Useful publications about young onset dementia

Below are a range of young onset dementia related publications which we hope you will find informative and interesting. 

Young Dementia Network resources 

The Young Dementia Network has created a range of useful publications and resources including:  

  • a personal checklist for members of the public who are concerned about signs and symptoms of young onset dementia  
  • ID cards for people with young onset dementia and their family / supporters for them to use when out and about  
  • a leaflet to raise awareness of young onset dementia for use in GP surgeries 
  • an information leaflet for people who have been newly diagnosed, ideal for use in diagnostic clinics 
  • a young onset dementia decision-making guide for GPs to aid their recognition of the symptoms of dementia in younger people 
  Information about young onset dementia 

Approaching an unthinkable future – Understanding the support needs of people living with young onset dementia
A resource based on the experiences of people living with young onset dementia created by Dementia Pathfinders.  

What is young onset dementia?
A factsheet created by the Alzheimer’s Society. 

Young onset dementia – Understanding your diagnosis
An Alzheimer’s Society publication, published in February 2017.

Younger people with dementia – living well with your diagnosis
Produced jointly by NHS Health Scotland and Alzheimer Scotland.   

Younger onset dementia – a practical guide
Produced by Alzheimer’s Australia.   

Information about frontotemporal dementia

Frontotemporal dementia (FTD): Understanding your diagnosis
Publication written by the Alzheimer’s Society. 

A guide to managing a new diagnosis
Relates specifically to frontotemporal dementia but much of the advice and information is relevant to other young onset dementias. 

Understanding the genetics of FTD
A booklet created by the Association for Frontotemporal Degeneration (USA).  

Information for children / young people 

The milk’s in the oven
A booklet about dementia for children and young people. 

Also, check out our dementia books for children page.

Information about employment, driving and financial matters 

Employment and young onset dementia
A leaflet created by Dementia UK.  

Work after a diagnosis of dementia
A booklet written by Martin Robertson who is living with young onset dementia. Funded by the Life Changes Trust.  

Supporting employees who are caring for someone with dementia
A publication produced by Carers UK and Employers for Carers. 

Driving with Dementia – My Experiences
Dr James McKillop shares his personal experience ofgiving up driving due to a dementia diagnosis.   

Driving and dementia
A leaflet created by Dementia UK. 

Losing a Partner – The financial and practical consequences
The report, commissioned by Royal London, is based on a survey of 500 people whose partner died over a five-year period. It found that only 11% of those who has lost a partner felt both financially and practically prepared.  

Information about support and care

Our Dementia Our Rights
A guide which aims to highlight as simply as possible the importance of human and civil rights in ensuring support, inclusion and dignity for people with dementia.  

Psychological dimensions of dementia: Putting the person at the centre of care
The report was put together by the British Psychological Society Dementia Advisory Group. It presents a psychological perspective on the nature and experience of dementia, outlines the extensive contributions that psychologists have made in this field, and issues a number of recommendations on how to improve understanding and care for those experiencing dementia and their families.  

Supporting and accommodating people with dementia at professional conferences and other events
A Dementia Alliance International publication written using feedback from people with dementia and family care partners since 2012.  

A guide: Supporting people with dementia in a care home
A guide written by a professional carer in conjunction with a person with young onset dementia detailing how best to support someone with dementia living in a care home.   

Making an Impact Together
Making an Impact Together is a guide written by and with several groups which are members of the DEEP network. The aim of the guide is to help other people with dementia in influencing and activism groups.  

Other useful publications

Do you know of other useful publications, factsheets or booklets specifically about young onset dementia?

Email us

Blogs about young onset dementia

Read blogs written by people living with young onset dementia and family members

Read blogs here

Young onset dementia films

Watch short films that focus on young onset dementia

Watch films here