Bridging the Gap Between Infection Prevention Guidance and Dementia Care: A Qualitative Study of HealthcareProfessionals’ and Family Caregivers’ Experiences

When a virus spreads through a community, public health officials issue clear instructions to stop it: stay apart, wear a mask, wash hands. These rules work well for most people because they rely on the ability to read a sign, remember a new instruction, and follow it even when it feels inconvenient. But for a person living with dementia, the mind works differently. The condition affects memory, the ability to understand complex ideas, and the capacity to recognize new dangers. A rule that says "stay in your room" might make no sense to someone who has lived in that room for decades and believes they need to go to the kitchen to make tea. In these moments, the standard instructions for safety can clash with the reality of daily life, leaving family members and care workers to figure out how to keep people safe without causing them fear or confusion.

Researchers at the University of Brighton, the University of Sussex, and the University of London wanted to understand exactly how this clash happens. They interviewed twenty people in the United Kingdom between August 2024 and February 2025: ten healthcare professionals who worked in care homes or public health, and ten family members who cared for a relative with the condition. The researchers asked them to reflect on their experiences during the COVID-19 pandemic, specifically how they received official advice, how they tried to explain it to the person with dementia, and what they had to change to make it work. The study, published in October 2026, suggests that the gap between general safety rules and the needs of people with dementia is wide, and that closing it requires more than just better writing; it requires a complete rethink of how advice is made and shared.

The first thing the researchers found was that the advice itself was often difficult to use. During the pandemic, official guidance changed frequently, sometimes every week. For a care worker trying to manage a shift, or a family member trying to keep a relative calm, this constant change created confusion. The instructions were often long, filled with medical words, and written for a general audience that could read and understand complex text. When the advice did not specifically address the challenges of dementia, the people on the front lines had to do the work of translating it themselves. One care home director noted that the standard rules were impossible to follow for residents who did not understand why they had to stay in their rooms. Without specific guidance on how to handle these situations, staff and families were left to rely on their own judgment, which varied from place to place and person to person.

Trust and timing were also major hurdles. While many people trusted the National Health Service and government websites, others found the information delayed or incomplete. This was especially true for resources that had been translated into different languages. By the time a translated leaflet arrived, the situation on the ground might have already changed, or the infection might have already spread through a care home. When official sources felt slow or unclear, families and staff turned to social media or word of mouth, which sometimes led to misinformation. The researchers heard stories of people feeling abandoned by the system, forced to fill in the blanks with whatever information they could find, rather than receiving clear, timely support designed for their specific situation.

Once the advice was received, the challenge shifted to how to share it with the person living with dementia. The interviews revealed that a single approach does not work for everyone. Dementia affects each person differently, and what works for one individual might frighten another. Caregivers described the need for patience and repetition, often explaining the same simple idea many times. They learned to use pictures, videos, and large fonts to help convey messages, rather than relying on long documents. However, they also warned against making the materials look childish or patronizing. The goal was to respect the person's dignity while making the information understandable. Some caregivers found that if a person could not understand why they had to wear a mask or stay away from visitors, the strict enforcement of the rule caused deep distress. In these cases, the caregivers sometimes had to make a difficult choice: prioritize the person's emotional well-being and freedom, even if it meant taking a small risk with infection.

The study highlighted a deep tension between keeping people safe from infection and keeping them happy and connected. For a person with dementia, isolation can feel like abandonment. One family member described how her mother, who could not understand the concept of a virus, believed her family had stopped loving her because they could not visit in person. This emotional pain was sometimes worse than the physical risk of the virus. Care workers reported that when residents became distressed by masks or restrictions, they sometimes negotiated with them, removing the masks or allowing them to move around, because forcing the issue caused more harm than the infection risk itself. The researchers found that the official guidance rarely offered a way to balance these competing needs. It tended to present a single set of rules, without acknowledging that for some people, following those rules strictly could be psychologically damaging.

To fix these problems, the people interviewed offered clear suggestions for the future. They wanted a central library of resources that had already been adapted for people with dementia. Instead of every care home or family having to create their own leaflets or videos, they wanted access to a trusted collection of materials that were short, visual, and easy to understand. These resources should be available in many formats, including print and audio, not just online, to ensure that older adults who do not use the internet are not left behind. The researchers also emphasized that the people who actually do the care work should be involved in writing the rules. The current guidance was often written by people sitting in offices who had never seen a care home or lived with a family member with dementia. By including frontline staff and families in the process, the rules could become more realistic and practical.

The study does not claim to have solved the problem of infection control in dementia care, nor does it provide a new medical formula for stopping viruses. Instead, it points out a specific failure in how information is currently delivered. The researchers suggest that future outbreaks will be managed better if the guidance is designed with the needs of people with dementia in mind from the very beginning. This means creating materials that are accessible, offering flexible options for difficult situations, and ensuring that the voices of those on the front lines are heard when the rules are written. The work suggests that safety and well-being do not have to be enemies, but achieving that balance requires guidance that is as thoughtful and adaptable as the care it is meant to support.