A Call to Action in Culture Change

Advocacy: Preparing for the New Informed Consumer36th National Consumer Voice for

Quality Long-Term Care Annual Conference & Meeting

Sonya Barsness, Pioneer NetworkRose Marie Fagan, ConsultantKim McRae, Have A Good Life

Exploring, Discovering, Changing with Consumers

Engaging Consumers:

Personal Transformation

State

LocalNational

Exploring Nationally

Who Are These Consumers?• 40 million elders

• 78 million Baby Boomers = More Aging Parents! (71% have at least one living parent)

• Individuals turning 65 may need 3 years of long-term care in their lifetime

• 70% individuals 65+ will need some type of long-term care– 40% will need nursing home care

WE ARE ALL CONSUMERS

Why Consumers?* Culture Change is becoming more

“mainstream”

* Consumers are learning about Culture Change and person-centered care

* BUT not all providers are convinced this is what consumers want – so they think there is nothing to change

When consumers make their preferences known and demand change, it is more likely to happen.

Pioneer Network Engaging Consumers in Culture Change

• Phase 1:Changing the Culture of Aging: Taking a First Step to Creating Knowledgeable Consumers, – Funded by the Picker Institute– National pilot partners included AHCA, American

College of Health Care Administrators, AMDA, Coalition of Geriatric Nursing Organizations, Leading Age and The National Consumer Voice for Quality Long-Term Care

The “Creating Home” Pilot– Creating Home: Advocating for Change in How

and Where We Age curriculum– Goals:

• educate consumers about long-term care and Culture Change

• determine if consumers are interested in this topic and further action

• learn about how to best educate consumers about Culture Change

The “Creating Home” Pilot

• Four states (FL, GA, MA, OR)• Over 500 meeting participants• Sixty-one meetings• Meetings:

– 2-hour book club format (interactive & experiential)

– Meeting kit for facilitators with participant handouts

What Did We Learn?• Consumers interested in culture change• Consumers “don’t know what they don’t know”• Interested in advocacy (63%)• Wanted more information on “what culture

change looks like”• Much concern about affordability

Creating Home Consumer Engagement: Phase 2

• Changing the Culture of Aging Phase 2: Next Steps to Supporting Knowledgeable Consumers– Funded by Picker Institute– Elevated consumer outreach as an integral part

of our culture change advocacy

Revision of Creating Home Curriculum

• What does culture change look like• Affordability of culture change• Support for family members• Frequent consumer comments• Reduction in production costs

Expansion of Creating Home Meetings

• 22 states participated– AL, AR, CA, CO, FL, GA, IL, IN, KS, KY, LA, MA, MI,

MO, NY, OH, OK, OR, PA, VA, WA, WI• 205 meetings held• Over 1,500 in attendance

Creating Home Meeting Participants

What do we know about the participants?

• 95% have visited NH or ALF• 7% lived in one• 63% family caregivers (55% of elders in

NH/ALF)

Did consumers gain knowledge?

• Pre- and post-test evaluations• Rated higher level of agreement with all

statements after meeting• Most knowledge gain:

– Increased understanding of difference between traditional nursing homes and those practicing person-directed care

– Increased understanding of what culture change is

Were consumers interested in topic?

• Topic is relevant• Interested in culture change• Supportive of culture change

– 97% agreed/strongly agreed they would rather live in culture change community

– 98% agreed/strongly agreed that culture change needs to happen

“Very fine program. I am excited that change is possible- I hope it

happens quickly!”

Do consumers intend to act?

• 56% interested in involvement in state culture change coalitions

• 81% intended to obtain more information about culture change

• 93% intended to share info with family/friends• Before meeting, 27% consumers felt they have

the power to transform long-term care (47% after meeting)

“What can the common person do?”

“I would like to know the best way to become an active

advocate in this area to reach our government leaders. As a

child of aging parents and seeing what they have gone through, I

would like to be a 'voice" for change.”

What did we learn?

• Effective means of presenting information to consumers

• Participant recruitment challenging• Themes from consumers:

– HOW do we advocate as consumers– Affordability concerns– Which homes in my area are doing this?

“[I would like to know more information about…]ways to pay

for and plan to pay for these culture changes.”

BUT, THERE’S MORE….

AARP/Pioneer Network Webinar

• “Live a Good Life Wherever You Call Home: How Long-Term Care is Changing to Meet Your Needs”

• Speakers: Rose Marie Fagan & Karen Stobbe• 412 individuals participated• 671 have viewed since webinar aired

Consumers & Pioneer Network Website

• “A Guide to Better Care Options for an Aging America”

• Virtual tour of nursing home– Examples of possible environmental changes

• http://www.pioneernetwork.net/Consumers/BetterCareOptions

Inform, Transform, Inspire

• Collaboration with Colorado Culture Change Coalition

• Based on Creating Home curriculum• To be used by “ambassadors for culture

change”• http://www.pioneernetwork.net/Consumers/I

nformTransformInspire

Financial Planner Pilot

• Financial Planners as consumer “influencers”• Conducted Creating Home meeting with group

of financial planners in GA• Conducted second Creating Home meetings

for financial planners’ invitees

What did we learn from the Financial Planner Pilot?

• Financial planners might not be very knowledgeable about long-term care

• Found topic interesting and important• Creating Home meeting could be valuable to

their clients– Educational – Opening the conversation about long-term care

and retirement planning

Opportunities

• Continuation Creating Home meetings• Strengthened partnerships with state

coalitions to support them in consumer advocacy

• Reaching out to consumers in additional ways

• Identifying concrete consumer advocacy strategies

• Strengthening national partnerships with consumer advocacy organizations

• Reaching culture change “influencers”

“I thought it was very interesting about new ideas for group

activity. I lied that they are not regulating meal times.”

“This was probably the first paperwork that all but one filled

out themselves instead of someone else filling or doing for

them”.

Let’s keep filling in the map!

VISIONING!

What are you doing to engage consumers in culture change?

What would you like to be doing (but aren’t)?

What are your challenges/barriers in engaging consumers in culture change?

What do you need to engage consumers in culture change?