M.E. de Vugt

A European consensus on outcome measures for psychosocial intervention research in dementia care

Psychosocial intervention makes a vital contribution to dementia care. However, the lack of consensus about which outcome measures to use to evaluate effectiveness prevents meaningful comparisons between different studies and interventions. This study used an iterative collaborative, evidence-based approach to identify the best of currently available outcome measures for European psychosocial intervention research. This included consensus workshops, a web-based pan-European consultation and a systematic literature review and a rigorous evaluation against agreed criteria looking at utility across Europe, feasibility and psychometric properties. For people with dementia the measures covered the domains of quality of life, mood, global function, behaviour and daily living skills. Family carer domains included mood and burden, which incorporated coping with behaviour and quality of life. The only specific staff domain identified was morale, but this included satisfaction and coping with behaviour. In conclusion twenty-two measures across nine domains were recommended in order to improve the comparability of intervention studies in Europe. Areas were identified where improved outcome measures for psychosocial intervention research studies are required.

Caregiver Burden, Health-Related Quality of Life and Coping in Dementia Caregivers: A Comparison of Frontotemporal Dementia and Alzheimer’s Disease

Frontotemporal dementia (FTD) is the second most prevalent dementia after Alzheimer’s disease (AD). We compared 29 FTD and 90 AD caregivers with respect to burden, health-related quality of life (HQoL) and coping. FTD caregivers were more burdened than AD caregivers, and caregivers of patients who were demented for shorter duration had lower HQoL. We furthermore compared the 29 FTD caregivers with 34 caregivers of institutionalized FTD patients to understand their specific caregiver issues. Caregivers of FTD patients institutionalized after shorter dementia duration were most burdened and affected in their HQoL. Overall, passive coping strategies were associated with increased burden and decreased HQoL. We recommend that FTD caregivers be offered more support than AD caregivers. Furthermore, we suggest that interventions target passive coping strategies.

A systematic review of Internet-based supportive interventions for caregivers of patients with dementia

Because of the expected increase in the number of dementia patients, the unlikelihood of a cure in the near future, and the rising cost of care, there is an increasing need for effective caregiver interventions. Internet interventions hold considerable promise for meeting the educational and support needs of informal dementia caregivers at reduced costs. The current study aims to provide an overview of the evidence for the effectiveness, feasibility, and quality of Internet interventions for informal caregivers of people with dementia.

Time to diagnosis in young-onset dementia as compared with late-onset dementia

BACKGROUND The extent to which specific factors influence diagnostic delays in dementia is unclear. Therefore, the aim of the present study was to compare duration from symptom onset to diagnosis for young-onset dementia (YOD) and late-onset dementia (LOD) and to assess the effect of age at onset, type of dementia, gender, living situation, education and family history of dementia on this duration. METHOD Data on 235 YOD and 167 LOD patients collected from caregivers from two prospective cohort studies were used. Multiple linear regression analysis was performed. RESULTS The duration between symptom onset and the diagnosis of YOD exceeded that of LOD by an average of 1.6 years (2.8 v. 4.4 years). Young age and being diagnosed with frontotemporal dementia were related to increases in the time to diagnosis. Subjects with vascular dementia experienced shorter time to diagnosis. CONCLUSIONS There is a need to raise special awareness of YOD to facilitate a timely diagnosis.

Awareness and Its Association With Affective Symptoms in Young-onset and Late-onset Alzheimer Disease: A Prospective Study

Background:It is unknown whether there are differences between young-onset dementia and late-onset dementia in awareness levels and whether awareness is differentially associated with affective symptoms in both groups. The present study assesses possible differences between young-onset (YO-AD) and late-onset Alzheimer disease (LO-AD) in awareness levels and the association between awareness and affective symptoms. Methods:This study included 142 YO-AD and 126 LO-AD patients and their caregivers from 2 prospective studies. The participants were assessed 3 times during 1 year. Awareness was assessed using the Guidelines for the Rating of Awareness Deficits, and affective symptoms were assessed using the anxiety and depression items of the Neuropsychiatric Inventory. Population-averaged logistic regressions were used to analyze awareness and its association with affective symptoms. Results:The odds for impaired awareness in LO-AD were more than double the odds in YO-AD. Intact awareness was associated with depressive symptoms but not with anxiety. This effect was more pronounced in YO-AD compared with LO-AD at baseline. High awareness at baseline did not predict incident affective symptoms. Conclusions:Caregivers and clinicians should be prepared for affective symptoms in YO-AD patients with high awareness. The higher awareness in the YO-AD group also has potential positive implications for this group.

Dealing with daily challenges in dementia (deal-id study): an experience sampling study to assess caregiver functioning in the flow of daily life.

Accurate assessment of caregiver functioning is of great importance to gain better insight into daily caregiver functioning and to prevent high levels of burden. The experience sampling methodology (ESM) is an innovative approach to assess subjective experiences and behavior within daily life. In this study, the feasibility of the ESM in spousal caregivers of people with dementia was examined, and the usability of ESM data for clinical and scientific practice was demonstrated.

Behavior and Evolution of Young ONset Dementia part 2 (BEYOND-II) study: an intervention study aimed at improvement in the management of neuropsychiatric symptoms in institutionalized people with young onset dementia

ABSTRACTBackground:Both neuropsychiatric symptoms (NPS) and psychotropic drug use (PDU) are common in institutionalized People with Young Onset Dementia (PwYOD) and can produce negative outcomes such as reduced quality of life and high workload. In community-dwelling PwYOD, NPS are found to be associated with unmet care needs. This emphasizes the importance of a care program for the management of NPS in institutionalized PwYOD that also addresses unmet care needs and PDU. The objectives of the Behavior and Evolution of Young ONset Dementia part 2 (BEYOND-II) study are to develop a care program for the management of NPS in institutionalized PwYOD and to evaluate its effectiveness. METHODS The care program consists of an educational program combined with an intervention to manage NPS with the following five steps: the evaluation of psychotropic drug prescription, detection, analysis (including the detection of unmet needs), treatment and the evaluation of NPS. A stepped wedge design will be used to evaluate its effectiveness. The primary outcomes are agitation and aggression and other NPS. The secondary outcomes are PDU, quality of life, the workload of nursing staff and job satisfaction. Additionally, a process analysis and a cost-consequence analysis will be conducted. CONCLUSIONS The study protocol of the Beyond-II study describes the development, implementation and evaluation of a care program for the management of NPS in institutionalized PwYOD. This care program provides a structured method for the management of NPS, in which unmet needs and PDU are also addressed.

Feeling useful and engaged in daily life: exploring the experiences of people with young-onset dementia

BACKGROUND To explore the aspects of daily life that give people with young-onset dementia (YOD) a sense of usefulness. METHODS Eighteen people with YOD and 21 informal caregivers participated in this qualitative study. Participants were recruited from specialized day-care centers for people with YOD in the Netherlands. Four focus groups were conducted with people with YOD, and four with informal caregivers. Focus groups were audio-recorded, transcribed, and analyzed using inductive content analysis. RESULTS Four themes emerged from the analysis: (1) staying engaged, (2) loss in daily life, (3) coping and adaptation, and (4) external support. Staying engaged in activities that provide a sense of usefulness or participating in leisure and recreational activities as much as possible in daily life emerged as the key theme. Retaining a sense of usefulness was considered both important and possible by having social roles or participating in functional activities. The importance of activities providing a sense of usefulness seemed to decrease over time, while the need for pleasant activities seemed to increase. Experienced loss, coping, adaptation, and available external support are important parts of the context in which the person with YOD tries to engage in daily life as much as possible. Active coping styles and external support appear to play a facilitating role in staying engaged. CONCLUSIONS It is important for people with YOD to have the opportunity to feel useful; especially in the early stages of the condition. Caregivers should be educated in ways to enhance a sense of usefulness and engagement in daily life for people with YOD.

EPA-0212 - Identification of comorbidity as a preventive strategy for dementia

Introduction Dementia has a multifactorial etiology including social, environmental, behavioral and neurobiological factors. The validity and status of currentlydocumented dementia risk factors are often uncertain, based on few studies, or inconsistent. We combined quantitative and qualitative information to summarize and weight the most important dementia risk factors. Objectives Identifying the major modifiable midlife risk factors for dementia is crucial to develop effective preventive strategies and improve healthy late life cognitive functioning. Aims The present study is part of the FP-7 funded In-MINDD (Innovative Midlife Intervention for Dementia Deterrence) project, which aims to identify the most important modifiable risk factors for dementia. Methods Dementia risk factors named by international dementia experts in a Delphi study were synthesized with information from a systematic literature review. The literature research conducted in PubMed used a search strategy modified from Plassman et al. (2010). This yielded 3,127 abstracts, of which 327 were included for further scrutiny based on title and abstract. The results were pooled with those from previous reviews to arrive at the final risk inventory. Results The risk factors named by experts were among the best-documented risk factors based on previous literature and our systematic review. These include depression, hypertension, physical inactivity, diabetes, obesity, hyperlipidemia, and smoking. We also identified new candidate risk factors that need further validation: coronary heart disease, renal dysfunction, stroke, and inflammation. Conclusions This study provides strong support for somatic and lifestyle factors in the etiology of dementia and flags several important targets for prevention in midlife.