Finding purpose in grief – Helen’s story
Helen reflects on her dementia journey and grief after husband Clive died from frontotemporal dementia in 1999.
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
- 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
- Understanding young onset dementia – a leaflet created by Dementia UK
- Young onset dementia – produced by Alzheimer’s Research UK
- Young onset dementia – Understanding your diagnosis – an Alzheimer’s Society publication
- 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
- 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
- Understanding frontotemporal dementia (FTD) – a leaflet created by Dementia UK
- Understanding genetic forms of dementia (familial dementias – a leaflet created by Dementia UK
- Frontotemporal dementia (FTD): Understanding your diagnosis – publication written by the Alzheimer’s Society
Information for children/young people
- Supporting children and adolescents when a parent has young onset dementia – a leaflet created by Dementia UK
- The milk’s in the oven – a booklet about dementia for children and young people.
Information about employment, driving and financial matters
- Driving and dementia – a leaflet created by Dementia UK
- Employment and young onset dementia – a leaflet created by Dementia UK
- Finance and young onset dementia – a leaflet created by Dementia UK
Information about support and care
- Dementia and Hope – prepared by Philly Hare, Innovations in Dementia for One Dementia Voice (January 2023)
- 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
- Making an impact together – a guide written by and with several groups who are members of the DEEP network. The aim of the guide is to help other people with dementia in influencing and activism groups
Call the Dementia UK Helpline
Our free, confidential Dementia Helpline is staffed by our dementia specialist Admiral Nurses who provide information, advice and support with any aspect of young onset dementia.
