Focus on Caregiving: Identification, Engagement and Informal Networks

care·giv·er noun: family member, friend, or neighbor who takes care of a frail or disabled older person.

During this session Key strategies to reach, engage and support caregivers that do not self- identify Use of social media channels to engage and support caregivers

During this session Caregiving in Context: Understanding Caregiver’s Informal Networks of Support Collaborative partnerships: – Healthcare – Existing support networks – Community-based service providers

Approximately 43.5 million Americans provide part or full-time care for another adult age 50 or over. Almost half (46%) of family caregivers perform medical/nursing tasks – the majority of these caregivers (53%) also act as care coordinators. Source: National Alliance for Caregiving, 2009; Home Alone: Family Caregivers Providing Complex Chronic Care – AARP, United Hospital Fund.

More than 500,000 Minnesotans provide care for a family member, friend or neighbor. Less than 19% of these people identify as a caregiver. Source: 2005 Survey of Older Minnesotans; 2001 AARP Caregiver Identification Study

People who don’t know they are caregivers don’t seek support. Identifying as a caregiver is the first, and most important step, a person in this role can take. Source: 2001 AARP Caregiver Identification Study

Caregiving Impacts Caregivers are twice as likely as non-caregivers to experience chronic disease and depression. The economic value of informal caregiving in 2009 was $450 billion. More than Medicaid spending $1500 for every person in the U.S.

Minnesota In 2030, 1 in 4 Minnesotans will be age 65 or older, 1.2 million people. 52% have no plan for how they will pay for their long-term health needs. 92% of community-based long-term care is being done by informal caregivers.

Discussion How can we best connect caregivers to the type of support that they want and will utilize?

Goals Transform caregiver services: 1.Increase caregiver identification 2.Engage caregivers before the crisis 3.Innovate to better support caregivers 4.Improve health and well-being 5.Reduce institutionalization

Strategies 1.Public Awareness Campaign 2.Community Outreach 3.Proactive Follow-Up

Caregiver Awareness Campaign Purpose: Increase Caregiver Identification Development: Community Collaborative Caregiver Advisory Group Internal Advisory Group

Target Audience: Current caregivers – primarily people age caring for an aging parent or age caring for a spouse Dissemination Strategies: Media – Print, radio, transit shelters Social Media – Facebook, Google Partnership – Dissemination Toolkit Caregiver Awareness Campaign

Outdoor Media

2. Community Outreach

Do you help an older adult friend, family member, or neighbor with any of the following items? _____ Grocery shopping _____ Transportation _____ Picking up medication _____ Bills _____ Providing meals _____ Laundry _____ Yard work _____ House cleaning _____ Picking up mail _____ Going to medical appointments _____ Companionship – “checking in” TURN OVER TO FIND OUT THE RESULTS

3. Proactive Follow Up Objectives: Reach caregivers “upstream” Develop long-term relationships Provide ongoing follow up Eliminate the need to ask for help

Social Media Wilder has gone social to reach out to an increasing number of community caregivers.

Wilder’s Caregiving Community

Twitter

LinkedIn June, 2013 Wilder Caregiver Services launched a caregiving community on LinkedIn Goal: Support caregivers with resources and inspiration as they deal with the difficult balance of managing caregiving and their careers.

Caregiving Blog

Caregiving Resource Center Physical Space: Wilder’s Center for Aging 650 Marshall Ave. St. Paul, MN Online: Phone: (651) 280-CARE

Lessons Learned Public awareness campaign is successful: 82 million media impressions (2012) 15,000+ visits to whatisacaregiver.org Aging Services of Minnesota 2013 Leading Change Innovation Award Rosalinde Gilbert 2013 Caregiving Legacy Award Policy and Advocacy

Lessons Learned Caregiver ID quiz is effective 1039 caregivers engaged (2012) Caregivers more likely to access support at 3 months Caregivers want immediate help

Informal Support

Shifting the focus – formal to informal

The study questions Who are the caregivers and how did they assume their role? How do formal services factor into the world of caregivers? How are caregivers supported and what do their networks of informal support look like? What can be done to build and strengthen effective support networks for caregivers?

Key findings Informal support makes a huge difference. -Better self-reported health -Reduced stress Engaging someone outside the family matters.

Who we talked to... In-depth interviews with 212 caregivers in St. Paul 141 Primary caregivers (mainly responsible for care of older adult) 71 Secondary caregivers (assist an older adult)

Caregivers assist with a wide variety of tasks. - 69% of caregivers help with 5 or more of these daily tasks -19% of caregivers help with all 10 daily tasks listed here

Focus on support What is the most important resource that supports you as a caregiver? (N=141) Support from family, friends, and/or neighbors

Lower score (0 to 4) Caregiver has less informal support overall. Moderate score (5 to 7) Caregiver has a range of informal supports in place High score (8 to 14) Caregiver is well-supported by family members or friends. Informal support networks

Informal support matters Lower informal network score (N=37) Higher informal network score (N= 29) More likely to describe health as “fair” or “poor” More likely to describe health as “excellent” or “very good”

Informal support matters Lower informal network score (N=37) Higher informal network score (N= 29) More likely to describe health as “fair” or “poor” More likely to describe health as “excellent” or “very good” 19% described caregiving as “very stressful” 4% described caregiving as “very stressful”

Informal support matters Lower informal network score (N=37) Higher informal network score (N= 29) More likely to describe health as “fair” or “poor” More likely to describe health as “excellent” or “very good” 19% described caregiving as “very stressful” 4% described caregiving as “very stressful” 24% reduced time volunteering or cut-back on community events 13% reduced time volunteering or cut-back on community events

Extended support matters Extended support 25% said family members and others support them with caregiving. Associated with better self-reported health and lower stress.

Building Capacity Strengthening caregivers’ informal support networks: 1.Faith Communities 2.Cultural Communities 3.Neighborhoods 4.Online

CaregivingNOW

Faith Communities

Discussion What stood out to you? What is most relevant to your work?

More Information Tool Kit CDs Available! Caregiver Services CARE & Caregiving Resource Center Online community facebook.com/WilderCaregiverCommunity facebook.com/WilderCaregiverCommunity

References Minnesota Department of Human Services. Project 2030 Report AARP Institute. (2011). Valuing the Invaluable: 2011 Update, The Economic Value of Family Caregiving National Family Caregivers Association. (2010). Statistics on family caregivers and family caregiving. MN Leadership Council on Aging. (2011). Policy Proposals- Family Caregiving and Caregiver Support: Policy Option #1 AARP. (2001) Caregiver Identification Study AARP Public Policy Institute. (2012). Home Alone: Family Caregivers Providing Complex Chronic Care – AARP, United Hospital Fund.

Contact Kirsten Johnson, Community Initiatives Manager Amherst H. Wilder Foundation Maureen Kenney, Program Manager Caregiver Services Amherst H. Wilder Foundation