EquaDem Network Plus: A national network on addressing inequalities in dementia diagnosis and care and building capacity

People living with dementia and their unpaid carers often face many inequalities in accessing care, and obtaining an assessment and diagnosis. This differs according to characteristics such as their age; gender; ethnicity; socio-economic, educational background, and location (rural/urban); with 'postcode lotteries' of different access to diagnosis and care. Moreover, dementia-specific inequalities include rare dementia subtype diagnosis (such as Lewy Body, semantic, or behavioural-variant fronto-temporal dementia), living alone or having a caregiver, as well as young- versus late-onset dementia. With over 900,000 people living with dementia in the UK, and numbers expected to rise, co-developing solutions to addressing inequalities in dementia diagnosis and care is pertinent and long overdue.

This Dementia Network Plus focuses on bringing together diverse academic, lived experience (people living with dementia and unpaid carers), professional (health and social care), and voluntary sector expertise to discuss and co-develop solutions to inequalities in dementia diagnosis and care. Comprising seven Universities, two national dementia Charities, health and social care professionals and lived experts (carers, person living with dementia), and the UCL-based NIHR-funded 'Dementia Researcher' lead as core team members, the Equalities in Dementia (EquaDem) Network Plus will host various networking, capacity-building (for academic, health and social care professionals, Third Sector, and people with dementia and carers), and pilot-project activities over five years. These include:

(1) 12-month Knowledge Mobilisation internships for health and social care and Third Sector providers, role modelled on the National Institute for Health and Care Research Applied Research Collaboration North West Coast approach;

(2) 18-month pilot projects;

(3) regular face-to-face and remote networking and capacity building events;

(4) an annual Conference, as well as events jointly with a European network of dementia care researchers (INTERDEM) and Alzheimer Europe.

In addition to our core lived and professional experts, we will have two public adviser researchers to support the pilot projects and Knowledge Mobilisation internships in addition to our experts-by-experience consultation groups (people with dementia, carers, health and social care providers). Our Network Plus will benefit from strongly integrated and funded public and stakeholder involvement throughout, and has been co-produced with non-academic core team members and eight purposefully consulted unpaid carers.

This Network Plus has the potential to develop solutions to barriers in dementia diagnosis and care and impact clinical and social care practice to remove those barriers. By closely working together with people living with dementia and unpaid carers, as well as care professionals and Third Sector organisations, we will create a Community of Research and Practice to find solutions to inequalities, linked to knowledge mobilisation internships and pilot projects. This will deliver key policy and practice guidance in consultation with the Social Care Institute for Excellence, Dementia UK and the Alzheimer's Society, alongside submitting evidence to the All-Party Parliamentary Group on Dementia and Alzheimer's Disease International. This is part of a wide strategy to communicate our findings to a range of audiences and policy-makers focused on ways to implement our findings and recommendations.