. Systems Change & Sustainability Making a Difference in the lives of older adults  Changing the course of chronic conditions & injury  Changing systems “The way we do business.” Working from an Evidence-based Perspective  Drawing from the evidence  Contributing to new evidence Working Collaboratively to “Move the Dial”  Creating an inclusive, far reaching agenda for healthy living for all ages in all communities  Creating conditions for sustained improvement in health in caregivers and care recipients Arizona Living Well Institute

5. THE MISSION: TO ADVANCE EVIDENCE-BASED PROGRAMS FOR ARIZONA COMMUNITIES THROUGH STRUCTURED COMMUNICATION, MULTI-LEVEL COORDINATION AND FACILITATOR COACHING. Arizona Living Well Institute

6. Empowerment Systems, Inc. AZ Living Well Institute Greater Valley AHEC The CENTERPace + AZ Coalition for Military Families AZ Living Well Institute www.azlivingwellinstitute.org Funds to launch the Arizona Living Well Institute have been made available by grant funds from St. Luke’s Health Initiatives and the Arizona Department of Health Services through a grant from the Administration on Aging.

7. Evolution of the Living Well Institute 1. Coordination  Master & Lay Leader Trainings  Healthy Living (CDSMP)  Tomando Control de su Salud 2. Communication  Statewide to Next door  Regional Collaboratives 3. Coaching o Assessing Agency Readiness o Implementation Coaching o Workshop Fidelity o Follow-up & Continued Mentoring Arizona Living Well Institute The 3 C’s

8. Self-Management of Chronic Conditions Stanford University’s CDSMP Arizona Living Well Institute Healthy Living

9. Disease Tense Muscles Pain Stress/ Anxiety Difficult Emotions Shortness of Breath Depression Fatigue Symptom Cycle Stanford Chronic Disease Self Management, 2006 Arizona Living Well Institute

10. Making an action plan Using your mind to manage symptoms Feedback/problem solving Managing difficult emotions Fitness/exercise Better breathing Working with health care professionals Working with health care system Topics Covered Arizona Living Well Institute

11. Introduces tools needed in day-by-day life with chronic conditions Practices using self- management skills - participants choose what to work on Highly interactive, not a lecture course Focuses on goal setting Share experiences, emphasizes mutual support Arizona Living Well Institute Workshop Design www.wittysparks.com/2007/05/26/15-tips-to-manage-yourself-better/

12. Purpose of self-management is to help people gain self confidence in their ability to: - control their symptoms - control how their health problems affect their lives Outcomes? 5 year randomized study, 1000 people What does it do? Arizona Living Well Institute For more information on CDSMP outcomes, Review of Findings on Chronic Disease Self- Management Program (CDSMP) Outcomes: Physical, Emotional & Health-Related Quality of Life, Healthcare Utilization and Costs, http://patienteducation.stanford.edu/research/Review_Findings_CDSMP_Outcomes1%208%2008.pdf http://patienteducation.stanford.edu/research/Review_Findings_CDSMP_Outcomes1%208%2008.pdf

13. Arizona Living Well Institute Participants Comments "My doctor refused to operate on my knee because he said I was too fat …. Now that I am working out really hard … my doctor said he will go ahead with the surgery. … My weight has not changed but the doctor said that … he can tell that I have gained muscle.” "We are teetering between independent and assisted living. The class was very helpful to keep us independent.” "We look out for each other. We care about one another. We are cheerleaders for each other”

14. Healthy Living will NOT interfere with other programs - it will complement other programs! Healthy Living is not a support group. o Even though participants share experiences and support each other, it is a workshop where you learn and try new skills, and increase your ability to manage your health. To be most effective, it is important for participants to be present and contribute in all sessions. What Else Do I Need to Know? Arizona Living Well Institute

15. David Besst Arizona Living Well Institute Caregiver Programs

16. Basics Family caregiver basics  Family members and other informal caregivers are the backbone of our long-term care system, providing unpaid assistance to seniors with chronic illnesses, or persons with physical or mental disabilities.  Many look after both children and adults, providing:  Simple supports: cooking, cleaning, home maintenance, and other chores  Complex care: bathing, dressing, feeding, etc.  Lifesaving measures: performing CPR, administering medications, monitoring health conditions, etc. Arizona Living Well Institute

17. Fast Facts! Family caregiver fast facts!  Latest AARP study reports over 850,000 family caregivers active in Arizona during 2009  Total economic value of the services provided in Arizona alone exceeds $9B  Family caregivers provide approximately 80% of all in-home care provided in U.S.  About one-third of caregivers provide assistance to more than one person, and about one in ten to three or more people. Arizona Living Well Institute

18. Why? Why support family caregivers?  To help alleviate the toll of caregiving, family caregivers must have access to supports and services designed to safeguard their health and emotional well-being while offering protections against the financial burdens that often accompany caregiving duties.  Funds a range of support programs and services that assist family and informal caregivers who care for their loved ones, keeping them at home for as long as possible.  Because without what they provide, our long term care system would collapse under the strain Arizona Living Well Institute

19. Program Background Family Caregiver Support Program (FCSP)  Title III E - enacted in the November 2000 reauthorization of the Older Americans Act.  Provides grants to States and territories based on their share of the population aged 70 and older.  Is administered by the U.S. Administration on Aging and its Nationwide ‘Aging Network.’  Arizona receives approximately $3.3M of Title III-E funding each fiscal year.  Most of that funding is allocated to the Area Agencies on Aging across Arizona based on a funding formula. Arizona Living Well Institute

20. Program Services Family Caregiver Support Program – Five Services 1. Information 2. Assistance in accessing support services 3. Counseling Services  Peer Support Groups, Individual Counseling, Caregiver Coaching 4. Respite Services  In-home, group settings, adult day care 5. Supplemental Services  Minor home modifications, adaptive aids and devices, supplies  Must complement the care of the caregiver Arizona Living Well Institute

21. Who Benefits? Family caregivers of adults age 60 and older. Family caregivers of individuals of any age with Alzheimer’s disease and related disorders Family Caregivers providing care to adults with disabilities, age 19-59 (SSBG). Grandparents and other relatives raising grandchildren. The FCSP gives priority consideration to low-income older individuals and older relatives caring for children or adults with developmental disabilities. Arizona Living Well Institute

22. Supplemental Grants CarePRO Training  Ten week psycho-educational training for caregivers of individuals with Alzheimer’s Disease (includes respite) EPIC  Seven week training for early-stage dyads facing AD Lifespan Respite  Provides respite across the lifespan to family caregivers and strives to create better access for caregivers seeking services  National Conference and Statewide Summit being held in Glendale in November is opportunity for outreach on benefits of CDSMP training for family caregivers Arizona Living Well Institute

23. Best Practices Caregiver identification  NACOG has gone from a very low percentage of caregivers identified to almost 70% documentation ADL Training  Provides hands-on training on basic skills of caregiving such as how to properly lift and transfer a person, bathing techniques, etc.  Provides temporary respite for appropriate caregivers to attend, allowing access to this valuable service These existing training models can provide a model for how to engage caregivers to participate in CDSMP Arizona Living Well Institute

24. Jennifer Cain, MPH Health & Wellness Coordinator Division of Aging and Adult Services Arizona Living Well Institute How do we integrate?

25. Connecting Caregivers to HL 1. Educate employees about HL and how to incorporate into current referral system  Intake  Case managers 2. Identify potential participants  Utilize current intake processes when someone is seeking caregiver services  Area Agency on Aging (AAA) typical intake point 3. Referral to Health Promotion Contact at the AAA

26. Connecting Caregivers to HL Karen Ring – Healthy Living Office: 520-790-0504 kring@pcoa.org Ann Zaha – (Currently vacant,temp ) Office: 520-258-5077 azaha@pcoa.org Region 3: Northern Arizona Council of Governments (NACOG) 43 S. San Francisco Street Flagstaff, Arizona 86001 Susan Hunter- Healthy Living Office: 928-213-5243 shunter@nacog.org Jan Skaggs -Caregiver Program Office: 928-213-5245 jskaggs@nacog.org Region 1: Region One, Incorporated 1366 E. Thomas Road Suite 108 Phoenix, Arizona 85014 Bianca McDermott - Healthy Living Office: 602-241-6104 bianca.mcdermott@aaaphx.org Scott Hawthornthwaite - Case Management Client Intake: 602-264-4357 scott.hawthornthwaite@aaaphx.org Region 2: Pima Council on Aging (PCOA) 8467 E. Broadway Tucson, Arizona 85710

27. Connecting Caregivers to HL Region 4: Western Arizona Council of Governments (WACOG) Betty Perkey – Healthy Living 224 S. 3rd Avenue Yuma, Arizona 85364 Office: 928-217-7136 bettyp@wacog.com Cat Trobaugh - Caregiver Program 208 N. 4th St. Kingman, Arizona 86401 Office: 928-377-4694 catt@wacog.com Arizona Living Well Institute Region 5: Pinal-Gila Council for Senior Citizens Jan Engan – Caregiver Program 8969 W. McCartney Road Casa Grande, Arizona 85194 Office: 520-424-2829 jane@pgcsc.org **Please Note** Region 5 Area Agency on Aging does not currently offer HL. Please contact Arizona Living Well Institute. Cathy Stewart 2066 W. Apache Trail, Ste 116 Apache Junction, AZ 85120 Office: 480-982-3118 Ext. 113

28. Connecting Caregivers to HL Region 6: SE Arizona Governments Organization (SEAGO) 300 Collins Road Bisbee, Arizona 85603 Lynn Spencer – Healthy Living Office: 520-432-5301 lspencer@seago.org Kathleen Heard – Executive Director Office: 520-432-5301 kheard@seago.org

29. Integration Healthy Living Regional Collaborative Conference Calls Community Referrals  Mechanisms through caregiver programs Example from initial field trial (NACOG)  How planning to integrate caregiver programs and HL? Proven relevance for individuals with Dementia and caregivers by Center for Disease Control and Prevention  (CDC) Healthy Aging Program Study, University of Massachusetts Boston and Alzheimer’s Association, Cooperative Agreement 1U58DP002945 ‐ 02 Arizona Living Well Institute

30. Benefits of Individual in Attending with a Caregiver Assist with action plan process and follow through Explain and reinforce instructions and information Help the group understand the individual’s contributions in group activities (clarifying, interpreting, etc.) Take notes (facilitate follow-through & carry-over) Act as a liaison between the individual and group leader Individual feels safe, grounded, and less confused Provides “a frame of reference,” and a familiar face

31. Problems for Individual by Attending with Caregiver Caregiver speaks for individual Individual leans on caregiver to answer for them Caregiver gets uncomfortable when individual can’t stay on task Arizona Living Well Institute

32. Benefits to Caregiver by Attending with Individual Greater understanding of individual’s needs, concerns and fears (by sharing activities) Peer support and tools for caregiver stress (muscle relaxation, better breathing, guided imagery) Importance of self-care to maintain strength and manage difficult emotions Group brainstorming and problem solving around caregiving challenges How to navigate health care system and access resources Gain reassurance & confidence being with others in similar situations Arizona Living Well Institute

33. Benefits to Individual and Caregiver Partnership oDevelop greater mutual understanding  Understanding on both sides of what the person is experiencing  Reinforces a sense of teamwork and sharing a common language (from the Healthy Living program)  Greater communication, opportunity to share challenges and difficulties with each other  Improves individual-caregiver relationship Arizona Living Well Institute

34. Healthy Living Caregiver/Individual Experiences Caregiver attending with Individual o “I think the main thing I have seen is the tremendous support the care partner gets from the group itself. One husband who came to help his wife felt very isolated. He had a buddy call from a group member each week, and this bond continued even after the program ended.” o “The one caregiver that came was helped from the entire workshop including communication skills, medication management, physical activity, and problem- solving. The caretaker told us that the workshop gave her her life back.” Individual attending with Caregiver o “An individual who came with her partner told me that she felt safer when he was with her. She wasn't afraid to try and answer or make a statement.” Caregiver/Individual Partnership o “I feel like they are working in partnership and get a greater understanding on both sides of what the person is experiencing.” Arizona Living Well Institute

35. Melanie Mitros, PhD Executive Director (480) 982-3118 or (877) 982-3118 www.azlivingwellinstitute.org mmitros@azlivingwellinstitute.org Jennifer Cain, MPH David Besst Health & Wellness Coordinator Caregiver Support Specialist DES-Division of Aging and Adult Services Experiences/Questions? Arizona Living Well Institute