Dementia-Capable Wisconsin: History

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State Dementia Plan Call for Volunteers Survey Results

Thank you to all who participated in the Call for Volunteers survey! Applications were reviewed by State Dementia Plan Steering Committee members and workgroups were developed based on a variety of factors. As the workgroups begin implementing the initiatives outlined in the State Dementia Plan, they will call on volunteer consultants who were identified through the survey. Additionally, distribution lists will be set up for each priority area and will be available for anyone to sign up.

See the survey results below:

Survey Respondent Primary Priority Area
Priority Area Sum Percent
Care in the Community 143 40%
Health Care 58 16%
Crisis Response for People with Dementia 76 21%
Facility-Based Care 85 23%
Total 362 100%

 

Geographic Distribution of Survey Respondents
Geography Sum Percent
Rural 164 45%
Urban 99 27%
Suburban 97 27%
Tribal Lands 2 1%
Total 362 100%

 

Type of Organization or Situation of Current or Past Work Across All Priority Areas
Type of Organization Sum Percent
Family or household 98 27%
Aging services agency 52 14%
Alzheimer's or dementia organization 72 20%
Crisis/Adult Protective Services/Emergency/Emergency Detention/Emergency Protective Placement agency 55 15%
Educational setting (including university) 37 10%
Long-term care services including home health, hospice 139 38%
Law enforcement/legal/judiciary agency 6 2%
Medical or mental health setting 110 30%
Other governmental agency (including regulatory) 20 5%
Other 31 8%

Note: Percents indicate share of all complete responses. They do not total 100% because respondents could indicate more than one category.

 

Type of Paid or Volunteer Work in Past Work Organizations Across All Priority Areas
Type of Work Sum Percent
Family caregiver or household support 102 28%
Alzheimer's or dementia services 52 14%
Advocacy 72 20%
Academic (education or research) 68 19%
Crisis/Adult Protective Services/Emergency/Emergency Detention/Emergency Protective Placement agency 15 4%
Home health or personal care 60 16%
Law enforcement/legal/judicial services 10 3%
Medical or mental health care 112 31%
Public service or elected official 26 7%
Social work, care coordination 70 19%
Residential care (facility setting) 29 8%

Note: Percents indicate share of all complete responses. They do not total 100% because respondents could indicate more than one category.

Wisconsin State Dementia Plan: 2019–2023

In 2018, the Department of Health Services (DHS) and partners worked together to craft a Wisconsin State Dementia Plan (State Plan) (PDF). Created through a statewide stakeholder summit, the State Plan identifies four priority areas with specific initiatives in each: care in communities, health care, dementia-related crisis response, and facility-based residential care. Within these areas, summit participants identified nine goals and 37 strategies. The State Plan will also focus on addressing dementia-related health disparities and access to services for different population groups in Wisconsin.

Some of the stakeholder summit participants volunteered to form a State Plan Steering Committee to help recruit and organize volunteers to work on the State Plan. The steering committee conducted a "Call for Volunteers" survey in early January 2019. The survey results will be analyzed in February and teams of volunteers will be organized in each of the priority areas. Watch for an update on the survey results to be posted soon.

The State Plan is a Wisconsin plan. Its success will depend on the active involvement of a wide variety of people with diverse perspectives, including community members; advocates; people who work in medical, social, crisis, and protective services; and residential care providers of all kinds.

To receive the latest news on the State Plan and the State Plan Steering Committee and workgroups, sign up for updates through DHS's Dementia-Capable Wisconsin email sign-up.

Thank you for your interest!

New Wisconsin State Dementia Plan

DHS is working with partners across the state to implement a new Wisconsin State Dementia Plan (PDF) (State Plan). DHS and The Johnson Foundation at Wingspread co-hosted a stakeholder “Dementia Summit” in March 2018, to lay the foundation for the new State Plan. The State Plan, published in September 2018, will be implemented over five years, from 2019 through 2023.

The Dementia Summit engaged key stakeholders in identifying priorities for the State Plan and crafting a structure for implementation. Prior to the Dementia Summit, the Department conducted a public survey to get input from people with memory loss or dementia, family members and people who informally care for someone with memory loss or dementia, and professionals that work with those who have dementia and their families. Results of the 2018 Public Survey, P-01204 (PDF) were reviewed by participants at the Dementia Summit to help them as they established Priorities for 2019-2023, P-02137 (PDF) in four major categories: care in communities, health care, dementia-related crisis response, and facility-based care. These priorities are the foundation of the new State Plan, P-02241 (PDF).

The State Plan is a Wisconsin plan. It is not one agency’s plan, and one agency cannot meet the goals of the plan independently. The State of Wisconsin will need all partners. Success of the plan relies on the involvement of our community, medical, social, crisis and protective service, advocacy, and provider networks.

Whether you participate in a State Plan committee, do systems-work behind the scenes, or provide care or support to one person at a time, we welcome you to join us in continuing to move forward on creating a Dementia Capable Wisconsin.

Subscribe to receive email updates about the State Plan and the formation of a steering committee and workgroups.

Origins of the Dementia System Redesign Effort

In 2015, it was estimated that 115,000 Wisconsin residents had dementia. That number is expected to increase to 242,000 persons with dementia by 2040. The large numbers of people affected, the devastating impact the disease can have, and the significant cost of providing care that can stretch over many years are all reasons why the Department of Health Services initially embarked on a redesign of the system of care for people with dementia and their families, starting in 2013. An additional reason for undertaking the Dementia Care System Redesign was to provide a system-wide context for addressing pressing issues raised by the Wisconsin Supreme Court’s Helen E.F. decision, issued in May 2012. In the Helen E.F. decision, the Court held that Helen, a person with dementia but with no accompanying mental illness could not be involuntarily committed for treatment under Chapter 51 of the Wisconsin Statutes, which addresses mental illness, substance use disorders, and developmental disabilities. The Wisconsin Supreme Court further held that Helen would more appropriately be subject to provisions under Chapter 55, which covers the Protective Service System for individuals in need of protective placement and services.

The Helen E.F. decision, and the related work of a Special Legislative Committee on Legal Interventions for Persons with Alzheimer’s Disease and Related Dementias, prompted then Department of Health Services Secretary Kitty Rhoades to call for a redesign of Wisconsin’s dementia care system in order to provide appropriate, safe, and cost-effective care throughout the course of the disease.

2013 Stakeholder Summit

In October 2013, DHS convened the Dementia Care Stakeholder Summit that brought together 33 key stakeholders with diverse perspectives to identify concrete ways the DHS and its partners could work together to make Wisconsin more “dementia-capable” and to identify priorities. The result was a Stakeholder Summit Report, P-00563 (PDF) . DHS used the results of the Summit to create the Dementia Care System Redesign Plan, P-00586 (PDF) . The focus of the Redesign Plan is on addressing gaps in the current care delivery infrastructure and expanding community and crisis services for people with dementia.

Stakeholders were instrumental in helping DHS create the Dementia Care System Redesign Plan. Comments made through a stakeholder survey following the Summit, as well as those provided directly to DHS leaders, were incorporated into the Plan when possible.

2014 Wisconsin Dementia Care System Redesign Plan

In 2014, DHS created the initial Dementia Care System Redesign Plan, P-00586 (PDF). The focus was on steps DHS can take, working with its many partners, to address gaps in the current care delivery infrastructure and expand community and crisis services for people with dementia. The Redesign Plan was developed following a 2013 Stakeholder Summit (PDF) at which participants throughout the dementia care network identified their priorities for redesigning dementia care in Wisconsin. Comments made through a stakeholder survey, as well as those provided directly to DHS leaders, were reviewed and considered as the Plan was revised. As noted in the Plan, DHS considers it to be a “living” document, one that must be revised as lessons are learned and progress is made. The time has come to update the 2014 Plan.

Accomplishments

The Redesign Plan was developed to serve as a living document, one that would evolve to reflect progress made and lessons learned along the way. In the first years of implementing the Plan, DHS and its many partners have helped foster a statewide conversation about dementia and stressed the importance of creating dementia-friendly communities, workplaces, and living environments throughout the state. While there is much work yet to be done, it is evident that Wisconsin is moving closer to achieving the vision of providing the highest possible quality of life for all Wisconsin residents with dementia.

Accomplishments of the First Two Years, P-01555 (PDF)
Accomplishments in 2016 and 2017, P-02092 (PDF)

Last Revised: February 15, 2019

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