YOUNGER ONSET DEMENTIA? YOU GET TO STAY HOME
- admin1356
- 4 days ago
- 3 min read
For a person living with dementia in early to mid-stage the Total Mobility Scheme is not a “nice to have” – it is what makes everyday life possible. When you can no longer drive safely, struggle with navigation, timing, memory, or sensory overload on public transport, assisted driving services (ie. Freedom Companion Driving Services and the like) become the bridge between staying connected and becoming isolated.
Here we share an article by Dr Bex making clear that proposed changes to the scheme send a troubling message: disabled people should stay home unless a trip is deemed essential. For someone with young onset dementia, that would mean fewer appointments attended independently, less connection with peers, reduced ability to volunteer or work, and fewer chances to maintain confidence, identity, and wellbeing.
Limiting trips or reducing subsidies ignores the reality that social participation is protective for people with dementia. Getting out of the house is not a luxury – it helps slow decline, supports mental health, and preserves dignity. Cutting access doesn’t save money in the long run; it simply shifts the cost to carers, health services, and to the person’s sense of self.
There is also a significant and often overlooked financial impact. People living with young onset dementia and their whanau face steep economic pressure at the very point their income collapses — often forced onto a single wage or out of paid work altogether years before retirement. Despite this, they receive little to no age-appropriate government support, having fallen through gaps between disability, health, and aged-care systems. When transport subsidies are reduced, families are left to absorb the cost privately or carers are forced to give up even more paid work to drive, accompany, and manage travel. What is framed as a transport policy change therefore becomes a direct cost-shifting exercise, compounding financial strain for families already under extreme pressure.
From a young onset dementia perspective, the message of the article is stark: without accessible transport, independence shrinks, isolation grows, and people are quietly pushed out of community life long before they should be. Many of our people with younger onset dementia use this service to attend activities. For them, and their whanau, it's a 'must have'.
Why this questionnaire matters
People living with young onset dementia (YOD) and their carers/whānau are too often overlooked in transport, disability, and health policy. Decisions are frequently made without fully understanding how cognitive disability affects safety, independence, participation, and daily life — particularly for people under 65 who do not fit neatly into existing systems. As a result, our community has fallen through the cracks, receiving limited recognition and support despite significant need.
This questionnaire is an opportunity to change that. By gathering lived experience from across Aotearoa, we can present a strong, collective response to the Government’s proposed changes to the Total Mobility Scheme. Your voice helps ensure that policy reflects real lives — not assumptions — and that transport remains a lifeline for connection, dignity, wellbeing, and participation. Individually our stories may be missed; together they carry weight.
This questionnaire developed by the Young Onset Dementia Collective is based on official consultation information about the Total Mobility Scheme from the Ministry of Transport. This is tailored to the Proposals to Strengthen the Total Mobility Scheme consultation expected to reflect real issues with access, eligibility, cost, consistency, and flexibility — particularly for people living with young onset dementia and their carers/whānau.
Alternatively you can submit your own personal feedback directly to Ministry of Transport HERE.
Consultation is open until 22nd March 2026
