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Background: Frontotemporal dementia (FTD) has a profound impact on the spouse and other family caregivers involved. While caregivers have a need for support, it is difficult for healthcare providers to respond to their specific needs. This qualitative study explores the lived experiences and needs of caregivers of persons with FTD to facilitate the development of support., Methods: Three focus group discussions were organized to explore the lived experiences of Dutch FTD caregivers. The included caregivers ( n  = 24) were aged 16 years or older and were involved in the care of a relative with FTD. Two researchers independently performed an inductive content analysis using open and axial coding., Results: The main category emerging from the data was a lack of recognition, acknowledgment, and understanding experienced by caregivers. This was linked to caregivers' experiences with (1) complex emotional and behavioral symptoms in the person with FTD, (2) the trivializing responses of family and friends, (3) a perceived lack of knowledge and support from healthcare professionals, and (4) the bureaucratic procedures that accompany caregiving. As a result, caregivers felt lonely and solely responsible for the caregiving role., Conclusion: Caregivers of persons with FTD experience a lack of understanding in caring for their relative with FTD, which contributes to feelings of loneliness. A specialized support approach is needed to address the specific needs of caregivers of persons with FTD. Support should address strategies that caregivers can use to inform and involve family and friends in the caregiving situation to prevent loneliness in FTD caregivers.

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., (Copyright © 2017 John Wiley & Sons, Ltd.)

Objectives: To identify information available in six European countries (England, France, Germany, Netherlands, Portugal, Sweden) that addresses the specific needs of people with young onset dementia (YOD) and their carers, and identify gaps., Methods: Search of websites of organisations with potential interest in dementia. Narrative synthesis and comparative analysis., Results: 21 sources of information were identified (Netherlands 6, England 6, France 3, Germany 2, Portugal 2, Sweden 2); 11 were from voluntary sector organisations. Sources dedicated to YOD were limited (4 websites, 4 books); all other YOD information was sub-entries in generic dementia sources, difficult to locate and with limited coverage of relevant topics. Gaps related to implications of living with YOD in Germany, Portugal and Sweden., Conclusion: Availability of information varies among countries, some having no dedicated source and incomplete coverage of issues of importance to YOD., Practical Implications: Information is an important means of supporting carers; their needs change as the condition progresses. A comprehensive resource collating key information is needed so that the issues that differentiate the specific needs of people living with YOD from those of people with dementia in older age are available and easily located., (Copyright © 2017. Published by Elsevier B.V.)

Background: Young Onset Dementia (YOD), defined by first symptoms of cognitive or behavioral decline occurring before the age of 65 years, is relatively rare compared to dementia of later onset, but it is associated with diagnostic difficulty and heavy burden on affected individuals and their informal carers. Existing health and social care structures rarely meet the needs of YOD patients. Internet-based interventions are a novel format of delivering health-related education, counseling, and support to this vulnerable yet underserved group., Methods: The RHAPSODY (Research to Assess Policies and Strategies for Dementia in the Young) project is a European initiative to improve care for people with YOD by providing an internet-based information and skill-building program for family carers. The e-learning program focuses on managing problem behaviors, dealing with role change, obtaining support, and looking after oneself. It will be evaluated in a pilot study in three countries using a randomized unblinded design with a wait-list control group. Participants will be informal carers of people with dementia in Alzheimer's disease or behavioral-variant Frontotemporal degeneration with an onset before the age of 65 years. The primary outcome will be caregiving self-efficacy after 6 weeks of program use. As secondary outcomes, caregivers' stress and burden, carer health-related quality of life, caring-related knowledge, patient problem behaviors, and user satisfaction will be assessed. Program utilization will be monitored and a health-economic evaluation will also be performed., Conclusions: The RHAPSODY project will add to the evidence on the potential and limitations of a conveniently accessible, user-friendly, and comprehensive internet-based intervention as an alternative for traditional forms of counseling and support in healthcare, aiming to optimize care and support for people with YOD and their informal caregivers.

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., (Copyright © 2015 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.)

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 children's 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 children's 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.

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 © 2013. Published by Elsevier Inc.)

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., (Copyright © 2013 American Association for Geriatric Psychiatry. Published by Elsevier Inc. All rights reserved.)

Background: Recognizing and diagnosing early onset dementia (EOD) can be complex and often takes longer than for late onset dementia. The objectives of this study are to investigate the barriers to diagnosis and to develop a typology of the diagnosis pathway for EOD caregivers., Methods: Semi-structured interviews with 92 EOD caregivers were analyzed using constant comparative analysis and grounded theory. A conceptual model was formed based on 21 interviews and tested in 29 additional transcripts. The identified categories were quantified in the whole sample., Results: Seven themes emerged: (1) changes in the family member, (2) disrupted family life, (3) misattribution, (4) denial and refusal to seek advice, (5) lack of confirmation from social context, (6) non-responsiveness of a general practitioner (GP), and (7) misdiagnosis. Cognitive and behavioral changes in the person with EOD were common and difficult to understand for caregivers. Marital difficulties, problems with children and work/financial issues were important topics. Confirmation of family members and being aware of problems at work were important for caregivers to notice deficits and/or seek help. Other main issues were a patient's refusal to seek help resulting from denial and inadequate help resulting from misdiagnosis., Conclusion: EOD caregivers experience a long and difficult period before diagnosis. We hypothesize that denial, refusal to seek help, misattribution of symptoms, lack of confirmation from the social context, professionals' inadequate help and faulty diagnoses prolong the time before diagnosis. These findings underline the need for faster and more adequate help from health-care professionals and provide issues to focus on when supporting caregivers of people with EOD.

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., (Copyright © 2010 John Wiley & Sons, Ltd.)

Background: The evidence underpinning palliative care in dementia is mostly based on research in older populations. Little is known about the palliative care needs of people with young-onset dementia (YOD). Objective: To describe palliative care practices including advance care planning (ACP) in people with YOD residing in Dutch nursing homes. Methods: The study presents baseline questionnaire data from an observational cohort study. Physicians, family caregivers, and nursing staff completed questionnaires about 185 residents with YOD. The questionnaires included items on sociodemographics, quality of life measured with the quality of life in late-stage dementia (QUALID) scale, dementia-related somatic health problems, symptoms, pain medication, psychotropic drugs, and ACP. Results: The mean age was 63.9 (SD 5.8) years. Half (50.3%) of them were female. Alzheimer's disease dementia (42.2%) was the most prevalent subtype. The mean QUALID score was 24.0 (SD 7.9) as assessed by family caregivers, and 25.3 (SD 8.6) as assessed by the nursing staff. Swallowing problems were the most prevalent dementia-related health problem (11.4%). Agitation was often reported by physicians (42.0%) and nursing staff (40.5%). Psychotropics were prescribed frequently (72.3%). A minority had written advance directives (5.4%) or documentation on treatment preferences by the former general practitioner (27.2%). Global care goals most often focused on comfort (73.9%). Proportions of do-not-treat orders were higher than do-treat orders for all interventions except for hospitalization and antibiotics. Conclusions: ACP must be initiated earlier, before nursing home admission. A palliative approach seems appropriate even though residents are relatively young and experience few dementia-related health problems. [ABSTRACT FROM AUTHOR]

Huntington’s disease (HD) patients and families deserve expert treatment and care throughout their lives, but uniformity in functional diagnosis and treatment was lacking. In the aim of reaching this uniformity on day-to-day treatment and care offered by multidisciplinary outreach teams from Dutch long term care facilities for ambulatory HD patients, a consensus trajectory was started to harmonise our care programme with international standards and within the country. The consensus statements, given as supplementary material, should lead to expert treatment and care for HD families throughout the Netherlands and this manuscript should contribute and revitalise a global discussion on standards of treatment and care. [ABSTRACT FROM AUTHOR]

The article presents a study aimed at proving that the number of unmet needs in young-onset dementia (YOD) is related to both patient and caregiver health-related quality of life (HRQOL). Topics discussed include HRQOL in YOD patients and likely differences with caregiver views on patient HRQOL, HRQOL in YOD caregivers compared with the general population, and the link between unmet needs and both patient and caregiver HRQOL in YOD.

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]

Background: Early 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/Design: The 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. Discussion: The 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. [ABSTRACT FROM AUTHOR]

Objective The aims of this study were (1) to investigate the relationship between different neuropsychiatric symptoms (NPS) and the level of distress experienced by nurses caring for residents with young-onset dementia (YOD) and (2) to compare these findings with those for nurses caring for residents with late-onset dementia (LOD). Design/Setting This is a retrospective study conducted in Dutch long-term care facilities. Data were used from the Behavior and Evolution of Young-ONset Dementia studies (BEYOND) Parts I and II and the WAAL Behavior in Dementia-II (Waalbed-II) study. Participants A total of 382 nursing home residents with YOD and 261 nursing home residents with LOD were included. Measurements The Neuropsychiatric Inventory, nursing home version, was used to assess nursing staff distress and the frequency (F) and severity (S) of NPS. Multilevel logistic regression analysis was used to investigate the relationships between nursing staff distress related to NPS and YOD and LOD care units, the F × S score per symptom, gender, dementia subtype, and dementia severity. Results Nurses working in YOD care units rated sleep and nighttime behavior disorders, delusions, and agitation/aggression most often as highly distressing and euphoria most often as not distressing. Multivariate analyses indicated that the frequency and severity of NPS were significantly associated with staff distress in all symptoms, except for apathy. Comparison of the 2 groups of nurses demonstrated that the odds for distress related to sleep and nighttime behavior disorders were higher for nurses in YOD care units than for nurses in LOD units. For both the YOD and LOD nurses, irritability in male residents had higher impact than similar behavior in female residents. Conclusion This study provides important insight into distress related to individual NPS and the interaction with residents' characteristics. All NPS result in distress. The frequency and severity of the behavior is an important predictor. Sleep and nighttime behavior disorders are more likely to result in distress in YOD nurses than in LOD nurses. The amount of distress related to NPS emphasizes the urgent need for adequate management of NPS and the support of professional caregivers. [ABSTRACT FROM AUTHOR]