IssuEs in Palliative care for people in advanced and terminal stages of Young-onset and Late-Onset dementia in GErmany (EPYLOGE): the study protocol

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.

Download Full-text

Characteristics of Young-Onset and Late-Onset Dementia Patients at a Remote Memory Clinic

Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques ◽

10.1017/cjn.2020.8 ◽

2020 ◽

Vol 47 (3) ◽

pp. 320-327

Author(s):

Jennifer F. W. Wong ◽

Andrew Kirk ◽

Landon Perlett ◽

Chandima Karunanayake ◽

Debra Morgan ◽

...

Keyword(s):

Late Onset ◽

Remote Memory ◽

Memory Clinic ◽

Rural And Remote ◽

Caregiver Support ◽

Young Onset ◽

Highly Educated ◽

Dementia Patients ◽

Patient Groups ◽

Late Onset Dementia

ABSTRACT:Background:Young-onset dementia (YOD) is defined as the onset of dementia symptoms before the age of 65 years and accounts for 2–8% of dementia. YOD patients and their caregivers face unique challenges in diagnosis and management. We aimed to compare the characteristics of rural YOD and late-onset dementia (LOD) patients at a rural and remote memory clinic in Western Canada.Methods:A total of 333 consecutive patients (YOD = 61, LOD = 272) at a rural and remote memory clinic between March 2004 and July 2016 were included in this study. Each patient had neuropsychological assessment. Health, mood, function, behaviour and social factors were also measured. Both groups were compared using χ2 tests and independent sample tests.Results:YOD patients were more likely to be married, employed, current smokers and highly educated. They reported fewer cognitive symptoms, but had more depressive symptoms. YOD patients were less likely to live alone and use homecare services. YOD caregivers were also more likely to be a spouse and had higher levels of distress than LOD caregivers. Both YOD and LOD patient groups were equally likely to have a driver’s licence.Conclusions:Our findings indicate YOD and LOD patients have distinct characteristics and services must be modified to better meet YOD patient needs. In particular, the use of homecare services and caregiver support may alleviate the higher levels of distress found in YOD patients and their caregivers. Additional research should be directed to addressing YOD patient depression, caregiver distress and barriers to services.

Download Full-text

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

Aging & Mental Health ◽

10.1080/13607863.2018.1428935 ◽

2018 ◽

Vol 23 (5) ◽

pp. 581-586 ◽

Cited By ~ 5

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

Download Full-text

Patients with young-onset dementia in an older people's mental health service

BJPsych Bulletin ◽

10.1192/bjb.2020.89 ◽

2020 ◽

pp. 1-5

Author(s):

Michael Yeung ◽

Katherine MacFarland ◽

Vincent Mlilo ◽

Nathan Dean ◽

Benjamin R. Underwood

Keyword(s):

Late Onset ◽

Rare Condition ◽

Service Level ◽

Case Review ◽

Young Onset ◽

Dementia Patients ◽

Level Data ◽

Diagnosis Of Dementia ◽

Young Onset Dementia ◽

Late Onset Dementia

Aims and method Currently, no separate service exists for patients with young-onset dementia in Cambridgeshire. These patients are managed together with late-onset dementia patients within old age psychiatry services. To inform service design, we sought to characterise young-onset dementia patients in our population. We first analysed service-level data and supplemented this with a detailed case review of 90 patients. Results Young-onset dementia remains a relatively rare condition. Only a small proportion of those referred for assessment receive a diagnosis of dementia. Data collected on presenting complaints, comorbidities, medication and Health of the Nation Outcome Scales scores associated young-onset dementia with a greater incidence of depression than late-onset dementia. Outcomes in the two groups did not appear to differ. Clinical implications The data presented here do not suggest a need to create a separate service. Practitioners should be aware of the increased incidence of depression observed in this group.

Download Full-text

Faculty Opinions recommendation of Time to diagnosis in young-onset dementia as compared with late-onset dementia.

Faculty Opinions – Post-Publication Peer Review of the Biomedical Literature ◽

10.3410/f.716747815.792102819 ◽

2012 ◽

Author(s):

Brandy Matthews

Keyword(s):

Late Onset ◽

Young Onset ◽

Time To Diagnosis ◽

Young Onset Dementia ◽

Late Onset Dementia

Download Full-text

Time to diagnosis in young-onset dementia as compared with late-onset dementia

Psychological Medicine ◽

10.1017/s0033291712001122 ◽

2012 ◽

Vol 43 (2) ◽

pp. 423-432 ◽

Cited By ~ 74

Author(s):

D. van Vliet ◽

M. E. de Vugt ◽

C. Bakker ◽

Y. A. L. Pijnenburg ◽

M. J. F. J. Vernooij-Dassen ◽

...

Keyword(s):

Symptom Onset ◽

Late Onset ◽

Linear Regression Analysis ◽

Age At Onset ◽

Multiple Linear Regression Analysis ◽

Living Situation ◽

Young Onset ◽

Time To Diagnosis ◽

Young Onset Dementia ◽

Late Onset Dementia

BackgroundThe extent to which specific factors influence diagnostic delays in dementia is unclear. Therefore, the aim of the present study was to compare duration from symptom onset to diagnosis for young-onset dementia (YOD) and late-onset dementia (LOD) and to assess the effect of age at onset, type of dementia, gender, living situation, education and family history of dementia on this duration.MethodData on 235 YOD and 167 LOD patients collected from caregivers from two prospective cohort studies were used. Multiple linear regression analysis was performed.ResultsThe duration between symptom onset and the diagnosis of YOD exceeded that of LOD by an average of 1.6 years (2.8 v. 4.4 years). Young age and being diagnosed with frontotemporal dementia were related to increases in the time to diagnosis. Subjects with vascular dementia experienced shorter time to diagnosis.ConclusionsThere is a need to raise special awareness of YOD to facilitate a timely diagnosis.

Download Full-text

The Impact of Young Onset Dementia on Informal Caregivers Compared with Late Onset Dementia: Results from the NeedYD Study

American Journal of Geriatric Psychiatry ◽

10.1016/j.jagp.2015.07.005 ◽

2016 ◽

Vol 24 (6) ◽

pp. 467-474 ◽

Cited By ~ 20

Author(s):

Joany K. Millenaar ◽

Marjolein E. de Vugt ◽

Christian Bakker ◽

Deliane van Vliet ◽

Yolande A.L. Pijnenburg ◽

...

Keyword(s):

Late Onset ◽

Informal Caregivers ◽

Young Onset ◽

Young Onset Dementia ◽

The Impact ◽

Late Onset Dementia

Download Full-text

206 - Suicide and euthanasia in young onset dementia

International Psychogeriatrics ◽

10.1017/s1041610220001969 ◽

2020 ◽

Vol 32 (S1) ◽

pp. 42-42

Keyword(s):

Suicide Ideation ◽

Late Onset ◽

Brain Disorders ◽

Life Situation ◽

Young Onset ◽

Great Transformation ◽

Young Onset Dementia ◽

Scientific Purpose ◽

Late Onset Dementia

BackgroundDementia affects people that have not reached the age of 65 years. Persons diagnosed with dementia before this age, are often referred to as people with “young onset dementia". They are normally diagnosed in a later stage of the disorder compared to their older peers. This, probably due to a larger variety of brain disorders causing dementia among young persons compared to what is the case among elderly. People with young onset dementia experience a great transformation of existential life. Studies have shown that they are more aware of the disease and depressed than people with late onset dementia. The awareness of disease increases the risk of suicide ideation in this population. Health personnel should therefore be more trained to detect and diagnose young persons with dementia at an earlier stage, to meet their needs. Providing tailored services to them and their families may contribute to prevent suicide and adequately address thoughts about ending life.Content of the SessionWe will organize four lectures with speakers from Brazil, Norway, the Netherlands and Portugal. The first lecture will contain results focusing on awareness of the disease and suicide ideation and the different awareness between persons with young onset of dementia and late onset dementia. The second and third lecture will report results from two qualitative studies, in which young persons with dementia have been interviewed express ideas about suicide and end of life. The last one will build on a case report to discuss the role of family interventions in the clinical context of YOD, including scenarios involving including scenarios involving suicidality and challenges related with the legalization of euthanasia.Scientific PurposeTo contribute to the development of knowledge and understanding of the situation of young persons with dementia and their life situation based on three scientific studies and a clinically based discussion of the topic.

Download Full-text