Dementia Care Specialists – A Local Resource for Families

 Every 66 seconds someone in the US develops Alzheimer’s disease. In Wisconsin, there are over 115,000 individuals living with dementia. The Aging and Disability Resource Center (ADRC) of Southwest Wisconsin has a Dementia Care Specialist (DCS) to support individuals who develop cognitive changes, their families, and communities. Since 2014, Whitney Thompson, MPH, CHES has been in this position which has become a significant asset to the ADRC and the surrounding communities.

The Dementia Care Specialist Program is part of the Dementia-Capable Wisconsin Initiative that was prompted by the Wisconsin Department of Health Services, Division of LongTerm Care. This program has the following three goals:

  • Assisting individuals and families affected by dementia, including helping those with dementia to continue to be active and remain in their homes for as long as they choose.
  • Being a catalyst in creating dementia friendly communities that includes businesses, employers, local organizations, etc. and raising awareness of the unique needs of people with dementia and their families.
  • Supporting the staff within the ADRC and county programs to be better prepared to serve individuals with dementia and their family caregivers.

Assisting families of people that are living with dementia is a crucial role of the DCS. In 2016, our DCS had 288 in-depth consumer consultations, which included helping families better understand the condition, talking about caregiving strategies, and addressing difficult conversations. The DCS facilitates a monthly support group in Monroe for caregivers and has expanded support for individuals living with dementia and their families through a monthly Memory Café in Monroe. The café has an average attendance of 10 or more participants who enjoy refreshments, socialization, and activities like visits from elementary school children, the humane society, and an antique expert.

Dementia Care Specialists also increase awareness of dementia. This is done by catalyzing the creation of Dementia Friendly Communities in Southwest Wisconsin. The goal of the initiative is to increase awareness and understanding of dementia by decreasing stigma and isolation through education of all sectors of communities. Locally, the Dementia Friendly Coalitions have worked with a wide-range of groups, including law enforcement, faith based organizations, business owners, youth organizations, and general community members to develop communities that wrap around and include those impacted by dementia. The Dementia Friendly Community initiative has trained 64 businesses and organizations with over 700 individuals becoming Dementia Friendly in Southwest Wisconsin.

The Dementia Care Specialist also provides many other educational opportunities. One educational tool is the Virtual Dementia Tour (VDT®). The VDT® is a simulation experience to get a glimpse of what a may be like to live with dementia. It helps individuals have an increased understanding and empathy for individuals living with the cognitive and physical impacts of dementia. Last year the DCS facilitated 19 tours with 198 participants.

Another highlight of DCS program are the collaborations with the youth of our communities. The Dementia Care Specialist has worked with a total of 258 students ranging from 3rd graders, to high school and college students to spread awareness and understanding.

 Dementia is not something that is just going to go away. According to the Wisconsin Department of Health Services, there is an estimated 107,807 citizens in the state of Wisconsin affected by some form of dementia, and that number is expected to increase to 213,238 by 2040. The following table shows those estimations in the counties the ADRC of Southwest Wisconsin serves.

As those living with dementia increases, community wide education/awareness services will become increasingly important to individuals who wish to remain active and living at home and to the sustainability of the state’s long term care system.   The funding for this particular program will come to an end on December 31, 2017 unless the state legislator’s Joint Finance Committee takes action to put funding into the 2017-2019 state budget to continue the dementia care specialist program. If you personally or someone you know, is affected by dementia, you can make a call to your local legislator to share your concerns about continued support of statewide education/awareness services serving those with dementia and their families.   

For more education and support, contact your local Aging & Disability Resource Center by calling 877-794-2372.  Know you are not alone!