The power of memories

This story was first published in the Newcastle Herald Weekender in print and online on May 20, 2023.

The Memory Room is a wonderful local project bringing connection, conversation, and joy to people living with dementia and those that care for them.

The program, which is free for library members and unique to Newcastle, was created by Kay Pisel, Home Library Service Team Leader for Newcastle Libraries. It aims to create opportunities for social engagement and help overcome some of the isolation that can occur after a diagnosis of dementia.

Pisel was inspired to create the program through her work in the Home Library Service, which delivers items, like books, DVDs, and magazines, to the homes and aged care facilities of community members who can’t physically access the library for different reasons, including dementia.

“I’ve gained an insight into the difficulties that living with dementia presents to those who wish to continue to enjoy their public spaces and cultural centres and remain active members of their local community,” says Pisel.

Over 100 diseases may cause dementia, the major symptom of which includes a decline in brain function and can affect memory, thinking, and behaviour.

In 2023, there are more than 400,000 Australians living with dementia and an estimated 1.5 million people involved in caring for them. Around 65 per cent of people diagnosed with dementia live in the community.

“Research shows that people who first get a diagnosis of dementia feel incredibly isolated in their community because there’s an inaccurate stereotype of what dementia is – most of us don’t really understand it,” says Pisel. 

Indeed, a 2022 report by Dementia Australia found that 87 per cent of respondents living with dementia ‘felt people patronised them and treated them as if they are not smart’. Community understanding of dementia is somewhat limited,  particularly its progressive nature and the many abilities of people with dementia in the early and moderate phases.

“I felt that there were no social activities for people who were recently diagnosed with dementia, who may no longer be able to work. They still might be able to drive. They still want to be active members of their community and they still want to contribute.”

“I think libraries are so well placed to offer this support. We are public community spaces that are safe, free, non-judgemental, and inclusive.”

A scholarship provided by the New South Wales Public Library Association enabled Pisel to develop the Memory Room, with guidance from Dementia Australia’s Newcastle office. It is the first dementia-focused program of its kind offered through the public library service.

“We wanted to start it in 2020, but, of course, there was the pandemic.”

So, Pisel and Alice Ropata, a local art therapist and the project’s co-facilitator, created the Memory Room Online. It features various historic images – such as the Pasha Bulker at Nobbys, Sideshow Alley at the 1957 Newcastle Show, fishing on Lake Macquarie, and the Royal Newcastle Hospital – along with questions designed to trigger memories.

It also houses the Memory Room podcast series, online dementia resources, and information about borrowable items like memory kits and related books.

In-person Memory Room sessions started at the end of 2020. Held fortnightly on Tuesdays and Wednesdays, each workshop runs for 90 minutes with no more than 12 people in attendance – six people living with dementia and their partners, family members, or carers.

After morning tea, images and memorabilia are shared around the room to help prompt reflection and conversation, followed by an art-focused activity led by Ropata. Newcastle-based music therapist Susan Ashley-Brown also takes part in sessions once a month.

Sessions are held in dedicated library spaces or locations around Newcastle and are always themed. Memories of childhood, family pets, aroma, music, and self-care are among those previously explored.

“We recently held one at Wallsend Library, where we partnered with Dementia Australia,” says Pisel.  The session included art, music, the ‘magic table’ [an interactive light sensory table with games and activities for people living with dementia and cognitive disabilities], and stories on a digital story wall.

“We also run sessions in the community too. We have held one at Noah’s overlooking Newcastle Beach, on the William the Fourth vessel, and down at the Newcastle Museum for the ‘In the Lines’  exhibition on Defence Force tattoos.”

Kotara-based couple Marie and Peter Cunningham, who have been married for 56 years, have been attending the Memory Room sessions for over a year and speak highly of its benefits.

“It’s always good to go. It’s definitely a positive thing,” says Marie, who was diagnosed with dementia in 2008, of the Memory Room.

“Marie is much brighter after we go. She comes out very bright and sparkly and says ‘Wasn’t that a lovely day? Weren’t they nice people?’ She loves it,” says Peter, her husband and carer.

“Everyone there are all married couples – one of them has dementia and the other is a carer. It’s good meeting people in the same situation as us.”

Marie and Peter, who are 80 and 81 years old respectively, both retired over 20 years ago, 18 of which they spent volunteering for local charities like Vinnie’s and Meals on Wheels.

“With limited mobility now –I’ve had some problems with my ankle – we’re not doing voluntary work. So, this is a good activity for us,” says Peter.

Peter recalls one particular session when a photo of a former dance hall in town ignited memories amongst those in attendance.

“Kay brought out a photo. It used to be a place to go to dance in Newcastle on Hunter Street called the Palais. A lot of people our age used to go there regularly. A few other couples remembered it as well.”

Pisel believes that Memory Room helps to reduce social isolation for people living with dementia and those that support them.

“There’s conversation, community, laughter, and joy,” says Pisel.

“Most people in the community think of dementia as a debilitating and distressing disease. Even so, I feel very fortunate and privileged because I see the joy. There’s a lot of laughter in each session, which I love.”

Pisel is both passionate about and proud of the program she has created and is working hard to extend its reach. “I would love for other libraries to pick it up.”

To help create industry awareness of the program, she has presented at conferences for the Australian Library and Information Association and NSW Public Library Association. And, with the support of a second NSW Government grant, Pisel and co-facilitator Ropata are now developing a toolkit to assist other libraries to engage their own dementia programs.

“Some libraries are commencing programs and it feels like there is some momentum.”