Developing an online guide to dementia support

Most social care workers, especially homecare workers, often work alone, lack specific dementia training and are not confident in their roles. People living with dementia and their carers often have negative experiences of NHS and social care services around diagnosis. They have told us there is often little support and information; one said “When I was first diagnosed, I felt lost and so overwhelmed. I didn’t know where to turn.”

Aim of the project

This project aims to support people living with dementia and carers to live well after a dementia diagnosis and to help people in social care who are working with them. The research team will build on a study that is providing post-diagnostic support for people living with dementia and carers through an online guide called Forward with dementia. It is an information website and personalised toolkit, that has been developed with, and for, people living with dementia and carers. It does not require much technical knowledge and can be used through smartphones and computer tablets. Key sections are printable. Current users are people living with dementia, carers and healthcare workers. Our study wants to expand this to social care users and include information and guides for social care practitioners, particularly people working in homecare, to help support their clients.

How the project will be carried out

This will be a particpatory research study with four interlinked  work packages:

• Workpackage one – a qualitative study using semi-structured interviews. Participants will include people living with dementia, carers and social care practitioners. The research team will exclude people who lack capacity to consent. They will recruit up 15 people living with dementia and 15 family carers using memory clinics, social media and nationa/local carer dementia organisations.  They will also interview social workers and develop topic guides for the interviews with a patient and public involvement (PPI) panel and stakeholder groups.
• Workpackage two  - co-production of the a dementia guide, iterative development and user testing.  They will carry out up to eight co-production workshops over eight months (four with people living with dementia and four with practitioners). Workshops will cover discrete topics such as experiences of dementia social care support and needs, purpose of toolkits , determining useful tools, tone of voice, prioritising and implementation strategy.
• Workpackage three - final revisions and implementation. The research team will gather initial evaluation data on the use of the guide, and will adapt an existing evaluation into the guide. They will collect data on website analytics such as total visits, returning vistors, page views etc. they will also gather early date on the affect on practice. The will deternine the accepatability and feasibility and will assess if the key audience groups are statisfied that the guide will be useful in practice.
• Workpackage four – dissemination. Throughout the study the research team will collaborate to develop strategies to include under-represented groups. They will facilitate knowledge transfer between NIHR partners, older older people’s an d broader stakeholders in social and primary care through presentations, academic papers and accessible social media posts.

Our national and international collaborators

This is a multidisciplinary project including social care workforce experts and researchers, GPs, mid and early career researchers and public advisors. The study team has extablished network with a number of organisations including national carer/dementia organisations (e.g., Alzheimer’s Society, Join Dementia Research, DEEP The UK Network of Dementia Voices), as well as local organisations such as Carers Centres and culturally specific organisations such as Openingdoors (serving LGBT+ communities) and religious groups such as local mosque outreach services.

Professional links include: Royal College of Occupational Therapists, British Association of Social Workers (BASW), the Homecare Association, Care Provider Alliance, Skills for Care and the London provider network of homecare providers, whose co-chair supports this study. a partnership programme by the University of New South Wales, the University of Sydney, the University of Wollongong (Australia), McGill University, University of New Brunswick, University of Waterloo (Canada), Maastricht University (Netherlands), Wroclaw Medical University (Poland), University College London, Newcastle University (United Kingdom), Alzheimer’s Disease International and Dementia Alliance International. 

How people living with dementia and their carers will be involved in the project

This project has been co-developed and shaped by views of pople living with dementia, family carers of people living with dementia, and discussions with homecare workers, social care workers and an occupational therapist.

We consulted with three experts by experience. Each brought different lived or living and learnt (personal and professional) knowledge, understanding, and experience of their roles as practitioners and carers and this has further shaped our understanding of the gaps and needs for post-diagnosis support and information. One member highlighted the importance of inclusivity in our research, which is reflected in our recruitment methods. Professionals discussed difficulties of providing homecare and support and how the low status, low pay, and lack of dementia training both for agency and directly employed carers was an issue. They highlighted the need for clear and jargon free information.

Patient and public involvement activities will include: public, stakeholder and policy engagement; contributing personal narratives, co-hosting webinars and stakeholder workshops, advising on dissemination and producing lay publications; developing and piloting of information sheets, topic guides, etc. to improve accessibility, planning and improving recruitment strategies and enabling participation by people affected by dementia; interpretation of findings; and supporting progression with further funding applications. We will also meet training needs identified by our PPI members.

Potential benefits of the project

The main benefit of ‘Forward with dementia’ is that it will focus and direct people to the dementia support available, acknowledging that services are fragmented and variable since much care provision is funded by local authorities or private and not for profit provision is local. Some of the information that people say they need is national such as benefits services/information resources that are highly relevant to social care and how to access them.

A key focus of the toolkit is:

• to enable people to access more smoothly and quickly what is available and to ensure this happens in a more integrated manner

• facilitate self-management strategies that are increasingly promoted for people living with long-term conditions.

The project is funded by the NIHR Dementia Research Programme, Improving the lives of people living with dementia an carers. It was adopted by ARC South London in July 2022 and will be completed by January 2023.