Someone in the world develops dementia every three seconds. More than 55 million people are currently living with dementia worldwide – a figure projected to reach 78 million by 2030 and 139 million by 2050 (according to Alzheimer’s Disease International).
This burden is increasingly concentrated in low- and middle- income countries, where 60% of people with dementia already live. Rapid growth in older populations across China, India, South Asia, and the Western Pacific places pressure on healthcare systems and clinical research.
Yet reaching eligible patients remains difficult. Delayed diagnosis, caregiver dependency, treatment hesitancy, digital accessibility, and biomarker-driven eligibility can all narrow the recruitment pool. (Dive deeper into Alzheimer’s recruitment challenges here)
This year’s theme for World Alzheimer’s Month is “The earlier you know, the more you can do: A dementia diagnosis matters”. The growing importance of access to research is reflected in this year’s World Alzheimer’s Report, which also focuses on the role of clinical trials.
But identifying and enrolling patients is only the beginning. Alzheimer’s studies can be long and demanding, so clear, accessible communication is essential to keeping patients and caregivers engaged through to completion.
To mark World Alzheimer’s Day (September 21st), we asked Matthijs Wopke de Boer, Senior Medical Copywriter in our Creatives Team, to unpack the topic and share practical insights. Drawing from his experience in neuroscience and medical writing, and two years at Clariness, he breaks down why retention is a key challenge in Alzheimer’s clinical trials.
Matthijs tells us, “Recruitment and retention may be treated as separate stages, but patients experience them as one continuous journey. From the first advertisement or study website, every message shapes their expectations of what participation will involve. Clear communication about the study duration, visits, procedures, and available support helps patients and their caregivers make informed decisions. Retention therefore needs to be designed from the first study touchpoint, not after enrollment.”
Once participants enroll, communication must continue to guide them. For Alzheimer’s trials, this comes down to three essentials:
1. Designing for changing cognitive needs
Matthijs believes, “Good design removes unnecessary effort. Patients should be able to recognize where they are, understand what is expected, and find important information again without having to relearn the material each time.”
Alzheimer’s disease can affect memory, attention, and slow the ability to process information. As these needs may change over the long-term study, communication should be designed to reduce mental effort from the outset.
Materials should use clear visual hierarchies, generous spacing, legible typography, and strong color contrast. Familiar icons and recurring visual anchors can help patients recognize important information, while step-by-step layouts make actions easier to follow.
The same principles should apply across print and digital formats. Images should preserve dignity and avoid portraying people living with Alzheimer’s as helpless, confused, or defined entirely by their condition.
(Read what our Creative Director has to say on clinical trial branding here)
2. Copy that reduces uncertainty
“When memory and attention may change, participants should not have to remember everything. The communication should help them find and understand the information again,” says Matthijs.
Patient-facing copy should be short, direct, and explicit. Each communication should explain what is happening, what the participant needs to do, and where they can find help.
This means using familiar words, short sentences, and consistent terminology across every study stage. Required actions should be clearly separated from supporting information, and important instructions should be easy to revisit.
Language accessibility also matters. Language barriers exclude 15% of potential participants from diverse populations, while multilingual trials have been associated with twice the enrollment of diverse groups. Simply translating the same materials word for word may not be enough. Communication should account for the local language. Health literacy, cultural context, and familiar terminology. A properly localized, multilingual approach can help sponsors reach more diverse populations while creating a more consistent experience across study countries.
3. Communication with both patients and caregivers
In many Alzheimer’s trials, continued participation depends on both the patient and their caregiver. Their needs overlap, but they are not identical.
Patients need accessible explanations, clear next steps, visit reminders, and language that supports their autonomy. Caregivers need practical information about schedules, procedures, travel, and the support they are expected to provide.
This distinction is important because caregivers may be balancing employment, family responsibilities, and caregiving alongside the study. Research involving caregivers in longitudinal Alzheimer’s studies found that fatigue, inconvenient travel, distance, long visits, and difficult tracking procedures were among the reported concerns. (Travel alone can place significant pressure on both members of the patient-caregiver pair, reportedly deterring 35% of potential participants.) Better visit management and clearer information were also identified as opportunities to improve the study experience.
Matthijs explains that caregivers are generally supportive of their loved one’s participation in Alzheimer’s research, but that support does not necessarily translate into sustained participation. How study teams communicate can make a difference, particularly when caregivers and patients have clear information, know what to expect, and can easily get answers when questions arise.
“Patients and study partners need better coordination around site visits. They also want accessible information about Alzheimer’s disease and research findings, as well as regular updates about the participant’s progress. Meeting these needs consistently can help reduce uncertainty and make the practical demands of trial participation easier to manage.”
Patients and caregivers share the experience of a clinical trial, but they do not have identical needs. Effective retention communication therefore needs to address both audiences: giving patients the information and support they need to remain engaged, while helping caregivers understand what is expected of them and how they can support continued participation.
How Clariness supports engagement and retention in Alzheimer’s clinical trials
For sponsors, putting these principles into practice requires more than producing individual creative materials at different points in the study. Recruitment and retention communication should form one connected journey, with consistent language, visuals, and expectations from first awareness through to study completion.
Alzheimer’s trials require communication that adapts both to the stage of the patient’s enrollment journey and disease stage, as both impact the needs of people living with the disease. We translate patients’ lived experiences into trial communication that accommodates participants’ changing cognitive abilities and provides tailored communication for caregivers who often play a key role in supporting trial participation.
This approach supports one connected journey, from the first digital recruitment advertisements to visit reminders, educational resources, and milestone communications. It reduces uncertainty for patients, caregivers, and sites while supporting both recruitment and retention.
Ready to build retention into your Alzheimer’s trial from the first patient touchpoint?
FAQs
1. What are the biggest patient retention challenges in Alzheimer’s clinical trials?
The biggest challenges in Alzheimer’s trials include long study durations, frequent or lengthy visits, travel requirements, changes in cognition, and the ongoing need for caregivers. Unclear expectations and difficulty keeping track of study requirements can add to this burden. Clariness develops protocol-specific retention strategies and communication materials that help patients and caregivers stay informed, prepared, and connected throughout the trial.
2. What are the biggest patient recruitment challenges in Alzheimer’s clinical trials?
Alzheimer’s clinical trials often have complex eligibility criteria, including disease stage, biomarker requirements, cognitive assessments, and the availability of a suitable caregiver. Clariness combines targeted outreach with protocol-specific pre-screening to identify and refer better-qualified patient-caregiver pairs.
3. Why are caregivers important in Alzheimer’s clinical trials?
Caregivers help Alzheimer’s patients understand information, attend visits, follow study requirements, and report changes over time. Their willingness, availability, and continued support are essential to both enrollment and retention. Clariness strategizes communication across the full trial journey, using reminders, study guides, educational materials, and milestone communications to support continued participation.
4. How can patient communication improve clinical trial retention?
Clear communication can establish realistic expectations, explain procedures, reinforce next steps, and make study information easier to revisit. Timely materials can also help patients and caregivers prepare for visits and know where to find support.
5. How should clinical trial materials be designed for Alzheimer’s patients?
Clinical trial branding materials should reduce mental effort through simple language, clear layouts, legible typography, familiar visual anchors, and step-by-step guidance. Clariness combines medical copywriting and creative design expertise to produce accessible materials that support understanding while respecting patients’ dignity and autonomy.