The toolkit

The toolkit consists of two sections.

Care pathway

1. The dementia care pathway

This section deals with three stages of the dementia care pathway: dementia awarenessdementia diagnosis and assessment; and interventions for people living with dementia and their families. 

The section was developed on the basis of a review of existing literature and resources to identify what interventions (including printed and digital information, as well as formal tools) have been developed and adapted for people living with dementia and their families from South Asian communities. The research team also conducted workshops with South Asian families affected by dementia, voluntary organisation staff, and healthcare professionals to discuss issues relating to diagnosis and service support.

The views and opinions expressed by speakers in the videos are based on their personal and professional experiences.

2. Working better together

Good dementia care often involves large organisations like the NHS and smaller voluntary or community-based organisations working together. Where these collaborations work well, they enable the resources of health and social care professionals to be used effectively by taking into account the language, spiritual, and cultural needs of different communities. However, we know that it is not always easy for organisaitons to work together. Formal and voluntary organisations can have very different approaches and priorities, and this can create difficulties and tensions. One aim of our study was to identify what these tensions were, and to find ways of overcoming these. 

From looking at previous research and from carrying out interviews with people working in small and large organisations, we were able to develop a series of short stories to illustrate some of the challenges of working together – or partnership working as it is sometimes called. 

We used these stories in a series of workshops with 13 South Asian community workers and 16 NHS and social care practitioners. We asked participants to respond to the stories, and these discussions helped us to understand the problems that can emerge in working together and to identify possible solutions. 

3 Videos
Working better together

Participants in the two different sets of workshops tended to respond to the stories in a different way. The health and social care workers (who were largely white) tended to be surprised by the stories and attributed the tensions that they described as coming from poor practice. They responded by giving examples of how individuals can improve the situation by behaving differently. In contrast, the community workers (who were largely South Asian) saw the stories as typical of the challenges that they regularly encountered, demonstrating at best unconscious bias, and at worst systemic racism. Their solutions tended to involve both changes in the behaviour of healthcare workers and a need for services to be organised in different ways.

Drawing on the workshop discussions, we have identified some of the problems that can arise, along with strategies and recommendations to improve partnership working between large and small organisations. We make three different types of recommendations: for commissioners and managers of area-wide services; for local team leads and managers; and for clinicians and dementia workers.

This film provides a summary of some of the main points from our study.

The views and opinions expressed by speakers in the videos are based on their personal and professional experiences.