People with young-onset dementia (YOD) living in nursing homes may experience poor quality of life (QoL) due to advanced dementia, high prevalence of neuropsychiatric symptoms and psychotropic drug use. However, the course of QoL in institutionalized people with YOD and factors that predict this course are unclear. This knowledge could help health professionals identify appropriate interventions to improve QoL in YOD.

To explore the course of QoL in institutionalized people with YOD and resident-related predictors of that course.

Secondary analyses were conducted with longitudinal data from the Behavior and Evolution in Young-ONset Dementia (BEYOND)-II study. A total of 278 people with YOD were recruited from 13 YOD special care units in the Netherlands. QoL was measured by the proxy assessment of Quality of Life in Dementia (QUALIDEM) questionnaire at four assessments over 18 months. Independent variables included age, gender, dementia subtype, length of stay, dementia severity, neuropsychiatric symptoms and psychotropic drug use at baseline. Multilevel modeling adjusted for correlation within nursing homes and residents was used to determine the course and predictors of QoL.

The total QUALIDEM score (range: 0–111) decreased over 18 months with a statistically significant decline of 0.73 points per six months. A significant increase of QoL over time was seen in the subscales “Care relationship”, “Positive self-image”, and “Feeling at home”. However, a significant decline was observed in the subscales “Positive affect”, “Social relations”, and “Something to do”. Residents’ course of QoL was positively associated with the baseline scores of the QoL, age and longer duration of stay; however, being male, having advanced dementia, Alzheimer’s disease and high rates of neuropsychiatric symptoms at baseline were negatively associated with the course of QoL

Longitudinal changes in QoL in residents with YOD were small over 18 months and QUALIDEM subscales showed multidirectional changes. The largest QoL decline in the subscale “Positive affect” suggests that interventions should be targeted to improve positive emotions, in particular for male residents with neuropsychiatric symptoms and advanced dementia.

The aim of this study was to investigate survival time and life-expectancy in people with young-onset dementia (YOD) and to examine the relationship with age, sex, dementia subtype and comorbidity.

Survival was examined in 198 participants in the Needs in Young-onset Dementia study, including participants with Alzheimer’s dementia (AD), vascular dementia (VaD) and frontotemporal dementia (FTD).

The primary outcomes were survival time after symptom onset and after date of diagnosis. Cox proportional hazards models were used to explore the relationship between survival and age, sex, dementia subtype and comorbidity. Additionally, the impact on remaining life expectancy was explored.

During the six-year follow-up, 77 of the participants died (38.9%), 78 participants survived (39.4%) and 43 were lost to follow-up (21.7%). The mean survival time after symptom onset and diagnosis was 209 months (95% CI 185-233) and 120 months (95% CI 110-130) respectively. Participants with AD had a statistically significant shorter survival compared with VaD participants, both regarding survival after symptom onset (p = 0.047) as well as regarding survival after diagnosis (p = 0.049). Younger age at symptom onset or at diagnosis was associated with longer survival times. The remaining life expectancy, after diagnosis, was reduced with 51% for males and 59% for females compared to the life expectancy of the general population in the same age groups.

It is important to consider the dementia subtype when persons with YOD and their families are informed about the prognosis of survival. Our study suggests longer survival times compared to other studies on YOD, and survival is prolonged compared to studies on LOD. Younger age at symptom onset or at diagnosis was positively related to survival but diagnosis at younger ages, nevertheless, still diminishes life expectancy dramatically.

To explore the aspects of daily life that give people with young-onset dementia (YOD) a sense of usefulness.

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.

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.

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.

Access to social support contributes to feelings of independence and better social health. This qualitative study aims to investigate multi-informant perspectives on informal social support in dementia care networks.

Ten spousal caregivers of people with dementia (PwD) completed an ecogram, a social network card and a semi-structured interview. The ecogram aimed to trigger subjective experiences regarding social support. Subsequently, 17 network members were interviewed. The qualitative analyses identified codes, categories, and themes.

Sixth themes emerged: (1) barriers to ask for support; (2) facilitators to ask for support; (3) barriers to offer support; (4) facilitators to offer support; (5) a mismatch between supply and demand of social support; and (6) openness in communication to repair the imbalance.

Integrating social network perspectives resulted in a novel model identifying a mismatch between the supply and demand of social support, strengthened by a cognitive bias: caregivers reported to think for other social network members and vice versa. Openness in communication in formal and informal care systems might repair this mismatch.

Early individualized interventions for informal dementia caregivers can prevent overburdening in the later stages. However, the needs of early-stage dementia caregivers (EDC) remain largely unknown. This study aimed to explore the needs and wishes and need for care of EDC to maximize the benefit of potential programs for EDC and tailor interventions accordingly.

Four focus group interviews with 28 informal caregivers of people with dementia (PwD) were analyzed using inductive content analysis. Both EDC and caregivers in the later stages were included to compare perceived EDC needs from different points in the caregiver career.

Four themes were identified: the early-stage needs paradox, barriers in acceptance, facilitators in acceptance, and a transition from loss to adaptation. The retrospective view provided by later-stage caregivers differed from the view of EDC; EDC struggled with acknowledging needs due to fear of stigma and low acceptance. EDC stressed the importance of acceptance as a prerequisite for adequate adaptation, but were hindered by lack of knowledge, difficulty acknowledging changes, and focus on loss. In contrast, better understanding of the disease, increasing personal time, structuring ones day, and using appropriate humor can reduce negative communication, increase positive encounters and caregiver-confidence, contributing to positive interaction with the care recipient and an increase in well-being.

Early therapeutic interventions could help caregivers identify their needs, increase knowledge about changes in roles and relationship reciprocity, and focus on enhancement of the positive, intact experiences to prevent caregiver burden.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.