1. Recruit 900 people with dementia and follow their progress over 3 years.

Led by: Brighton and Sussex Medical School, Newcastle University and King’s College, London in collaboration with NHS sites Sussex Partnership NHS Foundation Trust, South London and Maudsley NHS Foundation Trust and Gateshead Health NHS Foundation Trust.

Aims: We will recruit 900 people who have just been diagnosed with dementia, from different backgrounds. We will follow their progress for 3 years and collect detailed data on the services they use, the cost of their care, their health and their quality of life.

Would you like to share your experience of living with dementia and help improve the lives of others? Find out more about taking part.


We will recruit 900 people with dementia and their carers to take part in the study, up to 6 months following their diagnosis with dementia. We will visit them four times in three years. During these visits we will collect detailed information about their use of services, financial costs and outcomes such as quality of life (including health and happiness).  

The participants will be from three areas of the country: Sussex/Surrey, Southeast London and Newcastle/Northeast England. We will include all people with a clinical diagnosis of any form of dementia whether they have a carer or not, to make sure all experiences are included. We will recruit more participants from some minority groups so we can find out more about the inequalities they experience in dementia care.

These groups include black African Caribbean and South Asian populations in Sussex and south London, as well as Lesbian, Gay, Bisexual, Transgender, and Queer (LGBTQ+) groups in Brighton.

Pairs of research workers (RWs) will visit each person with dementia and their carer (if they have one) at home, or another agreed place, soon after they join the project and afterwards at 12 months, 24 months and 36 months. The interviews will last no longer than two hours. If they are comfortable to do so, the person with dementia and carer will be interviewed by the research workers separately, on their own, to save time.  

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