Crafting Tools for Dementia Friendly Care and Communities

Charlie holds up a prescription bottle and looks at the pharmacist, confused.

“You are not due for a refill on your metoprolol,” says the pharmacist. “I refilled this medication for you Tuesday. Remember?”

“I need a refill,” Charlie responds. “The bottle is empty.”

Charlie’s son asks, “Do you know where the bottle is that you filled two days ago? You should have plenty of pills left.”

The scene mirrors everyday struggles faced by people living with dementia and their families. It’s the beginning of one of six scenarios in the new “Dementia Friendly Toolkit: Role Play Simulations for Care and Community Settings” from the Center for Aging Research and Education (CARE) at the University of Wisconsin–Madison School of Nursing.

What could the pharmacist do? How could Charlie’s son help out?

These are the types of questions that the toolkit prepares professionals, family members and front-line staff to face. The toolkit, along with short training videos also developed by CARE, helps build communication and advocacy skills to respectfully engage people living with dementia.

CARE launched the year-long project in response to family caregivers’ stories of challenging medical appointments, community groups’ requests for dementia friendly training materials, and the increasing number of people living with dementia. In Wisconsin, the number of people with dementia in the year 2040 is expected to be more than double the number from 2015.

“The project started by listening to the needs of people most affected by dementia,” says Sarah Endicott, DNP, APNP, GNP-BC, a Clinical Associate Professor and one of four people at the UW–Madison School of Nursing who developed the training materials.

Based on community input and their practice and research expertise, the project team—Endicott, Assistant Professor Lisa Bratzke, PhD, RN, ANP-BC, FAHA, Clinical Instructor Paula Woywod, MSN, RN, CCRN, and CARE Outreach Specialist Diane Farsetta, PhD—drafted simulation scripts.

The team trialed the simulations, first with School of Nursing students, then with UW–Madison students from other health sciences and allied disciplines, and then with community members involved in dementia friendly community efforts. Each group’s feedback helped improve the simulations. The feedback also shaped the toolkit, which in addition to simulations includes facilitator and discussion guides, setting and equipment suggestions, additional information about each scenario and links to community resources.

“The most profound moment for me,” says Endicott, “was when a student noted that applying the communication techniques did not take any more time than rushing through a clinic visit with a set agenda.”

When the students playing the roles of healthcare provider and family caregiver “included the person living with dementia in the conversation, the visit went more smoothly and everyone felt better about the outcome without taking up more precious clinic time,” Endicott adds.

The simulation trials that Bratzke most remembers involved community members who work with older adults living with dementia.

“They were moved by the simulations and felt the isolation, fear, frustration and confusion that is so common among individuals with dementia and their family members,” says Bratzke. “That was when I really felt like we were getting this right.”

The range of scenarios—involving a bank, clinic, restaurant, grocery store and telephone conversation, in addition to the pharmacy—allows wide use of the toolkit. Dementia friendly community groups can include the videos and simulations in their business trainings. Healthcare organizations can use them for staff professional development. Instructors can use them as active learning exercises. Advocacy groups can use them in workshops for family caregivers.

“As a nurse, I’m more familiar working with people living with dementia in acute care settings,” says Woywod, “but there’s so much we can do to support individuals living with dementia beyond traditional healthcare settings.”

The toolkit and training videos, which are available on the CARE website, were developed with support from the Ira and Ineva Reilly Baldwin Wisconsin Idea Endowment and the Helen Daniels Bader Fund of Bader Philanthropies. The Evjue Foundation will support dissemination of the toolkit to community groups.


—Diane Farsetta; photos by Alex Andre and Diane