Neuropsychological Assessments of Dementia in Down Syndrome and Intellectual Disabilities

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The final chosen face from Card B, C, or D was noted. Facial affective scale: comprehension test with ordering format. Three faces were presented in the order of severe pain, mild pain, and moderate pain.

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Facial affective scale, divided into three different parts. Card A was first shown and participants were asked which face corresponded to the reported pain. When the left face of Card A was chosen, the question was repeated while showing Card B. When the middle face of Card A was chosen, the question was repeated while showing Card C. When the right face of Card A was chosen, the question was repeated while showing Card D. For pain intensity, the numeric side of the colored analogue scale [ 47 , 48 ] was used. A higher score indicated more pain.

The NRS was presented with the plastic slide in the middle, and participants were asked to place it on the number corresponding to the reported pain. The average and range of pain ratings with the FAS and CAS are provided in Table 2 for participants who reported pain during the test session. For participants who passed the comprehension test according to the intended response but who did not have pain, the FAS value of 0. Statistical analyses were performed using SPSS Thirteen participants were not able or willing to perform all four movement situations.

The main analyses were binary logistic regression analyses i. Although this interaction was statistically significant, visual inspection of EF plotted against the logit of the outcome showed no severe violation of linearity, hence the model was run as originally proposed.

Both a simple model and an interaction model i. Multilevel analysis was not necessary. Therefore, this variable was not included in the logistic regression analyses. The odds ratio implied that participants with higher memory scores were less likely to report the presence of pain, although with only In other words, those with a worse memory performance were more likely to report the presence of pain. The association between EF and reporting the presence of pain was not statistically significant.

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Table 3 Binary logistic regressions for variables potentially associated with the likelihood of self-reporting the presence of pain. Age was centered to the mean. Binary logistic regressions for variables potentially associated with the likelihood of self-reporting the presence of pain. All analyses of the self-reported pain experience included only participants who comprehended a self-reporting scale and reported pain during the test session.

The median pain affect was 0. However, when selecting only participants for each situation who reported pain in that specific situation instead of selecting all participants who reported pain in at least one situation , the pain scores i. The small number of these participants limited the likelihood that their presence would influence the results.

Table 4 shows the results of the multiple linear regression analyses. Only results concerning cognitive functioning will be described. In the simple model, neither Memory nor EF had statistically significant associations with self-reported pain experience. No interactions had a statistically significant association with self-reported pain experience.


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Table 4 Multiple linear regression analyses on the association between cognition and pain experience in participants who reported pain during the test session. Multiple linear regression analyses on the association between cognition and pain experience in participants who reported pain during the test session. The first main finding of the present study was that adults with DS who performed worse on memory tests were more likely to report the presence of pain.

This is in contrast to previous studies in which a worse cognitive functioning of elderly people was associated with less pain reporting [ 53—55 ]. However, it is unclear whether less pain reporting in elderly people with cognitive impairment is caused by a decreased ability to report pain or by a decreased pain experience due to dementia [ 56 ].

Our finding is in line with an increased number of pain complaints, both spontaneously and after inquiry, in elderly people with impaired cognitive functioning [ 57 ]. The authors of that study suggest that cognitive impairment may be related to less adequate strategies for coping with pain as passive coping is related to reporting more pain [ 58 ]. We can only speculate whether such a phenomenon also exists in adults with DS. It seems contrasting with the lacking association between EF and self-reported presence of pain as EF is also involved in coping with pain [ 59 ].

Another possible explanation for the association between memory and self-reported presence of pain is that DS adults with an impaired memory are less able during the test session to recall pain from the preceding week and pain during the movement situations and that this uncertainty may lead to acquiescence i. The second main finding was the absence of associations between cognitive functioning and self-reported pain experience that reached statistical significance.

Another explanation is that the functional association between cognitive functioning and pain experience is abnormal in DS. Although such a functional association has been demonstrated, for example in chronic pain patients [ 16 , 61 ] and people with dementia [ 20 ], structural differences and atypical patterns of brain activation have been found in adults with DS [ 62 ]. While much is still unknown about the relationship between brain anatomy and cognitive functioning in DS, the brain organization for cognitive functions such as verbal memory and language seems abnormal or even inefficient [ 63 ].

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As far as we know, no neuroimaging studies of pain in DS have been performed. In short, the question arises of whether the same brain areas for cognitive functioning and pain experience are involved and activated in DS as in the general population and how cognitive functioning and pain experience are functionally associated in DS. The strength of the present study is that, as far as we know, we were the first to study the association between cognitive functioning and self-reported pain in DS. Limitations of the present study are that no distinction between pain and discomfort was made for the physical conditions, that the actual presence of pain experience was uncertain due to the use of self-report, and that the self-reported presence of pain during rest was a broad category i.

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Another limitation is the lack of information about attention, inhibition, and anxiety, while these measures may be significant to the pain experience and the relationship with cognitive functioning. Further, the use of the Social Functioning Scale for Intellectual Disability [ 24 ] or the Social Functioning Scale for Intellectual Disability Plus [ 25 ] appeared to be incorrect in 12 participants according to the guidelines in the manuals.


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  7. However, a comparison with a previous measurement of the same questionnaire was still possible to screen for the presence of dementia. Furthermore, for eight participants with DS, the series of movements for the back consisted only of touching the toes; rotation was not yet included in the study protocol of seven participants and was refused by one participant due to back pain.

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    A modified version of the Vocabulary WPPSI-R subtest was used because our Dutch translation of three of the 12 words differed from forward-backward translation based on guidelines [ 64 ] and data collection was too far advanced to make adaptations. Finally, the ceiling effect of the Verbal Memory test and the recognition condition of the Eight Words Test suggests that these tests were too easy for the participants.


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    The clinical additional value of the memory model in predicting self-reported presence or absence of pain is limited as the classification rate of Because it is unclear whether factors such as acquiescence explain an affirmative answer of people with intellectual disabilities [ 60 ], it is recommended to ask about the presence of pain in that moment i. Apart from assessment of the presence of pain, an effort should be made to evaluate the impact of pain on the individual and to use this information to direct treatment and measure improvement.

    For a better understanding of the association between memory and the self-reported presence of pain in adults with DS, the present study needs to be replicated as a longitudinal study with repeated measurements. This would be more accurate because it increases the chance of assessing pain from fluctuating painful conditions such as rheumatoid arthritis [ 65 ] and because it decreases the influence of a poor memory on pain recall: The individual only has to reflect on current pain during each of the repeated assessments instead of also recollecting past pain experiences [ 66 , 67 ].

    The use of acute painful stimuli e. The results of the current study suggest that adults with DS who have impaired memory functioning are more likely to report pain, but that self-reported pain experience is unrelated to cognitive functioning. The findings need to be examined further to understand underlying mechanisms and to evaluate how neuropsychological assessment can contribute to pain assessment in adults with DS. We would like to thank the participants of the involved care centers and the Dutch Down Syndrome Foundation, as well as their family and caretakers.

    We would also like to thank the physicians M. Hermans general physician practice , E. Booij, and E. Middelhoven both physicians of care center Ons Tweede Thuis for their review of physical conditions, Prof. Oxford University Press is a department of the University of Oxford.

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