Why Your Voice Matters - Carers’ Strategy Action Plan
- admin1356
- Jan 21
- 2 min read
Living with, or caring for someone with, younger onset dementia (YOD) brings challenges that are often invisible, misunderstood, or overlooked. YOD affects people in the midst of working life, parenting, relationships, and community roles, yet most systems and supports are designed with older people in mind. As a result, people living with YOD, their carers, and their whanau are too often left trying to fit into services and policies that do not reflect their reality.
This questionnaire has been developed by the Young Onset Dementia Collective to change that. It is a way to safely and respectfully gather lived experiences, highlight shared challenges, and identify what truly matters to our community. Your responses will help inform collective advocacy and submissions, including feedback on the Carers’ Strategy Action Plan, so that decision-makers hear directly from those most affected. If preferred, you can also submit your own individual feedback via the MSD website here.
Your voice is important. The voice of your whanau is important. When experiences are shared one by one, they can be dismissed as individual stories. When they are brought together, they become a powerful collective voice that shows patterns, gaps, and urgent needs that cannot be ignored.
You are welcome to answer as much or as little as you feel able to. There are no right or wrong answers. Every response helps build a clearer picture of what it really means to live with and care for someone with younger onset dementia in Aotearoa New Zealand.
This is an opportunity to stand together, to be counted, and to help shape a future where people living with YOD, their carers, and their whanau are recognised, supported, and understood. By adding your voice, you are helping ensure that our collective experiences lead to meaningful change. Note, the opportunity to feedback to MSD closes on 12 March 2026
