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The disease trajectory and healthcare requirements of patients with young‐onset dementia (YOD) differ from those of older patients. Accurate data about YOD is crucial to improve diagnosis and optimize care. PRECODE‐GP aims to set up a prospective national database of patients with YOD to gain insight into the occurrence and characteristics of patients with YOD in memory clinics in the Netherlands. The national database includes data from dementia patients aged <70 years at diagnosis, collected by local memory clinics (MCs). Data included demographic information, clinical variables, and (etiological) diagnoses. Between July 2019 and December 2022, 781 patients with a mean age of 62±6y at diagnosis (range 37 to 69y) were included from 39 MCs. Most (n = 547,70%) were diagnosed with dementia due to Alzheimer's disease (AD). Patients with Frontotemporal lobe dementia (FTD, n = 87, 11%) were youngest (61±6.0y). Over half (55%) of patients were experiencing symptoms for ≥2 years. We initiated a Dutch national YOD database to improve diagnosis and care for this underrepresented and vulnerable patient group. The database provides a basis for future in‐depth studies on YOD. [ABSTRACT FROM AUTHOR]

The key to stopping Alzheimer's disease (AD) lies in the pre‐dementia stages, with the goal to stop AD before dementia has started. We present the rationale and design of the ABOARD (A Personalized Medicine Approach for Alzheimer's Disease) project, which aims to invest in personalized medicine for AD. ABOARD is a Dutch public–private partnership of 32 partners, connecting stakeholders from a scientific, clinical, and societal perspective. The 5‐year project is structured into five work packages on (1) diagnosis, (2) prediction, (3) prevention, (4) patient‐orchestrated care, and (5) communication and dissemination. ABOARD functions as a network organization in which professionals interact cross‐sectorally. ABOARD has a strong junior training program "Juniors On Board." Project results are shared with society through multiple communication resources. By including relevant partners and involving citizens at risk, patients, and their care partners, ABOARD builds toward a future with personalized medicine for AD. Highlights: ABOARD (A Personalized Medicine Approach for Alzheimer's Disease) is a public–private research project executed by 32 partners that functions as a network organization.Together, the project partners build toward a future with personalized medicine for Alzheimer's disease.Although ABOARD is a Dutch consortium, it has international relevance.ABOARD improves diagnosis, prediction, prevention, and patient‐orchestrated care. [ABSTRACT FROM AUTHOR]

Municipalities in Western Europe have increasingly gained a responsibility to support their populations' healthy ageing, but are they ready to do so? In this case study, we are looking into the awareness, attitudes, capacities and mandates of 33 neighboring Belgian, Dutch, and German municipalities to support ageing people, and especially people with dementia, people with late‐life depression and informal caregivers. As part of the Senior Friendly Communities Interreg project, we conducted semi‐structured interviews with municipal policymakers and relevant stakeholders from May 2017 to January 2018. The results show that dementia was a more salient theme in municipality policies than depression; that informal caregivers were considered important but difficult for municipalities to identify; that there was a difference between how embedded these health themes were in policies versus in practice; and lastly, that conducting this assessment turned out to act as an intervention itself. We discuss the similarities and differences between the regions, and the context that needs to be taken into account for municipalities when becoming more age‐friendly. These results do not only provide an insight into the status quo of the participating municipalities with regard to becoming more age‐friendly but can provide a starting point for further development of policies in this area. Key points: The Senior Friendly Communities project stimulates age‐friendly municipality policies for people with dementia, people with late‐life depression, and informal caregivers.This paper describes the results of interviews with officials from municipalities in the Meuse‐Rhine Euroregion who participated in the Senior Friendly Communities project.The results indicate that dementia is a more salient topic in municipality policies than depression.Informal caregivers are regarded as difficult to identify for municipalities.The support of healthy ageing differs between policies and practice.Conducting assessments of municipal health policies acted as an intervention itself. [ABSTRACT FROM AUTHOR]

Objective: To evaluate the cost-consequences of an intervention for the management of neuropsychiatric symptoms in nursing home residents with young-onset dementia.Methods: A stepped wedge design was used. The intervention consisted of an educational program and a multidisciplinary care program and was implemented in 13 nursing homes from September 2015 to March 2017. Costs' outcomes included the time investment of the elderly care physician and health care psychologists regarding the management of neuropsychiatric symptoms, residents' psychotropic drug use, nursing staff absenteeism, and costs of the educational program. Composite cost measure contained the sum of costs of staff absenteeism, costs on psychotropic drugs, and costs of the educational program. Costs of time investment were investigated by comparing means. Costs of psychotropic drug use were analyzed with mixed models at resident level and as part of the composite cost measure on unit level. Staff absenteeism was also analyzed at unit level.Results: Compared with care as usual, the mean costs of time invested decreased with €36.79 for the elderly care physician but increased with €46.05 for the health care psychologist in the intervention condition. Mixed model analysis showed no effect of the intervention compared with care as usual on the costs of psychotropic drug use, staff absenteeism, and the composite cost measure. The costs of the educational program were on average €174.13 per resident.Conclusion: The intervention did not result in increased costs compared with care as usual. Other aspects, such as the lack of a structured working method, should be taken into account when considering implementation of the intervention. [ABSTRACT FROM AUTHOR]

Objectives: Memory clinics (MCs) have been established to improve diagnosis and treatment of cognitive disorders, including dementia. The aim of this study was to determine the characteristics and working methods of MCs in the Netherlands in 2016. More insight into different working methods can be used to improve the quality of care in Dutch MCs. Additionally, the findings will be compared with earlier results to investigate the development of MCs since 1998.Methods: A survey was sent in 1998, 2004, 2009, and 2017 to all operational Dutch MCs with questions about organization, collaboration, patients, and diagnostic procedures.Results: From 1998 to 2016, the number of MCs increased substantially from 12 to 91. The capacity increased from 1560 patients to 24,388. In 1998, most patients received a dementia diagnosis (85%), while in 2016, half of the patients were diagnosed with milder cognitive problems. MCs are more often part of regional care chains and are better embedded within regional care organizations. Diagnostic tools, such as blood tests (97%), neuropsychological assessment (NPA) (95%), and neuroimaging (92%), were used in nearly all MCs. The number of patients in whom these tools were used differed greatly between MCs (NPA: 5%-100%, neuroimaging: 10%-100%, and CSF: 0.5%-80%). There was an increase in the use of NPA, while the use of neuroimaging, CSF, and EEG/ECG decreased by 8% to 15% since 2009.Conclusions: Since 1998, MCs have developed substantially and outgrown the primarily research-based university settings. They are now accepted as regular care facilities for people with cognitive problems. [ABSTRACT FROM AUTHOR]

Background: This study is part of the Research to Assess Policies and Strategies for Dementia in the Young project. Information about specific needs in young onset dementia (YOD) will provide the basis for the development of an e-health intervention to assist caregivers in coping with YOD in several European countries.Objective: The aim was to investigate the issues caregivers of people with YOD face.Methods: A qualitative content analysis method was used to analyse interviews with YOD caregivers. Quantitative data of the Needs in Young Onset Dementia study were used to select caregivers based on a ranking of unmet needs, to capture differences and similarities between caregivers that experienced high levels of unmet needs versus those with low levels of unmet needs. Needs were assessed with the Camberwell Assessment of Needs in the Elderly.Results: Findings revealed the following themes: (i) acceptance; (ii) perception of the relationship; (iii) role adaptation; (iv) Availability of appropriate services; (v) social support; and (vi) awareness in the person with dementia and acceptance of help. Several factors seemed more apparent in the caregivers who experienced few unmet needs opposed to the caregivers who experienced more unmet needs.Conclusion: The current study provides an in-depth perspective on the caregiver's experiences and emphasizes specific themes that could be addressed in future interventions. This might contribute to a caring situation in which the caregiver experiences less unmet needs. Copyright © 2017 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objective: Modifiable risk factors for dementia were recently identified and compiled in a systematic review. The 'Lifestyle for Brain Health' (LIBRA) score, reflecting someone's potential for dementia prevention, was studied in a large longitudinal population-based sample with respect to predicting cognitive change over an observation period of up to 16 years.Methods: Lifestyle for Brain Health was calculated at baseline for 949 participants aged 50-81 years from the Maastricht Ageing Study. The predictive value of LIBRA for incident dementia and cognitive impairment was examined by using Cox proportional hazard models and by testing its relation with cognitive decline.Results: Lifestyle for Brain Health predicted future risk of dementia, as well as risk of cognitive impairment. A one-point increase in LIBRA score related to 19% higher risk for dementia and 9% higher risk for cognitive impairment. LIBRA predicted rate of decline in processing speed, but not memory or executive functioning.Conclusions: Lifestyle for Brain Health (LIBRA) may help in identifying and monitoring risk status in dementia-prevention programmes, by targeting modifiable, lifestyle-related risk factors. Copyright © 2017 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objective: When it comes to dementia, caregiving can have adverse effects on the psychological and physical health of the informal caregiver. As yet, little is known about the impact of caring for a young dementia patient. This review provides an overview of the literature concerning the impact of early onset dementia (EOD) on informal caregivers and on children of EOD patients. The available literature comparing the impact on EOD and late onset dementia (LOD) caregivers will also be provided. Methods: PubMed, Psychinfo, and Cinahl were searched for articles that considered the psychological or psychosocial impact of EOD on informal caregivers and children. The methodological quality of the studies was assessed in order to make better judgments about the value of each article. Results: Seventeen articles were included, of which the overall methodological quality was limited. The results showed that EOD caregivers experienced high levels of burden, stress, and depression. When compared with LOD caregivers, results were inconclusive. Furthermore, the caregivers of EOD patients experienced a variety of psychosocial problems, including relational problems, family conflict, problems with employment, financial difficulties, and problems concerning diagnosis. Conclusions: Whether there is a difference in impact between EOD and LOD on caregivers is still unclear. The studies conducted are methodologically too limited to answer this question. Nevertheless, it is clear that EOD caregivers do seem to experience high levels of psychological suffering and specific problems related to their phase in life. [ABSTRACT FROM AUTHOR]

Background Examination of clinical practice reveals that current treatment options are often not sufficiently utilized by patients suffering from dementia or mild cognitive impairment. Objective This study aimed to investigate to what extent and in what way these patients utilize the available treatment options, as well as to identify factors and reasons that play a role in the non-utilization of these options. Methods Semi-structured interviews by telephone were held with the patients' caregivers. Results Counseling, medication, activities and home care were the options that were most frequently utilized by the 252 patients and caregivers who were included in the study. Group guidance and admissions were the main treatment categories that had not been utilized (although they were proposed). The most important reasons given were refusal by the patient and the fact that help was not necessary yet according to the caregiver. Burden of care and cognition were the most important factors in predicting which of the treatment options were not utilized. Conclusions Most patients and caregivers are not aware of the treatment options available to them. Awareness of these options is necessary to avoid situations in which patients and caregivers find themselves with their backs against the wall and the need for care support has become an acute necessity. Health care professionals should play an important role with regard to this empowerment. Copyright © 2010 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background Nursing home residents needing both psychiatric care and nursing home care for either somatic illness or dementia combined with psychiatric disorders or severe behavioural problems are referred to as Double Care Demanding patients, or DCD patients. Integrated models of care seem to be necessary in order to improve the well-being of these residents. Objectives Two research questions were addressed. First, which integrated interventions combining both psychiatric care and nursing home care in DCD nursing home residents are described in the research literature? And second, which outcomes of integrated interventions combining both psychiatric care and nursing home care in DCD nursing home residents are reported in the literature? Method A critical review of studies was done that involved integrated interventions combining both psychiatric care and nursing home care on psychiatric disorders and severe behavioural problems in nursing home patients. A systematic literature search was performed in a number of international databases. Results Eight intervention trials, including four RCTs (2b level of evidence), were identified as relevant studies for the purpose of this review. Seven studies, three of which were RCTs, showed beneficial effects of a comprehensive, integrated multidisciplinary approach combining medical, psychiatric and nursing interventions on severe behavioural problems in DCD nursing home patients. Conclusions Important elements of a successful treatment strategy for DCD nursing home patients include a thorough assessment of psychiatric, medical and environmental causes as well as programmes for teaching behavioural management skills to nurses. DCD nursing home patients were found to benefit from short-term mental hospital admission. This review underlines the need for more rigorously designed studies to assess the effects of a comprehensive, integrated multidisciplinary approach towards DCD nursing home residents. Copyright © 2009 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background Although several studies have mentioned associations between neuropsychiatric symptoms, there have been no prospective studies determining interrelations among behavioural sub-syndromes. Objectives To investigate the influence of several clinical variables on the course of neuropsychiatric symptoms, and to determine interrelationships between the behavioural sub-syndromes. Methods One hundred and ninety-nine patients with dementia were assessed every six months for two-years, using the Neuropsychiatric Inventory (NPI) to evaluate neuropsychiatric symptoms. Results Age, sex, and socioeconomic status were not associated with a specific neuropsychiatric symptom. Greater cognitive impairment was related to more severe psychosis, and dementia stage influenced the course of total NPI problems. There were strong interrelations among most behavioural sub-syndromes. The sub-syndrome hyperactivity was of influence on the development of psychosis, but not vice versa. Neither was the sub-syndrome mood/apathy of influence on the course of psychosis. Conclusions While different neuropsychiatric symptoms have their own specific correlates, there is a strong interrelationship between behavioural sub-syndromes. The data have implications for clinicians and the nosology of neuropsychiatric symptoms in dementia. Copyright © 2005 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background Although neuropsychiatric symptoms in dementia are common, there have been few large long-term prospective studies assessing the course of a broad range of neuropsychiatric symptoms in dementia. Objectives To investigate the course of neuropsychiatric symptoms in patients with dementia, including data about prevalence, incidence and persistence. Methods One hundred and ninety-nine patients with dementia were assessed every six months for two-years, using the Neuropsychiatric Inventory (NPI) to evaluate neuropsychiatric symptoms. Results Nearly all patients (95%) developed one or more neuropsychiatric symptoms in the two-year study period. Mood disorders were the most common problem. The severity of depression decreased, whereas the severity of apathy and aberrant motor behaviour increased during follow-up. The cumulative incidence was highest for hyperactive behaviours and apathy. Overall behavioral problems were relatively persistent, but most symptoms were intermittent, with apathy and aberrant motor behaviour being persistent for longer consecutive periods. Conclusions Neuropsychiatric symptoms in dementia are a common and major problem. Different symptoms have their own specific course, most of the time show a intermittent course, but behavioural problems overall are chronically present. The data have implications for developing treatment strategies. Copyright © 2005 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objectives Little is known about the effectiveness of caregiver management strategies on the functioning of the demented patient. However, identification of specific caregiver strategies may provide useful information on the management and manifestation of behavioural problems in dementia. Methods Ninety-nine patients with dementia and their informal caregivers were followed up for one year. Interviews were used to assess differences in caregiver management strategies. Behavioural disturbances in the patient were measured with the Neuropsychiatric Inventory (NPI). Repeated measures analysis were carried out to investigate the relationship between caregiver management strategies and patient behaviour. Results Three caregiver management strategies were identified, based on whether caregivers accepted, or not, the caregiving situation and dementia related problems. Caregivers characterized by non-acceptance were typified as ‘Non-adapters’; caregivers characterized by acceptance were further subdivided into two groups typified as ‘Nurturers’ and ‘Supporters’. Caregiver characteristics such as sex, education and personality were important determinants of management strategies. MANOVA showed that non-adapters reported significantly more hyperactivity symptoms in patients and felt less competent than did supporters. Conclusions Caregiver management strategies would appear to be associated with behavioural problems in dementia, and are important in predicting patient behaviour and caregiver burden. Intervention programmes should aim at teaching caregivers adequate management strategies. Copyright © 2004 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Objectives To investigate the relationship between behavioural problems in patients with dementia and changes in the marital relationship. Methods Fifty-three spouse caregivers of patients with dementia participated in the study. Questionnaires and interviews were used to examine caregiver perception of changes in the quality of their relationship. Behavioural disturbances in the patient were measured with the NeuroPsychiatric Inventory (NPI). Results Caregivers experienced a deterioration of their relationship, yet at the same time most felt closer to their spouse now than in the past. Regression analysis revealed that patient behavioural problems were, independent of patient cognitive status or functional impairment, associated with deterioration in the quality of the relationship between patient and caregiver. Patient apathy rather than depressive mood was associated with this deterioration. Apathy diminished the amount and reciprocity of interactions between partners. Conclusions These results show that passive behaviour rather than excessive behaviour has most impact on the deterioration of the marital relationship. Intervention programmes should target relationship problems when problem behaviour, especially apathy, is present in patients with dementia. Copyright © 2003 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]