She said it feels like the illness runs in her family as she watched an aunt, uncle, and her father all develop symptoms.
“It is a hard thing sometimes, it is described as losing somebody before you lose them - but they are still there.”
Knox works as the co-ordinator for the Feilding and Dannevirke Marion Kennedy Club, a group that provides social and cognitive stimulation for people with dementia whilst also giving their carers respite.
They have organised the Dannevirke Alzheimer’s memory walk on Thursday to raise awareness for dementia and reduce stigma associated with the disease, such as some people choosing to withdraw.
Supporters will meet at 10.30am in The Hub carpark, at 24 Allardice St, for a short walk around the block and along part of High St before finishing back where they started.
“It is about getting out there to say we are here to help.”
Barbie Knox pictured in the 2023 Dannevirke Alzheimer's Memory Walk.
She said dementia was an umbrella term and Alzheimer’s was the most common form.
“It is a disease and not a normal part of ageing, although age is a contributing factor.”
She said in the past, people from rest homes, families, club members and carers had all taken part in the walk wearing purple clothing - the official colour of the Alzheimer’s movement.
Knox said it was important to understand that people with Alzheimer’s and dementia were still themselves so making such a public display was crucial to breaking down stereotypes associated with the disease.
“I love the fact that they probably know more than you do and aren’t afraid to tell you.”
She said the organisation provided day programmes, education and support for those with dementia and their families.
“If you get diagnosed with cancer there is a lot of support around and it is a really public thing, it would be great to have people know there is support for people who have dementia - we are here.”
Knox said her best advice for families or carers was to understand “that person is still there”, and to step into their world, and show reassurance, validation, and patience.
“Sometimes people’s personalities can change, but we are still encouraging and engaging with them and setting them up for success.”
Michaela Gower joined Hawke’s Bay Today in 2023 and is based out of the Hastings newsroom. She covers Dannevirke and Hawke’s Bay news and loves sharing stories about farming and rural communities.
