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 Behavior and Evolution of Young ONset Dementia part 2 (BEYOND-II) study: an intervention study aimed at improvement in the management of neuropsychiatric symptoms in institutionalized people with young onset dementia

2017 ◽  
Vol 30 (3) ◽  
pp. 437-446 ◽  
Author(s):  
J. C. L. van Duinen-van den IJssel ◽  
B. Appelhof ◽  
S. A. Zwijsen ◽  
M. Smalbrugge ◽  
F. R. J. Verhey ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Psychotropic Drug ◽  
Unmet Needs ◽  
Neuropsychiatric Symptoms ◽  
Care Program ◽  
Community Dwelling ◽  
Care Needs ◽  
Young Onset ◽  
Young Onset Dementia

ABSTRACTBackground:Both neuropsychiatric symptoms (NPS) and psychotropic drug use (PDU) are common in institutionalized People with Young Onset Dementia (PwYOD) and can produce negative outcomes such as reduced quality of life and high workload. In community-dwelling PwYOD, NPS are found to be associated with unmet care needs. This emphasizes the importance of a care program for the management of NPS in institutionalized PwYOD that also addresses unmet care needs and PDU. The objectives of the Behavior and Evolution of Young ONset Dementia part 2 (BEYOND-II) study are to develop a care program for the management of NPS in institutionalized PwYOD and to evaluate its effectiveness.Methods:The care program consists of an educational program combined with an intervention to manage NPS with the following five steps: the evaluation of psychotropic drug prescription, detection, analysis (including the detection of unmet needs), treatment and the evaluation of NPS. A stepped wedge design will be used to evaluate its effectiveness. The primary outcomes are agitation and aggression and other NPS. The secondary outcomes are PDU, quality of life, the workload of nursing staff and job satisfaction. Additionally, a process analysis and a cost-consequence analysis will be conducted.Conclusions:The study protocol of the Beyond-II study describes the development, implementation and evaluation of a care program for the management of NPS in institutionalized PwYOD. This care program provides a structured method for the management of NPS, in which unmet needs and PDU are also addressed.

scholarly journals Predeath Grief, Resourcefulness, and Perceived Stress Among Caregivers of Partners With Young-Onset Dementia

2018 ◽  
Vol 41 (7) ◽  
pp. 973-989 ◽  
Author(s):  
Karie Ruekert Kobiske ◽  
Abir K. Bekhet ◽  
Mauricio Garnier-Villarreal ◽  
Marilyn Frenn
Keyword(s):  
Perceived Stress ◽  
Online Survey ◽  
Theoretical Framework ◽  
Future Research ◽  
Resilience Theory ◽  
Moderating Effects ◽  
Cross Sectional ◽  
Young Onset ◽  
Young Onset Dementia ◽  
The Relationship

More than 200,000 Americans are currently diagnosed with young-onset dementia (YOD). YOD is dementia diagnosed prior to the age of 65. Most persons of YOD are cared for by their partners. Using the theoretical framework of Resilience Theory, this cross-sectional, correlational study examined the moderating effects of personal and social resourcefulness on the relationship between predeath grief and perceived stress among 104 YOD caregiving partners (life partners/spouses) using an online survey platform. Results indicated a large positive correlation between predeath grief and caregiver perceived stress ( r = .65; p < .001). Together predeath grief, personal resourcefulness and social resourcefulness explained 51.5% of the variance in perceived stress. Personal resourcefulness did not moderate the relationship. Social resourcefulness did positively moderate this relationship between predeath grief and perceived stress. These findings allow for a better understanding of the caregiving experience for a partner with YOD and creates opportunities for future research studies.

scholarly journals Quality of Life in People with Young-Onset Alzheimer’s Dementia and Frontotemporal Dementia

2018 ◽  
Vol 45 (1-2) ◽  
pp. 91-104 ◽  
Author(s):  
Lara Hvidsten ◽  
Knut Engedal ◽  
Geir Selbæk ◽  
Torgeir Bruun Wyller ◽  
Frøydis Bruvik ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Late Onset ◽  
Neuropsychiatric Symptoms ◽  
The Elderly ◽  
Community Dwelling ◽  
Cross Sectional ◽  
Young Onset ◽  
Proxy Version ◽  
Late Onset Dementia

Aims: The aims of this study were to compare quality of life (QOL) in people with young-onset Alzheimer’s (AD) and frontotemporal (FTD) dementia, explore variables associated with QOL, and compare QOL in young-onset dementia (YOD) and late-onset dementia (LOD). Methods: Cross-sectional data from a Nordic multicenter study of 50 community-dwelling participants with AD and 38 with FTD were included. A comparison group consisted of 100 people with LOD. QOL was measured using self-reported Euro-QOL 5-Dimension and the proxy version of Quality of Life in Alzheimer’s Disease (QOL-AD) questionnaire. Neuropsychiatric symptoms and needs were assessed using the Cornell Scale for Depression in Dementia (CSDD), Neuropsychiatric Inventory (NPI), and Camberwell Assessment of Needs in the Elderly. Multiple linear regression and multilevel modeling was used to determine variables associated with QOL. Results: We found no differences between the two YOD groups in QOL. The variables associated with QOL were scores on the CSDD, NPI, and unmet needs. The proxy QOL-AD score in YOD was significantly higher compared to LOD (median 36.0 [IQR 10.0] vs. 33.0 [IQR 9.0]). Conclusion: The QOL in Nordic people with YOD was better compared to people with LOD. Our results show depressive symptoms to be associated with QOL irrespective of age and diagnosis.

scholarly journals PROTECTIVE EFFECT OF LIFETIME EXPERIENCES ON FUNCTIONAL STATUS IN YOUNG-ONSET DEMENTIA

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S118-S119 ◽  
Author(s):  
Tram N Pham ◽  
Lauren Massimo ◽  
Katheryn A Cousins
Keyword(s):  
Functional Status ◽  
Disease Duration ◽  
Rating Scale ◽  
Leisure Activities ◽  
Late Life ◽  
Clinical Dementia Rating ◽  
Young Onset ◽  
Young Onset Dementia ◽  
The Relationship ◽  
Cognitive Lifestyle

Abstract Patients with Frontotemporal degeneration (FTD), a common form of young-onset dementia, experience decline in cognitive, social and daily functioning as the disease progresses. Research shows that lifestyle factors may be an important modifiable risk factor for dementia, but this has not been well studied in FTD. In this study, we test the hypothesis that lifetime experiences, including education, occupation, and leisure activities, are associated with better functional status in individuals with FTD. We also evaluated the relationship between timing of experiences (early, mid-life, and late-life) and functional status. Thirty-five patients (mean age 61.6±8.7; 74% male; mean disease duration 3.4 ± 2.6; mean MMSE 24.0 ± 5.5) completed the Lifetime of Experiences Questionnaire (LEQ), a comprehensive assessment of lifelong cognitive lifestyle, and the Clinical Dementia Rating Scale (CDR), which was used to assess functional status. Linear regression tested the relationship between cognitive lifestyle and functional status, with age and disease duration included as covariates. Higher total LEQ score was associated with better functional status (lower score on CDR) (β = -0.047, p = 0.009). While Young Adulthood LEQ score was not significantly associated with total CDR (β = -0.047, p = 0.176), both Mid-life (β = -0.117, p = 0.011) and Late-life (β = -0.133, p = 0.013) LEQ score significantly contributed to functional status. Our results indicate that functional status is mediated in part by cognitive lifestyle and that experiences accumulated in mid-life and late-life have a greater effect on functional status at time of diagnosis.

scholarly journals An ecological study on the relationship between supply of beds in long-term care institutions in Italy and potential care needs for the elderly

2009 ◽  
Vol 9 (1) ◽  
Author(s):  
Gianfranco Damiani ◽  
Simona C Colosimo ◽  
Lorella Sicuro ◽  
Alessandra Burgio ◽  
Alessandra Battisti ◽  
...  
Keyword(s):  
Ecological Study ◽  
Long Term Care ◽  
The Elderly ◽  
Care Needs ◽  
Term Care ◽  
The Relationship

The care needs and experiences with the use of services of people with young-onset dementia and their caregivers: a systematic review

2016 ◽  
Vol 31 (12) ◽  
pp. 1261-1276 ◽  
Author(s):  
Joany K. Millenaar ◽  
Christian Bakker ◽  
Raymond T. C. M. Koopmans ◽  
Frans R. J. Verhey ◽  
Alexander Kurz ◽  
...  
Keyword(s):  
Systematic Review ◽  
Care Needs ◽  
Young Onset ◽  
Use Of Services ◽  
Young Onset Dementia

Assessing met and unmet needs in the oldest-old and psychometric properties of the German version of the Camberwell Assessment of Need for the Elderly (CANE) – a pilot study

2013 ◽  
Vol 26 (2) ◽  
pp. 285-295 ◽  
Author(s):  
Janine Stein ◽  
Melanie Luppa ◽  
Hans-Helmut König ◽  
Steffi G. Riedel-Heller
Keyword(s):  
Elderly Population ◽  
Unmet Needs ◽  
Oldest Old ◽  
The Elderly ◽  
German Version ◽  
Healthcare Needs ◽  
Study Results ◽  
Health And Social Care ◽  
Camberwell Assessment Of Need ◽  
Assessment Of Need

ABSTRACTBackground:The current demographic and social developments in our society will lead to a significant increase in treatment and healthcare needs in the future, particularly in the elderly population. The Camberwell Assessment of Need for the Elderly (CANE) was developed in the United Kingdom to measure physical-, psychological-, and environment-related treatment as well as healthcare needs of older people in order to identify their unmet needs. So far, the German version of the CANE has not been established in health services research. Major reasons for this are a lack of publications of CANE's German version and the missing validation of the instrument.Methods:The aims of the present study were to evaluate the currently available German version of the CANE in a sample of older primary care patients. Descriptive statistics and inference-statistical analyses were calculated.Results:Patients reported unmet needs mostly in CANE's following sections: mobility/falls, physical health, continence, company, and intimate relationships. Agreement level between patients’ and relatives’ ratings in CANE was moderate to low. Evidence for the construct validity of CANE was found in terms of significant associations between CANE and other instruments or scores.Conclusions:The study results provide an important basis for studies aiming at the assessment of met and unmet needs in the elderly population. Using the German version of the CANE may substantially contribute to an effective and good-quality health and social care as well as an appropriate allocation of healthcare resources in the elderly population.

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

2014 ◽  
Vol 26 (12) ◽  
pp. 1983-1989 ◽  
Author(s):  
Raymond T.C.M. Koopmans ◽  
Renate Reinders ◽  
Deliane van Vliet ◽  
Frans R.J. Verhey ◽  
Marjolein E. de Vugt ◽  
...  
Keyword(s):  
Depressive Symptoms ◽  
Drug Use ◽  
Psychotropic Drug ◽  
Psychotropic Drugs ◽  
Unmet Needs ◽  
Community Dwelling ◽  
Young Onset ◽  
Disease Awareness ◽  
Psychotropic Drug Use ◽  
Young Onset Dementia

ABSTRACTBackground: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.

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
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