Understanding rare dementias. Transforming care.
What are rare dementias?
Alzheimer's disease is the most common type of dementia, but there are many other conditions that can lead to dementia. These conditions are rarer, can occur at a younger age, and can cause symptoms that are not only memory-related. These may include difficulties with vision, language, movement, and behavioural changes. Current healthcare systems are not set up to respond to these different dementias, their complexity and atypical presentations. Specialist information and tailored support can help people and families plan, navigate diagnosis and manage daily life.
Younger-onset Alzheimer’s disease (YOAD)
Young‑onset Alzheimer’s disease (YOAD) affects people diagnosed with Alzheimer’s before the age of 65, often in their 40s, 50s or early 60s. While symptoms are similar to Alzheimer’s diagnosed later in life, the impact can be different, as people may still be working, supporting families or managing major life responsibilities.Primary progressive aphasia (PPA)
Primary progressive aphasia (PPA) is a group of rare dementias that mainly affect speech and language, rather than memory in the early stages. People may have increasing difficulty finding words, forming sentences or understanding language, while other thinking skills can remain relatively strong at first.Familial frontotemporal dementia (fFTD)
Familial frontotemporal dementia (fFTD) is an inherited form of frontotemporal dementia, caused by a genetic abnormality passed down through families. Like other types of FTD, it mainly affects behaviour, personality or language, often beginning at a younger age than many other dementias.Familial Alzheimer’s disease (FAD)
Familial Alzheimer’s disease (FAD) is a rare, inherited form of Alzheimer’s disease caused by a genetic abnormality passed down through families. It usually develops at a younger age than typical Alzheimer’s disease, often in people’s 30s, 40s or 50s, and commonly begins with progressive memory difficulties.Frontotemporal dementia (FTD)
Frontotemporal dementia (FTD) is a group of rare dementias that mainly affect personality, behaviour, or language, depending on which areas of the brain are affected. It often begins at a younger age than other dementias, with early changes commonly involving social behaviour, decision-making and communication rather than memory.Posterior cortical atrophy (PCA)
Posterior cortical atrophy (PCA) is a rare form of dementia that mainly affects vision and spatial awareness. People may have difficulty reading, recognising objects or judging distances, while memory and language can remain relatively intact in the early stages.Lewy body dementia (LBD)
Lewy body dementia (LBD) is a form of dementia that can affect thinking, memory, movement and perception. People may experience visual hallucinations, changes in attention and alertness, and movement symptoms similar to Parkinson’s disease.Hammond Innovations research
Find help
Living with a rare dementia can be complex and isolating, but support is available. These trusted organisations can provide expert advice, practical support and meaningful connection for people living with rare dementias, their families and carers.
Dementia Support Australia
A free, nationwide service offering specialist advice and support for carers and professionals.
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Carer Conversations (DSA)
A facilitated support program for carers of people with frontotemporal dementia.
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Rare Dementia Support (UK and Canada)
Connecting people affected by rare dementias with tailored support and others who understand.
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Our collaborators
Together, these organisations bring global insight, deep expertise and shared humanity to some of the most complex and least understood dementias.
Rare Dementia Support UK
A University College London (UCL)-led collaborative service that aims to empower people living with a rare dementia diagnosis and those who care for and about them.
Visit websiteRare Dementia Support Canada
Rare Dementia Support Canada provides a tailored specialist support community for people who are living with, affected by or at risk of, a diagnosis of rare dementia.
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Australian Frontotemporal Dementia Association
A registered non-profit organization dedicated to supporting individuals and families affected by frontotemporal dementia (FTD).
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Dementia Support Australia
A free, Australian Government-funded national service led by HammondCare that provides 24/7 specialized support for people living with dementia and their carers.
Visit websiteFRONTIER Brain and Mind Centre
Australia’s leading specialist research clinic and group dedicated to Frontotemporal Dementia (FTD), based at The University of Sydney's Brain and Mind Centre .
Visit websiteHelp us shape this space
Our goal is to better support people living with rare dementias, their families, carers and the professionals who support them.