Incidence of Resistive Behavior Adversely Affecting the Intake of Food and Fluids in Younger and Older People with Dementia

BackgroundScientific research on palliative care in dementia is still underdeveloped. In particular, there are no research studies at all on palliative care issues in young onset dementia (YOD), although significant differences compared to late onset dementia (LOD) are expected. Most studies have focused on persons with dementia in long term care (LTC) facilities but have neglected persons that are cared for at home. We hypothesize that unmet care needs exist in advanced and terminal stages of YOD and LOD and that they differ between YOD and LOD.Methods/designThe EPYLOGE-study (IssuEs in Palliative care for people in advanced and terminal stages of Young-onset and Late-Onset dementia in GErmany) aims to prospectively assess and survey 200 persons with YOD and LOD in advanced stages who are cared for in LTC facilities and at home. Furthermore, EPYLOGE aims to investigate the circumstances of death of 100 persons with YOD and LOD. This includes 1) describing symptoms and management, health care utilization, palliative care provision, quality of life and death, elements of advance care planning, family caregivers’ needs and satisfaction; 2) comparing YOD and LOD regarding these factors; 3) developing expert-consensus recommendations derived from the study results for the improvement and implementation of strategies and interventions for palliative care provision; 4) and communicating the recommendations nationally and internationally in order to improve and adapt guidelines, to change current practice and to give a basis and perspectives for future research projects. The results will also be communicated to patients and their families in order to counsel and support them in their decision making processes and their dialogue with professional caregivers and physicians.DiscussionEPYLOGE is the first study in Germany that assesses palliative care and end-of-life issues in dementia. Furthermore, it is the first study internationally that focuses on the specific palliative care situation of persons with YOD and their families. EPYLOGE serves as a basis for the improvement of palliative care in dementia.Trial registrationThe study is registered in ClinicalTrials.gov (NCT03364179; Registered: 6. December 2017.

BackgroundCurrent physical activity literature does not distinguish between young (dementia diagnosed before 65) and late onset dementia despite differences between these groups such as age, being known to influence physical activity levels.ObjectiveThe primary aim was to compare objective physical activity levels between people with young onset dementia, late onset dementia, and age-matched control participants without dementia.MethodsThis cross-sectional analysis included four groups (young onset dementia [n = 23]; young onset control [n = 782]; late onset dementia [n = 30]; late onset control [n = 918]) of participants aged 49 to 76 (56% male) from the UK Biobank. Objective light intensity physical activity, moderate-vigorous intensity physical activity, sedentary behavior, and sleep were measured using 7-day wrist-worn accelerometry.ResultsPeople with young onset dementia did more light and moderate-vigorous intensity physical activity than those with late onset dementia, with these differences becoming nonsignificant when controlling for age. There were no significant differences between people with young onset dementia and the young onset control group. Comparatively, people with late onset dementia did less light intensity physical activity and spent more time sedentary and sleeping than the late onset control group.ConclusionsThis study highlights the distinct physical activity levels of people with young onset and late onset dementia. Future physical activity research should distinguish between young onset and late onset dementia. Such an approach will be important for producing findings that are more applicable for individuals diagnosed with dementia at all stages of life.

Background: Young onset dementia (YOD) is a diagnosis given when the neurocognitive process sets in before 65 years age. The YOD dementia process poses specific challenges related to financial issues, work and social demands, marriage, and parenthood, including losses and shifting roles, care responsibilities, as well as prospects for the future. Those challenges might account for the difference in awareness between YOD and late onset dementia (LOD). Awareness can be defined as the recognition of changes caused by deficits related to the disease process, which may include the ability to recognize a specific deficit, the emotional response to the difficulties presented and the ability to understand the impact of the disease in activities of daily living Objectives: This study is designed to investigate differences in awareness of cognitive functioning and health condition, functional activity impairments, emotional state, and social functioning and relationships among people with young onset (YOD) and late onset dementia (LOD); and examine associations between awareness and its domains with cognition, functionality, neuropsychiatric symptoms, social and emotional functioning and quality of life (QoL) in both groups. Methods: This is a cross-sectional design study. A group of 136 people with dementia and their respective caregivers (YOD = 50 and LOD = 86) were consecutively selected from an Alzheimer’s disease outpatient unit in Rio de Janeiro, Brazil. We assessed awareness of disease, dementia severity, cognition, functionality, neuropsychiatric symptoms, social and emotional functioning, and quality of life. Results: People with YOD were more aware of disease (total score), more aware of their cognitive functioning and health condition and of their functional activity impairments than people with LOD, even if this group was more severely cognitive impaired and had a worse level of functionality than LOD group. Besides, people with YOD had more neuropsychiatric symptoms than people with LOD. Multivariate linear regressions showed that functionality has a wide relationship to awareness for people with YOD. While neuropsychiatric symptoms and quality of life has a greater relation to awareness for people with LOD. Conclusions Different clinical variables are associated to different domains in YOD and LOD groups, reinforcing the heterogeneity of awareness in dementia.

BackgroundMost epidemiological studies on dementia in China have focused on the elderly population, with a lack of systematic comparisons between the burden of young-onset dementia (YOD) and late-onset dementia (LOD).MethodsBased on data from the Global Burden of Disease (GBD) study, this research systematically evaluated changes in the burden of YOD and LOD in China over different time periods. The analysis employed average annual percentage change (AAPC), Bayesian age-period-cohort (BAPC) modeling, decomposition analysis, risk factor attribution analysis, health inequality analysis, and frontier analysis.ResultsAAPC analysis showed that the growth rate of YOD has significantly outpaced that of LOD since 2012. Forecasting results indicated that the age-standardized rates for both YOD and LOD are expected to continue rising in the future. Decomposition analysis revealed that between 1990 and 2021, the main drivers of the increasing YOD burden shifted from population growth to epidemiological changes and population aging, whereas population growth remained the dominant driver for LOD. Risk factor analysis indicated that the impact of high BMI on both YOD and LOD has become increasingly pronounced. Health inequality and frontier analyses suggested that, although disparities in YOD and LOD burden across different SDI regions were not significant, there remains substantial room for improvement in managing both conditions in China.ConclusionIn recent years, YOD has exhibited a more rapid increase compared to LOD, with its driving forces gradually shifting from population-related factors to epidemiological transitions. This highlights the need to strengthen identification and intervention strategies targeting younger and middle-aged populations. Tobacco use, high fasting plasma glucose, and high BMI are key modifiable risk factors shared by both YOD and LOD, with particular attention needed on the sustained impact of high BMI. Although international disparities in health inequality are not pronounced, China still holds considerable potential for improvement in the prevention and control of both YOD and LOD. Future interventions should be more forward-looking, systematic, and tailored to specific population groups.

Young-onset dementia (YOD) is defined as the onset of dementia symptoms before the age of 65 years and accounts for 2-8% of dementia. YOD patients and their caregivers face unique challenges in diagnosis and management. We aimed to compare the characteristics of rural YOD and late-onset dementia (LOD) patients at a rural and remote memory clinic in Western Canada. A total of 333 consecutive patients (YOD = 61, LOD = 272) at a rural and remote memory clinic between March 2004 and July 2016 were included in this study. Each patient had neuropsychological assessment. Health, mood, function, behaviour and social factors were also measured. Both groups were compared using χ2 tests and independent sample tests. YOD patients were more likely to be married, employed, current smokers and highly educated. They reported fewer cognitive symptoms, but had more depressive symptoms. YOD patients were less likely to live alone and use homecare services. YOD caregivers were also more likely to be a spouse and had higher levels of distress than LOD caregivers. Both YOD and LOD patient groups were equally likely to have a driver's licence. Our findings indicate YOD and LOD patients have distinct characteristics and services must be modified to better meet YOD patient needs. In particular, the use of homecare services and caregiver support may alleviate the higher levels of distress found in YOD patients and their caregivers. Additional research should be directed to addressing YOD patient depression, caregiver distress and barriers to services.

Young-onset dementia, defined as dementia diagnosed before the age of 65, is characterized by diverse symptoms and a high likelihood of misdiagnosis. Individuals diagnosed with young-onset dementia often face challenges such as early retirement and financial strain, leading to a significant burden for primary caregivers. Although previous studies have documented differences in caregiver burden and family care needs between patients with young-onset and late-onset dementia, few have analyzed both groups concurrently. Similar the state of international research, few studies have examined these aspects concurrently in Taiwan. This study was designed to compare the family care needs and caregiver burdens associated with patients with young-onset and late-onset dementia. This cross-sectional study employed convenience sampling. The participants were categorized into young-onset (less than 65 years old) and late-onset (65 years old or older) caregiver groups. Study data were collected using a self-administered questionnaire that included a primary caregiver and patient characteristics datasheet, the Zarit Burden Interview measure, and the Assessment Tool for Family Care Needs of Dementia. One hundred and five primary caregivers of dementia patients were enrolled as participants. Total care needs, the five care-need subscales (i.e., language and communication, activities of daily living, behavioral and psychological symptoms, care stress, and obtaining resources), and caregiver burden levels were found to be significantly higher in the young-onset group than the late-onset group. Further analysis revealed significantly positive correlations between both behavioral and psychological symptoms and caregiver burden in the young-onset dementia group. Conversely, in the late-onset dementia group, caregiver burden was found to be significantly associated with language, communication, and activities of daily living. Furthermore, age in young-onset dementia patients was found to correlate significantly and negatively with caregiver burden. Significant differences in family care needs and primary caregiver burden were found between the young-onset and late-onset dementia groups, with the former associated with greater caregiving needs and burdens. Long-term care services should be extended to patients with dementia who do not have an officially recognized disability certificate and below the age of 50. These services should be tailored to meet individual needs, equip caregivers with essential caregiving skills, and provide targeted support.

Predictors of the Time to Institutionalization in Young- Versus Late-Onset Dementia: Results From the Needs in Young Onset Dementia (NeedYD) Study

Awareness of disease is the ability to acknowledge changes caused by deficits related to the disease process. We aimed to investigate whether there are differences in awareness of disease between young-onset dementia (YOD) and late-onset dementia (LOD) and examined how awareness interacts with cognitive and clinical variables. Using a cross-sectional design, 49 people with YOD and 83 with LOD and their caregivers were included. We assessed awareness of disease, cognition, functionality, stage of dementia, mood, neuropsychiatric symptoms, and caregivers' quality of life (QoL) and burden. We found that people with YOD were more aware of the disease than people with LOD (P<0.005). Multivariate linear regression revealed that higher impairment in functional level was associated with unawareness in both groups (YOD=P<0.001; LOD=P<0.001). In the YOD group, preserved awareness was related to worse self-reported QoL (P<0.05), whereas, in LOD, deficits in awareness were related to caregivers' worst perceptions about people with dementia QoL (P<0.001). The findings highlight the distinct nature of awareness between YOD and LOD. The YOD group had higher levels of disease awareness compared with the LOD group, even though the first group had a greater impairment in functionality.

There is an increase in prevalence of young onset dementia (YOD). The specific problems among YOD patients and levels of caregiver burden (CB) in this group warrants further evaluation. To evaluate and compare level of CB in YOD and late onset dementia (LOD). Also, we sought to understand the specific factors, such as neuropsychiatric symptoms, that may affect the levels of caregiver burden in the YOD group. Patient-caregiver dyads with YOD and LOD were recruited from a tertiary neurology center. Levels of CB between YOD and LOD were compared among 183 patient-caregiver dyads. CB was quantified using the Zarit Burden Inventory (ZBI). Neuropsychological evaluations as well as the Neuropsychiatric Inventory were performed. Factors that influenced level of CB in YOD group was investigated with regression analyses. There were 57 YOD and 126 LOD dyads. Caregivers of YOD subjects reported significantly higher levels of burden compared to caregivers of LOD subjects (ZBI: 17.3 versus 13.94; p = 0.015). 52.6% of YOD caregivers reported a high caregiver burden. When compared to caregivers of LOD, the odds of a caregiver of YOD reporting high caregiver burden was 2.34 (95% CI: 1.22-4.49: p = 0.010). YOD dyads with a high caregiver burden had significantly higher neuropsychiatric inventory scores. Risk factors for high caregiver burden in YOD included family history of dementia and behavioral symptoms including disinhibited behavior, delusions, and apathy. Targeted support for caregivers of patients with YOD is needed to address the higher CB in this group.

Background:Advanced stages of dementia are characterized by severe cognitive and physical impairment. It has not yet been investigated whether persons with young onset dementia (YOD) and late onset dementia (LOD) differ in advanced disease stages.Objectives:To compare quality of life (QoL) between persons with advanced YOD and LOD; to explore the determinants of QoL; to investigate whether YOD and LOD differ with regard to symptoms and care.Methods:The study was performed in the context of EPYLOGE (IssuEs in Palliative care for persons in advanced and terminal stages of YOD and LOD in Germany). Persons with advanced dementia (PWAD) were assessed and caregivers were interviewed. QoL was measured with the proxy rating Quality of Life in Late Stage Dementia (QUALID) scale.Results:93 persons with YOD and 98 with LOD were included. No significant differences in QoL were detected. Determinants of QoL were similar in YOD and LOD. Behavioral and psychological symptoms of dementia (BPSD), suffering and other distressing symptoms were associated with a lower QoL. In YOD but not in LOD antipsychotic treatment was associated with low QoL. The group of persons who were younger than 65 years at the time of the study visit experienced significantly more distressing symptoms than older PWAD.Conclusion:Overall, persons with advanced YOD do not appear to be disadvantaged compared to old and oldest PWAD. Special attention, however, must be paid to the group of the very young persons who seem to be particularly vulnerable.

Impairment in Awareness and its Domains Vary According to the Age at Onset of Dementia

Nursing Staff Distress Associated With Neuropsychiatric Symptoms in Young-Onset Dementia and Late-Onset Dementia

We think of dementia as an illness of the old. Regan described the senility of her father, King Lear, as “the infirmity of his age.”1However, dementia can affect younger ormiddleaged adults. Approximately 200000Americans younger than 65 years have dementia.2 Young-onset dementia (YOD) represents 4% to 10%of all dementia cases.2 By convention, YOD is defined as dementia occurring before age 65 years, although this age criterion is a sociological construct. Thediagnosis of YOD is challenging. Young-onset dementia constitutes a heterogeneous groupof disorders. The broad differential diagnosis includes metabolic, genetic, neurodegenerative, infectious, cerebrovascular, autoimmune, and inflammatorydisorders.AdultswithYODcommonlyundergoextensive testing.However,nocause is identified in roughly20% to40%of cases.3,4 Thesediagnostic challenges aremajor concerns for patients with YOD and their families.4 Because of remarkable scientific advances,wenowknow more about the basis of YOD. The identification of several genetic mutations has improved our understanding of the neurobiologic featuresandpathogenesisofYODand late-onsetdementia. We can now apply information from genetics, functionalbrain imaging, and neuropathology to the bedside and correlate these data with the neurologic signs, systemic manifestations, cognitive impairments, and behavioral abnormalities of patients with YOD. Still, there is much about YOD that we do not know. Despite these advances, we cannotpredictwhowill developYODformany individuals and families. ThearticlebyNordstromandcolleagues5providesnew insights about potential risk factors for YOD. The investigators determinedwhether risk factors in lateadolescence (meanage, 18 years) were associated with incident YOD among 488 000 men conscripted for mandatory military service from 1969 through 1979 in Sweden, a countrywithuniversal health care. Information fromstandardized cognitive andphysical examinations performed at the time of conscription was linked to longitudinal administrative data on hospital discharges, demographics,parentalhistoryofdementia,medicationuse, and deaths. The investigators validated the diagnosis of dementia in approximately 95% of cases in a subsample. In thatpopulation,487menwerediagnosedashavingYOD at a median age of 54 years. Median follow-up was 37 years. Three risk factors in late adolescence predicted incident YOD: low level of cognitive function, low height, and high systolic blood pressure. Six additional predictors included paternal dementia, and the occurrence of alcohol or other drug intoxication, stroke,useofantipsychotics, anddepressionduring follow-up. These 9 risk factors explained 68% of the populationattributable risk of YOD. Premorbid cognition and other risk factorsoperated independently to increase theriskofYOD.Men whohadthecombinationof lowbaselinecognitivefunctionand at least 2 risk factors were atmarkedly increased risk of developing YOD (hazard ratio, 20.37). The study has a novel finding. Independent of stroke, higher systolic blood pressure in late adolescence increased theriskof incidentYOD.Althoughstudieshaveestablishedthat highbloodpressure inmidlife is associatedwith late-onsetdementia, studies have not found consistently that high blood pressure in childhood or young adulthood is associated with cognitiveperformanceordementia inmidlife.The finding that high systolic blood pressure in late adolescence is associated with an increased risk of YOD, if confirmed, provides a potential target for intervention studies to prevent YOD and possibly late-onset dementia. Somepreviousdata are confirmedby this study. Lowcognitive performance is associated with late-onset dementia in older adults. Stroke, alcohol or other drug intoxication, and familyhistory of dementia predict YOD.Adolescentswith low heightmayhaveagreater riskofYODbecause their brainsmay be less developed.6 The study also generates somenewquestions.Dodepressionandantipsychoticuserepresent risk factors forYOD,symptoms of YOD, or primary psychiatric disease (and a misdiagnosis ofYOD)?What fetal or early childhoodexposuresmodify the risk of having low cognitive function in late adolescence? Is high blood pressure a modifiable risk factor for YOD? Nordstrom and colleagues5 challenge us to consider the noninherited factors, such as high blood pressure, that may exacerbate genetic, neurodegenerative, or metabolic processes that cause incident YOD. Do some adults who develop YOD have an unidentified vulnerability to dementia because of factors related to genetics, neurobiologic characteristics, or early life development? Do these at-risk adults develop dementia after acquiring a second“hit” or insult that injures vulnerable brain structures or cognitive pathways?What are the pathogenic mechanisms that converge to cause YOD? The study has several strengths. This longitudinal study has information on risk factors from the physical examination, cognitiveperformance, family andmedical histories, and medicationprescriptions because it combinesunique sources of national data. Few population-based studies of YOD have been performed. The study by Nordstrom et al5 appears representative of the larger population of Swedish men because it captures data on nearly all men eligible for military service andmost episodes of inpatient care. The diagnosis of dementia had high sensitivity in a medical record review of a subsample, although diagnostic criteria are not given. The number of dementia cases was large. Related article page 1612 Risk Factors for Young-Onset Dementia in Men Original Investigation

Young onset dementia (YOD) presents in individuals who are economically productive and socially active. While the cost related to dementia in the elderly has been widely studied, the cost related to YOD is largely unknown. To study the economic burden of community dwelling YOD in relation to late onset dementia (LOD) and cost of YOD based on etiology. In this prospective cross-sectional study of 255 patients attending a tertiary neurology center, data on economic burden, clinical features, and caregiver burden were collected using structured financial questionnaire, standard cognitive and neuropsychiatric measures, and Zarit caregiver burden scale. Cost components were grouped into those relating to direct medical costs, direct non-medical costs, and those related to indirect costs. Cost was also categorized based on etiology of YOD. The mean age at symptom onset in the YOD and LOD cohort was 57.0 (SD 5.1) and 75.0 (SD 5.9) years, respectively. The median annual cost for patients with YOD was almost twice that of LOD (USD 15,815 versus USD 8,396). Indirect cost contributed heavily to cost related to YOD. Even when grouped by dementia etiology, YOD patients with Alzheimer's disease, frontotemporal dementia (FTD), and vascular dementia had higher cost compared to their elderly counterparts. Young onset FTD had the highest cost. 43.2% of YOD reported loss of employment due to dementia, which was significantly higher than that in LOD (2.4%). Patients with YOD have a high economic burden. Young patients with FTD have the highest cost followed by vascular dementia and Alzheimer's disease.

AimDespite an estimated 40 000 people diagnosed with young onset dementia (YOD) in the UK, there is a general lack of awareness of the condition when compared with late onset...