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To evaluate the effectiveness of the SPAN-intervention, a psychosocial intervention aiming at improving a sense of usefulness and engaging in meaningful activities, for community-dwelling people living with young-onset dementia (YOD) and their family caregivers. A cluster-randomized controlled trial with two parallel groups (SPAN-intervention vs. care as usual) with assessments at baseline and five-month follow-up was performed. Sixty-one persons living with YOD and their family caregivers were included (SPAN-intervention group: n = 35; care as usual group: n = 26). Outcomes included, for the person living with YOD, empowerment (operationalized by self-management abilities using the SMAS-30; primary outcome), quality of life, neuropsychiatric symptoms, disability, apathy; and, for the family caregiver, quality of life, emotional distress, sense of competence. Data were analyzed using linear mixed models. We found no statistically significant effects of the SPAN-intervention on empowerment, nor on the secondary outcome measures for persons living with YOD or their family caregivers. Although the SPAN-intervention may provide concrete opportunities to engage in activities and stimulate reciprocity, such as meaningful social activities, this study did not demonstrate intervention effects. Additional qualitative evaluations may provide more insight into the implementation process and experiences of people living with YOD and their family caregivers. This trial was registered at ClinicalTrials.gov (NCT02937883). [ABSTRACT FROM AUTHOR]

Background: Neuropsychological feedback is an important part of the neuropsychological assessment process. However, patients have difficulties remembering this information.Objective: The aim of this study was to develop a web-based visual tool to improve the understanding of neuropsychological results, information retention, and psychologist-patient communication.Methods: The visual tool was developed and optimized using an iterative three-phase stepwise approach to determine its usability, technology acceptance, and feasibility in a memory clinic population. Feedback from different user perspectives (patients, family members, and psychologists) was obtained in each phase using a multimethod approach (e.g. a multidisciplinary brainstorm session, think-aloud sessions, focus groups). The prototype was subsequently tested in a pilot study.Results: The first phases offered insights that led to optimization of the prototype. On a scale ranging from 0 to 100, psychologists evaluated the usability as high [88.1±7.6,70-87]. During the pilot study, both patients and significant others gave positive feedback, but information retention in patients remained low. All participants thought the benefits of the visual tool included seeing cognitive strengths and weaknesses with a translation to daily life all at one glance and receiving feedback on paper to take home. Important barriers were mentioned by psychologists, such as a limited set of tests included and no integration with hospital systems.Conclusion: Overall, patients, family members, and psychologists reported that a visual display of the cognitive profile with insights into daily life had added value to clinical practice. Feedback from the pilot study was adopted in the tool for future implementation purposes. [ABSTRACT FROM AUTHOR]

Caring for a person with dementia can be challenging over the years. To support family carers throughout their entire caregiving career, interventions with a sustained effectivity are needed. A novel 6-week mobile health (mHealth) intervention using the experience sampling method (ESM) showed positive effects on carers' well-being over a period of 2 months after the intervention. In this study, the effects after 6 months of the selfsame intervention were examined to evaluate the sustainability of positive intervention effects. The 6-week mHealth intervention consisted of an experimental group (ESM self-monitoring and personalized feedback), a pseudo-experimental group (ESM self-monitoring without feedback), and a control group (providing regular care without ESM self-monitoring or feedback). Carers' sense of competence, mastery, and psychological complaints (depression, anxiety and perceived stress) were evaluated pre- and post-intervention as well as at two follow-up time points. The present study focuses on the 6-month follow-up data (n = 50). Positive intervention effects on sense of competence, perceived stress, and depressive symptoms were not sustained over 6-month follow-up. The benefits of this mHealth intervention for carers of people living with dementia were not sustained over a long time. Similarly, other psychosocial interventions for carers of people with dementia rarely reported long-lasting effects. In order to sustainably contribute to carers' well-being, researchers and clinicians should continuously ensure flexible adjustment of the intervention and consider additional features such as ad-hoc counseling options and booster sessions. In this regard, mHealth interventions can offer ideally suited and unique opportunities. [ABSTRACT FROM AUTHOR]

Background: It is uncertain whether self- and proxy-reported cognitive decline in older adults reflect an actual objective cognitive dysfunction in the clinical sense, and if these are predictive for developing dementia.Objective: The aim of the present study is to investigate the cross-sectional and longitudinal relation between subjective cognitive decline and objective cognitive performance, depressive symptoms, and to determine the predictive value for development of dementia.Methods: We included 405 patients without dementia at first visit from the Maastricht memory clinic participating in a longitudinal cohort study. Subjective cognitive decline was measured using a self- and proxy-report questionnaire. All patients underwent a standardized neuropsychological assessment. Follow-up assessments were performed yearly for three consecutive years, and once after five years.Results: Subjective cognitive decline was associated with lower cognitive performance and more depressive symptoms. When comparing self- (n = 342, 84%) and proxy-reported decline (n = 110, 27%), it was shown that proxy reports were associated with a more widespread pattern of lower cognitive performance. In participants without cognitive impairment proxy-reported decline was not associated with depressive symptoms. In contrast, self-reported decline was associated with a stable course of depressive symptoms at follow-up. Proxy-reported cognitive decline (HR = 1.76, 95% CI = 1.12- 2.78), and mutual complaints (HR = 1.73, CI:1.09- 2.76) predicted incident dementia while self-reported decline did not reach statistical significance (HR = 1.26, 95% CI = 0.65- 2.43).Conclusion: Proxy-reported cognitive decline was consistently associated with lower cognitive performance and conversion to dementia over 5 years. Self-reported cognitive decline in patients without cognitive impairment might indicate underlying depressive symptoms and thus deserve clinical attention as well. [ABSTRACT FROM AUTHOR]

Objective: The aims of the current study are (1) to explore the differences in neuropsychiatric symptoms (NPS) between young-onset dementia (YOD) and late-onset dementia (LOD), and (2) to investigate whether the possible differences can be attributed to differences in dementia subtype, gender, psychotropic drug use (PDU), or dementia severity. Method: Three hundred and eighty-six nursing home (NH) residents with YOD and 350 with LOD were included. Multilevel modeling was used to compare NPS between the groups. Furthermore, dementia subtype, gender, PDU, and dementia severity were added to the crude multilevel models to investigate whether the possible differences in NPS could be attributed to these characteristics. Results: Higher levels of apathy were found in NH residents with YOD. After the characteristics were added to the models, also lower levels of verbally agitated behaviors were found in YOD. Conclusion: We recommend that special attention be paid to interventions targeting apathy in YOD. Although no differences in other NPS were found, the PDU rates were higher in YOD, suggesting that the threshold for the use of PDU in the management of NPS is lower. This underscores the need for appropriate attention to non-pharmacological interventions for the management of NPS in YOD. [ABSTRACT FROM AUTHOR]

Background: The benefits of electronic health support for dementia caregivers are increasingly recognized. Reaching caregivers of people with early-stage dementia could prevent high levels of burden and psychological problems in the later stages.Objective: The current study evaluates the effectiveness of the blended care self-management program, Partner in Balance, compared to a control group.Methods: A single-blind randomized controlled trial with 81 family caregivers of community-dwelling people with mild dementia was conducted. Participants were randomly assigned to either the 8-week, blended care self-management Partner in Balance program (N=41) or a waiting-list control group (N=40) receiving usual care (low-frequent counseling). The program combines face-to-face coaching with tailored Web-based modules. Data were collected at baseline and after 8 weeks in writing by an independent research assistant who was blinded to the treatment. The primary proximal outcome was self-efficacy (Caregiver Self-Efficacy Scale) and the primary distal outcome was symptoms of depression (Center for Epidemiological Studies Depression Scale). Secondary outcomes included mastery (Pearlin Mastery Scale), quality of life (Investigation Choice Experiments for the Preferences of Older People), and psychological complaints (Hospital Anxiety and Depression Scale-Anxiety and Perceived Stress Scale).Results: A significant increase in favor of the intervention group was demonstrated for self-efficacy (care management, P=.002; service use P=.001), mastery (P=.001), and quality of life (P=.032). Effect sizes were medium for quality of life (d=0.58) and high for self-efficacy care management and service use (d=0.85 and d=0.93, respectively) and mastery (d=0.94). No significant differences between the groups were found on depressive symptoms, anxiety, and perceived stress.Conclusions: This study evaluated the first blended-care intervention for caregivers of people with early-stage dementia and demonstrated a significant improvement in self-efficacy, mastery, and quality of life after receiving the Partner in Balance intervention, compared to a waiting-list control group receiving care as usual. Contrary to our expectations, the intervention did not decrease symptoms of depression, anxiety, or perceived stress. However, the levels of psychological complaints were relatively low in the study sample. Future studies including long-term follow up could clarify if an increase in self-efficacy results in a decrease or prevention of increased stress and depression. To conclude, the program can provide accessible preventative care to future generations of caregivers of people with early-stage dementia.Trial Registration: Netherlands Trial Register NTR4748; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=4748 (Archived by WebCite at http://www.webcitation.org/6vSb2t9Mg). [ABSTRACT FROM AUTHOR]

Background: Caregivers of people with dementia (PwD) face burden, feelings of loneliness, and social isolation. Previous studies have shown promising effects of online e-health interventions. Using social media may facilitate support for dementia caregiver networks. In an iterative step-wise approach, a social support tool entitled "Inlife" was developed. This paper describes the design of a study evaluating the effects of Inlife and its process characteristics.Methods: A mixed-method, randomised controlled trial with 122 caregivers of PwD will be conducted. Participants will be assigned to either the Inlife social support intervention or a waiting-list control group. After 16 weeks, the control group will obtain access to the Inlife environment. Data will be collected at baseline (T0) and at 8-week (T1), 16-week (T2) and 42-week follow up (T3). The 16-week follow-up assessment (T2) is the primary endpoint to evaluate the results on the primary and secondary outcomes, measured by self-reported questionnaires. The primary outcomes include feelings of caregiver competence and perceived social support. The secondary outcomes include received support, feelings of loneliness, psychological complaints (e.g., anxiety, stress), and quality of life. A process evaluation, including semi-structured interviews, will be conducted to examine the internal and external validity of the intervention.Discussion: Using a mixed-method design, our study will provide valuable insights into the usability, effectiveness, and factors related to implementation of the Inlife intervention. Our study results will indicate whether Inlife could be a valuable social support resource in future routine dementia care.Trial Registration: Dutch trial register, NTR6131 . Registered on 20 October 2016. [ABSTRACT FROM AUTHOR]

Background: Promoting adaptation, improving well-being and maintaining an optimal quality of life (QOL) is an important aspect in dementia care. The purpose of this study was to identify determinants of QOL in young onset dementia, and to assess differences in QoL domains between people with Alzheimer's disease (AD) and frontotemporal dementia (FTD). Methods: In total 135 persons with AD and 58 persons with FTD were included from two prospective cohort studies. QOL was assessed with the proxy reported quality of life in Alzheimer's disease questionnaire (QoL-AD). Possible determinants were explored using multiple linear regression and included sociodemographic variables, diagnosis, dementia severity, disease awareness, neuropsychiatric symptoms, met and unmet needs and hours of personal and instrumental care. Differences between QOL domains in people with AD and FTD were calculated using Mann-Whitney U tests. Results: Lower QOL was associated with more depressive symptoms, lower disease awareness, and a higher amount of needs, both met and unmet. People with AD scored lower on the memory and higher on the friends' subscale. No differences were found for the other items. Conclusion: This study demonstrates a unique set of determinants of QOL in AD and FTD. Interventions directed towards these specific factors may improve QOL. [ABSTRACT FROM AUTHOR]

Background: The benefits of e-health support for dementia caregivers are becoming increasingly recognized. Reaching early-stage dementia caregivers could prevent high levels of burden and psychological problems in them in the later stages of dementia. An iterative step-wise approach was employed to develop the blended care self-management program "Partner in Balance" for early-stage dementia caregivers. The design of a study evaluating the process characteristics and effects is presented.Methods/design: A mixed-method, single-blind, randomized controlled trial with 80 family caregivers of community-dwelling people with (very) mild dementia will be conducted. Participants will be randomly assigned to either the 8-week blended care self-management program "Partner in Balance" or a waiting-list control group. Data will be collected pre intervention and post intervention and at 3-, 6- and 12-month follow-ups. Semi-structured interviews will be conducted post intervention. A process evaluation will investigate the internal and external validity of the intervention. Primary outcomes will include self-efficacy and symptoms of depression. Secondary outcomes will include goal attainment, mastery, psychological complaints (feelings of anxiety and perceived stress), and quality of life. Possible modifying variables such as caregiver characteristics (quality of the relationship, neurotic personality) and interventional aspects (coach) on the intervention effect will also be evaluated. A cost-consequence analysis will describe the costs and health outcomes.Discussion: We expect to find a significant increase in self-efficacy, goal attainment and quality of life and lower levels of psychological complaints (depression, anxiety and stress) in the intervention group, compared with the control group. If such effects are found, the program could provide accessible care to future generations of early-stage dementia caregivers and increase dementia care efficiency.Trial Registration: Dutch trial register NTR4748 . [ABSTRACT FROM AUTHOR]

Abstract: Objective: To investigate the time from symptom onset to institutionalization in persons with young-onset dementia (YOD) and compare these findings with late-onset dementia (LOD), and to determine which factors predict institutionalization in persons with YOD compared with LOD. Design/Setting: Longitudinal study of community-dwelling patients with YOD and LOD and their caregivers. Participants: A total of 226 patients with YOD and 102 with LOD and their informal caregivers were recruited through memory clinics and health care facilities. Measurements: Cox proportional hazard models were used to relate covariates with time to institutionalization. The main outcome was time from symptom onset to institutionalization. Key predictors were cohort (YOD or LOD), neuropsychiatric symptoms, caregiver distress caused by neuropsychiatric symptoms, and caregivers’ sense of competence (Short Sense of Competence Questionnaire total score). Results: The time from symptom onset to institutionalization was nearly 9 years for patients with YOD compared with approximately 4 years for patients with LOD. In the YOD group, apathy significantly predicted time of institutionalization. Furthermore, the caregiver’s competence in caring for the person with dementia significantly predicted institutionalization in both groups. Conclusions: Patients with YOD are cared for at home for a longer period than patients with LOD. The results of this study underline the importance of a timely diagnosis for these patients and their families to facilitate the initiation of appropriate care and support. Support programs aimed at enhancing the caregivers’ sense of competence and ability to deal with neuropsychiatric symptoms, especially apathy, may postpone the institutionalization of the patient. [Copyright &y& Elsevier]

Background/Aims: Knowledge about neuropsychiatric symptoms in young-onset Alzheimer's disease (YO-AD) is scarce, but essential to establish a prognosis and plan care for YO-AD patients. The aim of this study is to assess frequency parameters of neuropsychiatric symptoms in YO-AD over 2 years and investigate whether there are differences compared with late-onset Alzheimer's disease (LO-AD). Methods: 98 YO-AD and 123 LO-AD patients and caregivers from two prospective cohort studies were included and assessed every 6 months for 2 years, using the Neuropsychiatric Inventory to evaluate neuropsychiatric symptoms. Results: Over the course of 2 years, the incidence, prevalence and persistence of neuropsychiatric symptoms were in general lower in YO-AD than in LO-AD, specifically for delusions, agitation, depression, anxiety, apathy, irritability and aberrant motor behavior. Frequency of individual symptoms showed large variability in both groups. Within the group of YO-AD patients, apathy was the most prevalent symptom. Conclusion: Neuropsychiatric symptoms, notably apathy, should be paid appropriate attention to in the diagnosis and treatment of YO-AD patients. Further research is needed to gain insight into the mechanisms underlying the differences in neuropsychiatric symptoms between YO-AD and LO-AD. Copyright © 2012 S. Karger AG, Basel [ABSTRACT FROM AUTHOR]

Objectives With the lack of a cure for Alzheimer disease (AD), the identification of comorbidity is important to reduce the possibility of excess disability. Although comorbidity in patients with late-onset AD (LO-AD) is common, for people with young-onset AD (YO-AD), it is unclear how often comorbidity occurs. Furthermore, it is uncertain whether comorbidity in patients with YO-AD differs from that in patients with LO-AD. The aim of this study was to explore the prevalence, types of morbidity, and morbidity profiles in patients with YO-AD compared with those of patients with LO-AD. Design Explorative cohort study from 2 separate Dutch cohorts (Needs in Young-onset Dementia [NeedYD] and the Clinical Course of Cognition and Comorbidity–Dementia Study [4C-Dementia study]). Setting Participants were recruited in 2007 and 2008 from (1) the memory clinics of 3 Dutch Alzheimer centers, (2) the memory clinics of general hospitals, (3) mental health services in the southern part of the Netherlands, and (4) young-onset dementia specialized day care facilities. A comparison group of community-dwelling, elderly patients with AD was selected from the 4C-Dementia study. Patients in this study were recruited in 2010 and 2011 from the aforementioned Alzheimer centers. Measurements The prevalence rates of comorbidity were compared between 177 patients with YO-AD and 155 patients with LO-AD. Comorbidity was classified using the International Classification of Diseases, 10th Revision (ICD-10). The total amount of comorbidity was established by counting the number of existing diseases (ICD categories or chapters) and comorbidity was also dichotomized as present or absent. Furthermore, a hierarchical cluster analysis was performed to study clusters of comorbidity. Results Compared with LO-AD, patients with YO-AD showed less ( P < .001) overall comorbidity (58.2% vs 86.5%) and had lower prevalence rates of diabetes, obesity, and circulatory diseases; however, the prevalence rates of diseases of the nervous system in YO-AD (6.2%) were higher compared with those of patients with LO-AD (4.5%). The cluster analysis revealed a distinctive group of patients with YO-AD with either no comorbidity or with a disease of the nervous system. Endocrine, nutritional, and metabolic diseases and diseases of the circulatory system were present in 34% of the patients with YO-AD. Conclusion Comorbidity is less common in YO-AD than in LO-AD. However, general practitioners should be aware that approximately one-third of the patients with YO-AD suffer from or have endocrine, nutritional, and metabolic diseases and/or diseases of the circulatory system. Treatment should therefore not only focus on dementia but also on comorbidity. This attention may slow the functional decline in AD. These exploratory analyses suggested a higher prevalence of nervous system diseases in YO-AD compared with LO-AD. However, the finding did not reach statistical significance and in combination with the exploratory nature of the analyses justifies further investigation. If verified, this finding may help to decrease the time to diagnosis of AD and, subsequently, support in young patients with a neurological disease. Further investigation is needed to gain more insight into the association between comorbidity and AD in younger people. [ABSTRACT FROM AUTHOR]