Pacific dementia carers ‘suffer in silence’ as group seeks support from local board

Pacific families caring for loved ones with dementia can struggle behind closed doors, with a community advocate calling for greater support for caregivers.

Sapini Unoi, from caregiver support group Le Malaga, raised the issue with the Manurewa Local Board at its monthly business meeting on Thursday.

Unoi told elected members the scale of the challenge meant Le Malaga could not provide solutions on its own.

“We've realised really quickly that we cannot do this by ourselves, and because it's such a huge space and area, it's never going to be done by myself,” he said.

“And so we're going to need, you know, local boards and things to be able to try and connect and see how we can collectively try and provide a solution now.”

Drawing on his experience, Unoi questioned whether figures on unpaid dementia care fully captured the amount of caregiving happening within families.

Members of Le Malaga, a community-led caregiver support group, at a community event. Photo/Le Malaga

He said some Pacific caregivers in particular could feel pressure to carry those challenges quietly, because speaking up about what they were going through could feel like going against cultural values.

“And so that's the stigma that we're trying to break.

“Our core values are so heavily ingrained into us that we've learnt along the way that you shouldn't, that silence, you know, you suffer in silence,” he said.

Sapini Unoi with his mother, Mutalau, who is living with dementia. Photo/RNZ/Marika Khabazi

He said being open about his own experiences was part of showing other caregivers it was okay to be vulnerable and seek help.

“Sometimes being able to be vulnerable will lead to steps of being able to get the support.”

Le Malaga is building a network for caregivers, including a WhatsApp support group.

Board member Glenn Murphy asked how many people the group supported. Unoi said it had about 69 members, with two more joining that morning, and was in contact with many other caregivers.

“I would say I'm in contact with thousands of caregivers just that are not directly involved in the group,” he said.

“I'll definitely say in the thousands that I'm in contact with, especially here in New Zealand.”

Le Malaga is also exploring the development of an app to support caregivers, including families caring for people with dementia who wander.

Unoi said getting the app to a testing phase could cost about $500,000, although the group had people with technology expertise who could potentially reduce the cost.

He said there were caregivers in the group, as well as people currently wandering, who could potentially be involved in testing it.

Board members acknowledged the wider impact dementia could have on families.

Marshal Ahluwalia, a board member, said dementia did not affect only the person living with the condition.

“You don't have one person affected, you have the whole family affected when somebody faces this situation,” Ahluwalia said.

Ahluwalia suggested an existing service supported by the local board could also help caregivers, but said more discussion was needed.

Another board member, Raewyn Bhana acknowledged Le Malaga's work and said they had seen the group's mahi in the community.

Unoi said the group was in contact with many more caregivers beyond its members and could not provide support on its own. The board formally received the presentation.

LDR is local body journalism co-funded by RNZ and NZ On Air.