Understanding Dementia

New toolkit guides professionals, others in scenarios involving dementia

Sarah Endicott, clinical assistant professor and geriatric nurse practitioner, discussing a dementia simulation with DNP students. PHOTO BY ALEXANDER ANDRE

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Charlie is holding up the line at the pharmacist. He has a prescription bottle in his hand and a confused look on his face. He insists that he needs a refill.

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

Obviously Charlie does not.

Customers like Charlie show up at pharmacy counters, banks, and retailers throughout Wisconsin every day. That is why this scene is 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.

The toolkit prepares professionals, like pharmacists, as well as family members and other front-line staff to face and handle situations like Charlie’s. In this case, a pharmacist familiar with dementia might give Charlie enough medication to last a few days, perhaps also contact a family member associated with Charlie’s account, and immediately relay the interaction to the prescribing doctor so Charlie’s healthcare team could address the issue with Charlie and his caregivers.

A student wearing simulation equipment to better understand what a clinic visit is like for patients with dementia
A student wearing simulation equipment to better understand what a clinic visit is like for patients with dementia.

Those are the kinds of responses that the toolkit, along with short training videos also developed by CARE, intends to inspire by building the communication and advocacy skills that pharmacists, retailers, and others need to respectfully engage people living with dementia and their families.

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 is increasing, and by 2040 is expected to be more than double what it was in 2015.

“The project started by listening to the needs of people most affected by dementia,” says Sarah Endicott, a geriatric nurse practitioner and clinical associate professor at the School of Nursing. Endicott is one of four people at the school who developed the training materials. Endicott, along with Lisa Bratzke, assistant professor, Paula Woywod, clinical instructor, and Diane Farsetta, CARE outreach specialist, combined their practice and research expertise with the input from families dealing with dementia to create scripts for the six simulations.

The team trialed the simulations, first with School of Nursing students, then with UW–Madison students from other health sciences and allied disciplines, and finally with community members involved in dementia-friendly community efforts. They refined the simulations with feedback from each group, which they also used to shape the rest of the toolkit, including 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 other scenarios are set in other commonly frequented locations and situations: a bank, clinic, restaurant, grocery store, and telephone conversation. The team wanted a diverse group of settings and interactions to make the simulations useful for a broad range of organizations and businesses. Dementia-friendly community groups can include the videos and simulations in trainings. Healthcare organizations can use them for staff professional development. Health sciences 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.”

Joy Schmidt is a social worker and the dementia care specialist for the Dane County Aging and Disability Resource Center. She is a featured expert in one of the training videos, and she provided feedback to the team on the simulations and toolkit. Now that the materials are available, Schmidt is eager to use them in her work.

Schmidt trains community groups and organizations on dementia friendly practices, and she frequently gets questions that are covered in the scenarios. The phone call from a confused patron is one, she says, that comes up regularly. “I think it is really neat that they are taking specific situations from community members and covering how you might handle those,” she says. “What I appreciate most about Diane and Lisa is that they really are thoughtfully seeking what the community needs and not creating something just because they think it’s a good idea. I’ve never worked on such a cool project.”

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.

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