Listening and learning from people who are in the midst of experiencing living with dementia is a core part of the way we work at Alzheimers NZ.
With dementia, no two experiences are the same, and what works for one family does not always work for the next.
There is a group of people who make up the Alzheimers NZ Lived Experience Advisory Committee. These people come from different parts of the country, with different backgrounds and experiences. The thing they have in common is they either care for someone living with dementia, or they live with dementia themselves.
One of the members of the Advisory Committee is Sisa (pictured above). Sisa has cared for her father for many years, and even now, although he is in full time care, she brings him home 1-2 times per month for family time, which includes his favourite island desserts, music, and love.
Sisa joined the Advisory Committee to share her family’s journey. Before joining the committee, Sisa wondered, “What can I do to support others and raise awareness, particularly in the Pasifika space?”
Sisa’s father was a very good cricketer and musician. He was a quiet, caring and loving parent who would be the one Sisa and her siblings would go to, if their mother said no.
Just before diagnosis, Sisa’s parents were using their retirement to travel overseas visiting their two sons and their families in Australia as well as visiting their beloved home, Samoa. This all had to stop as his dementia worsened, back in 2020.
It’s been hard on the family, particularly Sisa’s Mum who has now lost her best friend, soulmate and husband.
This feeling of loss is echoed by another Advisory Committee member, Jennifer whose husband has young onset Frontotemporal Dementia. Jennifer shared that, “I’ve lost my husband, my best friend, my companion, the person I did everything with.”
A diagnosis of dementia is not something most families prepare for or consider in their future planning. So, when a diagnosis does happen, most people are overwhelmed and unprepared for how to cope and what to do next.
Jennifer says, “We didn’t know what help was available, or how to access it.”
This kind of feedback from the Lived Experience Advisory Committee helps tremendously when Alzheimers NZ is designing our programmes and areas of work.
Their feedback is sought on papers prepared for politicians, the design of new programmes, research projects, information resources and events.
One of our other Advisory members, Adrienne, has said that “there are different sorts of support that suit different people, and there’s variations in the services available. If you know what’s out there, you can pick and choose which ones suit your family.”
Adrienne’s partner of almost 50 years, Bob, has Alzheimer’s. Adrienne and Bob wanted to be very open about his diagnosis. Right from the start of their journey, Bob hoped to continue to live as he’d always done. He wanted to do the sorts of things he likes to do, for as long as he can.
So, they made the decision to tell their friends and family, so everyone knows the situation. The diagnosis is acknowledged, but it’s not a focus of their lives.
The Lived Experience Advisory Committee plays a crucial role at Alzheimers NZ. They help us to shape our direction, and work. Their input is invaluable, and we couldn’t be as successful in our work without them.
Thank you so much for your support of our work and our ability to work in support of all people living with dementia across Aotearoa New Zealand.