Psychosocial support for people affected by Genetic and Non-Memory Led Dementias: developing digital provision and understanding the role of existing TALKing therapy services (GNMLD-TALK).

Background Psychosocial support for the 850,000 UK adults living with dementia and their carers is critical.

We focus on support for five low-prevalent/under-researched types of dementia that are either genetic (autosomal dominantly inherited) or non-memory-led (predominantly affecting language, visual processing or personality).

Collectively called GNMLD, they directly affect ~115,000 people in the UK (~59,000 people with dementia, 45,000 carers, 11,000 at genetic risk).

Compared to typical dementias, GNMLDs pose additional challenges, including unusual symptoms, younger onset, and (in genetic dementias) the psychological impact of living at-risk. Consequently, GNMLDs have particularly high neuropsychiatric comorbidities and care costs.

However, dementia services are not designed for them and do not meet their needs, while geographical dispersion makes access to specialist care difficult.

To address this, we will examine existing psychosocial provision (Improving Access for Psychological Therapy [IAPT] services) and evaluate remotely-provided blended-person/digital interventions we have developed. Aims To: Examine IAPT s: Potential for non-memory-led dementia risk reduction. Treatment outcomes and pathways for people with non-memory-led dementia and anxiety and/or depression.

Optimise access to blended-person/digital interventions for people affected by GNMLD by: Understanding their needs. Creating resources to promote access based on this.

Evaluate our blended/person-digital interventions including: Adapting and testing implementation of NICE-recommended Virtual-Cognitive Stimulation therapy (VCST) for people with non-memory-led dementia.

Testing effectiveness of our blended-person/digital intervention to improve psychological outcomes for carers... ...and Individuals at-risk. Examine the economic impact of our interventions.

Methods This will be the largest psychological outcome study in people affected by GNMLD (n=~10,300), leveraging unique access to data infrastructure and resources with Equality/Diversity/Inclusion embedded throughout.

WP1 Using our MODIFY dataset (England-wide, pre-post IAPT, anxiety/depression data linked to healthcare records; n=1.9 million psychological therapy attendees; non-memory-led dementia=9,500; 13-year follow-up) we will: Examine association between IAPT outcomes and subsequent non-memory-led dementia incidence (cox regression; 13-year follow-up; n=5000) (Aim/WP1a).

Compare IAPT treatment outcomes/pathways between people with non-memory-led dementia and controls (logistic regression) and examine treatment/pathway predictors (multiple regression) (Aim/WP1b-c).

WP2-4 Recruiting from unique applicant-led research registers/services for people affected by GNMLD and genetic dementia cohorts (collective n=6,500), we will: Survey (n=385) and interview (n=60) professionals/carers/people with GNMLD about GNMLD access needs (Aim/WP2a) and use established co-creation processes to co-produce resources (videos/guidelines) with stakeholders (Aim/WP2b).

Use co-applicant published methods to adapt and test implementation of CST in a pre-post mixed methods trial (n=60) (Aim/WP3a).

Conduct two randomised control waitlist trials to examine whether our: Carer intervention (n=238) (Aim/WP3b) At-risk intervention (n=118) (Aim/WP3c) improve psychological outcomes vs. standard care.

Adapt established health economic guidance for dementia to GNMLD populations and examine cost-consequences of VCST, and cost-effectiveness of carer and at-risk interventions (Aim/WP4).

Timelines/Impact/Dissemination Our project will run for 5-years and has potential to transform psychosocial care for this group.

We will: Update participants/the public through: Websites/Twitter, newsletters/webinars/events, radio/TV/newspaper interviews, and applicant-run nationally-provided support groups. Work with UK-wide NHS commissioners to support upta