Dementia in Hertfordshire:
A Community Survey of Awareness, Experience, and Attitudes
Written By: The Narrators Lens CIC
Date: 24/03/2025
Introduction
Dementia is one of the most pressing health and social care challenges in the UK today, affecting nearly one million people nationwide. In Hertfordshire, it is estimated that around 16,000 people are currently living with dementia. With a county population of approximately 1.2 million, and over 220,000 residents aged 65 and above, the impact of dementia is being felt across families, care services, and communities.
As the number of older adults continues to rise, so too does the importance of understanding how dementia is perceived, experienced, and supported at a local level. While clinical research and treatment development remain essential, public knowledge and community awareness play a vital role in ensuring that people affected by dementia can live with dignity, safety, and inclusion.
This report presents findings from a community-wide survey conducted across Hertfordshire. The survey was designed to gather insight into local attitudes, beliefs, and lived experiences relating to dementia. It covered four key areas:
- General knowledge of dementia and its symptoms
- Personal experience with those affected
- Perceptions of care and support
- Wider attitudes toward awareness and community action
The purpose of the survey was not to test knowledge for accuracy but to capture everyday perceptions—what people believe, where they get their information, how confident they feel in offering support, and what challenges they expect when dementia enters their lives.
Responses were collected from a diverse group of residents, representing a mix of ages, backgrounds, and familiarity with dementia. The results highlight both the strengths and gaps in current understanding, as well as a strong public interest in learning more and taking part in dementia-friendly efforts.
This report provides a valuable foundation for future awareness campaigns, training opportunities, and support programmes in Hertfordshire. It gives voice to those with direct and indirect experience of dementia and identifies key areas where public engagement and education can make a lasting difference.
Section 1: General Knowledge
Introduction
This section of the survey explored public understanding of dementia in Hertfordshire. Participants were asked how they define dementia, what symptoms they associate with it, and what they believe about its causes, treatment options, and different types. The aim was to build a picture of how dementia is generally perceived by the community.
Rather than assessing knowledge for accuracy, the focus was on identifying common beliefs, themes, and areas where further education may be helpful. The responses offer valuable insight into how people interpret dementia based on personal experience, public messaging, and everyday encounters.
Public Understanding of Dementia
Participants were first asked what they believed dementia to be. The majority—91.1%—described it as something that affects memory, thinking, and behaviour. Smaller groups identified it as a mental illness (5.2%) or associated it with ageing (3.7%).
These figures suggest that, across Hertfordshire, most people see dementia as a complex condition affecting cognitive function rather than simply a mental health issue or a natural part of ageing. The relatively small number who link it with age alone may point to the growing influence of public health messaging and awareness campaigns that have reframed dementia as a medical condition rather than a routine consequence of growing older.
Awareness of Symptoms
When asked about common symptoms, 98.1% of respondents selected gradual memory loss. A small proportion—1.9%—chose sudden high fever, a physical symptom less commonly associated with dementia.
This overwhelming focus on memory reflects how deeply it is embedded in the public image of dementia. While memory loss is often the first noticeable sign, dementia also includes a wide range of other symptoms—such as difficulties with language, orientation, or problem-solving. Nonetheless, the result shows that memory remains the focal point of public understanding, which can help explain why other aspects of the condition are sometimes under-recognised.
Types of Dementia
Respondents were then asked to identify the most common type of dementia. The most frequent response was Alzheimer’s disease, selected by 64.0% of participants. This was followed by vascular dementia at 33.6%, and frontotemporal dementia at 2.4%.
While Alzheimer’s is widely known and frequently referenced in the media, vascular dementia is also a prominent concern—especially among older adults with cardiovascular conditions. The sizeable number of people who selected vascular dementia shows some awareness of its relevance, though it may also indicate confusion between subtypes. The small percentage choosing frontotemporal dementia suggests it remains relatively unknown in the wider community.
These results reveal how the public tends to cluster their understanding of dementia around a few main types, with limited exposure to less common forms.
Perceptions of Risk Factors
Participants were asked to identify which one of four listed options was not typically considered a risk factor for developing dementia. 64.9% selected high intelligence. The remaining responses included smoking (18.1%), high blood pressure (11.0%), and head injury (4.0%).
The results reflect a mixed understanding of what might contribute to dementia. A majority separated intelligence from risk, but nearly one in five participants did not discount smoking as a factor. Others linked dementia risk to physical health, highlighting how heart and brain health are becoming more commonly associated in public thinking. This shift is important. It suggests people are starting to connect lifestyle factors with long-term cognitive health—a direction public health messaging has been trying to encourage.
At the same time, the spread of answers shows there is still uncertainty. Some respondents may be unclear on how much control they really have over reducing their risk, particularly when presented with complex or unfamiliar medical terms.
Views on Treatment and Cure
When asked whether dementia can be cured, 93.4% of respondents said it could not, but that treatments could help manage the symptoms. 3.7% believed that a cure exists, while 2.9% thought a cure may be possible in the early stages.
These findings indicate that most people in Hertfordshire see dementia as a long-term, ongoing condition. There is, however, a small percentage who express hope for a cure—or may be uncertain about current medical capabilities. This blend of realism and optimism reflects how communities often absorb health information: combining what they know with what they wish could be true.
For professionals, these beliefs matter. If people think treatment can reverse or remove dementia, it may shape how they respond to a diagnosis or engage with care services. The recognition that treatments focus on managing rather than curing may help people prepare earlier and access support sooner.
Summary
The findings in this section reveal a community that is largely well-informed about dementia as a condition that affects thinking and memory. Most people are familiar with Alzheimer’s disease, link memory loss to dementia, and acknowledge that treatments can help manage but not remove the condition.
However, the survey also uncovered areas where knowledge is less consistent. A third of participants linked vascular conditions to dementia as the most common type, and nearly a fifth were unsure about the role of smoking. Responses suggest that while people understand what dementia is, they may be less certain about why it develops or how to reduce personal risk.
This provides a valuable opportunity. With the majority already familiar with the general concept, future awareness efforts can go further—exploring prevention, early signs, different types of dementia, and the importance of holistic care. In doing so, the Hertfordshire community can continue moving from awareness to understanding, and from recognition to readiness.
Section 2: Personal Experience
Introduction
Understanding public knowledge about dementia is only part of the picture. Equally important is recognising how that knowledge is shaped by lived experience. In this section, the survey explored the personal connections that individuals in Hertfordshire have to dementia—whether through family, friends, or broader social encounters. It also asked respondents to reflect on their perceived understanding of the condition and the sources from which they have drawn their knowledge.
This section provides a glimpse into the emotional and social landscape surrounding dementia, and highlights the role personal experience plays in shaping awareness and attitudes.
Personal Connections to Dementia
When asked whether they personally knew someone affected by dementia, 70.4% of respondents said they had a close family member with the condition. Another 7.1% mentioned a friend or distant relative, while 1.9% said they had met someone with dementia but did not know anyone personally. Only 16.9% indicated they had no known contact with anyone living with dementia.
These figures suggest that for many people in Hertfordshire, dementia is not an abstract health issue—it is something they have encountered in their own families and social circles. This direct connection may explain the relatively high levels of awareness observed in the general knowledge section. For most, dementia is not something learned about second-hand; it is something witnessed, managed, and remembered.
Perceived Understanding
Respondents were then asked to rate their own understanding of dementia. Half of them—50.9%—described their knowledge as good, indicating they knew the basics. Just under a third—31.2%—felt their knowledge was limited, and 14.2% rated their understanding as excellent. A small proportion either left this blank or gave no response.
This self-assessment shows that many people feel confident in their understanding, though there remains a notable group who feel they still have more to learn. This is particularly important when considering the design of future educational programmes. While some residents may benefit from deeper insights or updated information, others may still require introductory-level engagement.
The findings also suggest a healthy level of self-awareness among participants. Rather than overestimating their knowledge, many acknowledged its limits—an encouraging sign for future engagement and learning.
Sources of Information
To better understand how this knowledge is formed, the survey asked where respondents had learned the most about dementia. A majority—63.2%—cited personal experience with a loved one. Others reported learning from news and media (15.9%), educational resources such as books or training (8.1%), while 10.3% said they hadn’t learned much about dementia at all.
These responses reinforce the idea that experience is a primary educator. Formal channels such as books, training, or even news reports appear to play a secondary role. This has significant implications for how information is shared and absorbed. Stories, relationships, and lived moments seem to carry more weight than structured materials alone.
For organisations, this insight suggests that messaging and awareness campaigns may be more effective when they centre around real people, relatable situations, and emotional truth. Highlighting lived experience may not only inform but also build empathy and encourage action.
Summary
Personal experience shapes public understanding. In Hertfordshire, most people have a direct connection to dementia, usually through a close family member. This proximity has likely contributed to the strong awareness seen in other areas of the survey.
While many respondents feel confident in their knowledge, others acknowledge gaps—particularly those without personal exposure. And although formal education plays a role, it is personal stories that seem to inform people the most.
This section highlights the power of lived experience—not only in understanding dementia, but in shaping attitudes and driving public empathy. Any future work aiming to improve awareness would do well to build on this foundation, creating space for people to share, reflect, and connect through the reality of their own encounters with the condition.
Section 3: Dementia Care & Support
Introduction
While understanding and experience shape attitudes toward dementia, they also inform expectations—what people believe those affected need most, what challenges they face, and how the wider community can provide meaningful support. This section of the survey focused on those views. Participants were asked to reflect on the obstacles people with dementia might encounter and to consider their own willingness to engage further, whether through learning or local initiatives.
The aim was to better understand not only public opinion but also public readiness—to support, to advocate, and to help shape a dementia-friendly environment in Hertfordshire.
Perceived Challenges
Participants were asked what they believed to be the biggest challenge for individuals living with dementia. The most common answer—selected by 45.9%—was memory loss and confusion. This was followed by loss of independence (19.3%), access to healthcare and support services (16.1%), and lack of public awareness and understanding (7.7%).
These results show that most people continue to focus on the internal experience of dementia—the struggle to remember, the disorientation, the personal impact. At the same time, a significant number recognised broader systemic issues, such as difficulties accessing care or losing autonomy.
The smaller percentage who pointed to public awareness suggests that fewer respondents view external attitudes as a major barrier. This may reflect local efforts to build inclusive communities, or it could indicate that some challenges remain less visible to those not directly affected.
Willingness to Learn and Support
The survey then asked whether participants would be interested in learning more about dementia and how to support those affected. Over half—51.2%—said yes, definitely. Another 29.9% said maybe, if it was convenient, while 7.9% expressed limited interest, acknowledging its importance but not feeling personally compelled. A very small number—1.2%—said they were not interested.
This is a promising sign. The majority of people in Hertfordshire appear open and willing to deepen their understanding. Even those with reservations framed their answers in practical terms—highlighting convenience rather than disinterest as the barrier. This suggests that well-designed, accessible learning opportunities could have good uptake.
These responses also reflect a sense of shared responsibility. The question was not just about understanding dementia—it was about supporting others. That distinction is key. It indicates a willingness to act, not just to know.
Summary
This section reveals a compassionate and engaged community. Most residents who responded to the survey see the biggest challenges of dementia as personal—relating to memory, identity, and day-to-day function. But many also recognise structural difficulties such as care access and loss of independence.
Just as importantly, the data shows a strong appetite for learning and involvement. Over half of participants want to know more, and many others are open to engaging if the opportunity is accessible and convenient.
As Hertfordshire continues to shape its local response to dementia, these findings are encouraging. They suggest that residents are not only aware of the condition but are also ready to support those affected by it—provided they have the tools, time, and space to do so.
Section 4: Final Thoughts
Introduction
The final section of the survey invited participants to reflect on their emotional responses, confidence levels, and willingness to engage with local dementia-friendly initiatives. It also explored concerns people might have if they or a loved one were diagnosed, along with opinions on the current state of public awareness.
This closing section adds a personal dimension to the earlier findings. While previous sections focused on knowledge and experience, this part highlights how people feel—about dementia, about their own capacity to communicate, and about the potential challenges they might face if dementia touched their lives more directly.
Confidence in Communication
Respondents were asked how confident they felt when communicating with someone living with dementia. The most common response—47.1%—was somewhat confident, with participants saying they had basic knowledge but still felt unsure at times. Another 20.1% described themselves as very confident, indicating that they knew how to adapt their approach and support effectively.
On the other end of the scale, 26.3% admitted to being not very confident, and 6.5% said they were not confident at all, feeling unsure and awkward in such situations.
These figures highlight the emotional uncertainty many people experience when trying to connect with someone living with dementia. While nearly half of respondents feel they can manage, a significant proportion still express discomfort or hesitation. This suggests a clear need for practical, accessible communication guidance—something that can build both skills and confidence.
Personal Concerns
When asked about their biggest concern if they or a loved one were diagnosed with dementia, 45.5% of participants cited the emotional impact on family. Another 29.6% pointed to losing independence, and 18.0% were most worried about the financial cost of care. A smaller group—6.9%—expressed concern about access to medical treatment.
These responses reveal that dementia is not only seen as a medical condition—it is understood as a life-altering one, with emotional, financial, and relational consequences. People are not only thinking about their own wellbeing but about the effect on those around them. This insight is crucial. It reinforces the idea that effective dementia support must extend beyond the individual to their family, carers, and wider network.
Need for Awareness and Education
Participants were then asked if more public awareness and education around dementia was needed. A majority—51.3%—felt that while awareness was improving, more was still required. Another 43.8% believed that a lot more education was necessary. Only 3.7% were unsure.
This reflects a strong and consistent belief that public understanding of dementia, while growing, still has room for improvement. It reinforces earlier findings where participants recognised personal gaps in knowledge, and where interest in learning more was high.
Support for Local Initiatives
Finally, the survey asked whether respondents would support dementia-friendly initiatives in their local area. 41.1% said they would, provided it was convenient. 20.4% expressed a strong willingness to actively participate, and 34.8% said they might, depending on the nature of the initiative. Only 3.7% felt such efforts were unnecessary.
These results suggest that while active participation may be limited by time or circumstance, the general sentiment is positive. Most people are at least open to the idea, and many are looking for ways to contribute—especially if the initiatives are practical, meaningful, and accessible.
Summary
This final section of the survey brings a human perspective to the data. It reveals a community that, while increasingly informed, still feels some uncertainty—especially around communication and emotional preparedness. Many people are motivated by concern for their loved ones and by a desire to maintain dignity and independence in later life.
There is clear interest in continued awareness work and a strong appetite for local, inclusive action. People want to help—but they also want to feel equipped to do so. The findings reinforce the importance of pairing education with empowerment, and of ensuring that dementia support is not just clinical, but communal.
Summary and Recommendations
The findings from this survey offer a valuable window into how dementia is perceived and experienced across Hertfordshire. They highlight a population that is not only familiar with dementia—often through personal connection—but also one that is open, reflective, and eager to support.
Throughout the survey, four clear themes emerged: a growing base of public understanding, the central role of lived experience, a willingness to learn and help, and some remaining uncertainty about how to respond to dementia in everyday life.
General Understanding Is Strong—But Still Focused on Memory
Over 91% of participants identified dementia as a condition that affects memory, thinking, and behaviour. Nearly everyone (98.1%) associated it with gradual memory loss. These figures suggest that, at a surface level, dementia is widely recognised in the community.
However, there was less awareness of the broader symptoms and complexity of the condition. Alzheimer’s disease was the most frequently identified type (64%), but 33.6% believed vascular dementia was more common, showing a degree of confusion around types. Only 64.9% recognised that high intelligence is not a known risk factor, and many responses linked dementia to lifestyle-related risks such as smoking and high blood pressure.
What this tells us: The community has a solid baseline understanding, but that knowledge is often framed around memory and common stereotypes. There is space to expand awareness to include prevention, early signs beyond memory loss, and the diversity of dementia types.
Personal Experience Drives Understanding
A significant 70.4% of people reported having a close family member with dementia. Many others had encountered it through friends, relatives, or community members. Personal experience wasn’t just common—it was the most cited source of learning (63.2%).
Half of respondents said they had a good understanding of dementia, but nearly a third still felt their knowledge was limited. Only 14.2% rated their understanding as excellent.
What this tells us: While many people feel informed, they’re also aware of what they don’t know. Lived experience provides insight, but it doesn’t always translate into confidence. Education efforts that build on personal stories—and offer the chance to learn more in practical, approachable ways—are likely to be welcomed.
The Public Is Willing to Learn, Support, and Act
When asked about the challenges faced by those living with dementia, 45.9% pointed to memory loss and confusion, while others mentioned loss of independence (19.3%) and difficulty accessing services (16.1%).
More than half (51.2%) said they would definitely like to learn more about dementia and how to support others. A further 29.9% said they would consider it if the opportunity was convenient.
Confidence in communication was mixed. While 47.1% felt somewhat confident, over 32% said they were not very or not at all confident.
What this tells us: The community has empathy, interest, and willingness—but still needs tools. Training that builds confidence in everyday communication, or guidance on how to help someone with dementia in a practical way, could address these gaps.
People Are Thinking Ahead—And Want to Be Prepared
The emotional impact of a diagnosis was a central concern. If faced with dementia themselves or in a loved one, 45.5% said their biggest worry would be the effect on family. Others pointed to losing independence (29.6%) or the cost of care (18%).
Nearly everyone—95%—agreed that more education and awareness is needed. And 96.3% said they would support dementia-friendly initiatives in their local area, even if only passively.
What this tells us: People aren’t just interested in dementia—they’re invested. The responses suggest a strong desire to be part of the solution, even if they’re unsure where to start. Making local initiatives more visible, accessible, and participatory would allow more people to contribute in ways that suit them.
Recommendations
Based on these findings, the following steps are recommended:
- Promote Wider Awareness of Risk and Prevention
Use campaigns to highlight the links between lifestyle and brain health—especially in community settings like GP practices, libraries, and local events. - Offer Practical, Bite-Sized Learning Opportunities
Provide informal training or workshops that focus on communication, everyday support, and recognising less obvious symptoms. Online and in-person options should be available. - Use Lived Experience to Drive Engagement
Encourage peer storytelling, exhibitions, and events that centre the voices of those living with or caring for someone with dementia. Make these stories central to awareness efforts. - Build Confidence in Public Communication
Develop dementia-awareness training for the general public and local service workers (e.g., retail, transport, council staff), with simple tips on respectful interaction. - Support Families Emotionally and Practically
Signpost emotional support services clearly. Develop family-friendly materials that prepare carers for what to expect and where to turn. - Grow Dementia-Friendly Community Programmes
Expand existing schemes and develop new initiatives that meet people where they are—in schools, high streets, faith groups, and leisure spaces. Emphasise flexibility and involvement.
Final Reflection
The people of Hertfordshire are not indifferent to dementia. They are engaged, informed, and ready to be part of the conversation. Many have lived through it already. Others are just beginning to learn. What they need now are opportunities—to deepen their understanding, build their confidence, and help shape communities that are not only aware, but genuinely inclusive.
This report offers not an end point, but a beginning: a shared foundation on which to build a stronger, more dementia-ready Hertfordshire.
