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Stories to tell

A creative multi-media project which celebrates the lives of people with dementia, Interactive Life Stories, is recording the narratives of residents at BCS Maranoa in Alstonville, NSW, explains James Baldwin

Baptist Community Services (BCS) Maranoa has taken on the challenge of using movie making software to record the life stories of people with dementia. With the help of their families, they are creating 10-15 minute documentaries, as well as posters and books, and all within their organisational budget.

BCS Maranoa is an 88-bed residential care facility in Alstonville, NSW, with a specialised dementia care unit accommodating 25 residents. Interactive Life Stories is a project spearheaded by Sharon Dean, a professional carer in the unit for people with dementia, and Greg Price, the facility manager. The first Interactive Life Stories project played out over 18 months in 2011 and 2012, and involved staff, residents and their families working together with external artists and photographers to assist people living with dementia to share their stories through the digital production of movies, posters and books.

Poetry with Norma

The project’s genesis was a discussion between Sharon, a member of the facility’s lifestyle team and Norma, a resident in BCS Maranoa’s dementia-specific unit. Sharon was inspired by Norma, who revealed that she had met the love of her life at the age of 14, worked as a teacher and librarian, and had published award-winning poetry before retiring. Sharon documented their exchanges in a short story entitled Poetry with Norma.

Resident Kath Darragh’s story

Norma’s story was shared with her family and some of the staff at the facility. The residential manager, Greg Price, was intrigued by the potential: “By chance [Sharon] struck up a series of conversations with Norma. I urged her to write an account of this,” Greg said. “I was impressed to the extent that I approached my manager with the idea of using this as a basis for a major project.”

Soon after, he and Sharon wrote a proposal for an ambitious life story project to record and produce the life stories of participants from BCS Maranoa, including residents of the dementia care units. Originally, it was intended that life stories would be presented in the form of books or posters. However, in the initial development phase, Sharon came up with the idea of using a digital video camera, and video became the focus of the project.

Greg developed the budget and a framework to incorporate the 18-month project into the other leisure programs run by BCS Maranoa. This involved consultation with the BCS NSW and ACT community relations unit to lay down strong ethical criteria, including means of consent and strategies to keep people with dementia engaged in their projects. From this, Interactive Life Stories became a fully-fledged project for the broader resident population, with Sharon as the project leader and Greg working on funding and logistics.

Developing narratives

Films are easily produced using video-editing software
Films are easily produced using video-editing software

Interactive Life Stories ran in every BCS Maranoa unit. To ensure the limited places were allocated fairly, the names of residents from each unit in the facility were put into hats and drawn at random. This allowed equal numbers of residents from each of the low-care, high-care and dementia care units to participate and meant no one was competing to get into the program. Once their name was drawn, the person was asked if they wanted to participate. Willing participants received an informed consent package comprising an information sheet and consent form to sign. Family could be involved as guardians if the person had advanced dementia.

The information needed for the production came from interviews recorded with the residents, which involved the use of a camera and microphone. Initially, Sharon had no experience in this area, so she sought advice from a local photographer, Dallas Nock. Dallas kindly volunteered some time to teach Sharon aspects of film production. BCS Maranoa also sponsored Sharon to participate in an ABC Open Workshop where she further developed her skills.

People with dementia can be easily overstimulated, so the interviews sometimes required many attempts to help the subjects feel calm and comfortable. The movie shoot was either a one-on-one interview, with the interviewer off-screen, or a bigger production including staff, multiple residents, family members and other participants. Digital editing was used to create a 10- to 15-minute video.

The books were created in a similar fashion, based on interviews with the resident and incorporating vignettes, biographical narratives and photos. Books were initially made by hand, but were later produced using Blurb (http://au.blurb.com/) – an online software suite used for self-publishing. Hardcover image-wrap books can be printed on demand from Blurb.

Posters were used to promote the films and books around the care facility and were designed by Sharon using a graphics-editing program. They were printed in A3 format, laminated and block-mounted for hanging in residents’ rooms and displaying in common areas of the facility.

Post-production phase

The interactive theme continued into the post-production phase, with the contributors heavily involved in the details of their project. The person featured in the movie or book chose their Interactive Life Story launch date, themes, location and catering, along with the content and layout of the promotional poster and where it was displayed. People with dementia were assisted by their carers and guardians to make these decisions.

By presenting each finished product at a launch, the team – staff, resident, family and participating friends – ensured each resident’s story was shared with people invited by the resident. The launches ranged from small family events with a few staff, through to scores of invited guests including facility staff and community members. The lifestyle staff read the books to residents as part of one-to-one and group activities. The posters are displayed in residents’ rooms so that staff members and visitors can learn their story. The films and books are now treasured legacies for the residents and their families.

Wide range of impacts

The Interactive Life Stories project was a major step beyond BCS Maranoa’s normal business activities. According to Greg, it required considerable brainstorming and creativity to produce a workable framework. The project deepened the personal connections between Maranoa’s care staff and residents.

“Sharon runs the daily care team meetings … she makes sure that each resident has their film, poster or book talked about at the meeting. We try and talk about a resident every day,” Greg said.

A survey conducted in BCS Maranoa before the project showed that 76 per cent of surveyed residents, 84 per cent of surveyed staff and 88 per cent of surveyed relatives believed that residents would benefit from staff knowing their life stories. However, the survey showed that 54 per cent of staff members felt they had little or no familiarity with residents’ life stories. After the project, this figure has decreased, with most staff members reporting that they now know more about the lives of the people they care for.

To date, the project has produced 32 creative products: 10 movies, 11 books and 11 posters, with many more to come. Baptist Community Services has invested in the program and extended it for another six months. Greg Price, the residential manager, has found the program deeply rewarding: “This has been an exciting project and the results are, to a large degree, due to Sharon’s excellent skills and the support of the team at our facility and from the BCS head office. I have every confidence that Interactive Life Stories will continue to unfold.”

BCS Maranoa and Interactive Life Stories was a 2012 Aged Care Standards and Accreditation Agency Better Practice Awards winner. For more information, contact Greg at: gPrice@bcs.org.au

James Baldwin is Contributing Editor of the Australian Journal of Dementia Care. Contact him at jbaldwin@uow.edu.au

 

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