Summary

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.