Is your clinical study dementia-friendly?
The priority for Alzheimer’s clinical trials today is to spread awareness and destigmatize the condition. While this effort might seem redundant in our modern age of mental health, bear in mind it was only a few hundred years ago we stopped branding mental illness as “madness.” How society views Alzheimer’s and dementia is primarily controlled by our medical professionals. So, if a clinical study calls patients "sufferers", what does this say about the condition as a whole?
The latest World Alzheimer Report found that attitudes towards dementia, including those held by medical professionals, are increasingly positive - but many remain problematic. Outdated and irrelevant views do more than simply make a study look bad. Patients who regularly face stigmatized attitudes and behaviors are more likely to suffer a range of poor health outcomes, and even have a reduced capacity for taking care of themselves.
Dementia friendliness is more than just a soundbite or an advertising slogan - it’s essential to effective Alzheimer’s clinical trials today. Read on to find out the key, industry-employed clinical protocol that will make your clinical study more amiable.
Have a patient-first approach
It’s easy for research sites to get caught up in the romance of humanity-saving cures and Nobel prizes. What is harder is finding a balance between your dreams and reality. Regardless of ambition or drive, patients - other people - must always be at the forefront of any researcher's vision. A patient-first approach not only emphasizes the humanity of any clinical trial but also improves patient recruitment rates.
Dr. George Findlay of the NHS Foundation Trust outlines the approach he implemented to increase patient satisfaction and to improve productivity in crisis management. Findlay summarises the method in two core principles:
How can I fix it?
A focus on the solution, not the problem, is paramount to a dementia-friendly approach. Unfortunately, it is common in the workplace for people to shift blame or difficulty onto someone or something else. So, being proactive and optimistic in your conduct proves to candidates that you mean business. To champion your problem-solving skills, make sure your FAQ and feedback forums are updated regularly.
The little things matter.
Running a successful operation is not all about big, fancy initiatives. When issues arise, focus on them individually and make personalised solutions. Too much emphasis on a “wider picture” outlook in crisis management can easily turn helpful terminology, such as ‘patient-first’ or ‘patient retention’, into corporate jargon.
Patient-first approaches rely on the conduct of research sites, and the efforts they make in securing quality relationships with candidates. High quality relationships are characterised by communication in which researchers minimise the power distance between themselves and their patients. While clinical studies should always be championed by a dream, make sure it’s a shared one.
Watch your language
Pain, rupture, locked, and frozen. Discomfort, tear, stiff, and worn. Which of these sets of words would you want your doctor to use when describing your illnesses? It's safe to say: we would all prefer the latter.
”Anxiety weighs down the heart, but a kind word cheers it up.” There is a lot of truth in this simple proverb. A recent study by HAND found that words can shape or reinforce a patient’s coping strategies. Pain isn’t just physical, it’s also mental: psychological distress has been proven to be an important predictor of pain intensity and disability in patients. So, to attract and retain candidates for clinical trials, research sites must think positively. A dementia-friendly study exemplifies care through meticulous word choice across all forms of communication. Positive communication is defined by several factors: positive intentionality, initiative, adaptation, empathetic listening, and social support. Whether it's on an informative leaflet or during a consultation with the candidate, the researcher's language must always be empathetic to the individual. Remember: while actions speak louder than words, it still matters what you say.
Champion these values
Core values have always been problematic for clinical research companies. Besides a textbook of recommendations from government committees and health organizations, there are no universal, standardized principles of clinical studies - other than what is considered misconduct, of course. This is, fortunately, no longer an issue. In 2019, the World Alzheimer’s Report cited Routledge’s 'Handbook of the Philosophy of Well-Being' as an essential guide to understanding patient welfare. The ethos outlined corresponds to the beliefs that underlie successful Alzheimer’s clinical trials. So, we’ve summarised the three core concepts that improve the lives of patients and, if adhered to, define dementia-friendly clinical research:
Make sure patients feel content and safe, with a sense of self-worth and purpose. Suffering pain, distress, fear, loneliness, and humiliation can all detract from the quality of one’s life. Dementia-friendly projects must focus on inclusion and social engagement. An ideal study enables the person with dementia to continue their interests, and include mentoring that allows clinical research participation to have practical benefits.
Over the last fifty years, there has been a lot of positive change concerning individual autonomy and decision-making. The progressive view upheld by dementia-friendly organizations is this: patients must retain their own sense of self, and must not be defined by their illness. The stigma surrounding mental illness needs to be challenged by medical specialists. Never talk about the patient as if they’re not in the room listening - even if their mental state is deteriorated and you’re speaking with a caregiver, always keep their dignity and humanity in mind.
Despite all the differences between people – in their cognitive or physical capacities, in their ethnicity, religion, gender or sexual orientation, in their age or level of wealth and so on – it’s important to remember that we are all of equal worth. It is widely recognised that people who are routinely treated with disrespect, as inferiors, have reduced quality of life. Dementia-friendly organisations fight proudly against descrimination in all areas of their study; meaning that any results produced feel inclusive and should, in theory, work for all.
Dementia friendliness is more than just a soundbite or an advertising slogan. It gives a name to the core principles of good intention that drive clinical studies. While the complete de-stigmatization of mental illness is still far away, health specialists can shorten the distance. Clinical research becomes a humanitarian enterprise when the professional relationship between researcher and patient has a personal touch.
Here, we’ve created the ideal patient recruitment dashboard to help researchers improve their current metrics. With over 3 million patients on record, we ensure research sites are connected to a thoroughly educated and engaged pool of participants; so, it is no wonder why we have such high patient confidence! Now, we would say that other models are available - but this would be a lie. In fact, unlike that offered by other patient recruitment companies, our easy-to-use dashboard is the first-of-its-kind for the market; giving researchers a unique insight into their patients’ wants and needs via industry-leading technology. The future of clinical recruitment starts here.
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