Lay Glossary

Acetylcholine: Neurotransmitter involved in motor processes (striatum), memory (hippocampus) and sleep regulation (brainstem).

AD: AD is a common acronym used to refer to Alzheimer’s disease but it is also sometimes used to refer to Alzheimer’s dementia, which can lead to confusion. In this glossary, the abbreviation is used to refer to Alzheimer’s disease.

ADL: Activities of Daily Living.

Adverse event/effect: An unintended effect that is harmful or otherwise unwanted, that is believed to be related to or caused by a drug, treatment or intervention.

Agonists: Depending on how it is used, it can have two meanings: drugs that stimulate dopamine receptors or any other neurotransmitter in the brain, or muscles that actively contract to perform a movement.

AI (artificial intelligence): AI stands for artificial intelligence, which is the simulation of human intelligence processes by machines or computer systems. There are different types of AI. AI that is classed as LLM (which stands for large language models) mimics cognitive functions that are usually associated with the human mind (e.g. learning and problem solving). However, older AI approaches can still solve classification problems by applying mathematical operations, that aim to reach an optimised solution to a given problem.AI is programmed to recognise patterns/clusters of similarities, like children learn, for example, to recognise that animals with four legs that also bark are dogs. These approaches typically make use of statistical and mathematical processes that predict the most likely solution to a given problem. AI is the broad category and there are different sub-categories of it such as machine learning and deep learning.

Akinesia: Absence of movement, loss of the ability or speed to move. There is no actual paralysis or muscle weakness. When the alteration of movement is not complete (more common) it is more correctly called hypokinesia (little or slow movement).

Algorithm: An algorithm is a set of well-defined instructions or rules that must be followed in order to solve a specific problem or perform a computation. These instructions are typically expressed in the form of mathematical equations or a set of parameters that must be met by a program, which are typically executed by a computer. Algorithms can be used to organise or analyse data, or to make predictions or build models. They are commonly used in computer science, mathematics, artificial intelligence, data science and research.

Alzheimer's Disease: A few decades ago, the terms Alzheimer’s disease and Alzheimer’s dementia tended to be used interchangeably. Nowadays, the term Alzheimer’s disease is used to refer to a continuum extending from pre-clinical Alzheimer’s disease (in which there are abnormal changes in the brain) to Alzheimer’s dementia (marked in addition by changes in cognition and functioning which interfere with daily life).

Amantadine: A substance that may be used early in Parkinson's disease or in more advanced stages as a treatment for dyskinesias (involuntary movements).

Amimia: Complete lack of facial mimicry, with marked reduction in expression and gestures.

Amyloid plaques: Abnormal clusters of “sticky” proteins called beta-amyloid that build up between nerve cells and interfere with signalling in the brain e.g. triggering inflammation and destroying cells. One of the hallmarks of AD pathology

Amyotrophic Lateral Sclerosis: Amyotrophic lateral sclerosis (known as ALS) is a nervous system disease that affects nerve cells in the brain and spinal cord, causing loss of control over muscles needed to move, speak, eat and breathe. It is sometimes referred to as Lou Gehrig's disease after a famous baseball player who had it. About 10% of cases are inherited and for the remainder, the exact cause is unknown. ALS is most common between the age of 55 and the mid-80s and is a progressive disorder which means that it gets worse over time.

Ancestry Informative Markers (AIMs): A set of genetic variations for a particular DNA sequence that appear in different frequencies in populations from different regions of the world. Genetic ancestry describes genetic relatedness more accurately than race or ethnicity, but the interaction of biological and social factors in relation to health must still be considered.

ANN: Artificial Neural Network

Anonymisation: Rendering personal data anonymous. That is, transforming the data such that it is no longer possible to associate the data with an identified or identifiable person. Anonymous data is not subject to the EU's General Data Protection Regulation (GDPR).

Antagonist: A substance which, by blocking a receptor, prevents it from being stimulated or, alternatively, a muscle which has an opposite action to another.

Anticholinergics: Drugs used in Parkinson's disease, primarily to reduce tremor.

Arm (of a clinical study): This is a subsection of people in a clinical study (e.g. in a drug trial) who have a particular intervention. They may, for example, receive the “usual treatment” for a particular condition whereas people in another “arm” might receive the experimental drug.

Asymptomatic/at risk for AD: In the context of the new AD definitions, a sub-group of preclinical AD consisting of pathological changes in people’s brains which are specific to AD but with no clinical signs/symptoms of AD. Not everyone in this sub-group will develop AD dementia which is why the term “at risk” is often preferred.

Ataxia: The word Ataxia comes from the Greek and means “without order.” Ataxia refers to disorganised, clumsy movements and difficulties with balance. Coordination of movement requires multiple parts of the nervous system to work together and if one area is damaged ataxia may occur. The doctor will examine someone to see if it can be determined if ataxia is caused by dysfunction of the brain, spinal cord, or nerves. The most common area of the brain responsible for ataxia is the cerebellum.

Atypical Parkinsonism: The term “atypical” means that the condition differs from Parkinson’s Disease in a few ways (e.g. earlier falls and more rapid progression, no tremor, poor medication benefit and surgery being of no value).

Autonomy: Traditionally described as the condition or quality of being independent and the ability to make decisions for yourself about what you do, or what is done to/for you. However, it is increasingly recognised that people exist in the context of relationships, engage in give and take, and are interdependent. Relations, institutional conditions, legislation and dementia therefore affect the exercise of individual autonomy.

BAME/BME: BAME stands for Black, Asian and Minority Ethnic and BME for Black and Minority Ethnic. However, terms such as ‘Black’ and ‘Asian’ are applied to very different groups of people, with quite different cultures. This may sometimes result in assumptions being made that people have things in common when this is not the case and overlooking significant differences such as different languages, religious beliefs, shared histories and traditions. Also, the term Asian is often used by US and European researchers differently (i.e. excluding or including people identifying with the Indian community).

Basal ganglia: Nuclei located deep in the brain made up of interconnected nerve cells that coordinate movements.

Beneficience: Doing things for the benefit of others (whilst balancing possible benefits against risks and costs).

Bias: Bias, in the context of AI, refers to systematic discrimination by AI systems which in many cases mirrors and amplifies human biases in everyday life. Such bias often results from flawed, biased or non-representative training data and algorithms (e.g. facial recognition trained on light skin). Sometimes, such bias occurs because of human oversight of the generation of training data (which can be exacerbated by the availability of diverse training data) but it can also be inherent in societal structures, therefore not only reflecting but also reinforcing stereotypes and exacerbating discrimination.

Biosample: Biosamples are biological specimens that are collected from living organisms such as humans, animals and plants usually for the purpose of research, diagnosis or treatment. For humans, this could include samples such as blood, tissue, saliva, stools, urine and other bodily fluids.

Biomarker: A biomarker is a biological substance (e.g. a protein that may or may not be detected in a body fluid) or a structure (such as some changes in size in specific parts of the brain) that is considered as a "mark" indicative of a disease. Biomarkers can change, appear or disappear during the development of a particular pathology. They can be detected through tests and technologies such as neuroimaging (brain scans) and through the analysis of cerebrospinal fluid (CSF - a body fluid found around the brain and spine) and blood.

Black: the term “Black” has gone from being considered offensive, and thus replaced by “coloured”, back to being considered a respectful way to refer to Black people, with ”coloured” now generally being considered offensive. There is still some disagreement as to whether the word should be capitalised or not, although there is currently a movement in favour of capitalization. Lay people, clinicians and researchers are not always aware of the developments in language which, as just explained, take place gradually over many years and sometimes fluctuate in terms of what is considered appropriate and respectful. There may also be differences in the use and acceptability of direct translations of terms in different languages and in different countries. This is the case, for example, with the term “gypsy” which is used by and with reference to people from this group in the UK, but for which the equivalent term in French and German tends to considered offensive and disrespectful.

Black box: A "black box" in AI refers to a system, often a deep learning model, where the inputs and outputs are visible, but the complex internal process of input is converted into output is opaque and not easily understandable, even to its creators, making debugging, ensuring fairness, and building trust challenging. For example, ANNs have several “layers” to them where only the first and last one or two layers may be interpreted by humans.

Blood-brain barrier: A structure that acts as a filter between the blood and the brain, preventing the passage of some substances (such as dopamine) and allowing the passage of others. Levodopa is therefore administered to people with Parkinson's disease (which does cross the blood-brain barrier) so that the patient's own neurons produce dopamine.

Botulinum NeuroToxin (BoNT): This is a naturally occurring protein made by the bacterium called clostridium botulinum. In the past, people only knew BoNT as a dangerous and feared poison. When BoNT contaminates food, it can cause botulism: a severe and potentially deadly illness. In the last 40 years, however, researchers have transformed this poison into an effective and safe drug to treat many medical conditions (e.g. dystonia) when used at the correct dosages.

Bradykinesia: Slowness of movement.

Bradyphrenia: Slowed thinking, reduced mental reflexes. The brain takes longer to process information and has difficulty switching from one motor programme to another in response to a demand for movement. Slowing of certain mental processes.

Bromocriptine: Dopaminergic agonist

Carbidopa: A substance used in association with Levodopa to prevent its destruction or degradation outside the central nervous system and thus allow more Levodopa to reach the brain. Carbidopa: A substance used in association with Levodopa to prevent its destruction or degradation outside the central nervous system and thus allow more Levodopa to reach the brain.

CBD: Corticobasal degeneration Cerebellum: The cerebellum is a small part of the brain, located at the base of the skull. It is responsible for coordinating voluntary movements and maintaining posture, balance and equilibrium, as well as contributing towards motor skills, some cognitive functions and emotions, particularly in relation to fear and pleasure. It is small but contains more than half of the neurons in the entire nervous system.

Cerebral amyloid angiopathy (CAA): This condition is characterised by an accumulation of amyloid proteins in the walls of blood vessels in the brain. This can damage the blood vessels, cause bleeding (hemorrhagic stroke) and lead to cognitive decline particularly in people over 60. There is a close link between CAA and Alzheimer's disease due to the presence of amyloid. Symptoms may include headaches, confusion and memory loss. As there is no cure for CAA, treatment focuses on managing symptoms and avoiding complications.

Cerebrospinal fluid: A body fluid found around the brain and the spine.

Chatbot: A chatbot is a computer programme that uses artificial intelligence to imitate human conversation through text or voice commands without human intervention. Initial chatbots were little more than a rule-based call and response. LLM (large language models) based chatbots, are based on large complex models derived from their training data, which include human interactions from the web and as such will contain all the complexity of human interactions and emotions. Hence, when using this training data to interact with a human user, it is quite possible for them to appear to have human concern and empathy. However, they must be correctly programmed to ensure that their interactions remain as polite conversations.

Cisgender: Refers to a person whose sense of personal identity and gender corresponds with the sex attributed to them at birth.

Clinical-biological entity: Something that has clinical and biological characteristics.

Clinical diagnosis: The act or process of discovering or identifying a disease or medical condition by means of a medical examination to detect signs and symptoms or of laboratory tests etc. which can then be communicated to patients by doctors in the form of a diagnostic label and an explanation of what that means.

Clinical onset: When symptoms manifest (tremor, rigidity, reduced mobility, etc.). CNS: Central nervous system (the brain and the spinal cord).

Cognitive data: Cognitive data refers to the information processed and analysed by cognitive computing systems, which mimic human thought processes. It is also closely linked to artificial intelligence (AI) which aims to simulate human thought processes, using algorithms and vast amounts of unstructured data.

Cohort: A group of people who have something in common (e.g. having dementia or being a certain age). Researchers often follow cohorts over time (e.g. in longitudinal studies).

Compassion: Deep awareness of the suffering of others coupled with the wish to relieve the suffering. Compassion is also closely related to caring about other people/ others

Confidentiality: Keeping information we have learned in confidence secure and private; not sharing it with other people without permission.

Conscience: Our personal, “inner judge” or moral sense of what is right and wrong.

Consent (under the GDPR): The definition of consent under the GDPR is: “Any freely given, specific, informed and unambiguous indication of the data subject’s wishes by which they, by a statement or by a clear affirmative action, signify agreement to the processing of personal data relating to them”.

Continuum: A range or series of things that are slightly different from each other and that exist between two different possibilities/extremes (e.g. between being underweight and overweight, between hypotension and hypertension.

Contralateral: Opposite side, a word widely used in neurology as the pathways leading to motor actions and sensory perception (heat, pain, etc.) are crossed.

Control Group: a group of participants in an experimental study that receives either no treatment or a different treatment from another group (known as the experimental group). Their results can then be compared to those of the other group.

Corticobasal degeneration (CBD): A rare, progressive neurodegenerative disease. It was first identified in 1968. The disease typically starts between ages 60 and 70. CBD is a complex disease with a wide variety of symptoms and signs.

Cross-sectional: A cross-sectional study is a type of study that analyses data collected from a group of people at a specific point in time, rather than over a period of time. Cross-sectional studies are often used to estimate the prevalence of a health condition, or to examine the link between two different variables/things (e.g. the relationship between socio-economic status and cardiovascular health) at a specific point in time.

Cross-sectional data: This term refers to data that has been collected from many people at a single/specific moment in time.

CRPD: Abbreviation for the United Nations Convention on the Rights of Persons with Disabilities (sometimes referred to as UN CRPD), which came into force in 2006. The provisions of the CRPD also apply to people with dementia.

CSF: Cerebrospinal fluid (a body fluid found around the brain and the spine).

Cultural awareness: Knowledge about different cultures (e.g. different religions, traditions, common beliefs and preferences, history and shared values).

Cultural competence: Knowledge combined with appropriate attitudes and skills (e.g. openness, respect, awareness of one’s own background, readiness to question one’s own assumptions, ability to communicate with people from different cultures and readiness to use external help when needed).

Cultural sensitivity: Acknowledging cultural differences and similarities between people without assigning them a value (e.g. of good or bad, right or wrong).

DALY: Disability-adjusted life year. The disability-adjusted life year is a societal measure of the disease or disability burden in populations.

DaT scan: DaT stands for Dopamine Transporter and this is a kind of imaging scan that uses a radioactive tracer and a special camera to help doctors diagnose certain conditions such as Parkinson's disease (PD).

Data: Measurements or observations that convey information, and that can be computed, analysed and shared. There are many different types of data, for example: temperatures, blood pressure measurements, names, and brain scan images. Data may be qualitative, meaning that it is descriptive and conveyed in words and paragraphs. Data can also be quantitative, meaning that it is based on numbers, which can be counted, measured and calculated.

Data cleaning: a process which involves removing unqualified, biased or incomplete responses from a survey so as to improve the quality of the data and protect against bias.

Data controller: A person, authority, organisation or entity that solely or jointly determines how data will be processed.

Data discovery: The act of browsing and locating available data related to a specific purpose, such as answering a particular research question.

Data mining: Drawing on the analogy of mining (e.g. digging deep for something precious), data mining describes the process of closely examining data to identify patterns and gain valuable insight.

Data processing: Any operations that are performed on personal data or on sets of personal data, for example collection, organisation, storage, alteration, consultation, use or destruction.

Data processor: A person, authority, organisation or entity that processes data on behalf of a data controller.

Data protection: Data protection is the process of safeguarding data from corruption, mis-use or loss.

Data protection authorities: In the EU, data protection authorities are national supervisory authorities charged with assessing GDPR compliance of various entities under their jurisdiction and, in the event of infringements, issuing fines.

Data repository: A place where data is collected and stored in a computerised, digital format. Data repositories are sometimes called data libraries, or data archives. Data repositories are often used by researchers to deposit data so they can preserve, publish or share them.

Data set: A data set consists of a collection of linked but independent data that can be called up and processed either individually or together. Each set is organised in a specific data structure (e.g. in a table in columns). A standard data set can contain, among other things, information about a patient or research participant.

Data sharing: The process of making existing data resources accessible and available to others.

Data subject: An individual who can be identified, directly or indirectly, through reference to personal data about them.

Data subject rights: Under the GDPR, data subjects may have a number of legal rights designed to give them more control over their personal data. These include rights: 1) the right to be informed, 2) the right of access; 3) the right to rectification; and 4) the right to be forgotten.

Data Transfer Agreement: A legal agreement or contract that governs the transfer of data from one person or organisation, to another or multiple persons or organisations. Data Transfer Agreements (sometimes abbreviated to DTA) explain the terms and conditions, rights and obligations for the signatories.

Deep Learning: Deep Learning (DL) is part of a broader family of machine learning methods based on artificial neural networks (ANNs) which take inspiration from the structure of the human brain. It layers algorithms and computing units into ANNs and can improve incorrect outcomes through repetition The increase in computer power has allowed the size of the data processed and the number of layers of a neural network to be increased, resulting in a deeper level of “learning”.

Delirium: Perceptual disorder of a systematic nature in which the patient interprets the information that reaches him/her in an erroneous manner.

Dementia: A syndrome (i.e. a set of symptoms which typically occur together) including loss of memory, mood changes, and problems with communication and reasoning. There are many causes of dementia, the most common being Alzheimer’s disease and vascular dementia. Dementia is a progressive condition. This means that symptoms become more severe over time and that people with dementia typically need support and eventually care as their dementia advances. Not all difficulties that people face are directly linked to the disease.

Dementia with Lewy bodies (DLB): This is a progressive brain disorder which involves abnormal protein clumps (known as Lewy bodies) forming in brain cells. This affects thinking, movement (parkinsonism), sleep (acting out dreams), visual hallucinations and causes significant fluctuations in alertness. Dementia with Lewy bodies is the second most common dementia after Alzheimer's.

Dependent and independent variables: Variables can be quantitative (expressed in numbers e.g. age or height) or qualitative (expressed using words, e.g. eye colour). In research studies looking at causes and effects, variables can be classified as independent or dependent. For example, in a study looking at the effect of a medicine on blood pressure, the “cause” variable (blood pressure medicine) would be known as an independent variable, and the “effect variable (blood pressure) would be known as a dependent variable. Researchers could manipulate the independent variable (e.g. varying amounts of blood pressure medicine) and measure its effect on the dependent variable (blood pressure).

Diagnostic marker: A diagnostic marker (sometimes called a biomarker) is a measurable indicator of the presence, absence, severity or progression of a disease. Diagnostic markers/biomarkers are typically identified through blood tests, genetic tests and imaging. In the context of medical treatment, they can help doctors diagnose, monitor and treat conditions, often quite early in disease processes, before symptoms appear, and may therefore play an important role in personalised medicine.

Dichotomous: Divided into two distinct parts or states (e.g. heads or tails, rich or poor, healthy or sick)

Disability: According to the CRPD (see above) disability “results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others” (Source: CRPD 2006, Preamble e). There are different models of disability. The medical model of disability, which has been widely criticised, views disability as a problem residing in the person, something that is directly caused by disease, trauma, or other health condition which therefore requires sustained medical care provided in the form of individual treatment by professionals (i.e. to fix the disabled person). The social model of disability sees disability predominantly as a socially created problem (i.e. not an attribute of an individual, but rather a complex collection of conditions, many of which are created by the social environment). Hence, the management of the problem requires social action and is the collective responsibility of society at large to make the environmental modifications necessary for the full participation of people with disabilities in all areas of social life (see the CRPD for more information).

Disabled person: It is sometimes assumed that it is more respectful to refer to someone as a person with disability but many people (with disabilities) prefer the term “disabled person” because it emphasises that they do not “possess” a disability but are disabled by society (including people, structures, environments and attitudes). Both terms are acceptable but it is important to respect people’s preferences if known.

Discernment: Being able to judge well and make sound judgements without being influenced by personal attachments and external factors.

Discourse: How we think and communicate about people, things and the social organisation of society, as well as the relationships between these. Discourse refers to a conversation or exchange of ideas between two or more people. Discourse affects language, thought and various structures that shape our lives and relationships in society. __ Disease markers:__ A term used by physicians to refer to signs or data that characterise a disease, whether anatomical, clinical, biochemical, radiological or other.

DL: Deep learning

DLB: Dementia with Lewy bodies

DNA: This stands for deoxyribonucleic acid. DNA contains our hereditary material and our genes. It is like a set of instructions for the development, functioning, growth and reproduction of all known organisms. There are different letters in some other languages. In German, for example, it is DNS and in French, it is ADN.

DOI: Digital Object Identifier (a unique and permanent identifier consisting of a string of numbers, letters and symbols, assigned to online works). This can often be found at the end of references to articles in scientific journals. It can be copied and pasted as a search term on the Internet instead of typing in the title of an article.

Dopamine: A chemical used by some neurons to connect with each other. Neurons in the substantia nigra emit long extensions (axons) to connect and communicate with the striatal nuclei using dopamine. In people with Parkinson's the main deficit is dopamine, due to the death of the neurons that produce it, but other neurotransmitters such as serotonin, noradrenaline and acetylcholine are also missing.

Dopamine agonists: Drugs that act directly on dopamine receptors.

Dopaminergic receptor: A small portion (molecule) of the neuron that is sensitive to stimulation by dopamine or other neurotransmitters sent by another neuron to transmit information.

Double-blind: Double-blind in the context of clinical trials means that neither the participants nor the researchers know who is receiving a particular treatment/drug.

DSM-V: The fifth edition of the Diagnostic and Statistical Manual of Mental Diseases which is the standard classification of mental diseases used mainly by mental health professionals in the United States of America.

Dysarthria: Speech articulation disorder. Can be caused by a number of neurological problems, including Parkinson's disease. Speech is weakly articulated, uncoordinated or poorly vocalised.

Dyskinesia: From the Greek, dis (altered) and kinetos (movement). In neurology it is applied to designate excessive or altered movements of one or more parts of the body. Most of them are caused by the use of Levodopa for years, but they can also occur after the use of drugs that block dopaminergic receptors (neuroleptics, some antiemetics, etc.).

Dysphagia: Swallowing disorder. Swallowing is considered safe when no liquid, food or saliva is diverted into the airway and is completed within a few seconds. Parkinson's disease can affect both of these features of swallowing: the conduction of food or liquid through the appropriate anatomical pathway and the speed of swallowing.

Dystonia: Neurologically caused sustained contractions of muscles in one or more parts of the body. This often results in twisting or writhing of the affected parts.

Electronic Health Record: An Electronic Health Record (sometimes abbreviated to EHR) is a computerised, digital version of a person’s health record. It gathers together health information and data about an individual, such as age, gender, health history, medicines, electronic medical schedules, doctors letters and reports and other medical details. It may be consulted, managed and shared by the different healthcare providers that are involved in caring for the person in question. The person in question can also access their own patient file (e.g. via a QR code or a defined website combined with their own username and personal password).

Electrophysiology: Electrophysiology (EP) is the study of electrical properties and activities in biological cells and tissues, particularly neurons and heart muscle. This can help doctors and researchers understand or diagnose heart rhythm disorders (arrhythmias) and understand brain function.

Eligibility criteria: Rules/criteria, usually in the form of a list, used by researchers to decide which people to include or exclude from a study.

End-of-dose impairment: Loss of effect of Levodopa.

Epidemiology: The science that studies the prevalence (number of cases in a population) and incidence (number of cases occurring in a year) of a disease in a population and incidence (number of cases occurring in a year) of a disease in the population in different countries and human groups, as well as the impact of the factors that modify these data. et al. : Stands for “and others”. Often used when referencing authors of research articles in the main text of published articles (e.g. Jones et al. instead of Jones, Patel, Kurz and Finkel)

Ethics: Well-based standards of right and wrong that prescribe what humans ought to do, moral principles that people live by usually in terms of rights of others, obligations, benefits to society, fairness in day-to-day life, or specific virtues. Not necessarily about big societal issues or life and death situations but about everything that affects our daily lives.

Ethics approval: Researchers are obliged to obtain ethics approval from universities and/or external research ethics committees for all research involving human participants. The aim of this approval is to protect both the researchers and the participants from potential harm and to ensure that their dignity, rights, safety and welfare respected. To obtain ethics approval, researchers have to present a plan of their research in advance to an ethics committee which decides whether or not they can conduct such research. Sometimes, the committee insists on certain changes being made.

Ethnicity: A shared culture, often incorporating a common language, geographic locale or place of origin, religion, sense of history, traditions, values, beliefs and food habits.

Explainable AI/Explainability: Depending on the AI approach taken, it can be possible for humans to understand and explain how an AI system arrived at a particular decision or prediction, but in some cases, this is less transparent or not possible. Explainable AI means that the performance of its algorithms can be trusted and easily understood by humans as the logic behind the reasoning and results is transparent.

External validity: The extent to which the results of a study are generalisable or transferable.

Faeces: This is the solid or semisolid remains of food that could not be digested or absorbed in the small intestine of humans. It is broken down by bacteria in the large intestine and eliminated from the body (sometimes called stool or “poo”).

FAIR acronym: The FAIR acronym stands for “Findable, Accessible, Interoperable, Reusable”. FAIR data are data that are easy to find, access and re-use, and are interoperable. Interoperable means that data can be exchanged, used and combined across different digital systems or databases. Data should therefore be prepared in such a way that people and machines can find, retrieve, link and reuse it.

False negative: A research or medical finding which suggests that a person doesn’t have something that they do have. An example of a false negative would be the claim that people don’t have dementia when in fact they do.

False positive: A research or medical finding which suggests that a person has something that they don’t have. An example of a false positive would be the claim that people have dementia when in fact they don’t.

Familism: Putting family first i.e. putting family relationships, values and demands before personal interests.

Federated database: Federated databases allow multiple data sources to be connected and accessed in parallel. In these systems, data remain in their original source location (e.g. a hospital database) but can be viewed and accessed via a single interface.

Frontotemporal dementia: Frontotemporal dementia (FTD) is a rare, progressive brain disorder involving the loss of nerve cells in the frontal and temporal lobes of the brain. It is often diagnosed in people aged between 45 and 65 and leads to significant changes in personality, behaviour, language and movement. Common symptoms include inappropriate social behaviour, apathy, loss of empathy, impaired judgement and difficulties with language (speaking, writing and understanding words). It is also an umbrella term for several related conditions.

GDPR: The General Data Protection Regulation is an EU law that came into force in May 2018, and regulates processing of personal data across all Member States, and for all EU residents and citizens.

Gender Identity: An individual’s personal understanding and experience of their gender and how they feel inside. This may match the sex attributed at birth (as in cisgender), but can also differ (e.g. in the case of non-binary or transgender people).

Gender: The social and cultural differences between men, women, boys and girls. This includes gender roles, behaviour, expectations and what is considered appropriate by society. These things vary from society to society and can change over time.

Generative AI (GenAI): This is a type of technology based on AI which generates new content/material (e.g. text, images and videos) by applying patterns detected when analysing large amounts of similar training data.

Hallucination: False visual, auditory, tactile, gustatory, olfactory or any other type of perception of something that does not exist at that precise moment.

Harmonisation: Harmonisation refers to the process of aligning the formats, dimensions and layouts of different data sources so they can be compared and analysed together. For example, researchers may use different rating scales, where 2 = good for one researcher, but 2 = average for another researcher. The process of harmonisation ensures data sources are aligned and comparable.

HD: Huntington’s disease

Hereditary ataxias (HA): Include a wide variety of inherited diseases where the main symptom is ataxia. Ataxia refers to uncoordinated, clumsy movements and walking problems with loss of balance. Changes in certain genes cause HA. In most cases, the disease affects more than one family member. However, sometimes there is no family history at all. In HA, ataxia is usually not the only symptom.

Heteronormativity: The taken-for-granted assumptions that people are heterosexual, cisgender, married or in a stable relationship with one person and have or will have children. It rests on biased, narrow-minded and discriminatory beliefs and attitudes towards LGBTQ+ people and on the belief that these heteronormative characteristics are the default, preferred or normal mode of sexual orientation and gender identity.

Heterosexuality: A romantic or sexual attraction, or sexual behaviour towards/between people of the opposite sex or gender. Sometimes, heterosexual people are referred to as being “straight”.

Hippocampal lesion: Damage in the region of the brain known as the hippocampus, which is one of the first regions to suffer damage in the case of AD pathology and is known to be important for the recollection of new information.

Homogenous: Consisting of parts or people that are similar to each other or are of the same type (e.g. all women, all from the same social class or all men living in a city).

Homosexuality: Being attracted to people of the same sex or gender (see also under “sexual orientation”). The term “homosexual” is sometimes considered offensive as it has a history of being used to pathologise gay and lesbian people.

Humility: Not feeling that you have any special importance that makes you better than anyone else.

Hypomimia: From the Greek hypo (little) and mimia (facial expression, mimicry). It means lack of mimicry or expression in the face and gestures.

Hypophonia: Phonation disorder. The problem lies in the amount of air that passes through the vocal cords causing a low pitch of the voice.

Hypothesis: An assumption/educated prediction about what researchers expect to happen or find in their study. This is usually expressed in the form of a statement which is then tested in the research project.

Hypotonia: Reduced muscle tone, which is maintained by a balanced contraction of agonist and antagonist muscles. Occurs in diseases of the cerebellum.

ICD-10: The tenth edition of the International Classification of Diseases developed by the World Health Organization

Idiopathic: Used in medicine to designate a pathological process or a disease for which we do not know the cause. disease for which we do not know the cause.

iRBD: Isolated REM sleep behaviour disorder

Impulse Control Disorders (ICDs): Are a group of excessive and/or harmful urges and behaviours that may occur in people with Parkinson’s disease (PD). They are characterised by persistent thoughts or uncontrollable urges to do things. They often are a side effect of certain medications. People themselves sometimes do not know that it is a problem. Approximately 10-20% of people with PD may develop ICDs at some point.

Incidence: The number of new cases of people with a specified disease during a specified period in a specified population (e.g. the number of new cases of AD in Poland in 2022).

Independent variable: The characteristic that the researchers manipulate or change in their study or experiment.

Informed consent: This is a process, generally accompanied by the signing of a form. Potential research participants go through this process and sign the consent form before they commit to participating in a particular study. Prior to signing an Informed Consent Form, potential participants receive a Participant Information Sheet and have the opportunity to discuss any questions they may have with the researchers. A signed informed consent form does not release researchers from their duty to continuously monitor participants’ wellbeing and participants can withdraw from a study at any time (i.e. the form does not constitute a legal obligation to participate).

Infusion therapies: These are treatments either through a small needle inserted under the skin or through a tube (catheter) inserted into a person’s small intestine. This provides a continuous flow of drugs throughout the day. Levodopa and apomorphine are two common infusion therapy drugs that address the lack of dopamine in the brain.

Integrity: Strict adherence to a set of consistent moral values and principles; acting in accordance with one’s core beliefs.

Interculturalism: The acceptance and promotion of cultural diversity, reflected in the way that people interact, understand and relate to each other, and through policies and practice which help ensure equal opportunities, respect and fair treatment of people from all ethnic groups.

Interdependency: The way in which people are never fully independent and always rely in some ways on others.

Internal validity: Reflects the extent to which the research design was effective in ensuring that it measured what was intended to be measured.

Interoperable: This means that data can be exchanged, used and combined across different digital systems or databases.

Intersectionality: The interconnected nature of social categorisations such as race, class, and gender whereby these categorisations interact to produce overlapping and interdependent systems of discrimination, disadvantage or privilege. A Black disabled woman, for example, may experience not only more but also a different kind of discrimination than a White disabled woman or a Black man who is not disabled.

Intersex: Refers to people who are born with hormones, chromosomes, anatomy or other characteristics that are neither exclusively male nor female. Intersex people may identify as male, female, intersex or with a non-binary identity.

Justice/equity: The moral obligation to act on the basis of fair adjudication between competing claims. Involves treating people equally and fairly through a fair distribution of benefits, risks and costs. Ensuring that they have the same opportunities and access to goods and services. This is not the same thing as equality because treating everyone equally regardless of their needs may mean that they do not have the same opportunities and access.

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Legal basis: Under the GDPR, the legal basis means the legal justification for the processing of personal data. Examples of GDPR legal bases include consent (e.g. for research) and vital interests (e.g. for delivering healthcare services).

Levodopa: A substance that is converted into dopamine once it reaches the brain.

Lewy bodies: Abnormal clumps of a protein called alpha-synuclein which build up within neurons (nerve cells) in the brain. Associated with the development of neurodegenerative disorders including Parkinson's disease and dementia with Lewy bodies.

LGBQT+: Abbreviation of “lesbian, gay, bisexual, transgender, queer (or sometimes questioning) and other minority sexual orientation and gender groups (apart from heterosexual and cis gender groups )”, typically used as a self-designation and typically covering anyone who does not consider themselves to be heterosexual or whose gender identity does not match the sex that they were assigned at birth. The Q stands for questioning (when a person is exploring their sexuality, gender identity and gender expression) or alternatively for queer (see below). The plus (+) refers to people who are genderqueer, gender fluid, genderless, agender, non-gender, third gender, bi-gender or non-binary.

Longitudinal studies: This is a research study that is conducted over an extended period of time. Researchers note and collect data (including samples sometimes) from the same subjects over several or many years to observe changes in participants, behaviours, or attitudes.

Machine Learning (ML): Machine learning involves computers “learning” on their own from the results of their analysis with varying levels of human intervention. AI devices/systems are fed with data (snippets of information about people) in order to complete a task or make decisions or predictions. The algorithms (the sets of instructions that they use) can improve over time, becoming increasingly accurate in making predictions or classifications. Some are “locked” (i.e. their function does not change) whereas some are “adaptive” (i.e. their behaviour can change over time based on new data).

Majority ethnic group: The group of people sharing the most common ethnicity in a particular country, often believed to be a homogenous group and often considered as being one unified nation consisting of a single ethnic group. Sometimes referred to as ‘native’ or ‘White’ even though these terms are somewhat problematic.

MCI due to AD: Mild cognitive impairment (MCI) due to Alzheimer’s disease is a specific type of MCI. It is considered to be the earliest symptomatic stage of Alzheimer’s disease and is sometimes referred to as prodromal AD. People with MCI due to Alzheimer’s disease often experience very mild changes in their cognitive abilities, such as difficulties with memory, keeping track of conversations, orientation, planning and decision making. These changes may cause concern but do not significantly impact on people’s daily lives.

MCI: This stands for Mild Cognitive Impairment. Mild Cognitive Impairment is often considered as the stage between the expected cognitive decline of normal ageing and the more significant decline of dementia. It may increase a person’s risk of later developing dementia but some people with mild cognitive impairment don’t deteriorate further and some eventually get better. MCI denotes the severity of impairment, and differs from the possible cause of the impairment, that can be AD, or another neurodegenerative disease.

Meta-analysis: The statistical analysis of the results of multiple scientific studies that all answered similar research questions.

Metadata: Metadata are data that provide information about other data, without revealing the data itself. For example, a digital file containing data may have metadata on the source, type and ownership of the data within.

Migrant and immigrant: Unclear concepts with varying definitions. Sometimes defined by foreign birth, foreign citizenship or movement into a new country to stay temporarily or to settle for the long-term. Often associated with ethnic or religious minorities and with asylum seekers and refugees.

Minority ethnic group: A group of people who share a common cultural identity which differs in some way to that of the majority ethnic group in a particular country.

ML: Machine learning

MMSE: Mini-Mental State Exam. The MMSE (sometimes called the Folstein Test) can be used to screen for suspected dementia and can also be used to determine the stage and severity of dementia for someone who has it. It can show changes over time if taken every year or so.

Model: A machine learning model is a mathematical presentation the way a computer processes the input. After a model has “learned” how to deal with a given input correctly, the model will have been tuned to represent how the problem is approached. The modifications made during this training are represented as a set of values (or weights) which make that given version more suitable to the task that the model was trained on. The weight can then be used by the algorithm to analyse text and produce information and/or predictions.

Monotherapy: Treatment with a single substance.

Motor fluctuations or on-off periods: Periods during the day when the person with Parkinson's will be more mobile due to the effect of the medication (on-periods) or, in the case of off-periods, times when the medication has generally stopped working and symptoms worsen.

MRI: This stands for magnetic resonance imaging which is a medical imaging technique that uses a magnetic field and computer-generated radio waves to create detailed images of the organs and tissues in your body.

Multiple System Atrophy (MSA): A rare disorder that affects the functioning of multiple systems in the brain. Some of these are involved in the control of movement, balance and coordination, while others ensure blood pressure, bladder, bowel and sexual function.

Natural language processing (NLP): Predates AI and are a set of methods to extract values from natural language data (text) which can then be used by computers in subsequent calculations and operations to provide utility.

Neural Networks: Neural Networks, sometimes called Artificial Neural Networks, are modelled around the concept of the human brain. They are mathematical systems that actively learn by identifying and analysing statistical patterns within data. This system features multiple layers of artificial neurons, which are computational models inspired by the neurons in our brain. Each layer performs a mathematical operation on the output of the previous layer. The first layer processes the input data whereas the final layer delivers the results, with the layers in between performing a series of mathematical operations on the data to transform the input data to the final output data, based on weights (parameters) defined in a model.

Neurodegenerative disease: A disease which primarily affects neurons (and involves a degeneration of nerve cells)

Neurofibrillary tangles: Twisted fibres of a protein called tau present inside the neurons. The twisted strands of tau interfere with the transportation of nutrients and other essential supplies in the brain and cause cells to die. One of the hallmarks of AD pathology.

Neuroimaging: Methods by which images of the nervous system can be obtained. The most commonly used are CT (computerised axial tomography) and MRI (magnetic resonance imaging).

Neuron: A nerve cell that produces one or more substances called neurotransmitters, by means of which it communicates with other neurons in the nervous system.

Neurons: Also called neurones or nerve cells. Neurons are fundamental units of the brain and nervous system. These cells are responsible for receiving sensory input, sending motor commands to our muscles, and transmitting the electrical signals needed to make this happen.

Neuropathology: The branch of medicine concerned with microscopic study of the tissues affected by diseases of the nervous system (i.e. the brain, spinal cord and peripheral nerves).

Neuropsychiatric assessment: This is a comprehensive evaluation of cognitive abilities, emotional, and behavioural functions to understand how the brain works, often by means of interviews and tasks (like puzzles, memory tests and problem-solving tasks) to measure strengths and weaknesses in attention, memory, language, thinking and mood. Such assessments can help doctors diagnose conditions (e.g. dementia) and create effective treatment plans.

Neuroscientific: Related to various scientific disciplines dealing with the structure, development, function, chemistry, pharmacology and pathology of the nervous system.

Neurotransmitter: A chemical messenger between neurons, a substance that one neuron sends to another to transmit a message.

NIA-AA: National Institute on Aging and the Alzheimer’s Association (one of the main groups responsible for developing models and definitions of AD).

Node: In AI, a node is a fundamental processing unit or data point within a network or structure, which receives, processes and transmits data. Nodes form the building block of models and graphs, enabling pattern recognition, decision-making and complex analysis.

Non-binary: Refers to people whose gender identity does not exclusively fall into the binary gender classification of either "man" or "woman”. They may identify with either masculinity or femininity in some way, both or neither (i.e. having a neutral androgynous appearance). Non-binary is a gender identity on its own but is sometimes used as an umbrella term for many gender identities.

Non-maleficence: Not doing what might be harmful or hurt somebody.

Overfitting: This term is used in the context of machine learning training to describe the situation whereby an algorithm can only work on examples from the data it was trained on and cannot, therefore, make accurate predictions on the basis of new data. This can be problematic if certain groups are absent from the training data but the system that is developed is used to make predictions for people from that group.

Paradigm: A philosophical and theoretical framework or school of thought with underlying theories, laws, assumptions and generalisations which influence the way we make sense of a particular issue e.g. in the field of dementia, disability, research or psychotherapy. If we think of the phrase “thinking inside the box”, the paradigm might be the box.

Parkinson’s disease: Parkinson's disease (PD) is a movement disorder of the nervous system that worsens over time. It tends to start very gradually with the first symptom often being a barely noticeable tremor in just one hand. Tremors are common in Parkinson's disease but people may also experience stiffness, slowing of movement and trouble with balance that increases the risk of falls.

Parkinsonism: This term is used to describe a condition that “looks like Parkinson’s disease”. To neurologists this means that the person has a somewhat flexed posture, moves slowly, is stiff, may have tremor and usually walks slowly, with small steps and reduced or no arm swing.

Parkinson plus: The term “plus” after Parkinson is used to describe a syndrome that may look like typical Parkinson’s disease, but also includes additional abnormalities that are not usually seen in Parkinson’s disease (e.g. abnormal eye movements, abnormal postures, severe problems with low blood pressure on standing and abnormal reflexes on certain tests)

Participant: This term broadly refers to somebody who takes part in something (e.g. a lottery, a competition or therapy group). In the context of research, it is someone who takes part in research by providing researchers with data for the purpose of scientific analysis. In the past, the term ‘subject’ was more common but nowadays participant is often preferred as it emphasises an active contribution to the scientific process rather than a passive and subordinate role in the research process.

Participant information sheet: This is a document that is given to potential research participants to explain to them what the study is about, why they are being asked to participate, what potential risks and benefits there are and what would be expected of them if they decided to participate. It should be written in a way that is easy for people who are not researchers to understand.

Pathogenesis: Mechanisms by which a disease develops.

Pathological: Caused by or related to a disease.

Pathology: Deviations from what is considered as normal in relation to diseases or biological processes.

Pathophysiological: The effects of disease on physiological processes (i.e. on the functioning of organisms).

PD: Parkinson’s disease

Personal data: Any information that relates to a living, identified or identifiable person. Examples include names, phone numbers, physical characteristics or location data.

Personhood: What makes a person (i.e. a member of the human species) unique and determines who they are and their individual interests.

PET-Amyloid: This stands for amyloid positron emission tomography (PET) imaging. It is an imaging procedure (also known as a scan) that enables the detection of amyloid deposition (one of the hallmarks of Alzheimer’s disease) in people’s brains. This is just one of a number of different imaging procedures available for investigating different types of dementias.

Physiopathology: Relating to biological and physical manifestations of disease related to underlying abnormalities and physiological disturbances. About processes within the body that result in the signs and symptoms of a disease.

Placebo: A substance or tablet that has no therapeutic effect, which is used as a control in clinical trials for new drugs. Having a group of people who take a placebo enables researchers to determine whether there is any benefit to taking the new drug. Sometimes, instead of a placebo, researchers compare the experimental treatment with an existing treatment.

Plasma: The largest single component of blood, making up about 55% of total blood volume. It is a clear, straw-coloured liquid, which carries platelets, red and white blood cells around the body.

Post mortem: Latin for “after death”

Postural instability: When balance and coordination are affected and often cause people with Parkinson's to lean forward or backward and fall easily.

Preclinical Alzheimer’s disease: In the preclinical stage of Alzheimer’s disease, amyloid plaques and tau tangles start accumulating in the brain. However, there are no outward signs of disease and these changes can only be detected using brain imaging scans or biomarker tests, which are not yet routinely used in clinical practice. The preclinical stage of Alzheimer’s disease can last many years, or even decades.

Predictive analytics: Predictive analytics uses technology to predict what will happen in a specific time frame based on historical data and patterns.

Premorbid: Anything that occurs before a disease manifests itself.

Pre-symptomatic AD: This is a sub-group of preclinical AD which includes people who carry a dominant genetic variant of AD which makes it almost certain that they will develop AD dementia. Most people with preclinical Alzheimer’s disease, however, fall into the asymptomatic/at risk group and there is no certainty that they will develop Alzheimer’s dementia.

Prevalence: The number of cases of a disease that are present in a particular population at a given time (e.g. in 2022, over 800,00 people had dementia in the UK, old and new cases combined).

Principal or Primary Investigator (PI): The person who is responsible for the preparation, conduct, and administration of a research grant for a research project.

Privacy: Freedom from unauthorised intrusion or observation.

Prodromal AD: In the context of the new AD definitions, this corresponds to the early symptomatic, pre-dementia phase of AD during which clinical symptoms are present but not severe enough to affect activities of daily life and are associated with specific biomarker changes. This term was coined by the IWG.

Progressive Supranuclear Palsy (PSP): The most common type of Atypical Parkinsonism, but it is only about one tenth as common as Parkinson’s disease. Atypical parkinsonism, also called Parkinson-plus syndrome, is when the patient has parkinsonism plus other features including early balance problems/falling, poor reaction to the drug levodopa, early cognitive problems, and impaired control of blood pressure/bowel/bladder.

Prolonged-release formulations: Drug preparations (e.g. Levodopa) that are absorbed slowly in the digestive tract after each dose.

Prospective study: A study in which the health or other characteristic of people (the research participants) are recorded as they happen and monitored over a set period of time.

Protocol (or research protocol): A detailed plan describing how the research will be done (e.g. what question will be asked, how information will be collected, from whom and how it will be analysed.

Pseudonym: A number or name with no meaning that is used by some authors and in the context of research (instead of information relating to a particular person such as their name or email address) so that it is impossible to see who the information relates to.

Pseudonymisation: The processing of personal data in such a manner that the personal data can no longer be attributed to a specific individual, without the use of additional information. Frequently used in clinical research, for example by using a coding system to attribute a numbered identifier to an individual and their data.

PSP: Progressive supranuclear palsy

Public discourse: Anything written, spoken, televised or heard via some media. A way to achieve mutual understanding through a rational exchange of arguments within the public sphere/domain.

Public Engagement (PE): Raising awareness or providing information about ongoing or completed research or about a particular research topic (e.g. about artificial intelligence or risk prediction).

Public Involvement (PI): Involving lay people in research not as research participants but as advisors (carrying out research and developing policies with or by members of the public rather than on or for them. PI is not the same as public engagement or as being a research participant. Rather, it is about creating a partnership between researchers and the public/patients, whereby all contribute collaboratively in varying degrees towards the research process or the research output.

Qualitative research: This research focuses on non-numerical (descriptive) data. Qualitative studies concentrate mainly on words and meanings and aim to capture the richness and complexity of human experience and to understand complex phenomena by means of focus group discussions, interviews and observation. Researchers try, for example, to gain insight into people’s attitudes, beliefs, motivations and underlying reasons for behaviour. They try to capture people’s social reality and what is meaningful to them.

Quantitative research: This type of research involves recording information obtained from participants in numerical form so as to enable statistical analysis of the findings and the generalisation of those findings to the wider population. Various procedures are used to measure or convert what people think, feel or do into numbers so as to make the statistical analysis possible. Researchers typically look for patterns and averages, make predictions and test causal relationships.

Queer: A broad term, which is used to described gender identities and sexual orientations that do not fall within the heteronormative assumptions of being heterosexual and cisgender. It is sometimes used to describe nonbinary gender identities, sometimes to describe homosexuality or bisexuality and sometimes used to describe the whole LGBQT+ community”. The term is quite controversial. Whilst some people identify as queer or don’t object to the term being used, others find it offensive because in the past, it was often used as a slur against gay men. To some extent, the term has been reclaimed in much the same way as “Black” has been (i.e. “Black” went from being considered offensive, and thus replaced by “coloured”, back to being considered a respectful way to refer to Black people, with ”coloured” now generally being considered offensive).

Race: A contested concept reflecting the categorisation of groups of people into sub-groups on the basis of alleged biological differences (including visible physical traits or characteristics as well as behaviours), which it is claimed have been passed down from generation to generation through people’s genes. The term is still commonly used in the United States of America.

Racial discrimination: Discrimination on the basis of the belief that there are different races and that some are inferior compared to others. The term would also extend to discrimination against different ethnic groups, regardless of whether the perpetrators believe that the members of those groups are biologically or genetically different to people from other ethnic groups (i.e. the group might be defined on the basis of shared linguistic or other cultural characteristics).

Randomised-controlled trial (RCT): A controlled experiment/study in which people are allocated (by chance alone) to receive one of several clinical interventions, one of which is the placebo (sometimes called the sugar pill), standard practice or simply no intervention. Differences between the results from the different groups are statistically analysed

Real-world data: Real-world data (sometimes abbreviated to RWD) are data relating to health status of an individual, collected during the delivery of routine health care by a variety of healthcare practitioners and organisations.

Relationality: The importance of trusting relationships. The way we experience ourselves in relation to others.

Research participant (or research subject): A person who voluntarily participates in a research project (after having given informed consent) by providing researchers with data or samples.

Research question: A research hypothesis expressed in the form of a question.

Research: A general term that covers all kinds of studies designed to find responses to worthwhile questions by means of a systematic and scientific approach.

Responsible AI: This term describes AI that has been developed in a way that reflects responsible and ethical reflection and choices about how it would be used in the real world (e.g. in relation to transparency, trustworthiness, fairness and sustainability). This could also include the responsible selection of training data to avoid bias.

Restless legs syndrome (RLS): A condition of the nervous system that causes an irresistible urge to move the legs. People with RLS may describe a sensation of stinging, burning, creeping and/or painful tension deep within their legs. RLS symptoms worsen in the evening and at night time, which may lead to sleep problems. Symptoms can also occur during the day, especially after sitting for a long time. RLS symptoms are often on one side, but may shift from side to side or affect both sides at the same time. Between five and 10% of the population is affected. RLS is even more common in older people.

Saliva: Saliva (sometimes called “spit”) is a fluid substance produced and secreted by salivary glands in the mouth. It is around 99% water.

SCD: Subjective cognitive decline. A self-reported worsening of memory or thinking abilities that standard medical tests cannot detect.

Secondary use of data: The use of data for a different purpose from that for which it was originally collected.

Semi-structured data: Semi-structured data is only partly structured (e.g. there may be some structure to it, but it contains elements that do not have any structure to them, such as free text elements).

Sensitive personal data: Under the GDPR, data that reveals a person’s ethnic origin, political opinions, religious beliefs, trade union membership, sexual orientation or health status. Sensitive personal data requires additional security and processing measures to safeguard against corruption, mis-use or loss.

Serum: An amber-coloured, protein-rich liquid which separates out when blood coagulates (transforms into a semi-solid or solid state)

Sex: This term is used to describe the biological characteristics that define humans as female or male. These characteristics include hormones, chromosomes and internal and external sexual organs. Sex is also used as an abbreviation for sexual intercourse.

Sexual orientation: Romantic or sexual attraction (or lack thereof) towards others. This can include heterosexuality (being attracted to the opposite sex), bisexuality (being attracted to both males, females and/or other genders), homosexuality or gay/lesbian (being attracted to people of the same sex), asexuality (the lack of or low sexual desire) and pansexuality (being attracted to people regardless of their gender), as well as other sexual orientations.

Sexuality: A central aspect of being human throughout life and encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and reproduction.

Socially salient: A particular attribute (e.g. having AD, having ginger hair or being blond, being unemployed etc.) that is considered by some people as being socially meaningful (i.e. it matters socially and may therefore affect how people with that attribute are considered and treated by others).

Speech analytics: This is a form of technology that uses AI to understand, process and analyse human speech (e.g. in the context of healthcare, research and sales).

Statistical significance: The probability that the observed effect or result was caused by something other than mere chance. This is not the same thing as “importance” because statistical significance does not tell you anything about how important or meaningful the results are.

Stiffness: A symptom of Parkinson's disease in which the muscles appear stiff and show resistance to movement, even when another person tries to move the affected part of the body, such as an arm.

Stigmatisation: When a person or group is devalued and discriminated against on the basis of a shared characteristic or attribute (e.g. being divorced, having dementia or having a criminal record) that is considered in some societies as socially salient (see above). The process of stigmatization also involves negative stereotyping, thinking about people with the shared attribute as being a group apart (i.e. “other” in the sense of “them” not “us”) and feeling pity, anger or fear in relation to them.

Stool: This is the solid or semisolid remains of food that could not be digested or absorbed in the small intestine of humans. It is broken down by bacteria in the large intestine and eliminated from the body (sometimes called faeces or “poo”).

Structured data: Structured data is usually formatted and has a well-defined structure. It follows a consistent order and can be easily accessed and used by a person or a computer program. It is often stored in databases, is searchable and is easier to analyse than unstructured data.

Substantia nigra: A small area located in the midbrain (upper part of the brain stem) that is so called because of its dark colour.

Supervised learning: Supervised learning is a machine learning model/process where one or more parts of the learning process are overseen by a human. Supervised learning uses pre-labelled known outcomes (e.g. a diagnosis of dementia) from training data to train the algorithms. The algorithms detect features (e.g. age, lab results or history of depression) which are most predictive of the selected outcomes. The algorithms can then learn to associate features from new data with a specific labelled outcome. Predictions are fairly accurate and relatively easy to explain. However, it takes time and effort to label the data appropriately. For example, for AI to learn to identify a cat in a photo, humans would need to label thousands of images as cat or not cat but then the resulting model would be able to recognise cats and make accurate predictions.

Syndrome: A disease or condition that involves a particular group of signs and symptoms OR a group of symptoms that together are characteristic of a specific disease or disease.

Syntax: This term is used to describe the arrangement of words and phrases in a specific order to create meaning in language. Changing the position of one word can change the context and meaning of a phrase or sentence.

Tau: Tau is a protein that is naturally produced by our cells. It keeps brain cells healthy and helps them function properly. However, when it misfolds and forms clumps, it results in the formation of tangles which are typically seen in people who have Alzheimer’s disease.

Tau PET: PET stands for Positron Emission Tomography. Tau PET is an advanced brain imaging technique that uses radioactive tracers to visualise abnormal tau protein tangles. It offers better insight than traditional MRI or amyloid PET scans alone for some forms of dementia. It can help doctors to diagnose and stage neurodegenerative diseases like Alzheimer's by enabling them to see where there is an accumulation of tau and how this relates to cognitive decline experienced by their patients.

The right to be forgotten: A term used in the GDPR which means the right for individuals to have their personal data erased. For more information, please see: https://gdpr-info.eu/art-17-gdpr/

Traceability: Refers to the ability to track the origin, movement and uses of data across digital systems.

Training data: AI works by identifying and analysing patterns in large amounts of data. The data that is initially used to enable the AI system to find such patterns and create new input is called the training data.

Training set: A training set is sample data (which may be pre-tagged) that is fed to a machine learning algorithm to enable it to learn about a problem and find patterns so as to produce a model that can recognise the same patterns in future analyses. It depends on the type of machine learning being used. To train the model the training data will be divided into a portion to train the model (the training set) and a separate portion to validate the training result (the test set.

Transgender/trans: Refers to people whose gender identity is different from the sex they were given at birth. People who have transitioned (see below) do not necessarily identify their gender as trans. They may see their gender identity as a man or woman or have a non-binary gender identity.

Treatment arm/group: The participants in a study that receive whatever is being investigated (e.g. an experimental drug) as opposed to the participants that do not.

Tremor: Shaking, often of one hand, which in Parkinson's disease is usually most apparent when the affected part is at rest.

Trustworthiness: The state of deserving confidence/trust.

Truthfulness/fidelity: Telling the truth/being true.

Unstructured data: Data that is classed as unstructured is not organised in any particular way and has no rigid structure. However, it is often more representative of the real world than structured data. In order to analyse such data, some kind of structure is typically needed.

Unsupervised learning: Unsupervised learning models use algorithms to discover hidden patterns in unlabelled data (i.e. without pre-existing labels) to reach a desired outcome.

Urine: Urine (sometimes called “pee”) is a liquid produced by the kidneys to remove waste products from the bloodstream. It is stored in the bladder.

Variable: In research, a variable is a characteristic, process, entity or attribute that can be measured. Variables can be quantitative (expressed in numbers e.g. age or height) or qualitative (expressed using words, e.g. eye colour). In research studies looking at causes and effects, variables can be classified as independent or dependent. For example, in a study looking at the effect of a medicine on blood pressure, the “cause” variable (blood pressure medicine) would be known as an independent variable, and the “effect variable (blood pressure) would be known as a dependent variable. Researchers could manipulate the independent variable (e.g. varying amounts of blood pressure medicine) and measure its effect on the dependent variable (blood pressure).

Virtue: An inner disposition which enables a person to live well or flourish as a human being.

Vulnerability: Being in need of special care and protection especially in situations where one’s rights and needs might not be respected. Should not be applied to people with dementia in a blanket fashion. Some people with dementia might often experience fear or distress – while these may not always be due to a real external threat, they can also contribute to feelings of ‘vulnerability’.

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