Better Living with Non-memory-led Dementia: study protocol for a randomised controlled trial of a web-based caregiver...

Area of Science:

• Neuroscience
• Gerontology
• Psychology

Background:

• Caregivers of non-memory-led dementias (posterior cortical atrophy, primary progressive aphasia, behavioural variant frontotemporal dementia) face unique challenges.
• Limited evidence-based support exists for this population.
• The Better Living with Non-memory-led Dementia (BELIDE) programme was co-designed with lived experience input.

Purpose of the Study:

• To evaluate the clinical and cost-effectiveness of the novel BELIDE web-based educational programme.
• To assess BELIDE's impact on caregiver depressive symptoms, stress, anxiety, self-efficacy, quality of life, and relationship quality.
• To explore barriers and facilitators to engagement with the BELIDE programme.

Main Methods:

• A parallel-group, single-blind, randomised controlled trial (RCT) involving 238 unpaid caregivers.
• Intervention group receives the BELIDE programme (six modules, onboarding, practice tasks, follow-up sessions).
• Control group receives treatment as usual and a wait-list for the programme.

Main Results:

• Primary outcome: reduction in caregiver depressive symptoms.
• Secondary outcomes: changes in stress, anxiety, self-efficacy, quality of life, and caregiver-patient relationship quality.
• Data collected online at baseline, 8 weeks, and 6 months.

Conclusions:

• The BELIDE programme has the potential to improve access to scalable, tailored support for caregivers of non-memory-led dementias.
• Successful implementation could significantly enhance caregiver well-being and quality of life.
• Further dissemination through publications and conferences is planned.