scholarly journals The course of neuropsychiatric symptoms in institutionalized patients with young onset dementia

2018 ◽  
Vol 24 (3) ◽  
pp. 439-444 ◽  
Author(s):  
Rosa Bauhuis ◽  
Ans J. M. J. Mulders ◽  
Raymond T. C. M. Koopmans
Keyword(s):  
Neuropsychiatric Symptoms ◽  
Young Onset ◽  
Young Onset Dementia ◽  
Institutionalized Patients

The relationship between unmet care needs in young-onset dementia and the course of neuropsychiatric symptoms: a two-year follow-up study

2013 ◽  
Vol 26 (12) ◽  
pp. 1991-2000 ◽  
Author(s):  
Christian Bakker ◽  
Marjolein E. de Vugt ◽  
Deliane van Vliet ◽  
Frans R.J. Verhey ◽  
Yolande A. Pijnenburg ◽  
...  
Keyword(s):  
Unmet Needs ◽  
Neuropsychiatric Symptoms ◽  
The Elderly ◽  
Care Needs ◽  
Young Onset ◽  
Future Care ◽  
Camberwell Assessment Of Need ◽  
Young Onset Dementia ◽  
The Relationship ◽  
Level Of Agreement

ABSTRACTBackground: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.

scholarly journals Differences in neuropsychiatric symptoms between nursing home residents with young-onset dementia and late-onset dementia

2018 ◽  
Vol 23 (5) ◽  
pp. 581-586 ◽  
Author(s):  
Britt Appelhof ◽  
Christian Bakker ◽  
Jeannette C. L. Van Duinen-van Den IJssel ◽  
Sandra A. Zwijsen ◽  
Martin Smalbrugge ◽  
...  
Keyword(s):  
Nursing Home ◽  
Late Onset ◽  
Neuropsychiatric Symptoms ◽  
Nursing Home Residents ◽  
Young Onset ◽  
Young Onset Dementia ◽  
Late Onset Dementia

scholarly journals Prevalence and Correlates of Neuropsychiatric Symptoms in Nursing Home Patients With Young-Onset Dementia: The BEYOnD Study

2016 ◽  
Vol 17 (6) ◽  
pp. 495-500 ◽  
Author(s):  
Ans J.M.J. Mulders ◽  
Ilma W.F. Fick ◽  
Hans Bor ◽  
Frans R.J. Verhey ◽  
Sytse U. Zuidema ◽  
...  
Keyword(s):  
Nursing Home ◽  
Neuropsychiatric Symptoms ◽  
Young Onset ◽  
Nursing Home Patients ◽  
Young Onset Dementia

scholarly journals What do health professionals need to know about young onset dementia? An international Delphi consensus study

2022 ◽  
Vol 22 (1) ◽  
Author(s):  
Leah Couzner ◽  
Sally Day ◽  
Brian Draper ◽  
Adrienne Withall ◽  
Kate E. Laver ◽  
...  
Keyword(s):  
Health Professionals ◽  
Delphi Study ◽  
Online Survey ◽  
Psychosocial Support ◽  
Neuropsychiatric Symptoms ◽  
Contributing Factors ◽  
Delphi Consensus ◽  
Young Onset ◽  
Family Approach ◽  
Young Onset Dementia

Abstract Background People with young onset dementia (YOD) have unique needs and experiences, requiring care and support that is timely, appropriate and accessible. This relies on health professionals possessing sufficient knowledge about YOD. This study aims to establish a consensus among YOD experts about the information that is essential for health professionals to know about YOD. Methods An international Delphi study was conducted using an online survey platform with a panel of experts (n = 19) on YOD. In round 1 the panel individually responded to open-ended questions about key facts that are essential for health professionals to understand about YOD. In rounds 2 and 3, the panel individually rated the collated responses in terms of their importance in addition to selected items from the Dementia Knowledge Assessment Scale. The consensus level reached for each statement was calculated using the median, interquartile range and percentage of panel members who rated the statement at the highest level of importance. Results The panel of experts were mostly current or retired clinicians (57%, n = 16). Their roles included neurologist, psychiatrist and neuropsychiatrist, psychologist, neuropsychologist and geropsychologist, physician, social worker and nurse practitioner. The remaining respondents had backgrounds in academia, advocacy, or other areas such as law, administration, homecare or were unemployed. The panel reached a high to very high consensus on 42 (72%) statements that they considered to be important for health professionals to know when providing care and services to people with YOD and their support persons. Importantly the panel agreed that health professionals should be aware that people with YOD require age-appropriate care programs and accommodation options that take a whole-family approach. In terms of identifying YOD, the panel agreed that it was important for health professionals to know that YOD is aetiologically diverse, distinct from a mental illness, and has a combination of genetic and non-genetic contributing factors. The panel highlighted the importance of health professionals understanding the need for specialised, multidisciplinary services both in terms of diagnosing YOD and in providing ongoing support. The panel also agreed that health professionals be aware of the importance of psychosocial support and non-pharmacological interventions to manage neuropsychiatric symptoms. Conclusions The expert panel identified information that they deem essential for health professionals to know about YOD. There was agreement across all thematic categories, indicating the importance of broad professional knowledge related to YOD identification, diagnosis, treatment, and ongoing care. The findings of this study are not only applicable to the delivery of support and care services for people with YOD and their support persons, but also to inform the design of educational resources for health professionals who are not experts in YOD.

scholarly journals The Determinants of Quality of Life of Nursing Home Residents with Young-Onset Dementia and the Differences between Dementia Subtypes

2017 ◽  
Vol 43 (5-6) ◽  
pp. 320-329 ◽  
Author(s):  
Britt Appelhof ◽  
Christian Bakker ◽  
Jeannette C.L. Van Duinen-van den Ijssel ◽  
Sandra A. Zwijsen ◽  
Martin Smalbrugge ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Nursing Home ◽  
Frontotemporal Dementia ◽  
Neuropsychiatric Symptoms ◽  
Nursing Home Residents ◽  
Young Onset ◽  
Alzheimer Dementia ◽  
Young Onset Dementia ◽  
Dementia Subtype

Aims: The aims of this study are to (1) explore the determinants of quality of life (QoL) in nursing home residents with young-onset dementia (YOD), (2) investigate whether there are differences between dementia subtypes (Alzheimer dementia, vascular/mixed dementia, frontotemporal dementia, other) regarding these determinants, and (3) compare QoL profiles of YOD nursing home residents across dementia subtypes. Methods: This cross-sectional study included 207 nursing home residents. Multilevel modeling was used to determine the relationships between QoL and neuropsychiatric symptoms (NPS), dementia severity, psychotropic drug use (PDU), dementia subtype, age, and gender. Additional multilevel models were used to compare aspects of QoL between dementia subtypes. Results: Residents' QoL was negatively associated with advanced dementia, PDU, and NPS. In general, the relationships between the determinants and QoL were similar across the dementia subtypes. Aspects of QoL differed by dementia subtype. Residents with frontotemporal dementia showed less negative emotions, accepted more help and experienced better quality of relationships with professional caregivers, had a more positive self-image, felt more comfortable in the nursing home environment, and experienced lower quality of social relationships. Conclusions: Considering the high rates of NPS and PDU in YOD residents and their negative associations with QoL, we recommend emphasizing services to manage and reduce NPS and PDU in nursing home residents with YOD. Furthermore, our findings suggest accounting for differences in aspects of QoL by dementia subtype to address specific needs and thereby improve QoL.

scholarly journals 327 - The Course and Predictors of Quality of Life in Nursing Home Residents with Young-onset Dementia

2020 ◽  
Vol 32 (S1) ◽  
pp. 85-86
Author(s):  
Lihui Pu ◽  
Christian Bakker ◽  
Britt Appelhof ◽  
Jeannette C.L. Van Duinen-van den Ijssel ◽  
Sandra A. Zwijsen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Drug Use ◽  
Nursing Homes ◽  
Positive Affect ◽  
Neuropsychiatric Symptoms ◽  
Significant Decline ◽  
Advanced Dementia ◽  
Young Onset ◽  
Young Onset Dementia

Background: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.Objective:To explore the course of QoL in institutionalized people with YOD and resident-related predictors of that course.Methods: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.Results: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 QoLConclusion: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.

scholarly journals Process Evaluation of an Intervention for the Management of Neuropsychiatric Symptoms in Young-Onset Dementia

2018 ◽  
Vol 19 (8) ◽  
pp. 663-671 ◽  
Author(s):  
Britt Appelhof ◽  
Christian Bakker ◽  
Jeannette C.L. van Duinen-van den IJssel ◽  
Sandra A. Zwijsen ◽  
Martin Smalbrugge ◽  
...  
Keyword(s):  
Process Evaluation ◽  
Neuropsychiatric Symptoms ◽  
Young Onset ◽  
Young Onset Dementia

scholarly journals Non-pharmacological interventions for persons with dementia: what are they and how should they be studied?

2018 ◽  
Vol 30 (3) ◽  
pp. 281-283 ◽  
Author(s):  
Jiska Cohen-Mansfield
Keyword(s):  
Psychological Symptoms ◽  
Neuropsychiatric Symptoms ◽  
Lewy Body Dementia ◽  
Well Being ◽  
Pharmacological Interventions ◽  
Young Onset ◽  
Overview Of Systematic Reviews ◽  
Young Onset Dementia ◽  
The Impact

The publication of four papers concerning non-pharmacological interventions for persons with dementia heralds progress in the science of dementia care. The four papers are very diverse in focus and methodology, and include a study of the impact of a visual arts program on quality of life, communication, and well-being by Windle et al. (2017); an overview of systematic reviews of pharmacological and non-pharmacological interventions for the treatment of behavioral and psychological symptoms of dementia by Dyer et al. (2017); a systematic review of the efficacy of intervention in people with Lewy body dementia by Morrin et al. (2017); and a protocol of the Behavior and Evolution of Young Onset Dementia part two (BEYOND-II) study, an intervention study aimed at improvement in the management of neuropsychiatric symptoms in institutionalized people with young onset dementia by van Duinen-van den IJssel et al. (2017).

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