Developing dementia at a younger age can impact the person and their family in crucial ways.
One major concern is the impact on family finances, and another is the difficulty of accessing specialist advice on social care issues for young onset dementia.
Researchers at the Universities of Bradford and York have been collaborating on Social Care for people living with young onset dementia: The DYNAMIC study. Funded by the National Institute for Health and Care Research (NIHR) Research for Social Care (RfSC) Programme, the project aims to find out about the current state of practice in social care for people living with young onset dementia (under 65 years old) and how it can be improved. We will present key findings from the project via two open access webinars in October and November.
Listening to lived experience
We spoke in-depth with 33 people with lived experience of young onset dementia and family carers about their needs and experiences of social care. 139 staff with current knowledge of social care in England responded to our survey on social care for people with young onset dementia and their families.
Six areas where care could be improved were prominent across the interviews and survey. The first four of these areas were:
- Care navigation and continuity.
- Care that is person-centred and age appropriate.
- Peer support.
- Support for children and young people.
But a stakeholder workshop guided our decision to focus on the final two:
- Raising awareness amongst social care staff about the social care needs of people with young onset dementia and their families.
- Improving strategies to help people and families manage the financial impact of living with young onset dementia.
We searched for good practice in these priority areas by looking at published evidence and interviewing 13 professional staff. We are now working with small groups of stakeholders to co-produce resources that address these two priorities.
Do you want to help improve social care for people living with young onset dementia?
Join two upcoming webinars that will share key messages from research and hear from professionals and people with lived experience of young onset dementia. Hosted in collaboration with Young Dementia Network, the open access events will introduce new co-produced resources to support social care professionals.
Raising awareness of young onset dementia is crucial to support earlier diagnosis, access to services, and improve outcomes. However, many social workers have little experience with young onset dementia and may not be aware of the way it affects people’s lives. In our first webinar, we will hear from Julie, a former social worker who lives with young onset dementia. She will talk about her experiences of social care and the potential for improvement. Professor Jan Oyebode from the University of Bradford will share findings and co-produced resources from the DYNAMIC project on social workers’ awareness and experiences with young onset dementia.
People living with young onset dementia can face significant challenges associated with financial obligations. This can include mortgages payments, outstanding loans, or supporting dependent children. Our second webinar will consider the role of social care professionals in enabling families affected by young onset dementia to plan for and cope with the financial challenges. We will hear from Elaine, who cares for her husband Lawrence. She will discuss her experiences of the financial impact and support to manage this. Dr Catherine Quinn from the University of Bradford, will present findings and a resource that has been co-produced to help commissioners of services and professionals to appreciate the impact of young onset dementia on finances and how vital it is to have responsive, co-ordinated services.
Effective social care is key to living well with young onset dementia. We hope that the project findings will be shared widely to influence people in practice, policy, and those living with young onset dementia and their families.
Social care for young onset dementia: raising social workers’ awareness
Join an open access webinar on 15 October that will introduce a co-produced resource that aims to raise social workers’ understanding of young onset dementia.
Social care for young onset dementia: the financial impact
Join an open access webinar on 19 November that will highlight the role of social care in enabling families affected by young onset dementia to plan for and cope with the financial challenges.
Dementia and Hope: Video learning resources
Co-led by people with dementia, these videos summarise the vision of nine dementia related organisations to empower and give hope to those who are diagnosed and their families through disability rights.
How collaborative approaches can support people living with dementia to be ‘in the driving seat’ of research
Philly Hare interviews George Rook to discuss what effective involvement of people living with dementia might look like.
Dementia Enquirers Project: Enabling people with dementia to lead research
The gap between research and real life experiences is often exacerbated by a lack of input from people with lived experience into the design and delivery of research. Drawing on the Dementia Enquirers Project, explore how people with dementia can go beyond ‘patient and public involvement' and be ‘in the driving seat’ of research. We discuss the benefits of this approach, the barriers people encounter and how people can be supported without being taken over.