Dementia-Capable Wisconsin: History

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Wisconsin State Dementia Plan

DHS is working with partners across the state to implement a new Wisconsin State Dementia Plan: 2019–2023, P-02241 (PDF) (State Plan). The State Plan replaces an earlier plan, the Wisconsin Dementia Care System Redesign Plan, P-00586 (PDF), published in 2014.

Public Survey

In 2018, DHS 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. More than 1,600 people took the survey.

Overall, the top three needs identified by the public survey were:

  1. More options for people with dementia who are in crisis.
  2. Better care for people with dementia in assisted living and nursing homes.
  3. Greater awareness in our state about dementia and brain health.

View the full survey results, P-02104.

State Plan Priorities

In March 2018, DHS and The Johnson Foundation at Wingspread brought together people and groups who have a stake in dementia care for a “Dementia Summit.” Taking into account the results of the public survey, the participants of the Dementia Summit agreed on priorities in four major focus areas:

  • Care provided in communities where people live.
  • Improving how health care providers diagnose and care for people with dementia.
  • Responding to crises involving people with dementia.
  • Care provided in assisted living, nursing homes, and other residential facilities.

These priorities form the foundation of the new State Plan, P-02241 (PDF). Participants also discussed how the State Plan should be carried out, which led to the work teams discussed in the next section.

State Plan Work Teams

The Steering Committee is responsible for making sure the State Plan is carried out. There are also leadership teams helping in each of the four focus areas: communities, health care, crisis response, and facilities.

One of the goals is to learn more about barriers that make it harder for some communities in Wisconsin to access care, and how we can reduce these barriers. A separate team called the Health Equity team has been formed to help advance this goal.

In addition, the Steering Committee formed a communications team, whose initial goal is to create a separate website for the State Plan. Until that website is ready, you can subscribe to receive email updates about the State Plan.

A Statewide Effort

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.

Whether you are helping with the State Plan, working behind the scenes, or providing care or support to one person at a time, we welcome you to join us in building a more dementia-friendly Wisconsin.

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: June 20, 2019

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