About Us

The Young Onset Dementia Collective was formed by a group of wives, husbands, and partners of people living with younger onset dementia. We have rapidly grown to include others with a shared vision looking to redefine what it means to live with younger onset dementia, their families and carers.

CLICK HERE to view members of Our Board

Younger Onset Dementia (YOD) is used to describe any form of dementia that develops in people under the age of 65. It is sometimes called early onset dementia.

Conservatively it has been estimated that between 5 and 10% of all people with dementia are under the age of 65. This estimate does not include the great number of people undiagnosed.

Younger people with dementia (YOD) do not fit into existing services which are focused on their older counterparts. Carers must choose from facilities or services established for older age groups.

Younger people with dementia have needs that are different to older people. They tend to be more physically fit, active and have more responsibilities in terms of employment and families. There are often delays in diagnosis, sometimes related to general practitioners having little experience with early onset dementia.

Public awareness of early/younger onset dementia is also low, leading to more stigmas being attached to the condition in younger people and less appreciation of the challenges families face.

Younger people with dementia have service needs which are distinct from their older counterparts. They require age-appropriate solutions in meeting the emotional and psychological phase of life their age represents. Systems and support must change to reflect all the needs of a 40–65-year-old person and that of their families and carers.

Younger people with dementia will need to retire early from work while carers may also have to give up employment in order to care for them, leading to a double loss of income at a critical stage in family life. Diagnosis inevitably comes as a shock to the family with considerable need for age-appropriate support and information. People with dementia in the early stage will be somewhat aware of their disability and prognosis and often suffer depression and/or anxiety. Younger onset dementia also impacts on family's ability to cope emotionally and financially.

There may also be heightened safety issues with younger people as they are likely to be physically fitter and more active than older people. This can cause huge strains on families. Personal relationships and friendships may deteriorate. There could be much less tolerance for the same challenging behaviour in younger people than in older people. Legal and financial affairs need to be dealt with sooner given that younger people may have a more rapid deterioration in functioning.

The best way to meet the needs of younger people with dementia is through community services (until placement in residential care becomes unavoidable). While this is also desirable for older people with dementia, the special needs of younger people should be fully recognised in the delivery of assistance, with special emphasis on age-appropriate services, emotional support, clinical management and innovative day and respite care planning. The ability to access these services in the community will delay the need for residential care and therefore result in significant long term cost savings.

The Young Onset Dementia Collective looks to:

Provide tailored support for YOD to help reduce long-term healthcare and social welfare costs, such as by delaying residential care, reducing acute hospitalisations, and reduce carer burnout.
Provide necessary and sufficient framework enabling carer’s workforce participation and family economic resilience.
Reframe YOD as a common sense, human focused issue that transcends political divides.
Provide a smarter way to target existing resources, reduce crisis care, and improve patient pathways.
Lived experience participation in framing YOD support and solution designs to improve legitimacy.
Improved diagnosis pathways and GP education aligns with current goals of strengthening community-based care.
Build inclusivity and acceptance for all as part of improving health equity (e.g. Maori and Pacific populations with earlier dementia onset).
Use all efforts to integrate YOD into existing strategies as pilot program rather than expecting immediate large-scale funding or system change.
New Zealand lacks robust YOD prevalence data. YODC will provide research support and data to help build the longer-term case for investment.
Continue to build and provide age-appropriate support, activities and services enhancing social engagement
Provide necessary lived experience support for care partners

The Young Onset Dementia Collective overall objectives are to:

keep people living with young onset dementia connected and engaged in active lives within their communities. 
provide opportunity for socialisation and wider visibility to help promote awareness and breakdown stigma associated with dementia, specifically young onset. 
To create a model of age-appropriate care for people living with young onset dementia that can be replicated nationally. 
To support and enable people with younger onset dementia to keep living an engaged and active life for as long as possible. 
To develop and nurture a pool of volunteers within local communities to support people living with younger onset dementia. 
To look towards a purpose-based age-appropriate facility for younger onset dementia day stay and ability to support overnight care within a safe and familiar environment with likeminded people, which also provides much needed respite for carers. 
Strongly advocate for people living with young onset dementia along with their families and carers.

Recognition of younger onset dementia ensures more effective service design, better research focus, and more sustainable outcomes.

Our charitable status is facilitated through Auckland Foundation which holds Young Onset Dementia Collective as a sub-fund also managing reporting and compliance on our behalf. 

Your donation will help us help ourselves and others living with younger onset dementia. 

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