4,068 posters, 219 videos, 101 topics, 69 sessions, 14,365 authors, 6,128 institutions

Alzheimer's Association International Conference 2026

July 12-15, 2026 | London, United Kingdom, and Online

1157

Supporting people at Genetic Risk of Familial Frontotemporal Dementia and Familial Alzheimers Disease – The IWARF intervention and RCT.

Preview of Supporting people at Genetic Risk of Familial Frontotemporal Dementia and Familial Alzheimers Disease – The IWARF intervention and RCT.

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Poster Presenter

Josh Stott

Authors

Oliver Hayes, Anastasia Tsipa, Celine El Baou, Sam Rossi-Harries, Nikki Zimmermann, Sebastian Crutch, Emma Harding, Jonathan Rohrer, Caroline Greaves, Joshua Stott, Emilie Brotherhood

Affiliations

UCL, University of Hertfordshire, University of Liverpool

Part of Topic

Improving Wellbeing Associated with Rare Familial Dementias (IWARF): Development, Refinement and Early Evaluation of an ACT‑Informed Intervention

Background

Familial frontotemporal dementia (fFTD) and familial Alzheimer’s Disease (FAD) are inherited neurodegenerative conditions associated with substantial psychological burden.

Individuals may face uncertainty regarding future disease onset, family planning, caregiving responsibilities and genetic testing decisions. Despite these challenges, there are currently no evidence-based psychological interventions designed specifically for this population.

To address this unmet need, we developed Improving Wellbeing Associated with Rare Familial Dementias (IWARF), an online blended intervention informed by Acceptance and Commitment Therapy (ACT) and designed to support wellbeing and psychological flexibility in people affected by familial dementias.

Why ACT?

ACT focuses on developing psychological flexibility: the ability to remain engaged with meaningful life activities whilst making space for difficult thoughts, feelings and uncertainty.

Core ACT Processes

Acceptance: Making space for unpleasant thoughts and feelings

Cognitive defusion: Gaining distance from thoughts rather than getting caught up in them

Present-moment awareness: Developing mindful awareness of current experience

Self-as-context: Developing a flexible sense of self that can observe thoughts, feelings, and experiences without being defined by them

Values clarification: Identifying what matters most

Committed action: Taking meaningful, values-based action

Development of IWARF

IWARF was developed through an iterative process informed by research, clinical expertise, participant feedback and patient and public involvement and engagement (PPIE).

Qualitative interviews with people affected by fFTD (n = 16) --> Initial development of IWARF --> Acceptability and refinement study (n = 13) --> Qualitative feedback and intervention adaptation --> fFTD PPIE group (n = 6) and FAD PPIE group (n = 5) --> Further refinement --> Final intervention --> RCT – Internal pilot completed. Full RCT ongoing.

IWARF Intervention

Duration: 9 weeks

Digital Modules: 8

Facilitator Check-ins: 3

Delivery: Online

Theoretical Framework: ACT

Module Content

Informational videos on fFTD/fAD

Worry and low mood

Values

Getting caught up in difficult thoughts and feelings

Avoidance and coping

Worries that won’t go away

Uncertainty

Worry about symptoms or status

Survivor guilt and anger

Living well at-risk

Managing isolation with support

Facilitator-Led Check-ins

Three structured online sessions supported:

Reflection on module content

Practice of ACT skills

Integration into everyday life

Troubleshooting barriers to implementation

Refining IWARF: Key Adaptations

Improving accessibility: e.g., adding workbook summaries, downloadable resources

Improving engagement: e.g., balancing content, email reminders, progress indicators

Improving relevance: e.g., flexible “pick and choose” approach, broadening emphasis on wellbeing beyond illness-specific concerns, adding alternative ACT metaphors and exercises

Internal Pilot Results from RCT

The refined IWARF intervention is currently being evaluated through an RCT. The internal pilot for which used the first 9 months of data.

Internal Pilot Progression Criteria (Red, Amber, Green)

Recruitment: green, 28% of total sample

Attendance at check-in sessions: green, 83%

Engagement with online resources: green, 94% of users used the system more than once.

Retention and follow-up: 87% completed the primary outcome measure at 6-months

Key Learnings

Psychological support is needed: There is a clear need for accessible psychological support tailored to the unique experiences of people affected by familial dementias.

Online delivery is feasible: A fully online format offers a scalable approach capable of reaching people affected by familial dementias across the UK.

Lived experience strengthens intervention design: Iterative PPIE involvement improved acceptability, relevance and accessibility.

ACT as a useful framework: ACT appears to offer a helpful framework for supporting people to respond to uncertainty and difficult emotions arising from realistic concerns about the future, while continuing to engage in valued activities.

Facilitators with specialist knowledge enhance engagement: Facilitators’ specialist knowledge of familial dementias was consistently highlighted as valuable, helping participants feel understood and supporting the application of ACT skills in everyday life.

Take-home message

IWARF is the first ACT-informed intervention specifically developed for people affected by familial dementias and has been refined through participant and PPIE involvement prior to evaluation in an RCT.

People affected by familial dementias require tailored psychological support. IWARF represents a novel approach designed specifically for this population and has the potential to improve access to evidence-based psychological support for people affected by familial dementias.

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