Deliane van Vliet

Impact of early onset dementia on caregivers: a review

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.

Needs in Early Onset Dementia: A Qualitative Case From the NeedYD Study

Objectives: The aim was to explore the experiences of a caregiver of a patient with early onset dementia (EOD) and the needs of patient and caregiver. Methods: A single case study design was used to explore (1) unmet needs of patient and caregiver and (2) caregiver’s experiences of transitions in care and health care services. A qualitative analysis was used to examine the data. Results: This study shows that a patient with EOD and the caregiver were confronted with specific issues during the care process, namely (1) prolonged time to diagnosis, (2) a lack of fit between needs and services, (3) the strain of dedication to care versus the caregiver’s own future perspective, (4) the need for response of health care services to changing individual preferences. Conclusion: This study illustrates specific issues related to early onset dementia that require specialized EOD care such as the differential and changing needs of patients and caregivers.

The Use of Formal and Informal Care in Early Onset Dementia: Results From the NeedYD Study

OBJECTIVE Early onset dementia (EOD) poses specific challenges and issues for both the patient and (in)formal care. This study explores the use of (in)formal care prior to institutionalization, and its association with patient and caregiver characteristics. DESIGN/SETTING Participants were part of a community-based prospective longitudinal study of 215 patients and their informal caregivers. PARTICIPANTS Baseline data of a subsample of 215 patient-caregiver dyads were analyzed. MEASUREMENTS Analyses of covariance were performed to determine correlates of (in)formal care use assessed with the Resource Utilization in Dementia (RUD)-Lite questionnaire. RESULTS Informal care had a 3:1 ratio with formal care. Supervision/surveillance constituted the largest part of informal care. In more than half of cases, patients had only one informal caregiver. The amount of informal care was associated with disease severity, showing more informal care hours in advanced disease stages. Fewer informal care hours were related to more caregiver working hours, especially in younger patients. The amount of formal care was related to disease severity, behavioral problems, and initiative for activities of daily living. CONCLUSION In EOD, it appears that family members provide most of the care. However, other social roles still have to be fulfilled. Especially in spousal caregivers of younger patients in advanced disease stages, there is a double burden of work and care responsibilities. This finding also indicates that even within the EOD group there might be important age-related differences. The relatively higher amount of formal care use during advanced disease stages suggests a postponement in the use of formal care.

Prevalence of Neuropsychiatric Symptoms in Young-Onset Compared to Late-Onset Alzheimer's Disease - Part 1: Findings of the Two-Year Longitudinal NeedYD-Study

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.

Research protocol of the NeedYD-study (Needs in Young onset Dementia): a prospective cohort study on the needs and course of early onset dementia.

BackgroundEarly onset dementia has serious consequences for patients and their family members. Although there has been growing attention for this patient group, health care services are still mainly targeted at the elderly. Specific knowledge of the needs of early onset dementia patients and their families is limited but necessary for the development of adequate health care services and specific guidelines. This research project is mainly targeted at delineating the course of early onset dementia, the functional characteristics and needs of early onset dementia patients and their caregivers, the risk factors for institutionalization and the interaction with the caring environment.Methods/DesignThe NeedYD-study (Needs in Young Onset Dementia) is a longitudinal observational study investigating early onset dementia patients and their caregivers (n = 217). Assessments are performed every six months over two years and consist of interviews and questionnaires with patients and caregivers. The main outcomes are (1) the needs of patients and caregivers, as measured by the Camberwell Assessment of Needs for the Elderly (CANE) and (2) neuropsychiatric symptoms, as measured by the NeuroPsychiatric Inventory (NPI). Qualitative analyses will be performed in order to obtain more in-depth information on the experiences of EOD patients and their family members. The results of this study will be compared with comparable data on late onset dementia from a historical cohort.DiscussionThe study protocol of the NeedYD-study is presented here. To our knowledge, this study is the first prospective cohort study in this research area. Although some limitations exist, these do not outweigh the strong points of this study design.

The experiences and needs of children living with a parent with young onset dementia: results from the NeedYD study

BACKGROUND Children of patients with young onset dementia (YOD) who are confronted with a parent who has a progressive disease, often assist in caregiving tasks, which may have a great impact on their lives. The objective of the present study is to explore the experiences of children living with a young parent with dementia with a specific focus on the childrens needs. METHODS Semi-structured interviews with 14 adolescent children between the ages of 15 and 27 years of patients with YOD were analyzed using inductive content analysis. Themes were identified based on the established codes. RESULTS The emerging categories were divided into three themes that demonstrated the impact of dementia on daily life, different ways of coping with the disease, and childrens need for care and support. The children had difficulties managing all of the responsibilities and showed concerns about their future. To deal with these problems, they demonstrated various coping styles, such as avoidant or adaptive coping. Although most children were initially reluctant to seek professional care, several of them expressed the need for practical guidance to address the changing behavior of their parent. The children felt more comfortable talking to someone who was familiar with their situation and who had specific knowledge of YOD and the available services. CONCLUSION In addition to practical information, more accessible and specific information about the diagnosis and the course of YOD is needed to provide a better understanding of the disease for the children. These findings underline the need for a personal, family-centered approach.

The Impact of Young Onset Dementia on Informal Caregivers Compared with Late Onset Dementia: Results from the NeedYD Study.

OBJECTIVES The impact of the dementia might be more severe for caregivers of people with young onset dementia (YOD) compared with those who care for someone with late onset dementia (LOD), as a young age among caregivers has been identified as a predictor of increased burden. The present study compares well-being between LOD and YOD caregivers longitudinally because this knowledge is essential in order to develop adequate support programs. DESIGN, SETTING, AND PARTICIPANTS 220 YOD and 108 LOD patient-caregiver dyads were included from two prospective cohorts with a 2-year follow up. To assess well-being we used the Short Sense of Competence Questionnaire, the RAND-36, the Symptom Checklist 90, and the Montgomery Asberg Depression Rating Scale. The severity and the course of the different measures used to describe caregiver burden were analyzed with linear mixed models. RESULTS Caregivers in both groups experienced high levels of physical and psychological complaints, mild depressive symptoms, lower health-related quality of life (HRQoL), and decreased feelings of competence. The severity and the course of most measures were similar in both groups, although HRQoL on both the physical and the mental domain was lower for the YOD caregivers. CONCLUSIONS The number of actual psychological and physical complaints does not differ between YOD and LOD caregivers. YOD caregivers have greater perceived difficulties in daily life because of these complaints, however.

Prevalence and correlates of psychotropic drug use in community-dwelling people with young-onset dementia: the NeedYD-study

BACKGROUND Young-onset dementia (YOD) is defined as dementia that develops before the age of 65 years. The prevalence and type of neuropsychiatric symptoms (NPS) in YOD differ from patients with late onset dementia. NPS in dementia patients are often treated with psychotropic drugs. The aim of this study was to investigate psychotropic drug use (PDU) in Dutch community-dwelling YOD patients and the association between age, gender, dementia etiology and severity, symptoms of depression, disease awareness, unmet needs, and type of NPS. METHODS Psychotropic drug use in 196 YOD patients was registered. Drugs were categorized according to the Anatomical Therapeutical Chemical classification. The association between age, gender, dementia type, dementia stage, type of NPS, depressive symptoms, disease awareness, and amount of unmet needs on total PDU was analyzed using binomial logistic regression analysis. RESULTS Fifty-two percent of the patients were prescribed at least one psychotropic drug; 36.2% of patients used one drug, and 12.2% used two different drugs. Antidepressants (36.2%) and antipsychotic drugs (17.3%) were the most frequently prescribed psychotropic drugs. Anti-dementia drugs were prescribed in 51.5% of the patients. Increasing age and moderate to severe depressive symptoms were positively associated with the total use of psychotropic drugs. CONCLUSIONS Community-dwelling YOD patients have a high prevalence of PDU. More research is needed to study the association between unmet needs, NPS, and PDU, and psychosocial interventions have to be developed to limit the use of psychotropic drugs in YOD.

Diagnosetraject bij dementie op jonge leeftijd

Van Vliet D, De Vugt ME. Diagnosetraject bij dementie op jonge leeftijd. Huisarts Wet 2014;57(12):630-2. Dementie op jonge leeftijd, ontstaan voor het 65ste levensjaar, is over het algemeen moeilijker in een vroeg stadium te herkennen dan dementie op oudere leeftijd. In het kader van het Needs in Young-onset Dementia (NeedYD)-onderzoek hebben we de ervaringen in de periode voorafgaand aan de diagnose onderzocht. In het huidige onderzoek hebben we de gegevens van 235 jonge mensen met dementie en hun mantelzorgers vergeleken met gegevens van 167 mensen met dementie op oude leeftijd uit de MAAstricht Study in BEhaviour in Dementia (MAASBED). We hebben de duur voorafgaand aan de diagnose vastgesteld met behulp van dossieronderzoek en interviews. De ervaringen van mantelzorgers hebben we in kaart gebracht met behulp van kwalitatieve interviews. De resultaten laten zien dat de duur voorafgaand aan de diagnose in de jongere groep gemiddeld 4,4 jaar was, versus 2,8 jaar in de oudere groep. Voor elk subtype van dementie was de periode in de jongere groep langer. Mantelzorgers ervoeren veel problemen in deze periode door onduidelijkheid over de oorzaak van de veranderingen, spanningen binnen het gezin en belemmeringen in het diagnosetraject. Een tijdige signalering en diagnose zijn daarom van belang voor het verkrijgen van duidelijkheid over de veranderingen en het verminderen van spanningen in het gezin. Daardoor wordt het ook mogelijk om deze specifieke doelgroep adequate zorg en begeleiding te verlenen.

Exploring perspectives of young onset dementia caregivers with high versus low unmet needs

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.