From Isolation To Connection: Online Groups Support People With Rare Dementia

From a home in Raglan, a twice-monthly Zoom call is helping New Zealanders living with a rare form of dementia to find connection, confidence, and community.

Facilitated by Aphasia New Zealand, the online groups bring together people with Primary Progressive Aphasia (PPA) and their partners from across the country. PPA is a rare form of dementia, resulting in the gradual deterioration of a person’s ability to use and understand language, often leading to frustration and social withdrawal.

“The online groups remove barriers like travel and fatigue, making it easier for people to stay connected, keep communicating, know they are not alone” says Speech Language Therapist Christa Grbin.

For participants, the impact is significant. “It’s a relief to talk with others who truly understand — we don’t feel so isolated anymore,” says Helen from Christchurch.

“The group has been life-changing for us,” says Peter from Alexandra. “Navigating PPA can be a lonely voyage. Connecting with others who truly understand is uplifting.”

Research into PPA is limited, but there is growing evidence that using and practicing language can help. The University of Chicago has seen some positive results with the Communication Bridge programme, with some New Zealanders taking part in this.

Friday, 10 April 2026 marks an international awareness day for Primary Progressive Aphasia, highlighting the need for greater understanding and support.

Note:

AphasiaNZ does not receive any government funding. If you feel we have helped you, please consider a donation: https://www.aphasia.org.nz/donate-to-aphasianz/

AphasiaNZ is a registered Charity with Charities Services: CC47907

Aphasia is a language disorder usually associated with stroke, but can also occur with brain injury, brain tumour or other neurological diseases. Aphasia affects a person's use of language - finding words and holding conversations, understanding spoken language, reading and writing.

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