Connecting people living with dementia

The role of peer support as a non-clinical intervention in disease management is well understood, especially for cancer and diabetes diagnoses. Facilitated peer connections have the capacity to validate experience and enhance psychosocial wellbeing, elevating peer support to its role as a valuable therapeutic tool. But what if the target cohort live with progressive cognitive impairment; could a peer support program for people diagnosed with dementia be a credible and sustainable form of support? 

A group of advocates living with dementia and working with Dementia Australia in 2021 believed it could. Understanding their own desire to speak with someone who had experienced the devastation of a diagnosis, the advocates spearheaded a working group to conduct a wide-ranging consultation process that included surveys, focus groups and in-depth interviews. 

Their work ultimately resulted in a pilot program, ‘Connecting Peers,’ a one-to-one peer program based on a mutual support model and co-designed with people living with dementia and carers, launched by Dementia Australia in July 2022.

How the model works

The Connecting Peers model sees a Peer Leader — who may be a person living with dementia or a carer (including former carers) — matched with someone newly impacted by a diagnosis. A Peer Leader living with dementia will support a peer participant living with dementia. A carer or former carer is matched with a current carer.

Participants are matched according to their stated matching preferences, which may include diagnosis, carer relationship, gender, age, as well as shared interests or hobbies. Participants connect via phone, which means that the program can support anyone in Australia, regardless of their location.

The passion for the program by the Peer Leaders is clear. One Peer Leader, Scott Cooper, who lives with young onset dementia, Logopenic variant primary progressive aphasia and Corticobasal Syndrome (CBS), said he hopes he can be a positive role model for others.

“My life is different now, but it’s not all bad,” said Scott. 

“I think it’s important to try and help people navigate their way through.”

Heather Cooper, who is living with Alzheimer’s disease, said being a Peer Leader has given her a new perspective on her diagnosis.

“Helping others to normalise some effects of dementia has eased my own acceptance of it,” said Heather. 

A formative evaluation conducted by NSF Consulting in June 2023 reported that the pilot was a significant success, describing it as “an important program that fills a need for 1:1 peer support for people living with dementia.” The report endorsed the Dementia Australia model as one that was “based on best practice peer support principles, tailored for people with cognitive impairment.”

Empowering people living with dementia

Connecting Peers continues to use the same empowerment model to this day, recognising the value and expertise of lived experience. It follows ‘a strengths-based approach that emphasises the ability of people facing life-altering circumstances to define and actively engage in solutions to the problems confronting them’.

Participant, Gail Morley, who is living with Alzheimer’s disease is proof of the program’s success. She initially joined the program to receive support. Today she helps others in her role as a Peer Leader, describing her experience as “the best thing since my diagnosis.”

Peer Leader, Ann Pietsch, who was first diagnosed with young onset dementia, now Lewy body dementia, said “she gets as much as she gives” from her role. 

Today, more than 100 Peer Leaders are involved in the program at any one time, with around 15% of the peer leader cohort living with dementia and the balance comprised of carers and former carers. In the 2024-2025 financial year, the program delivered more than 900 hours of peer support across Australia, with the number of people seeking support in 2025-2026 already 50% higher than the same time last year.

With an estimated 446 500 Australians living with dementia in 2026 and that number expected to exceed one million by 2065 without significant intervention, the need for consumer-led, responsive and flexible interventions that can be available to people at the earliest possible point is imperative.

Connecting Peers is an example of the life-changing benefits that can occur when we listen to the voices of people living with dementia and work with them to co-design a program that empowers them to support themselves and others. 

For more information about Connecting Peers or for any questions about dementia, contact the National Dementia Helpline. The helpline operates 24 hours a day, 7 days a week, 365 days a year. Contact 1800 100 500 or visit dementia.org.au/get-support/national-dementia-helpline for email and live chat options.

Melissa Farley is the National Manager of the Connecting Peers Program at Dementia Australia. Melissa joined Dementia Australia as a Dementia Support Specialist in 2021 after many years working in the community health, aged and disability sectors in regional Victoria.