How do you measure pain in a person with dementia?

The role of observation in the well-being of people with dementia.

The presence of pain in older people with geriatric syndromes is frequent, usually related to osteoarticular changes (arthritis, osteoarthritis, osteoporosis) and other chronic pathologies. Coinciding with the commemoration of World Day Against Pain, we would like to share some reflections about a phenomenon as complex as a determinant in the well-being of people, and especially for those who have more difficulty verbalizing this type of situation: people with dementia.

As can be imagined, inadequate pain management will have a great impact on the functional capacity, both at the behavioral and emotional level, of the person, translating into higher levels of anxiety or depression for those who live with this circumstance, and increasing the caregiver's overload, factors that will logically result in a worsening of the quality of life for both the person receiving care and the caregiver.

Pain has a sensory and emotional component, modulated by multiple physical, cognitive, emotional, cultural or environmental factors. We do not have a kind of "pain meter" for each of these aspects, so the most natural approach is through a clinical interview, which in cases where the person has communication problems, as is the case with dementia, makes assessment a real challenge.

The perception of pain: a complex and subjective phenomenon

The main factors that change the pain threshold include: sleep, comprehension, level of participation, mood and degree of social interaction, all of which can be altered by dementia.

Furthermore, according to the scientific literature, the presence of pain in advanced ages can present a high variability depending on the healthcare resource in which we are located. Thus, in the case of the residential population the figures suggest that this phenomenon would reach 50-60% of residents without dementia and 25% of those with dementia, of which approximately 40% would not be well controlled.

The nature of the caregiver may also influence the appreciation and assessment of this circumstance. Thus, in general, in formal carers (doctors, nurses) this pain threshold tends to increase, with a risk of under-treatment, while in informal or family care the opposite happens, the pain threshold decreases and the risk of over-treatment increases, especially if the older person has presented disabling pain episodes throughout his/her life.

When we talk about pain, the type of dementia is another element to take into account. Thus, in Alzheimer's disease and Lewy body disease the pain threshold is not altered, increasing tolerance to the pain-generating stimulus, whereas in vascular and frontotemporal dementia changes in the affective (emotional) component can be seen.

A good example of this differentiated treatment can be seen in how, when faced with the same pathological process, such as a hip fracture, people with dementia use less post-operative analgesia, receiving one third as many morphs as those free of cognitive impairment. This difference in criteria leads us to suspect that people with dementia, due to their difficulty in communicating their demands, may be living with different pain thresholds, which reflects the need to raise the awareness of the professionals who deal with this type of situation.

Observation as a reliable measure of pain in dementia

The assessment of pain in people with dementia should be by means of observation scales (facial and verbal expression, body movements, interactions), for which we have a series of scales such as PACSLAC, DOLOPLUS, NOPPAIN or the most validated of all of them, the PAINAD scale (Pain Assessment in Advanced Dementia). Although this tool has a high level of subjectivity, it allows us to quantify pain and monitor changes after different interventions. In addition, various computer applications have been developed for facial analysis, which, together with certain behavioural indicators, guarantees a certain reliability. With regard to the assessment, it is important to remember the importance of carrying it out at rest and after developing certain physical activity, in order to rule out mechanical influence.

With regard to the interventions we must carry out a continuous balance of benefits and associated risks, since the person with dementia is susceptible to presenting side effects to certain medications such as analgesics (anti-inflammatory, opiate, anticonvulsant) or drug interactions (especially psycho-drugs with opiates or coadjuvants), without all this having a paralysing effect on the evaluator, since not acting perpetuates the pain in a person with a shorter life expectancy.

In the case of controlled pain, a gradual de-escalation of analgesics should be initiated after a reasonable period of time, to identify whether the cause of the pain really persists, because if it is not present there is no point in tolerating any potential side effects. Pain management should be holistic, not only from a pharmacological perspective, but taking advantage of all non-pharmacological interventions that alleviate pain and cover the basic comfort needs of the person (food, hygiene, intestinal rhythm, diuresis, temperature, sleep).

In the advanced stages of dementia, where the objective is palliative and to provide the maximum possible comfort, we should carry out periodic assessment, especially at the end of life, to guarantee the maximum quality of life and death possible.

For all the above reasons, comprehensive geriatric assessment is essential as it helps us to adapt the interventions to the care objectives, establishing a realistic and dynamic consensus with the person and their carers.

In the advanced stages of dementia, where the objective is palliative and to provide the maximum possible comfort, we should carry out periodic assessment, especially at the end of life, to guarantee the maximum quality of life and death possible.

For all the above reasons, comprehensive geriatric assessment is essential as it helps us to adapt the interventions to the care objectives, establishing a realistic and dynamic consensus with the person and their carers.