Did you know that 7% of people living with dementia mate wareware are under the age of 65? Traditional models of support are set up to focus on the needs of older adults. We need age-appropriate services and support for all people living with younger-onset dementia mate wareware and their whānau in Aotearoa, New Zealand. This webinar offers you the chance to find out more about younger-onset dementia mate wareware, what best-practice support might look like, and some of the innovative home-grown services that are on offer.

What Do We Know About Younger Onset Dementia in Aotearoa
Author:
Brigid Ryan: Presentation to Dementia Matewareware Network Hui November 2024 
Description:
Brigid is a researcher and advocate who is passionate about understanding the challenges faced by individuals diagnosed with dementia mate wareware before the age of 65. She is a senior lecturer at the University of Auckland and Chair of the Younger Onset Dementia Aotearoa Trust. Her research focuses on frontotemporal dementia mate wareware, a condition that often strikes individuals in their younger years and how to diagnose the disease early on. Brigid leads the FTDGeNZ (the New Zealand Genetic Frontotemporal Dementia Study), a longitudinal observational study of pre-symptomatic biomarkers. 
Video link
Powerpoint
The Epidemiology of Young Onset Dementia
Author:
Etuini Ma'u: Presentation to Dementia Matewareware Network Hui November 2024 
Description:
Etuini Ma'u is a Senior Lecturer in the Department of Psychological Medicine at the University of Auckland and a Consultant Old Age Psychiatrist at Te Whatu Ora Waikato. He is a member of the Dementia Matewareware Leadership and Advisory group, providing strategic advice to guide the government in achieving the vision of the Dementia Matewareware Action Plan in Aotearoa. ‘Etuini was awarded an HRC Pacific Clinical Research Training Fellowship in 2019 and the Alzheimers New Zealand Fellowship in 2022 to support his research into dementia prevention and improving dementia services for Pasifika people in Aotearoa.
Video link
PowerPoint
Younger Onset Dementia Services: A Review of Three Services in Europe
Author:
Darrall Campbell  
Description:
Darral Campbell is the Manager of Dementia Canterbury, an organisation committed to supporting people to live well in the community with dementia mate wareware for as long as possible. Her particular interest is partnerships with the community that enable access and opportunity for social connection and stimulation for those living with a dementia diagnosis. Darral received a Churchill Fellowship to explore what could be learnt from younger-onset dementia services in three different countries; Canada, the Netherlands, and Scotland.
Video Link
PowerPoint
Dementia Canterbury Younger Onset Dementia Mate Wareware Programme
Author:
Erica Collingwood
Description:
Erica is a Younger Onset Key Worker with Dementia Canterbury. She is passionate about people-centred initiatives that are fine-tuned to be age-appropriate to empower clients to continue to be themselves, be connected and be fulfilled while engaging in evidence-based activities.
Video Link
Young Onset Dementia Facilitators Resource Manual
Author:
Alzheimer Society Canada
Description:
The Canadian Alzheimer Society offers a resource with advice for organisations thinking about groups specifically for people with younger onset dementia.
Link
Younger Onset Dementia
Author:
Dementia New Zealand (NZ)
Description:
This help sheet provides a brief lay summary of younger onset dementia. emphasises the importance of a correct diagnosis and some aspects of caring for someone with younger onset dementia.
Link
Younger Onset Dementia
Author:
Dementia Australia (Au)
Description:
Dementia Australia has developed the younger onset dementia hub. This provides clear information about younger onset dementia for people living with dementia and their families, and also includes a section for health professionals focusing on diagnosis.
Link
Younger Onset Dementia: A New Horizon?
Author:
Dementia Australia, 2013 (Au)
Description:
An Australian National Summit examined the issues facing individuals with younger onset dementia, determine current gaps in responses and develop recommendations for the way forward in order to improve the quality of life for people with younger onset dementia and their families. This report provides a summary of the Summit and describes the actions required to develop better responses to the needs of people with younger onset dementia, their carers and their families.
Link
Understanding younger onset dementia: Online training
Author:
Centre for Dementia Learning (Au)
Description:
This free 3-part online course aims to increase your awareness of the unique and often complex issues involved when a young person is diagnosed with dementia. Suitable for staff providing support to people living with dementia. This course can be completed at your own pace, it takes approximately 90 minutes to complete. Registration required. You will receive a certificate of completion once you have completed all parts of the module.
Link
Younger Onset Dementia: A Review of the Literature to Inform Service Development
Author:
Janet Sansoni and colleagues, 2016 (Au)
Description:
This literature review focuses on the experience, care, and service requirements of people with younger onset dementia.
Link
Rare forms of dementia
Author:
Alzheimer Europe, 2005 (EU)
Description:
This summary includes chapters on the brain, diagnosis and care and treatment of rare forms of dementia
Link
Rare Dementia Support
Author:
University College London (UK)
Description:
The Rare Dementia Support website includes information and short films on six rarer types of dementia:  Familial Alzheimer’s disease (FAD), frontotemporal dementia (FTD), familial frontotemporal dementia (fFTD), posterior cortical atrophy (PCA), primary progressive aphasia (PPA) and Lewy body dementia (LBD). 
Link
The Many Faces of Dementia
Author:
University College London (UK)
Description:
This free 4 week online course offers insight into dementia through the stories, symptoms and science behind four less common diagnoses: familial Alzheimer's disease (FAD), behavioural variant frontotemporal dementia (bvFTD), dementia with Lewy bodies (DLB), and posterior cortical atrophy (PCA).
Link
People living with Huntington Disease:  care education videos
Author:
Huntington Study Group (UK)
Description:
The Huntington Study Group has a series of short care education videos on treating the symptoms of Huntington Disease and an online course. Note these are American resources and some information is not applicable here (e.g., laws, funding etc).
Link