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Background: Young-onset dementia (YOD) has a profound impact on spouses. However, little is known on how the quality of the relationship changes over time in YOD. This study aims to determine how the quality of the relationship changes over time and identify predictors of this change. Methods: This study used data from the NEEDs in Young onset Dementia (NeedYD) study. The primary outcome measure was the quality of the relationship perceived by spouses measured throughout 24 months. Baseline characteristics of persons with YOD and spouses were also measured to assess their predictive value. Results: Totally, 178 dyads were included. The perceived quality of the relationship deteriorated over time. A longer symptom duration, a diagnosis of frontotemporal dementia, lower levels of awareness of deficits, lower levels of initiative toward daily living activities, and higher levels of apathy, hyperactivity, depression, and anxiety in the person with YOD were associated with a lower perceived quality of the relationship by spouses. A coping style characterized by palliative and passive reacting patterns and higher levels of neuroticism in spouses was also associated with a lower quality of the relationship. Conclusion: The quality of the relationship as perceived by spouses deteriorated over time and was influenced by characteristics of the person with YOD as well as their spouse. Helping spouses to come to terms with factors that threaten their sense of couplehood might help them to develop a more positive attitude toward their spousal relationship and improve the quality of the relationship and care. [ABSTRACT FROM AUTHOR]

Background:Little is known about care needs in young-onset dementia (YOD) patients, even though this information is essential for service provision and future care planning.We explored: (1) care needs of people with YOD, (2) the level of agreement within patient-caregiver dyads on care needs, and (3) the longitudinal relationship between unmet needs and neuropsychiatric symptoms.Methods:A community-based prospective study of 215 YOD patients-caregiver dyads. Care needs were assessed with the Camberwell Assessment of Need for the Elderly. The level of agreement between patient and caregivers’ report on care needs was calculated using κ coefficients. The relationship between unmet needs and neuropsychiatric symptoms over time, assessed with the Neuropsychiatric Inventory, was explored using linear mixed models.Results:Patients and caregivers generally agreed on the areas in which needs occurred. Only modest agreement existed within patient-caregiver dyads regarding whether needs could be met. Patients experienced high levels of unmet needs in areas such as daytime activities, social company, intimate relationships, and information, leading to an increase in neuropsychiatric symptoms.Conclusions:Our findings indicate that in YOD, there are specific areas of life in which unmet needs are more likely to occur. The high proportions of unmet needs and their relationship with neuropsychiatric symptoms warrant interventions that target neuropsychiatric symptoms as well as the prevention of unmet needs. This underlines the importance of the periodic investigation of care needs, in which patient and caregiver perspectives are considered complementary. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]