More reliable pain diagnosis tools needed in people with dementia

More reliable pain diagnosis tools needed in people with dementia

A study conducted by UAB and UNIZAR researchers concludes that a better pain assessment in patients with severe cognitive impairment is possible, using more reliable tools and spending more time with patients, developing standardized guidelines and specific training for professionals.

In cognitive impairment, especially in dementia, alterations in cognitive and emotional brain areas, together with verbal difficulties, make pain assessment and management a challenge for healthcare professionals. Available tools, based on questionnaires and scales for patients to answer, lose utility, whereas a professional observation of some key aspects of their behaviour, such as facial expressions, movements or vocalizations, become essential clues. Better diagnosis of pain in these patients requires, among other factors, faster and easier-to-use observation tools, specific training, and more time spent with each patient.

This has been shown in a study carried out by researchers from the Univesitat Autònoma de Barcelona (UAB) and the University of Zaragoza (UNIZAR) published in Frontiers in Neurology, which has explored the opinion of more than one hundred health professionals on the assessment of pain in people with dementia in Spain and how to improve these diagnoses. The work is the result of two surveys conducted in 2015 and 2017 among medical and nursing staff, physiotherapists and psychologists, in hospitals, nursing homes and day centers, in 16 different autonomous communities.

“In both surveys, we detected concern among professionals on the lack of reliable measuring instruments, guidelines and training on pain assessment for people with dementia, offered by public administrations, as well as the scarce amount of training offered in non-verbal diagnosis tools used with dementia patients. This is aggravated when the disease progresses, as in most cases there are neuropsychiatric symptoms, and the capability to speak is not only compromised but may become non-existent”, says coordinator of the study Lydia Giménez- Llort, psychiatry professor and researcher at the Institut de Neurociències (INc-UAB) and the Mental Health CORE at the UAB.

This study was part of a multidisciplinary research funded by the European Union to set down common criteria and validate optimized observational tools for pain assessment based on already existing ones. The research, carried out between 2001 and 2018, was led by Stephan Lautenbacher, a German psychologist, and Wilco Achterberg, a Dutch geriatrician, and included 16 countries.

“Data obtained in Spain are in line with what we observed in most countries, and show that all EU health professionals are facing the same challenges”, said Patricia Schofield, of Abertay University and Sheffield Hallam University, who coordinated the field study in the United Kingdom, the Netherlands, Germany, Denmark, Belgium, Switzerland and Austria, and whose findings are now being compared to those of Spain in the paper published now. “The study also reflects that facial expression of the patients’ pain, considered one of the key elements of non-verbal communication in observational tools, is also the most valued feature by Spanish professionals, while in Central Europe body movements seem more important for professionals”, adds the researcher, for whom this difference would be due to cultural issues.

Improving pain assessment for a more accurate treatment

Spanish researchers consider it key to improve the assessment of pain in dementia patients, which make up around 40% to 80% of people in nursing homes, so that they can receive more accurate treatments.

“In some cases, the presence of pain aggravates the manifestation of behavioural disorders, such as agitation, which are treated with antipsychotic drugs. If the pain is underdiagnosed, it is more likely to be undertreated and the pharmacological management of the disease is not optimized”, adds María Luisa Bernal, professor of pharmacology at UNIZAR and the Aragonese Institute of Health (IIS Aragón).

A new observational tool

From the results obtained by these international studies, a new measurement scale wasdeveloped at European level in 2018. It includes the assessment items that professionals consider most useful, and is already available for use. The PAIC 15 (Pain Assessment Impairment Cognition) scale contains a total of 15 behaviour descriptors, distributed in groups of facial expressions, body movements, and vocalizations, including frowning and narrowing of eyes, restlessness, alertness, moaning or yelling.

Among the list of actions to be implemented, the development of manuals with standardized guidelines and recommendations is included, as well as training actions, so that pain in patients with dementia can no longer be underestimated.

“Efforts to establish more viable instruments and policies, along with education to improve the diagnosis and treatment of pain in these patients are key goals for the countries that have participated in this EU initiative”, said Antoni Bulbena, head of the Department of Psychiatry and Forensic Medicine at the UAB, who also participated in the study.

Original article: Giménez-Llort, L et al. Pain in Older Adults With Dementia: A Survey in Spain. Front. Neurol. (2020) https://doi.org/10.3389/fneur.2020.592366

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