Purpose, Participation and Brain Health: Rethinking Dementia Support for Younger People
- 2 days ago
- 8 min read
For many people living with young onset dementia, one of the greatest losses is not memory — it is purpose.
Careers end abruptly, social roles disappear, and opportunities to contribute to community life can suddenly become limited. Yet while many services focus on what people with dementia can no longer do, both lived experience and emerging research point to something equally important: when people are given opportunities to participate, contribute and remain connected to their communities, the benefits can be profound for wellbeing, identity and brain health. For many years, therapies for people living with dementia have focused on structured cognitive exercises such as puzzles, reminiscence sessions, and group discussions. One widely used approach, Cognitive Stimulation Therapy (CST), has been shown to improve cognition and quality of life in people with mild to moderate dementia.
However, research shows that cognitive stimulation embedded within meaningful, real-world activity may be just as powerful — and in many cases more beneficial — particularly for people living with young onset dementia (YOD). This perspective has also been prompted by our own experience observing Cognitive Stimulation Therapy in action within groups of people living with younger onset dementia.
People with young onset dementia are often in a very different stage of life than those diagnosed later. Many are still physically capable, socially active, and used to contributing through work, family life, and community involvement. When these roles suddenly disappear, the loss of identity and purpose can be profound.
Through its community-based programmes, the Young Onset Dementia Collective has been exploring practical ways to support this continued participation, creating opportunities for people living with younger onset dementia to remain active contributors within their communities.
Research shows that maintaining meaningful roles is central to wellbeing and quality of life for people with dementia.
A study examining meaningful activity among people with dementia found that participation in real activities created a strong sense of purpose, empowerment, and social connection.*1
Participants reported feeling useful and valued when contributing in meaningful ways rather than simply taking part in activities designed for therapy.
Similarly, research exploring volunteering by people living with dementia found that community contribution provided significant psychological and social benefits, including a greater sense of meaning, belonging and identity.*2
These findings align with wider research demonstrating that social engagement and cognitively stimulating activity together support brain health and cognitive functioning.*3
As with much research involving young onset dementia, early studies in this field often involve smaller participant groups simply because the condition remains under-researched globally.
Despite this, findings across studies consistently point in the same direction — that meaningful participation, social connection and opportunities to contribute play a critical role in wellbeing for people living with dementia.
These benefits often arise when cognitive stimulation is embedded naturally within real life activities rather than delivered through structured therapy alone.
While CST clearly has value for some participants, we have also witnessed situations where it unintentionally excludes others — either because they simply do not enjoy the format, or because they are no longer able to participate at a level that has effectively been set as a prerequisite for being part of the group.
When this happens, the impact is not limited to the person living with dementia. For carers — often partners, family members and friends already navigating significant emotional and practical challenges — seeing someone they care about struggle to participate, or feel they no longer belong in a group, can be deeply distressing. It can reinforce feelings of isolation for both the person with dementia and those supporting them, highlighting how important it is that programmes are designed in ways that support inclusion, dignity and belonging for everyone involved.
When participation becomes tied to performing certain types of cognitive tasks, it can unintentionally affect a person’s sense of belonging.
People who struggle to keep up may withdraw or feel that they no longer fit within the group. In those moments, the focus on cognitive performance risks overshadowing a whole host of other very real human needs — connection, contribution, identity and purpose.
Modern dementia research supports this broader view of participation.
Professor Tom Kitwood, whose work helped establish the foundations of person-centred dementia care, argued that maintaining identity, agency and social relationships is central to wellbeing for people living with dementia.
More recently, Professor Bart McCormack and colleagues have further developed these ideas through models of relationship-centred and person-centred care, emphasising the importance of environments that support participation and meaningful engagement.
Modern dementia research supports this broader view of participation. The concept of “social health” in dementia has helped shift thinking away from a purely deficit-based view of the condition toward one that recognises the importance of participation, autonomy and meaningful social roles in supporting wellbeing. Researchers have argued that supporting people with dementia to remain engaged in everyday life — maintaining relationships, contributing to their communities and exercising choice where possible — is central to living well with the condition.*4
Research also shows that people living with dementia consistently prioritise meaningful relationships, autonomy, social roles and participation in everyday life *5, reinforcing the importance of programmes that support these aspects of living well.
In Aotearoa New Zealand, emerging research is also exploring how programmes grounded in culture, identity and connection can strengthen engagement. Work examining the cultural adaptation of CST for Maori demonstrates that when cognitive stimulation is embedded within cultural meaning and whanaungatanga, participation and engagement improve *6.
Alongside this, community-based initiatives across the country are increasingly demonstrating the value of programmes that centre culture, whanaungatanga and purposeful participation in supporting people living with dementia.
At the Young Onset Dementia Collective, we see this principle in action through programmes such as our partnership with Fair Food, where people living with younger onset dementia work together as part of a team helping prepare and distribute food to the community. Programmes like this contribute to a body of practice-based evidence demonstrating how meaningful participation, contribution and social connection can support wellbeing for people living with younger onset dementia.
This work is not designed as “therapy”. It is real work with real purpose.
For many people living with young onset dementia, the opportunity to contribute can be as therapeutic as any formal intervention.
Participants sort, pack and organise food parcels. They work alongside volunteers, share stories over lunch, and contribute to something larger than themselves.
In doing so they are engaging in a wide range of brain-stimulating activities simultaneously:
planning and sequencing tasks
communication and teamwork
physical coordination and movement
problem solving and organisation
social interaction and emotional engagement
Researchers describe this kind of engagement as “whole-person stimulation” — activating cognitive, social, emotional and physical systems at the same time.
Studies have also shown that lack of meaningful activity and social engagement is one of the most common unmet needs for people living with dementia, negatively affecting wellbeing and cognitive health *7.
For people with young onset dementia, this gap is even greater. Many existing dementia programmes are designed primarily for older adults and may not reflect the life stage, interests, or abilities of younger people living with the condition.
Purpose-driven programmes provide something fundamentally different. They allow people with dementia to remain contributors to society rather than passive recipients of care. This distinction matters.
When people remain engaged in meaningful roles, they maintain identity, dignity and connection — all of which are closely linked to wellbeing and quality of life.
The experience of the Young Onset Dementia Collective strongly supports what the research is increasingly showing: purposeful participation is not simply a social activity — it is a powerful therapeutic intervention.
As understanding of dementia evolves, systems and services must also evolve. Programmes that enable people with dementia to participate, contribute and remain connected to their communities should be recognised as an essential part of dementia support.
For people living with young onset dementia, meaningful work and contribution are not luxuries.
They are fundamental to living well. This editorial draws on both lived experience and emerging international research examining participation, social health and meaningful engagement in dementia. With thanks to Julia Sherwood (STC Counselling) for her thoughtful review and suggestions which helped strengthen the research context within this editorial.
A challenge for dementia services and policy
Despite growing recognition of the importance of participation and social health in dementia, many existing services remain structured around models of care, supervision and symptom management rather than contribution and participation.
For people living with young onset dementia, this gap can be particularly stark. Too often, programmes are designed around what people can no longer do, rather than what they are still able — and eager — to contribute.
If the evidence increasingly shows that purpose, connection and meaningful roles support wellbeing and brain health, then these elements should not be seen as optional extras or “nice social activities”. They should be recognised as core components of therapeutic support.
Community programmes that enable people with dementia to remain active participants in society — whether through volunteering, work-style programmes, creative projects or community contribution — deserve to be valued and supported accordingly.
The experience of the Young Onset Dementia Collective suggests that when people living with younger onset dementia are given the opportunity to contribute in meaningful ways, something powerful happens: identity is preserved, confidence grows, and communities become stronger in the process.
The challenge now is for systems, services and policy to recognise - and act on - what both research and lived experience are increasingly telling us: that living well with dementia is not only about care. It is about continuing to belong, participate and contribute. When people with young onset dementia are given the opportunity to contribute, the benefits extend far beyond the individual - strengthening families, communities and the society they remain part of.
References
Han, A., et al. (2023). Meaningful Activities for People Living with Dementia: A Qualitative Study. International Journal of Environmental Research and Public Health. https://www.mdpi.com/1660-4601/20/7/5358
Fitzgerald, J., et al. (2024). Volunteering as Meaningful Activity for People Living with Young Onset Dementia. https://www.researchgate.net/publication/380416891_Volunteering_as_Meaningful_Activity_for_People_Living_with_Young_Onset_Dementia_A_Thematic_%27Co-Analysis%27
Evans, I., et al. (2022). Social engagement, cognitive activity and brain health in ageing populations. https://pmc.ncbi.nlm.nih.gov/articles/PMC8786616/
de Vugt, M., & Dröes, R.-M. (2017). Social health in dementia: Towards a positive dementia discourse. Aging & Mental Health, 21(1), 1–3. https://www.tandfonline.com/doi/full/10.1080/13607863.2016.1262822#d1e174
Wehrmann, H., et al. (2021). Priorities and preferences of people living with dementia: A systematic review. https://doi.org/10.2147/PPA.S333923
Dudley, M., et al. (2025). Cultural adaptation of Cognitive Stimulation Therapy for Māori. https://link.springer.com/article/10.1007/s10823-025-09527-y
Black, B., et al. (2022). Unmet needs in people living with dementia and the impact on wellbeing. https://pmc.ncbi.nlm.nih.gov/articles/PMC9540018/
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