Alzheimer's research: Is your study dementia-friendly?

The priority for Alzheimer’s researchers today is to spread awareness and de-stigmatize 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 Outdated and irrelevant views do more than simply make a study look bad.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 any effective Alzheimer’s research study. Read on to find out the key, industry-employed strategies that will make your clinical study more amiable.

Have a patient-first approach

It’s easy for researchers 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 retention rates.

High-quality relationships are characterized by communication in which researchers minimize the power distance between themselves and their patients.

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:

1. "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.

2. "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 the researcher, 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 research 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 any clinical trial, researchers 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 medical research companies. Besides a textbook of recommendations from government committees and health organizations, there are no universal, standardized principles of research - 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 research. So, we’ve summarised the three core concepts that improve the lives of patients and, if adhered to, define dementia-friendly research:

1. Well-being.

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 research participation to have practical benefits.

2. Autonomy and independence.

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. (Check out our key strategies for tackling stigma in the health industry, here).

3. Equality

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 discrimination in all areas of their study; meaning that any results produced feel inclusive and should, in theory, work for all.

It's important to remember that we are all of equal worth.

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 medical research. 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.



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