The Pennswood Village Cognitive Well-Being Team: Combating Fear with Education

Pennswood Village residents are known for their caring, welcoming and inclusive culture. Recently, residents became more interested in learning more about how to support those dealing with a dementia-based diagnosis. Although all new residents move to an independent living apartment when they first come to Pennswood Village, most already know of someone who is dealing with dementia.  According to the Alzheimer’s Association, 5.8 million American are currently living with dementia and that number is expected to rise to 14 million by 2050. As a proactive senior living community, Pennswood Village’s leadership has supported the foundation of the Cognitive Well-Being Team, a group comprising of both staff and residents that focuses on cognitive health and support for those with cognitive difficulties.  Their efforts will better serve existing residents, as well as those who will become a part of our community and may face this diagnosis in the future.

Cognitive shift vs. dementia

One of the first subtle changes the Cognitive Well-Being Team is making is to alter the language used around dementia. Specifically, the group will encourage those in our community to stop using the word “dementia.” As many will attest, a diagnosis of dementia doesn’t mean the same for each individual, nor do the associated side-effects that come with the cognitive shift. 

In our society, the term ‘dementia’ is feared just as much, if not more, as the diagnosis of cancer.  There can also be a sense of shame around this diagnosis because having cognitive shift means that someone’s interactions and behaviors will inevitably change.  Often times individuals will withdraw instead of sharing that they are struggling because they may fear being labeled. By changing the terminology from a ‘person dealing with dementia’ to a ‘person living with cognitive shift,’ caregivers and friends are reminded that this individual, not the diagnosis, will always come first.   

Combating fear with education

The Cognitive Well-Being Team began by sharing information and educational materials about cognitive shift with the entire community – staff, residents and family members alike. 

“There’s so much fear surrounding cognitive shift,” explained Amy Keiper-Shaw, head of the Cognitive Well-Being Team and Director of Resident Life. “The first step to combat this fear is through education.”

To that end, the team has been sharing videos with residents on the Touchtown app and on the library computers, writing bulletin articles, adding resources about cognitive shift to the library, conducting staff training, and has even hosted the world-renowned Teepa Snow.

Teepa Snow’s Positive Approach® to Care

Recently, Pennswood Village hosted a day-long seminar led by Teepa Snow, who founded the Positive Approach® to Care (PAC) that “provides dementia care training, services, and products around the world.” This seminar – which was attended by residents, staff, family members, and colleagues from other senior living communities – focused on how caregivers, friends and family can change their approach to individuals having cognitive shift to create a more positive and empowering environment.

Using volunteers from the audience, Teepa acted out common scenarios and demonstrated how slight alterations can help positively change the interaction, giving the audience valuable takeaways and tools to use in their everyday life.

Elaine Daniels, a Pennswood resident, demonstrated how the Positive Approach to care could help during a mealtime interaction.

“She tried to show us ways we as a community could help and interact with each other,” said Elaine. “I felt it was a rather personal approach to how you could interact with people who have all kinds of cognitive problems.”

Elaine immediately saw the value of Teepa’s Positive Approach® to Care.

“I wish I had known some of these things when my mother was diagnosed with Alzheimer’s,” Elaine said. “I’ve reached out to friends who are dealing with cognitive issues and told them about Teepa’s website and methods.”

Teepa also introduced The GEMS®: Brain Change Model, which is described as follows:

The GEMS model recognizes the dynamic nature of the human brain and its abilities. Unlike other cognitive models, it acknowledges that everyone’s abilities can change in a moment. Modifying environments, situations, interactions, and expectations will create either supportive positive opportunities or result in distress and a sense of failure. Just as gemstones need different settings and care to show their best characteristics, so do people. Rather than focusing on a person’s loss when there is brain change, seeing individuals as precious, unique, and capable encourages a care partnership and is the core of this model. Providing supportive settings for everyone, including care providers, allows them to use what they have to be their best. The GEMS advocate that everyone living with brain change when given the opportunity will shine.

– Teepa Snow and Positive Approach® to Care Team

This care model very closely aligned with Pennswood Village’s guiding principles that state: “Pennswood Village is guided in its philosophy and practices by the principles of the Religious Society of Friends (Quakers), particularly the basic tenet that the spirit of God resides in each of us. Respect for the sanctity of every life is inherent in that belief. The acknowledgement of that sanctity affects the quality of care and services provided for residents, relationships among residents, employees, and Board members, our business practices, and our endeavor to interact with others in an equal, fair, respectful, and loving manner.” 

Focus on prevention

The focus of the Cognitive Well-Being Team isn’t only about what to do after cognitive shift has begun, but they also encourage the community to take an active approach in aging to help prevent, or slow cognitive shift. The team has been focusing on engagement and wellness programming such as Drums Alive, laughter yoga, art programs with Artz Philadelphia, movement sessions and improv.  In addition, the team has partnered with local schools for intergenerational programming that offers fun ways for residents to focus on overall wellness and bridges generations.

There’s also a subgroup of the Cognitive Well-Being Team that focuses on spirituality.  This team does not specifically focus on a religion, but rather focuses on being engaged and feeling a sense of purpose in life.

Plans are also in the works to introduce Java mentors (a group of volunteers that will go out and visit residents in their homes who may otherwise be isolated), develop a volunteer program comprised of residents and local students, produce a resident-written play about living with cognitive shift, offer a boxing group for those coping with cognitive and/or physical change, and work with local organizations to create a dementia-friendly Newtown.

“The Cognitive Well-Being Team will never be done,” said Amy. “We have to be fluid. Needs are going to change.” 

One of the big takeaways Amy hopes everyone remembers is the understanding that, “If we can slow down and change our behaviors – not the individual who has cognitive shift – but change our interactions, and we take the time to pry open the shell and find the pearl inside, both the residents and staff will be happier and have a fuller life.”

For more information about Pennswood Village, its resident-led programs, or to take a tour, call 215-968-9110 or click here.