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VU Research Portal

Pain in Dementia

Binnekade, T.T.

2020

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citation for published version (APA) Binnekade, T. T. (2020). Pain in Dementia.

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126 Chapter 7

SUMMARY OF MAIN FINDINGS

Review section

In 2014 a systematic review (Chapter 2) was performed in order to determine the prevalence of pain in older individuals suffering from one of the major dementia subtypes: AD, VaD, MD, FTD or DLB. Ten studies were identified that met our inclusion criteria. Most of these studies included older persons suffering from AD, while studies reporting pain in DLB and FTD were scarce or absent, respectively. The sample-weighted prevalence of pain could only be calculated for AD, VaD and MD: AD 45.8% (95% confidence interval, CI: 33.4–58.5%), VaD 56.2% (95% CI: 47.7–64.4%) and mixed dementia 53.9% (95% CI: 37.4–70.1%). The results implicated that the prevalence of pain in the three major types of dementia did not differ significantly, and that more research is required to establish reliable prevalence ratings forall major subtypes of dementia. After establishing an indication of the prevalence of pain in dementia in Chapter 2, we set out to identify what was known about possible differences in pain experience between dementia subtypes in Chapter 3. A systematic review (2014) was performed to identify papers reporting the experience of pain in older persons suffering from one of the major subtypes of dementia. As with the earlier systematic review most studies focused on persons with AD. Twelve studies were identified that focused on the experience of pain in AD, three studies in VaD, and one study in FTD, while no studies included persons with DLB.The included studies were divided in observational studies reporting clinical findings and experimental studies that administered painful stimuli to older individuals with and without dementia. In AD, clinical studies indicated that the experience of pain of individuals with AD was reduced compared to controls without a form of dementia. The findings of experimental studies on pain in AD were inconsistent with some studies indicating a reduced pain experience in AD, while other studies reported no difference, or even a possible increase in pain experience in individuals with AD compared to controls. In VaD, clinical studies indicated that primary caregivers in nursing homes rated the intensity of pain in individuals with VaD as similar to persons without dementia, but they did report more painful locations in individuals with VaD. In individuals with VaD, whowere able to report the intensity of pain, higher pain intensity was found compared to controls. No experimental pain studies were identified in which painful stimuli were administered to individuals with VaD. In FTD, no clinical studies were available. Instead, experimental pain studies found that individuals with FTD had significantly lower pain sensitivity than controls. Pain intensity of individuals with DLB has not been examined, as far as we know. These findings suggest that there is some

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127 General Discussion evidence that the perceived pain intensity may differ, depending on the subtype of dementia.

Clinical section

After establishing what is known about pain prevalence and pain experience in dementia subtypes, a clinical study was performed in which the prevalence and intensity of pain, as well as pain medication, were examined in individuals suffering from a major dementia subtype and to compare these findings with individuals with mild cognitive impairment (MCI) and subjective cognitive impairment (SCI) (Chapter 4). In the PAINDEMIA study, we assessed outpatient memory clinic patients from locations in Amstelveen, Amsterdam and Zutphen. In total, 759 individuals with AD, VaD, MD, FTD, DLB, MCI, or SCI were included. The presence of pain was lowest in AD (34.4%) and MD (34%), and highest in individuals with MCI (40.9%) and SCI (49.5%). After adjusting for age, gender and depressive symptoms we found that individuals with AD and MD were significantly less likely to indicate that they suffered from pain than individuals with SCI. However, the self-reported pain intensity did not differ between any of the included groups. Interestingly, over half of the participants (62.5%) who reported suffering from pain did not use analgesic medication. This number did not significantly differ between groups. The high number of individuals both with and without dementia that did not use analgesic medication despite being in pain raised the question whether pain treatment is adequate in older individuals.

As addressed in the previous chapters, the presence and intensity of pain differs between dementia subtypes and individuals without dementia. The estimates of the prevalence and intensity of pain do not only vary between subtypes, but also between studies. One of the explanations is that the neuropathology associated with a certain dementia subtype varies between individuals and between stages of dementia. Therefore, in Chapter 5, we examined whether self-reported pain intensity was associated with three measures of ‘dementia related neuropathology’ irrespective of dementia diagnosis. The measures of neuropathology focused on medial temporal atrophy (MTA), global cortical atrophy (GCA) and white matter hyperintensities (WMH). These validated visual rating scales were scored using cerebral magnetic resonance imaging (MRI). No association between GCA, MTA and pain intensity was found. However, we did find a positive association between pain intensity and WMH, which indicates that more severe WMH are associated with higher self-reported pain intensity.

Finally, in Chapter 6, we assessed the relationship between chronic pain, depressive symptoms and cognitive functioning. Chronic pain and depressive symptoms have both

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128 Chapter 7

been found to be negatively associated with cognitive functioning in individuals without dementia. We hypothesized that when both are present, these processes reinforce each other, which may have serious implication for older individuals both with and without dementia. We hypothesized that the relationship between pain and cognition was mediated by the presence of depressive symptoms1. To test our hypothesis we focused

on a group of 359 older individuals with a major depressive disorder (MDD) and 121 non-depressed persons, derived from the Netherlands Study of Depression in Older adults (NESDO). No association between the cognitive factors episodic memory, processing speed, working memory, and interference control on the one hand and chronic pain on the other was found. In addition, no interaction between chronic pain and MDD was found. However, structural equation modeling did indicate that the association between chronic pain and interference control was mediated by depressive symptoms. These results may indicate that chronic pain increases the severity of depressive symptoms, which negative affects interference control, an important part of executive functioning. However, given the cross-sectional nature of the study future research is warranted. Methodology of the original observational crossectional study: a critical review In the original study, pain was assessed using the Brief Pain Inventory (BPI)2. The BPI is

a short self-report questionnaire which enables the participants to indicate whether

they were in pain during the last 24-hours not including day-to-day types of pain such as mild headaches, sprains or tooth ache. In addition, the intensity of pain and the extent to which pain interfered with their day to day functioning is reported on an 11-point numeric rating scale. Although the BPI is a well-validated instrument, which has been used in examining multiple types of pain including neuromuscular and neuropathic pain3, one may argue that the BPI is less suitable to study pain in individuals with

cognitive impairment or dementia. Self-report is considered the gold standard of pain assessment4. However the ability to accurately report about pain becomes increasingly

difficult with the decline of cognitive functions, such as communicative abilities5,6.

Previous research has found that individuals in a mild to moderate stage of cognitive impairment are able to accurate report their intensity of pain7,8. In the present study,

the degree of cognitive impairment has been assessed with the Mini-Mental State Examination (MMSE). The use of cut-off values for the degree of cognitive impairment varies, but for the current study scores of 14 or less are considered indicative for severe cognitive impairment9. In the current study, 94% of participants had an MMSE score

of over 14 points and were considered to have a mild-moderate cognitive impairment. Therefore, it is unlikely that the degree of cognitive impairment has strongly influenced the results in the current manuscript. However, despite having similar scores on the MMSE, e.g. 16 points, varying cognitive abilities maybe present9. This makes the use of

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