Supporting People with Young Onset Dementia and their Families

Dementia Pathfinders was delighted to work on a Department of Health funded project, which enabled us to develop and provide training to the social care workforce to equip care providers to effectively meeting the needs of people with young onset dementia and their families and carers. The training was developed together with younger people with dementia and their families, and offered across the six south west London Boroughs: Wandsworth; Kingston; Richmond; Merton, Croydon and Sutton.  Courses were delivered by our Associate, Sylvia Cowleard with input from people directly affected by young onset dementia.

The aim of this project was to develop training provision that properly reflects the social care needs of this client group and we are consulting people with young onset dementia and their families and carers and also the social care workforce delivering services to people affected by young onset dementia in order to put together an appropriate curriculum.

The project began with a detailed process of listening to the perspectives of people with young onset dementia and their families.  Through in-depth conversations with 23 individuals, themes and experiences reflecting life with young onset dementia were drawn.  These were then used to shape the training course and supply stories and examples to enable learners to understand the support needs.

Paul and Elaine Eager shared their lived experience of dementia with learners on our young onset dementia education programme in Kingston. Dementia Pathfinders Associate, Sylvia Cowleard developed the curriculum for this training course based on a series of listening events with people with dementia and relatives and carers facilitated by Julia Burton-Jones. The publication 'Approaching an unthinkable future: understanding the support needs of people living with young onset dementia', was produced as a result of this work by Julia. The project is now complete and we are looking forward to learning about the outcomes of the evaluation which is being conducted by Dr Nan Greenwood and her team at Kingston University.


Supporting People with Young onset Dementia and their Families is now available both as a commissioned course and as an open course.

Learning outcomes:

Day 1

1. Describe dementia, its causes, signs and symptoms.

2. Demonstrate an understanding of the difficulties associated with diagnosing young onset dementia

3. Understand the experience of dementia for the person with the diagnosis and their family

4. Explain the purpose of the Mental Capacity Act 2005

Day 2

5. Explain the social care needs of a younger person with dementia.

6. Describe the social care needs of the family of a younger person with dementia.

7. Describe a range of different approaches and activities that can be used when working with a younger person with dementia

8. List a variety of organisations that can assist with practical, legal and financial questions that younger people with dementia and their families may face


To commission a course or for further information on our open courses, please contact