Considering the Impact of LIVING the Dementia Journey

Dementia education program facilitator reflects on positive changes she’s witnessed

By Kristian Partington

Reshaping the way people view Alzheimer’s disease and other forms of dementia to challenge stereotypes embedded in so much of our society doesn’t happen overnight. Change is often subtle – as one person is awakened to a new understanding, their approach to a person living with dementia alters. Their language changes, along with their tone and perhaps their pace, and through this progression the person living with dementia will hopefully find a more patient caregiver, supporter and friend before them.

Sharon Button has seen this progression unfold throughout The Village of Taunton Mills. From her vantage point as facilitator of the Schlegel Villages LIVING the Dementia Journey dementia education program, she has seen teams evolve during the past 30 months in their understanding of life with dementia.

The six-module program, broken down through the acronym LIVING, and its initial overview offers participants the opportunity to reflect on what life under a dementia diagnosis might be like.

L is for “learning about the experience of living with dementia,” and it offers people a glimpse of the experience of dementia from the perspective of those who are living with it.

I is for “improving personal well-being,” which is about exploring everyone’s definition of well-being and discussing how care partners can use creativity and collaboration to engage people living with dementia in decision-making.

is for “validating and honouring each person in the moment.” This module focuses on the importance of flexibility and self-determination and the threats to these basic human necessities that exist in many care settings.

is for “interpreting personal expressions, actions and reactions.” This cornerstone of the philosophy seeks to shift the current, primary focus on interventions for “responsive behaviours” to better understanding and meeting each person's needs proactively. This module also suggests that personal expressions, actions and reactions are reflections of personal identity, experiences, desires, and needs.

N is for “nurturing all relationships”, and people gain insight into the concepts of relationship-centred and relational care in the understanding that every care partner has a part to play in the enhancement of life quality.

G is for “greeting each day as an opportunity for meaning, purpose and growth,” and celebrating the experiences and rituals of life, leisure, culture, and the spirit.

In the early stages of the program’s introduction, Sharon admits that it was difficult to gauge its impact but today, in the middle of Alzheimer’s Awareness Month as she considers what she’s seen and learned in the past two or three years, she says the small successes and subtle changes have added up to an overall shift in understanding. It’s an ongoing process, she notes, and there is still much to be done, but the results she sees in the daily interactions between team members and residents prove it’s worth the effort.

“The change in language,” is something that Sharon says is prevalent in the village today. “Our team members are very mindful of the language they’re using and it has improved maybe 80 per cent since this program started. I’m not hearing any of the language that you used to associate with long-term care,” she adds. “It’s much softer and more respectful.”

That respectful tone can’t help but spill out into action and with that respect comes more opportunities to build deeper relationships among villagers. Stronger relationships among team members are also an added benefit to the program, Sharon points out, and stronger teams tend to provide better support to residents.

Now she sees team members taking extra time, often during breaks, to simply walk with a resident or sit and chat over coffee with them. They’ll sit and read a book in the common area with a resident as opposed to sitting behind a desk.

“These are all things I see happening,” Sharon says. Three years ago, she didn’t see it but small changes over time as more people work through the program have created the space she sees today, and that is why she’ll continue to promote this new understanding of dementia.