Introduction As dementia prevalence increases, more individuals are becoming caregivers for family members with dementia. This role can negatively impact the caregiver's quality of life (QoL), even...Show moreIntroduction As dementia prevalence increases, more individuals are becoming caregivers for family members with dementia. This role can negatively impact the caregiver's quality of life (QoL), even when the person with dementia resides in a nursing home. This study aimed to identify factors influencing caregivers' well-being. We investigated whether the type and stage of dementia, the QoL of the person with dementia, and their interactions could predict the family caregiver's QoL. Methods This study included 205 elderly participants with dementia from 19 nursing homes and their family caregivers. It measured the type of dementia by using a physician’s diagnosis, stage of dementia using the Bedford Alzheimer Nursing Severity-Scale (BANS-S) ( M = 14.92, SD = 4.58), QoL of the person with dementia using the Quality of Life in Late-Stage Dementia (QUALID) scale (M = 22.88, SD = 7.96 ), and caregiver QoL using a scale question from the TOPICS-MDS questionnaire (M = 7.36 , SD = 1.18). A general linear model was employed to analyze the data. Results Neither the type of dementia (F(3, 189) = 0.62, p = 0.6030), stage of dementia (F(1, 189) = 0.871, p = 0.352), nor the QoL of the person with dementia (F(1, 189) = 0.225, p = 0.636) predicted the QoL of the family caregiver. Additionally, no interactions between these factors were significant predictors of the family caregiver’s QoL (Type x Stage; F(3, 189) = .264, p = .851) (Type x QoL); F(3, 189) =.548 , p =.650) (Stage x QoL; F(1, 189) = .388, p = .534) (Type x Stage x QoL; F(3, 189) =.149, p = .930). Discussion None of the characteristics nor their interactions were able to predict the caregiver's quality of life. These results contradict earlier research. Possible explanations are the violations of certain assumptions within the GLM, the methods that were used to measure the variables and the difference in care setting between this study and previous studies. Further investigation is needed to clarify these discrepancies and refine our understanding of factors affecting family caregivers' QoL.Show less
An increasing number of individuals with dementia express a wish for euthanasia, the deliberate act of terminating life through the administration of drugs, to hasten their death. Yet, physicians...Show moreAn increasing number of individuals with dementia express a wish for euthanasia, the deliberate act of terminating life through the administration of drugs, to hasten their death. Yet, physicians remain hesitant to perform the procedure. Research suggests that the emotional challenges of administering euthanasia contribute to this reluctance. In this cross-sectional study, multinominal logistic regression analyses were employed to assess whether physicians better equipped to handle these challenges through active coping strategies are more willing to administer euthanasia to dementia patients, as well as a potential mediating role of internal Locus of Control (LoC). The study involved 203 physicians (108 females, 95 males) from six countries (US, the Netherlands, Israel, Japan, Germany, Switzerland) who practice end-of-life care for dementia patients. Participants took part in a 60-minute assessment that included an animation video vignette to assess their opinions on euthanasia in dementia cases, as well as a survey. Contrary to expectations, no association was found between active coping strategies and physicians’ willingness to administer euthanasia in dementia cases (X² (2, N = 203) = 2.22, p = .33). There was also no relationship between internal LoC and physicians' willingness to administer euthanasia in dementia cases (X² (2, N = 203) = 0.07, p = .97), nor any mediation effect of internal LoC (R² = .005, p =.31). A positive correlation between active coping and internal LoC was observed (r = .12, p = .001). Additionally, post-hoc analyses revealed a significant influence of country on physicians’ willingness (X² (10, N = 203) = 33.56, p < .001). The findings of this study highlight the importance of exploring a broader range of factors influencing physicians’ willingness, such as experience with previous euthanasia requests, as well as the need for country-specific analyses. Future studies should adopt a multifactorial design to better understand the complexities of physicians' willingness to administer euthanasia in dementia cases.Show less
Abstract Introduction: Individuals with dementia often exhibit challenging behaviors. These behaviors might be due to a level of distress because of unmet needs. A structured care-protocol such as...Show moreAbstract Introduction: Individuals with dementia often exhibit challenging behaviors. These behaviors might be due to a level of distress because of unmet needs. A structured care-protocol such as the STA OP! method is used to systematically assess and treat pain and challenging behaviors in individuals with dementia. Examining challenging behavior and the effect on professional caregivers can provide information on how to improve care, education and intervention methods. Aim of the study: To examine the effects of the modified STA OP! method on the challenging behaviors in individuals with dementia and on emotional burden in professional caregivers. Furthermore, establishing if there is a relationship between challenging behavior and emotional burden in professional caregivers. Methods: A mixed-methods longitudinal design was used to collect data at a baseline measurement, after three months and six months. 78 individuals with mild to severe dementia between 72 and 92 years of age living in a Dutch care facility and their professional caregivers took part. Results: There was no significant effect of the modified STA OP! method on challenging behavior. There was a decrease in experienced emotional burden between the baseline and three-month measurement. Challenging behavior was associated with more emotional burden. Conclusions and implications: The implementation of the modified STA OP! method reduced the emotional burden in professional caregivers and has shown that challenging behavior increases the chances of emotional burden. The effects of an intervention method on the emotional burden in professional caregivers have not yet been widely researched, and this study found a decrease of emotional burden which could contribute to further research.Show less
Abstract Background: Informal caregivers are increasingly important in the care for people with dementia. When people with dementia live in a nursing home this involvement often continues. The...Show moreAbstract Background: Informal caregivers are increasingly important in the care for people with dementia. When people with dementia live in a nursing home this involvement often continues. The Namaste Family Care program focuses on including the informal caregiver in the intervention for people with dementia that no longer benefit from regularly organized activities in the nursing home. The aims of the current study are to identify characteristics of informal caregivers and care recipients that influence the report of positive caregiving experiences, and identify the influence of the Namaste Family Care program on caregiver burden and positive caregiving experiences. Methods: Nursing homes were randomly assigned to the Namaste (n=107) or the control (care as usual; n=105) condition. Within the nursing homes informal caregivers (n=212) and their relative with dementia were recruited. Measures included positive caregiving experiences, caregiver burden, demographic characteristics and severity of dementia. Positive caregiving experiences were measured using the Positive Experience Scale (PES; De Boer et al., 2012) and Gain in Alzheimer care INstrument (GAIN; Yap et al., 2009). Caregiver burden was measured using Zarit’s caregiver burden scale (ZBI, 7-item; Zarit et al., 1980) and severity of dementia using the Bedford Alzheimer Nursing Severity-Scale (BANS-S; Volicer et al., 1994). Demographic characteristics included age, gender, relationship to the care recipient, educational background, employment, and religiousness and were measured using the Informal Caregivers Survey–Minimum Data Set (TOPICS-MDS; Lutomski et al., 2013). Questionnaires were filled in by the informal caregiver and nursing staff at baseline and 3-month follow-up. Results: Women reported higher PES scores than men (p < 0.01) at baseline. Higher educated people reported lower GAIN scores (p < 0.01) at baseline. People that perceived religion as very important reported higher GAIN scores (p <0.01) at baseline. Higher education (p = 0.025), age (p = 0.007) and employment (p = 0.03) were predictive for positive caregiving experiences. Caregiver burden was significantly lower (p = 0.017) at follow-up (Mean = 12.27, SD = 4.88) when compared to baseline measures (M = 12.93, SD= 5.62). No significant differences in positive caregiving experiences were found between conditions (Namaste vs. control). The mediation analysis showed no significant mediating characteristic between caregiver burden and positive caregiving experiences. Conclusions: Older and employed people are more likely to report positive caregiving experiences and higher educated people are more likely to report less positive caregiving experiences. Future research should include more follow-up moments to get a more complete image of the perceived influence of the intervention. The current conclusions can be used to identify caregivers ‘at risk’ for negative experiences and burden in their role as caregiver. It also contributes to the evolvement of interventions for people with severe dementia in nursing homes. Samenvatting Er wordt een steeds groter beroep gedaan op mantelzorgers in de zorg voor mensen met dementie. Ook na opname in het verzorgingshuis blijven mantelzorgers vaak zorgdragen voor de familieleden met dementie. Het Namaste Familie programma is opgezet om activiteiten te organiseren voor mensen met gevorderde dementie die niet langer kunnen participeren in de georganiseerde activiteiten van het verpleeghuis. Het Namaste Familie programma betrekt de mantelzorgers actief in deze activiteiten om bezoeken aan de familieleden met dementie leuker en gemakkelijker te maken. De 212 mantelzorgers en hun familielid met dementie zijn willekeurig toebedeeld aan het Namaste Familie programma (107 participanten) of de gewone zorg (105 participanten). Informatie over positieve zorgervaringen van de mantelzorgers, mantelzorger belasting en demografische kenmerken van de participanten werd verzameld tijdens een baseline meting en na 3 maanden. Dit onderzoek richt zich op het vinden van karakteristieken die positieve zorgervaringen voorspellen. Daarnaast is het doel om de invloed van het Namaste Familie programma te vinden op mantelzorger belasting en positieve zorgervaringen. Uit de resultaten bleek dat vrouwen meer positieve zorgervaringen hadden dan mannen. Mensen die religie belangrijk vinden in hun leven hadden meer positieve zorgervaringen dan minder religieuze mensen. Mensen met een hogere opleiding hadden minder positieve zorgervaringen dan gemiddeld en laagopgeleiden. Kenmerken die positieve zorgervaringen kunnen voorspellen zijn, een hoge leeftijd en werkzaam zijn. Een kenmerk dat positieve zorgervaringen kan belemmeren is hoog opgeleid zijn. Verder hadden mensen minder mantelzorger stress na 3 maanden wanneer vergeleken met de baseline meting, maar het programma had hier geen invloed op. Het programma heeft geen duidelijke invloed gehad op positieve zorgervaringen. Ook zijn er geen karakteristieken gevonden die een effect tussen mantelzorger belasting en positieve zorgervaringen beïnvloeden. Conclusies uit dit onderzoek zijn dat oudere mensen met een baan meer positieve zorgervaringen, en hoger opgeleide mensen minder positieve zorgervaringen rapporteren. Door deze conclusies kunnen mantelzorgers die risico lopen op negatieve ervaringen tijdens hun rol worden gevonden en beter worden geholpen. Daarnaast kunnen zorgprogramma’s en interventies rekening houden met deze bevindingen om de mantelzorger te ontlasten van hun zorgen en of ze hulp te bieden bij moeilijke zorgtaken.Show less
Aging-related tau astrogliopathy (ARTAG) describes the pathological accumulation of abnormal tau proteins in a specific type of brain cell called: astrocytes. This phenomenon is related to the...Show moreAging-related tau astrogliopathy (ARTAG) describes the pathological accumulation of abnormal tau proteins in a specific type of brain cell called: astrocytes. This phenomenon is related to the aging brain but has been predominantly observed in people who have experienced frequent head trauma, such as rugby and soccer players. The presence of ARTAG has been previously linked to head trauma, yet the relationship between trauma and ARTAG development has not systematically been studied. We evaluated whether the degree and amount of head injury is a significant risk factor for the presence of ARTAG in the brain. Data from 128 post-mortem brains, donated to the Netherlands Brain Bank (NBB), were used to determine the ARTAG presence, experienced head injury and the degree of the head injury. On the dataset created, a chi-square test and a binary logistic regression were performed. Results of the chi-square test showed no significant risk factor in ARTAG presence in the brain. Furthermore, the results of a binary logistic regression on ARTAG presence showed that such presence was not significantly associated with experienced head injury. In the logistic regression we adjusted for known risk factors of ARTAG pathology; NFT-pathology, FTLD-pathology, age and sex. When adjusting for these covariables, we were able to confirm that age and the presence of NFT-pathology pose a significant risk for the presence of ARTAG in the brain, as suggested by previous studies. Overall, the present findings do not support the notion that head injury is a risk factor for ARTAG presence in the brain. However, they do align with prior indications that age and NFT-pathology are risk factors for ARTAG presence. For future research, a prospective longitudinal design is recommended to classify and monitor head injury on a more detailed level. Accuracy is of great importance as it is possible that predominantly the repeated head trauma can make a difference in the development of ARTAG.Show less
As the covid19 pandemic spread across the globe, it has become increasingly evident that the virus is not evenly distributed among the host populations. A closer inspection of the existing data has...Show moreAs the covid19 pandemic spread across the globe, it has become increasingly evident that the virus is not evenly distributed among the host populations. A closer inspection of the existing data has shown that the transmission rates amongst specific groups are consistently higher than of others. One of the pattens that emerged is that people with pre-existing comorbidities is one of these groups whom are at higher risk of infection. In this project we aim to explore the prevalence of infection rates amongst populations that have been diagnosed with Dementia prior to the Covid19 outbreak, as well as the potential aggravation of Covid19-disease due to the antecedence of these conditions, in the form of a systemic-review and random-effects metal-analysis.Show less
Vascular damage, like cerebral amyloid angiopathy (CAA), is a comorbidity in the majority of Alzheimer’s disease (AD) patients. Vascular reactivity has been introduced as a novel marker for...Show moreVascular damage, like cerebral amyloid angiopathy (CAA), is a comorbidity in the majority of Alzheimer’s disease (AD) patients. Vascular reactivity has been introduced as a novel marker for vascular damage in CAA. It is measured as the blood oxygen level dependent (BOLD) response in the visual cortex after visual stimulation. It may detect underlying vascular factors early in the disease, like in patients with subjective (SCI) or mild cognitive impairment (MCI). In these stages, SCI patients start to experience subjective cognitive complaints, whereas these can be objectified in MCI patients. The aim of this study is to measure and compare vascular reactivity in memory clinic patients and controls, and explore its association with cognition. We performed 3T MRI in 43 controls, 17 SCI, 20 MCI, and 12 AD patients and obtained 3D T1-weighted images, FLAIR, and visually stimulated BOLD fMRI scans. The main independent variable was patient group. Dependent variables were three vascular reactivity parameters time-to-peak, time-to-baseline, and amplitude of the BOLD response. Univariate linear models were performed to comparedifferences in vascular reactivity between memory clinic patients and controls, and separate patient groups and controls. Linear regression analyses were performed to explore the association between vascular reactivity and cognition. All analyses were corrected for age, gender, gray matter volume, white matter hyperintensities, and CAA. BOLD amplitudes were smaller in dementia and MCI (ps < .001), but not SCI patients (p = .77).Time-to-peak and time-to-baseline showed no differences between groups (ps > .07). Lower amplitude of the BOLD response was associated with poorer performance of global cognitive, memory, executive, and language functioning (ps < .04). Our findings demonstrate that dementia and MCI are associated with lower vascular reactivity, reflected as amplitude of the BOLD response. In our sample, lower vascular reactivity is also associated with poorer cognitive functioning. These results indicate that impaired vascular reactivity plays a key role early in dementia and is an independent contributor to cognitive decline. Potentially, vascular reactivity could be used as a marker for amyloid-beta and as an alternative way to quantify vascular damage. Ultimately, it could aid in the development of interventions focused on amyloid-beta removal and could serve as a marker for disease progression.Show less
Objective: The aim of this study was to assess whether the psychometric properties of a new version of the Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE) for elderly migrants...Show moreObjective: The aim of this study was to assess whether the psychometric properties of a new version of the Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE) for elderly migrants(IQCODE-sf-M) has better predictive quality for dementia than the original version in short form (IQCODE-sf) for dementia in elderly migrants with low or no education. The original version IQCODE-sf contains 16 items and the IQCODE-sf-M contains 21 items, of which 11 items are newly added, assuming to be less culturally biased.Methods: This study is a case control design. In this study 111 patients of the memory clinic and 50 healthy participants with the age of 55 years or older were included. The patient group was divided in three groups; dementia (n = 49), MCI (n = 34) and cognitively healthy (n = 28). At least 50% of participants in the patient sample were illiterate. The informants of the participants filled out the IQCODE, for example a caregiver or relative. Results: The area under the curve (AUROC) of the IQCODE-sf was 0.86. A cut-off point of 3.69 yielded a sensitivity of 88% and a specificity of 74%. The AUROC of the IQCODE-sf-M was 0.87. A cut-off point of 3.57 yielded a sensitivity of 81% and a specificity of 86%. We found no statistically significant difference in the psychometric properties between the new modified IQCODE (IQCODE sf-M) and IQCODE in short form (IQCODE-sf).Conclusion: In this study it has been shown that the original version of the IQCODE in short form works fine for the elderly migrants in the clinical and community settings and could not be improved by adding 11 new itemsShow less
Bachelor thesis | Film- en literatuurwetenschap (BA)
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Contemporary works of young adult literature (YAL) often contain characters with disabilities. This thesis analyses disability in YAL and focuses on the themes 'dementia' and 'autism'. The first...Show moreContemporary works of young adult literature (YAL) often contain characters with disabilities. This thesis analyses disability in YAL and focuses on the themes 'dementia' and 'autism'. The first chapter examines the representation of dementia in YAL by comparing Lisa Genova's Still Alice, a work of adult fiction, to Lara Avery's The Memory Book, a work of YAL. The second chapter analyses the representation of autism spectrum disorder (ASD) in YAL and compares Graeme Simsion's The Rosie Project, a work of adult fiction, to Francisco Stork's Marcelo in the Real World, a work of YAL.Show less
This thesis takes a look at three texts that were written in a time when dementia had not yet become the focus of the attention it has been amassing these past years. Two of these texts are from...Show moreThis thesis takes a look at three texts that were written in a time when dementia had not yet become the focus of the attention it has been amassing these past years. Two of these texts are from England and one of them from the Netherlands, and they all, will be argued, contain depictions of dementia. These texts were written in a time when dementia was still seen, more or less, as a normal part of ageing, and even if dementia is never explicitly mentioned in either of the texts, by comparing these texts and the descriptions therein with contemporary medical literature about the behavioural and psychological symptoms of dementia (BPSD) it will be shown that the behaviour as it is described in the texts warrants a qualification of the described behaviour as being a depiction of dementia. This analysis will also include the depiction of the attitudes surrounding the described behaviour as collateral evidence for the qualification of the behaviour as dementia. It will further be shown that these representations of the disease in all three cases have a function beyond a mere depiction of a developing process, and that through the ways in which the descriptions are shaped, the process I designate as dementia becomes a metaphor for an underlying topic. For this, use will also made of an analysis of how in contemporary fiction dementia is represented and used.Show less
