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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]

Introduction: Reliable data on the incidence rates for young‐onset dementia (YOD) are lacking, but are necessary for research on disease etiology and to raise awareness among health care professionals. Methods: We performed a systematic review and meta‐analysis on population‐based studies on the incidence of YOD, published between January 1, 1990 and February 1, 2022, according to Meta‐analyses of Observational Studies in Epidemiology (MOOSE) guidelines. Data were analyzed using random‐effects meta‐analyses. Results were age‐standardized, and heterogeneity was assessed by subgroup analyses and meta‐regression. Results: Sixty‐one articles were included. Global age‐standardized incidence rates increased from 0.17/100,000 in age 30 to 34 years, to 5.14/100,000 in age 60 to 64 years, giving a global total age‐standardized incidence rate of 11 per 100,000 in age 30 to 64. This corresponds to 370,000 new YOD cases annually worldwide. Heterogeneity was high and meta‐regression showed geographic location significantly influenced this heterogeneity. Discussion: This meta‐analysis shows the current best estimate of YOD incidence. New prospective cohort studies are needed. [ABSTRACT FROM AUTHOR]

Objectives: Dementia at a young age differs from late onset dementia in pathology and care needs. This requires further research to improve the understanding of this group, support and service provision. Aim of current study is to reach consensus on the terminology and operational definition (i.e., age-related criteria and possible causes) of dementia at a young age, to aid further research.Methods: A classical Delphi technique was used to transform opinions into group consensus by using an online survey. In three rounds statements regarding (1) terminology, (2) age-related criteria, and (3) aetiologies that can be considered as causes of dementia at a young age were sent to international experts in the field to give their opinions and additional comments on the statements.Results: Forty-four experts responded and full consensus was reached on 22 out of 35 statements. Young-onset dementia emerged as the term of preference. Provisional consensus was found for the use of age 65 at symptom onset as preferred cut-off age. Consensus was reached on the inclusion of 15 out of 22 aetiologies and categories of aetiologies as potential cause for dementia at a young age.Conclusions: A clear term and operational definition have been reached. Although beneficial for conducting future research to gain more insight in pathology and care needs of young people living with dementia, still consensus about some details is lacking. To reach consensus about these details and implications for use in research and clinical practice, the organisation of an in person consensus meeting is advised. [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]

Background: Although dementia is often associated with old age, it also occurs below the age of 65. People with so called young‐onset dementia (YOD) have different needs compared to people with late‐onset dementia (LOD), however, most health care facilities are primarily directed at older patients. Accurate numbers of the prevalence of YOD are necessary to determine the required budget, set priorities by policy makers and ensure sufficient and appropriate health care. Method: In this study we investigated the 1 year prevalence of YOD in two predefined catchment areas in the Netherlands: an urban and a rural area, together representative for the Dutch population. We recruited health care professionals working with individuals with YOD (case managers, neurologists, psychologists, psychiatrists and nursing home staff) and asked them to register each YOD patient they encountered. Cases were included if persons had a diagnosis of YOD before the age of 70 or displayed symptoms before the age of 65, and lived within the catchment area. The collection of minimal personal identifiers per patient resulted in a unique personal code, which was used to prevent double counting. Result: Health care professionals registered 409 individuals with YOD within the urban area and 209 individuals within the rural area, which translates to respectively 41.5 and 36.6 per 100.000 population in the group aged 30 to 65 years. Alzheimer disease was the most common diagnosis (52,3% and 53,8%), followed by vascular dementia (26,3% and 11,2%) and frontotemporal dementia (7,3% and 8.6%). Other characteristics such as living situation, as well as cultural background will be analyzed. Conclusion: Preliminary data point out that the prevalence of people with YOD in the Netherlands is between 36.6 and 41.5 per 100.000 population. This prospective case finding study also shed light on methodological issues in prevalence research. Advantages are a more accurate case finding. Disadvantages are higher costs and a great dependency on other health care professionals. [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: 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: Young‐onset dementia (YOD) denotes persons who have an onset of the disease before the age of 65. Information on the epidemiology of YOD, especially the incidence, is scarce. Insight into the incidence can contribute to further research on the etiology, mechanism and risk factors of YOD. Therefore, we aimed to conduct a systematic review and meta‐analysis collecting all published data on the incidence of YOD worldwide. Method: This systematic review and meta‐analysis was conducted using the PRSIMA guidelines. A thorough literature search was performed in PubMed, Embase, CINAHL and PsychINFO. Eligible studies were prospective or retrospective population‐based studies reporting on the incidence of dementia under the age of 65. No restrictions on language were applied, and studies published between 1990 and March 2020 were screened. Random‐effect meta‐analyses were used to pool 5‐year incidence rates together. Incidence rates were age‐standardized for the World Standard Population whenever possible. Subgroup analyses and meta‐regression were used to identify factors influencing heterogeneity between studies. The study is registered with PROSPERO, number CRD42019119288. Result: 50 articles were included in the systematic review, of which 42 were included in the meta‐analysis. Studies were mostly conducted in Europe, with few studies from North America, Asia and Oceania. Age‐standardized incidence rates of YOD increased from 0.15/100,000 in the age group 30‐34 years, to 4.83/100,000 in the age group 60‐64 years, resulting in an overall incidence rate of 11/100,000 in the total age group 30‐64. This corresponds to 360,000 new cases globally per year. Heterogeneity between studies was high. Subgroup analyses showed incidence rates between males and females were similar. Meta‐analyses of different dementia subtypes showed incidence was highest for Alzheimer's disease, followed by vascular dementia and frontotemporal dementia. Meta‐regression showed geographic location of the studies significantly influenced heterogeneity. Conclusion: This review showed current age‐standardized incidence rates of YOD are estimated to be 11/100,000 person‐years. However, there are still knowledge gaps to address in future research, such as differences in incidence by ethnicity and subtypes of dementia. [ABSTRACT FROM AUTHOR]

Background: The disease trajectory of patients with young onset dementia differs from older patients, as do healthcare requirements. To improve specialized care, more insight in young onset dementia is crucial. The aim of PRECODE‐GP is therefore 1) to conduct an (annual) inventory of the diagnostic workup in all memory clinics in the Netherlands, and 2) to set up a prospective nationwide database including newly diagnosed younger patients with dementia. Methods: PRECODE‐GP is part of the PRECODE project, a collaboration between four Dutch Alzheimer centers, Knowledgecenter Dementia at Young Age, Nivel and Alzheimer Nederland. Governance is embedded in the Dutch Memory Clinic Network. Memory clinics are asked annually to fill out a survey on their current diagnostic workup. Eligible patients (<70 years; any type of dementia) are identified by local specialists and recruited via an informed consent procedure providing consent for future linkage to other datasets. Demographics, test results and (etiological) diagnosis are collected in an online database. Results: PRECODE‐GP was initiated in July 2019 and has been approved in 36 memory clinics, approval procedure is ongoing in additional 10 clinics. Based on the annual survey (filled out by 21 clinics), standard imaging of the brain occurs in almost half of memory clinics and neuropsychological examination in one third. CSF is performed when deemed necessary by the clinician. A median 250(141‐396) new patients visited the memory clinics yearly, of whom 111(74‐180)(48%) were diagnosed with dementia and 12(4‐36)(6%) were <70 years. To date, 201 young onset dementia patients (age 62±8, 51% female, MMSE 22±5) are included in our prospective database, diagnosed with 140(69%) Alzheimer's dementia (AD), 29(14%) frontotemporal dementia (FTD), 14(7%) dementia with Lewy Bodies (DLB) and 18(9%) other dementia types. Patients with FTD were youngest (61±6 years), subjects with DLB were most often male (79%), in AD MMSE was lowest (21±5). Conclusion: We took the first step to include patients with young onset dementia via all Dutch memory clinics. As a next step, we plan to link data to existing registries, to gain valuable knowledge on disease trajectories. All needed to improve quality of life for patients with young onset dementia. [ABSTRACT FROM AUTHOR]

Objective: In this review, the care needs and experiences with the use of available services of individuals with young-onset dementia (YOD) and their caregivers were investigated. This knowledge is an important prerequisite for the development of appropriate interventions and personalized care to address their specific needs and problems.Design: A systematic literature search was performed in PubMed, Psycinfo and Cinahl. A quality checklist for observational and qualitative studies was used to appraise the methodological quality of the studies.Results: Twenty-seven studies were included, and a synthesis of the literature revealed six themes. The first theme concerned problems in the diagnostic period. Early recognition and referral was reported as an essential area that required improvement in order to obtain appropriate help in time. The second theme discussed the need for information about YOD and the availability of care throughout the caregiving trajectory. The third theme described barriers in access to care that hindered caregivers in finding the right services. The fourth theme showed the availability of appropriate services and specific unmet needs. The fifth theme illustrated that behavioural and personality changes pose a significant challenge for caregivers and other family members. The last theme showed the profound impact of YOD on caregivers.Conclusions: The literature indicates that people with YOD and their caregivers face a wide range of difficulties during the disease process. The reviewed studies provide an important foundation for knowledge and awareness about the specific care needs and experiences of people with YOD and their caregivers. Copyright © 2016 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]