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Cognitive Deficits: How to Recognize Pain in Dementia

SUPPLEMENT: Pain Therapy Perspectives

Dtsch Arztebl 2014; 111 (41): [4]

In principle, self-disclosure is also very important for people with cognitive deficits. In the case of patients who are no longer able to communicate, behavioral problems should be interpreted by experienced observers as a sign of pain.

Obviously, obtaining information (anamnesis) about possible pain in older people - especially those with dementia - is more time-consuming than in younger people. However, this should not lead to the initiation of potentially dangerous therapies on the basis of vague assumptions or to lapse into diagnostic and therapeutic nihilism.

Pain, although an abstract term, is experienced by many people, including those with severe dementia, and its meaning is correctly understood. But they often have difficulty expressing this pain. The reasons for this are:

Due to illness:

  • impaired (short-term) memory
  • Communication problems
  • Vigilance impairment

Attitude to pain:

  • as a natural consequence of aging
  • as a metaphor for a serious illness or imminent death that is suppressed
  • as atonement for past deeds
  • as own weakness
  • as a positive challenge

Fear of:

  • invasive diagnostics and therapy
  • Loss of control
  • Side effects of therapy
  • Addiction
  • Lack of time for the providers.

By actively and sensitively approaching caregivers and medical staff, all the necessary information can often be learned through personal and third-party anamnesis, if the pain assessment is adapted to the linguistic, sensory and cognitive conditions of the person concerned. The simplest form of recording pain are questions that can be answered with “yes” or “no”, which relate to the current situation and which are asked in the familiar language of the patient. If you consciously ask these questions both in a resting and during an activity situation, you can get additional information about the movement dependence of the pain.

The Verbal Descriptor Scale (VDS) is most suitable for obtaining information on the intensity of pain in patients with dementia syndrome. However, questions about pain in the last few days or in the last few weeks should be avoided, as short-term memory deficits are considered a cardinal symptom of dementia syndrome. The difficult differentiation of average, maximum or minimum pain level is usually difficult even for older people - with no or only minor cognitive impairments.

Taking these points into account, you can get valid information about your current pain situation even from people with moderate dementia who are still able to communicate.

With increasing cognitive impairment and reduced communication skills, behavior monitoring by caring relatives, trained nurses, therapists and doctors becomes more important. An exclusive third-party assessment, which is not based on valid observation criteria, should only be used in exceptional cases (example: information from relatives about the previous pain progression at first contact).

The challenge in this situation is that stimuli, which are usually also communicated as painful, in patients suffering from dementia and can no longer communicate adequately, only result in behavioral problems that observers have to interpret as pain. The observation from experimental pain research helps here that, at least in milder stages of dementia, the frequency of behavioral abnormalities tends to increase compared to cognitively competent people.

Individual findings suggest that this phenomenon can no longer be observed in people with very advanced dementia. There are now many suggestions for recording pain in such patients, especially in English-speaking countries. As far as the author is aware, four instruments are currently of importance for the German-speaking area.

These observation scales aim more at the emotional pain behavior (emotional reaction to pain stimuli) than at the sensory dimension (intensity). Even in people with dementia who are capable of providing information, the use of an external observation instrument can draw attention to pain, although the verbal statement suggests otherwise.

The behavior to painful stimuli is certainly modulated by the severity and etiology of the dementia and of course by the (still) existing functional abilities.

It is also currently not possible to conclusively answer which scale should be preferred in which situation and in which form of dementia. The lack of a comparative gold standard (self-reported) means that each scale can be questioned as to whether it actually measures pain. Most of the findings are in patients with Alzheimer's disease. A worldwide project under European leadership (COST TD1005) is currently trying to develop an optimized observation instrument for recognizing pain (2).

Assessment of pain in dementia (BESD scale): The basis for the BESD scale is the American PAINAD scale (Pain Assessment in Advanced Dementia) (3). The usual quality criteria were checked in several steps in people with moderate and severe dementia in nursing homes and in geriatric hospital departments, also in Germany. The validity of this scale has so far been demonstrated by the fact that the results do not correlate with other behavioral problems (aggressiveness, depression, etc.) and that the score drops after taking analgesics (4). At least one study suggests whether the BESD scale can also be used to individually grade the severity of the pain experience (5).

The BESD scale was mainly used for people with dementia who can no longer express themselves verbally or can no longer express themselves specifically. In order to be able to use BESD, it is not absolutely necessary for the observer to know the person concerned and his / her usual behavior. However, some results show that people who have no practical experience in dealing with people with dementia are less likely to observe abnormal behavior.

The BESD scale has been tested in use by trained nurses and geriatric nurses. Significantly worse results are obtained when relatives or people with no knowledge of the subject use the scale.

A total of five behavioral categories can be observed with the BESD scale:

  • breathing
  • negative vocalizations
  • posture
  • Facial expressions and the
  • Patient's response to consolation.

Training materials are now available in the form of video demonstrations of the individual behavioral characteristics (6).

A value between zero and two points can be assigned for each category, with zero standing for none and two for the strongest behavioral reaction. The observers can therefore award a maximum of ten points. The observation should last about two minutes and take place in a clearly defined situation (rest or mobilization).

The observation situation depends on the abilities as well as the usual (nursing) interventions and the daily routine (no special requirements).

A limit value for the presence or the need for treatment of pain cannot yet be given with sufficient reliability. Although a BESD value of two or higher should be assumed to be pain (7). Lukas et al. (5) determined in their study a limit value of 4 from which pain can be assumed. Point prevalence for people with dementia in German nursing homes is 45 percent for moderately cognitively impaired people in the self-assessment and in a stressful situation. If this group is observed with the help of the BESD scale, 49 percent show two or more behavioral problems, ten percent even six or more (8). The following recommendation therefore applies:

  • 0 points: no pain behavior recognizable - pain rather unlikely, but not excluded
  • 1 point: increased awareness of possible causes of pain and other signs of pain
  • from 2 points: pain likely.

A painful experience is very likely

  • when two or more points are observed and a condition is known that is usually associated with pain
  • BESD was rated higher in an activity than in a rest situation
  • pain treatment leads to a reduction in behavior after BESD (treatment attempt;> (9).

The comparison of the severity of the pain experience between two sufferers is not permitted with BESD point values.

Observation instrument for pain assessment in elderly people with dementia (BISAD): Since its development in France in 1992, the scale has been reduced in several steps from eleven to eight categories. With the German-language BISAD scale, people are observed before and during mobilization with four different categories each (at rest: facial expressions, posture, reaction to spontaneous movement, relationship with others; with conscious mobilization: fear, reaction to mobilization, reaction to care the painful region, complaints). On this scale, zero to four points can be awarded for each category. If more than one answer applies, the one with the highest number of points is selected. The number of points can be found behind the respective checkbox. The practicability has so far mainly been proven in nursing homes. It has not yet been tested for people in the outpatient sector or in the hospital. The caregiver must therefore know how the person concerned has behaved in the past few days. This can be particularly difficult after being admitted to the hospital. In the outpatient area, it makes sense to involve relatives. The results of the validity test (10) support the assumption that the BISAD scale has construct validity. The rather weak internal consistency suggests that changes to the scale structure are still required. With regard to the facial expression analysis in this work, it seems reasonable to conclude that facial expressions in severe and severe stages of dementia are less suitable for assessing pain than in early and middle stages.

Unfortunately, there is no fixed evaluation scheme for BISAD. BISAD can therefore only be used individually for each individual patient, for example to evaluate a development in the course or to check the success of a therapy. For the interpretation of BISAD, changes during pain therapy and the presence of potentially painful diseases should be taken into account. Here, too, experiencing pain at zero points cannot be ruled out with certainty.

Doloplus 2 (short): The Doloplus 2 scale was first published in 1992 and has since been modified several times. The original French version has now been translated into German. The longer version comprises ten items, a maximum of 30 points can be achieved. It records the psychomotor and psychosocial effects of pain. In contrast to other surveys (11, 12), an Austrian working group for the German-language version came to the conclusion that the scale is suitable for recording pain and that the assessments of doctors and nurses largely agree. A short version comprising five categories has also been developed. It checks the verbal expression of pain, the gentle posture at rest, protection of painful areas of the body, social activities and behavioral disorders.

Good staff training is a prerequisite for successful use in cognitively impaired patients. The scale appears to be reliable in the course measurement and shows good sensitivity (12).

The Austrian Society for Pain Therapy recommends that the assessment using this scale be carried out jointly by a doctor and a nurse (13). The patient should be known to the staff for a long time, but at least for the past three days.

Zurich Observation Pain Assessment (ZOPA): The ZOPA records pain in four behavioral categories:

  • Utterances
  • Facial expression
  • Body language
  • physiological indicators.

It is known that the vegetative signs of pain such as hypertension and sweating are much less pronounced in people with Alzheimer's disease.

The four categories contain 13 behavioral characteristics that have been precisely defined. Groaning noises, a distorted, tortured facial expression, restlessness or changes in vital signs are, for example, indicators of pain. The authors (14) point out that the instrument only ascertains whether there is pain. It does not weight the behavioral characteristics. Even if several behavioral characteristics are observed, it is not possible to make a statement about the intensity of the pain. There is experience in the field of intensive care medicine. Previous knowledge of the patient is not a prerequisite for using the instrument. ▄

Priv.-Doz. Dr. med. Matthias Schuler

Clinic for Geriatrics and Palliative Medicine,
Deaconess Hospital Mannheim

@Literature on the Internet:
www.aerzteblatt.de/lit4114

Pautex S, Michon A, Guedira M, Emond H, Le Lous P, Samaras D, Michel JP, Herrmann F, Giannakopoulos P, Gold G: Pain in severe dementia: self-assessment or observational scales? J Am Geriatr Soc 2006; 54: 1040-5. MEDLINECrossRef
European Cooperation in Science and Technology (COST) Action TD1005 Pain Assessment in Patients with Impaired Cognition especially Dementia; www.cost-td1005.net/home/cost-td1005-action-poster.html.
Warden V, Hurley AC, Volicer L: Development and Psychometric Evaluation of the Pain Assessment in Advanced Dementia (PAINAD) Scale. Journal of the American Medical Directors Association 2003; 4: 9-15. CrossRef
Schuler M, Becker S, Kaspar R, Nikolaus T, Kruse A, Basler HD: Psychometric properties of the German "Pain Assessment in Dementia Scale (PAINAD-G) in nursing home residents. J Am Med Dir Assoc 2007; 8: 388-95. MEDLINECrossRef
Lukas A, Barber JB, Johnson P, Gibson SJ: Observer-rated Pain Assessment Instruments Improve Both the Detection of Pain and the Evaluation of Pain Intensity with Dementia. Eur J Pain 2013; 17: 1558-68. MEDLINE
Homepage of the German Pain Society, instructional videos on BESD http://www.dgss.org/home/.
Zwakhalen SM, van der Stehen JT, Najim MD: Which score most likely represents pain on the observational PAINAD pain scale for patients with dementia? J Am Med Dir Assoc 2012; 13: 384-9. MEDLINE
Osterbrink J, Hufnagel M, Kutschar P, Mitterlehner B, Krüger C, Bauer Z, Aschauer W, Weichbold M, Sirsch E, Drebenstedt C, Perrar KM, Ewers A: The painful situation of residents in inpatient care for the elderly. Results of a study in Münster. Pain 2012; 26: 27-35. MEDLINECrossRef
Basler HD, Hüger D, Schuler MS: Assessment of pain in dementia (BESD): Examination of the validity of a method for observing pain behavior. Pain 2006; 20: 519-26. MEDLINECrossRef
Fischer, T: For the development and testing of the BISAD pain assessment in people with severe dementia. The observation instrument for pain assessment in elderly people with severe dementia (BISAD). Publisher Hans Huber: Bern, 2012.
Hølen JC, Saltvedt I, Fayers PM, Hjermstad MJ, Loge JH, Kaasa S: Doloplus-2, a valid tool for behavioral pain assessment? BMC 2007; Geriatric 29: 1-9. MEDLINE
Zwakhalen SM, Hamers JP, Abu-Saad HH, Berger MP: Pain in elderly people with severe dementia: a systematic review of behavioral pain assessment tools. BMC 2006; Geriatric 27: 3rd MEDLINE
Pinter G, Likar R, Anditsch M, Bach M, Böhmer F, Friedrich M, Frühwald T, Gosch M, Gugerell M, Lampl C, Marksteiner J, Pietschmann P, Pils K, Schirmer M: Problem areas in pain measurement and pain therapy in old age . Wien Med Wochenschr 2010; 160: 235-46. MEDLINECrossRef
Handel E, Gnass I, Müller W, Sirsch E, Handel E: Practical Guide ZOPA©. Pain assessment in patients with cognitive and / or impaired consciousness. Bern: Verlag Hans Huber 142 pp. (ISBN 978–3–456–84785–6), 2010.
1.Pautex S, Michon A, Guedira M, Emond H, Le Lous P, Samaras D, Michel JP, Herrmann F, Giannakopoulos P, Gold G: Pain in severe dementia: self-assessment or observational scales? J Am Geriatr Soc 2006; 54: 1040-5. MEDLINECrossRef
2.European Cooperation in Science and Technology (COST) Action TD1005 Pain Assessment in Patients with Impaired Cognition especially Dementia; www.cost-td1005.net/home/cost-td1005-action-poster.html.
3.Warden V, Hurley AC, Volicer L: Development and Psychometric Evaluation of the Pain Assessment in Advanced Dementia (PAINAD) Scale. Journal of the American Medical Directors Association 2003; 4: 9-15. CrossRef
4.Schuler M, Becker S, Kaspar R, Nikolaus T, Kruse A, Basler HD: Psychometric properties of the German "Pain Assessment in Dementia Scale (PAINAD-G) in nursing home residents. J Am Med Dir Assoc 2007; 8: 388-95. MEDLINECrossRef
5.Lukas A, Barber JB, Johnson P, Gibson SJ: Observer-rated Pain Assessment Instruments Improve Both the Detection of Pain and the Evaluation of Pain Intensity with Dementia.Eur J Pain 2013; 17: 1558-68. MEDLINE
6.Homepage of the German Pain Society, instructional videos on BESD http://www.dgss.org/home/.
7.Zwakhalen SM, van der Stehen JT, Najim MD: Which score most likely represents pain on the observational PAINAD pain scale for patients with dementia? J Am Med Dir Assoc 2012; 13: 384-9. MEDLINE
8.Osterbrink J, Hufnagel M, Kutschar P, Mitterlehner B, Krüger C, Bauer Z, Aschauer W, Weichbold M, Sirsch E, Drebenstedt C, Perrar KM, Ewers A: The painful situation of residents in inpatient care for the elderly. Results of a study in Münster. Pain 2012; 26: 27-35. MEDLINECrossRef
9.Basler HD, Hüger D, Schuler MS: Assessment of pain in dementia (BESD): Examination of the validity of a method for observing pain behavior. Pain 2006; 20: 519-26. MEDLINECrossRef
10.Fischer, T: For the development and testing of the BISAD pain assessment in people with severe dementia. The observation instrument for pain assessment in elderly people with severe dementia (BISAD). Publisher Hans Huber: Bern, 2012.
11.Hølen JC, Saltvedt I, Fayers PM, Hjermstad MJ, Loge JH, Kaasa S: Doloplus-2, a valid tool for behavioral pain assessment? BMC 2007; Geriatric 29: 1-9. MEDLINE
12.Zwakhalen SM, Hamers JP, Abu-Saad HH, Berger MP: Pain in elderly people with severe dementia: a systematic review of behavioral pain assessment tools. BMC 2006; Geriatric 27: 3rd MEDLINE
13.Pinter G, Likar R, Anditsch M, Bach M, Böhmer F, Friedrich M, Frühwald T, Gosch M, Gugerell M, Lampl C, Marksteiner J, Pietschmann P, Pils K, Schirmer M: Problem areas in pain measurement and pain therapy in old age . Wien Med Wochenschr 2010; 160: 235-46. MEDLINECrossRef
14.Handel E, Gnass I, Müller W, Sirsch E, Handel E: Practical Guide ZOPA©. Pain assessment in patients with cognitive and / or impaired consciousness. Bern: Verlag Hans Huber 142 pp. (ISBN 978–3–456–84785–6), 2010.
Cognitive Deficits: How to Recognize Pain in Dementia

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