South Asian dementia care pathway

  • Smith, Paula (PI)

Project: Central government, health and local authorities

Project Details


Of the 25,000 people from ethnic minority communities who are living with dementia in the UK, the largest, single grouping are people from South Asian communities. South Asians are more likely to be diagnosed with dementia at a later stage of the condition, when they are more impaired and are often in crisis, than are their white British counterparts. Consequently, they are less likely to access the dementia care pathway or to receive NICE-recommended treatments, including medication for Alzheimer s disease. There are also different patterns of service use, with South Asians who are living with dementia more likely to rely on support from community groups whose staff and volunteers are not dementia-trained. The cumulative effect of these differences in service uptake means that South Asians who have dementia and their families are socially and financially disadvantaged while NHS and social care services often operate in an inefficient and unproductive manner. The purpose of this study is to create an online toolkit of culturally appropriate assessments and interventions that support people from South Asian communities across the dementia care pathway. This will be the south Asian Dementia diAgnosis PaThway or ADAPT. We will do this through a series of linked work packages. In the first work package we will identify existing interventions that enhance recognition of dementia symptoms, enable assessment and promote support after diagnosis. We will then consult with people from different South Asian communities as well as NHS clinicians and social care staff to establish the most appropriate elements for the toolkit. In the second work package we will identify those factors that act as barriers or facilitators within statutory and voluntary sectors to successful implementation of ADAPT. These two packages of work will enable us to identify the elements of the online toolkit. A third work package will record video testimonies from South Asians with lived and professional experience of dementia. These will illustrate the key points of information that we have identified and these will also form part of the online web package, with shortened versions being used to disseminate key aspects of ADAPT through social media. The ADAPT enhanced dementia care pathway will improve engagement of South Asians who are living with dementia and their families with dementia services provided by either the NHS or by VCSOs. Increased engagement will result in three key outcomes: greater access to NICE recommended treatments; increased rates of dementia diagnosis; and diagnosis occurring at an earlier stage of the illness. Bringing together the ADAPT toolkit will enable us to move on, in subsequent research, to evaluate what aspects of the toolkit work best, for whom and in what contexts. This tier 3 study, then, provides an important platform from which we will be able to develop an understanding of the mechanisms underlying successful uptake of dementia services within South Asian communities.
Effective start/end date1/01/2131/12/21

Collaborative partners

  • University of Bath
  • NHS Bristol, North Somerset and South Gloucestershire CCG (lead)
  • University of the West of England
  • University of Bradford
  • University of Wolverhampton
  • Race Equality Foundation


  • National Institute for Health Research


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