Thank you for visiting our website. We are aware that embracing a diagnosis of rare dementia can feel overwhelming and daunting.

Whilst we intend the information on this website to be helpful, we appreciate that reading information about a condition you are living with can feel harsh and unsettling. We try to write in a way that doesn’t feel insensitive or exclusive, and we recognise that there may be times reading the information on this site is hard going.

We have tried to provide information pertaining to the emotional impact of living with a rare dementia and hope that the information on our Adapting emotionally page is helpful. We also encourage you to take time away from the website as and when necessary, and to make time for those activities which bring comfort, joy, and pleasure.

If possible, try to make sure that there are people you can talk to about the information you are reading on our website. Whilst it is important to understand what your diagnosis means, and to have information about how it might impact you, it is also important to make sure you are supported as you do this. Family, friends or colleagues may be available to provide support where it is necessary, but you are also entitled to have an ‘advocate’ appointed for you by your council. An advocate can help you to understand your care and support process. They can talk to you about how you feel about your diagnosis can help you to make or challenge decisions about your care. You can access more information on the NHS website.

Please contact us at contact@raredementiasupport.org if you would like more information, or you want a member of our team to contact you directly.

Thank you for visiting our website. Throughout the website we use the term ‘carers’ to refer to any person who cares for or about someone living with a diagnosis of dementia.

We try to make the information on our website as relevant as possible to carers across a range of roles – from those who live with a person with dementia, to include wider family and social networks, and to the friends, associates or colleagues of the person living dementia.

The relevance of the information we share may be dependent upon the roles and relationships you have.

Having spoken to many carers over the years, we recognise many of the challenges that accompany the time leading up to and following the diagnosis of dementia in someone we know. We understand that you are likely to be feeling a wide range of emotions as you embrace all that the diagnosis entails. A rare dementia diagnosis may not be one you anticipated and can bring up a wide range of feelings and reactions. We encourage you to be honest about the way you feel and the needs you may have, in the situation you find yourself in, and we will endeavour to find the best support options for you, should you wish to engage more directly with us.

We have tried to provide information pertaining to the emotional impact of living with a rare dementia and hope that the information on our Adapting emotionally page is helpful. We also encourage you to take time away from the website as and when necessary, and to make time for those activities which bring comfort, joy, and pleasure.

Please email us at contact@raredementiasupport.org for more information or direct support, or click on our Contact us page for other ways to get in touch.

Thank you for visiting our website.

For clarification, by using the term ‘living at risk of developing dementia’, we are referring to people who know they have a 50 per cent chance of having inherited one of the identified disease causing genes that are responsible for Alzheimer’s disease (AD) and frontotemporal dementia (FTD) in some families.

In around 1% of people diagnosed with Alzheimer’s disease, there is a family history of the condition, and it is likely to have a genetic cause – we call this familial Alzheimer’s disease (FAD). In around 30–40% of people diagnosed with behavioural variant frontotemporal dementia there is a family history of the condition, and it is likely to have a genetic cause – we call this familial frontotemporal dementia (fFTD).

The risk these people live with is different to the risk we all live with as we age. More information about genetics and risk is available here: Genetics and Risk.

We recognise that receiving a diagnosis of a genetic condition can have a significant impact on the person who carries the gene, as well as their family and friends. Living with a known 50% chance of developing a disease carries additional implications and we recognise that there are practical and emotional consequences for everybody involved.

If possible, try to make sure that there are family members, friends, colleagues or relevant professionals to talk to about the disease specific information you are reading on our website.

RDS have a range of support options for people living with or at risk of familial Alzheimer’s disease (FAD) or familial FTD (fFTD). More information is available on these pages:

Familial Frontotemporal Dementia (fFTD)
Familial Alzheimer’s Disease (FAD)

We invite you to contact us at contact@raredementiasupport.org in order that a member of the Direct Support Team can discuss the support options with you.

Thank you for visiting our website. At Rare Dementia Support, we recognise that to ensure the best levels of care and support for our members, we need to work alongside colleagues working in the allied health and social care professions to raise awareness about rare dementia. We also need to promote ways that we can work together to make a meaningful difference to the care that is available.

As a professional working with even one person living with a rare dementia, you can join us in this call to action. We provide education and training for professionals working with people living with rare dementias through learning and training resources that have been informed by, and created with, people affected by rare dementias as well as clinicians and researchers. There is a wide and evolving range of resources including factsheets, interactive courses, films, podcasts, and lectures available.

These resources are designed for a range of users including care professionals such as GPs, nurses, care staff, occupational therapists, optometrists and many more. You can browse through all the resources or choose a specific category.

We hope that any learning from the resources we provide will translate into meaningful action in your workplace community and would love to hear from you to discuss ways of partnering or collaborating. There are a range of ways in which this might be possible. Please email us at contact@raredementiasupport.org if you would like more information or go to our Contact us page.

Please feel free to browse our Educational resources page or head to our research tab to find out more about rare dementias.