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: Presentation to Dementia Matewareware Network Hui November 2024  
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
Report
Dementia Canterbury Younger Onset Dementia Mate Wareware Programme
Author:
Erica Collingwood: Presentation to Dementia Matewareware Network Hui November 2024
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
Report
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
Young Onset Dementia Collective
Author:
Young Onset Dementia Collective 
Description:
This organisation was formed by a group of carers looking to improve the lives of people living with younger onset dementia, working towards purpose-based, age-appropriate facilities for day stay and overnight care, as well as providing respite for carers
Link
YODAT: Younger Onset Dementia Aotearoa Trust
Author:
YODAT: Younger Onset Dementia Aotearoa Trust 
Description:

YODAT is seeking to address the gaps in the care and treatment of people living with younger onset dementia by providing age appropriate facilities and services addressing physical, emotional and spiritual needs, advocacy for people with this condition, and support for their families, carers and communities. 

YODAT runs national available online meetings monthly for support persons of people with younger onset dementia and fortnightly for a peer group.

General link

Support groups link

 
Younger Onset Dementia
Author:
Dementia New Zealand, updated 2025(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 Hub
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
Approaching an  unthinkable future Understanding the support needs of  people living with young onset dementia
Author:
Dementia Pathfinders, 2016 (UK)
Description:
This resource is based on the experiences of people living with young onset dementia. It explores their unique support needs and reframes priorities for age-appropriate community-based care by involving people with young onset dementia in co-designing services.
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
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
 GP Decision-Making Guide
Author:
Young Dementia Network, 2017 (UK)
Description:
A guide for GPs to aid recognition of symptoms of dementia in younger people (endorsed by the Royal College of GPs)
Link
 
Young onset dementia pathway
Author:
Young Dementia Network, 2nd edition2022 (UK)
Description:

Developed by the Young Dementia Network with input from people living with young onset dementia, family members and professionals, this pathway provides recommendations for tailoring services to meet younger people's needs
Link
Good Practice in Young Onset Dementia - The Angela Project
Author:
Vasileios Stamou and colleagues, 2021(UK)
Description:
The Angela Project was the largest UK study of young onset dementia, gathering views from over 230 people with young onset dementia and their supporters to identify good practice in post-diagnostic support. The research found that helpful services maintain autonomy, identity and connections through being person-centred, age-appropriate, holistic, integrated, and consistently organized around the distinct needs of younger people living with dementia.
Online report link
Article link
 
iSupport for Young People
Author:
Bangor University, 2023 (UK)
Description:
iSupport for Young People is a free online resource for children and young people who live in families affected by dementia. It is aimed at young people aged 11-17, adapted from the WHO iSupport programme. 
Link Article
Young Onset Dementia Facilitators Resource Manual
Author:
Alzheimer Society Canada, 2018 (Canada)
Description:
The Canadian Alzheimer Society offers a resource with advice for organisations thinking about groups specifically for people with younger onset dementia.
Link
Supporting social care practice for people with young onset dementia and their families
Author:
University of Bradford and Young Dementia Network, 2025 (UK)
Description:
A key priority area of the DYNAMIC study (Dementia in Younger Ages Mapping Ideal Care) was to raise awareness among social workers and social care staff about the social care needs of people with young onset dementia and their families. The researchers have provide a downloadable resource and a brief animation.
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