Forward with dementia: co-producing support for social care needs after a dementia diagnosis

Jane Wilcock In progress  


Many people living with dementia use homecare services to support them living at home. For people living with dementia without family or friends, homecare and other community services provide vital regular support and social contact. Most social care workers, especially homecare workers, often work alone, lack specific dementia training and are not confident in their roles.


This study 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.


This study will build on earlier research 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. The study will 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.

Working together the study will produce and deliver, a tailored supportive guide to social care post diagnosis. By working in partnership with people living with dementia, carers and social care practitioners, dementia organisations and other experts it will:

  1. Through interviews explore current experiences, information needs and gaps, what helps and what hinders post-diagnosis social care support
  2. In workshops, investigate how and why people seek information during the COVID pandemic
  3. Produce targeted information and practical tools to improve access to dementia related social care support
  4. Develop and deliver a plan to make sure Forward with dementia reaches the right people, and develop strategies to include groups who are often left out (such as those from rural areas/specific cultural backgrounds)
  5. Create better team-working between researchers social and health care workers.