Engaging Adults with Dementia

Dr Alison Phinney wants to better understand what it is like to be living with dementia. Since her early years in nursing, she has been reaching out in unique ways to help older adults successfully cope with the consequences of aging and disease. Now, through her research at UBC, her goal is to find ways to help those experiencing dementia continue to be engaged in life.

“It’s distressingly easy for someone with dementia to stop being active in their community and lose their sense of well-being,” says Alison. When seniors lose their sense of purpose and belonging in family and community, they become deprived of what researchers like Alison call “social citizenship.”

The research uses qualitative methods to examine how people with dementia and their families experience the impact of cognitive impairment on their everyday lives, how people with dementia cope through involvement in meaningful activity, and the role that families and communities play in supporting them.

“A lot of my work is focused on hearing or listening to that voice of dementia,” says Alison. By hearing people’s experiences in their own words and seeking to understand this as much as possible from their standpoint, Alison’s goal is to build up and sustain social citizenship. “I’ve learned a lot about the importance of participation and growth,” she says. “Dementia does not change our desire to be a part of a community, to connect with others and to have something to contribute.”

Two of the ongoing projects Alison is overseeing are aimed at giving people with dementia the opportunity to express themselves and to grow and participate in life to the fullest extent possible, free from discrimination.

YALE ROAD CENTRE PROJECT: THE ROLE OF ART IN PLACEMAKING IN TRANSITIONAL CARE HOMES
In partnership with Emily Carr University and Fraser Health Authority, Alison’s research is helping to turn a challenge into an opportunity. The Yale Road Centre is a transitional care facility in Surrey housed in an older building with little budget for interior design. “People with dementia become more attuned to the aesthetics of their surroundings,” says Alison, “and care facilities can be barren environments, places of aesthetic deprivation.” Alison’s team worked with Emily Carr University students to create artwork to bring colour and life to the facility as well as provide way finding cues. “It’s about making the unfamiliar, familiar.”

Once the artwork was installed, the researchers looked at whether the art provided opportunities for dialogue and social engagement. They found that the presence of “real” art could invoke important emotional responses. The research demonstrates that older people benefit from expressing themselves creatively. “We heard stories of people’s past and also stories of what they wished for,” says Alison. “By inviting conversation with people with dementia, it creates openings for hearing the voice of dementia.”

HOW COMMUNITY-BASED PROGRAMMING CAN INFLUENCE SOCIAL CITIZENSHIP
Community-based programs are becoming more common as a way to support people with dementia who are living at home. However, there is little understanding about their benefits and challenges.

To address this, Alison’s research group is conducting a two-year ethnographic study at two different sites: a traditional adult day program and a social and recreational group for people with young onset dementia. Findings to date reveal that the latter, with its strong focus on “normal and ordinary activities,” supports important aspects of social citizenship for its members, including:

Reducing Stigma Activities are designed to bring group members out into the city where they can see and be seen. This visibility helps create community awareness and understanding of what it means to live well with dementia.

Promoting Participation Group members are afforded opportunity to engage in the life of the city. Through their active participation, members are contributing to the creation of an inclusive urban space.

Building Community The commitment to shared group activity promotes a strong sense of emotional connection and social belonging amongst the members of the club.

Submitted by Alison Phinney and Jennifer Baumbusch