O1.06: The impact of young onset dementia on caregivers compared to late onset dementia: Results from the NeedYD study

AimDespite an estimated 40 000 people diagnosed with young onset dementia (YOD) in the UK, there is a general lack of awareness of the condition when compared with late onset dementia. The aim of this study was to explore the experiences and needs of people living with YOD (younger than 65 years) and gain an understanding of the issues that impact on them.SettingParticipants’ homes, support group premises or university rooms.Participants14 people with a diagnosis of YOD from a northern UK city.DesignSemistructured, in-depth interviews were audio recorded, transcribed and analysed cross-sectionally following principles of interpretative phenomenological analysis.ResultsFour superordinate themes are reported on ‘process of diagnosis’, ‘the impact of living YOD’, ‘needs of people with YOD’ and ‘living well with YOD’. Nine subordinate themes captured participant experiences of developing cognitive difficulties, after being diagnosed with YOD, and subsequently living with the condition. Key issues that emerging included a lack of general awareness of YOD; how this can delay help seeking; commonalities in prediagnosis trajectories; retrospective understanding of prediagnosis symptom patterns; the difficulties of obtaining a firm diagnosis; the importance of face-to-face support and difficulties associated with daily living. Participants also described the emotional and psychological impact of the condition and the importance of formal and informal support networks.ConclusionsPeople who have a diagnosis of YOD regard themselves as distinct from older people with dementia. Despite similar symptoms, the context in which they experience the condition creates a range of distinct psychosocial concerns not commonly well addressed by health and social care services. As awareness of YOD continues to grow, the development (or adaptation) of services that take into account the idiosyncratic needs of people with YOD should be addressed.

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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

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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.

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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

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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.

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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.

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Nursing Staff Distress Associated With Neuropsychiatric Symptoms in Young-Onset Dementia and Late-Onset Dementia

Journal of the American Medical Directors Association ◽

10.1016/j.jamda.2017.10.004 ◽

2018 ◽

Vol 19 (7) ◽

pp. 627-632 ◽

Cited By ~ 12

Author(s):

Jeannette C.L. van Duinen-van den IJssel ◽

Ans J.M.J. Mulders ◽

Martin Smalbrugge ◽

Sandra A. Zwijsen ◽

Britt Appelhof ◽

...

Keyword(s):

Nursing Staff ◽

Late Onset ◽

Neuropsychiatric Symptoms ◽

Young Onset ◽

Young Onset Dementia ◽

Late Onset Dementia

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Predictors of the Time to Institutionalization in Young- Versus Late-Onset Dementia: Results From the Needs in Young Onset Dementia (NeedYD) Study

Journal of the American Medical Directors Association ◽

10.1016/j.jamda.2012.09.011 ◽

2013 ◽

Vol 14 (4) ◽

pp. 248-253 ◽

Cited By ~ 49

Author(s):

Christian Bakker ◽

Marjolein E. de Vugt ◽

Deliane van Vliet ◽

Frans R.J. Verhey ◽

Yolande A. Pijnenburg ◽

...

Keyword(s):

Late Onset ◽

Young Onset ◽

Young Onset Dementia ◽

Late Onset Dementia

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‘This is Killing me Inside’: The Impact of Having a Parent with Young-Onset Dementia

Dementia ◽

10.1177/1471301217702977 ◽

2017 ◽

Vol 18 (3) ◽

pp. 1089-1107 ◽

Cited By ~ 3

Author(s):

Helen J Aslett ◽

Jaci C Huws ◽

Robert T Woods ◽

Joanne Kelly-Rhind

Keyword(s):

Interpretative Phenomenological Analysis ◽

Service Providers ◽

Phenomenological Analysis ◽

Parent Support ◽

Young Onset ◽

Roles And Responsibilities ◽

Affected Parent ◽

Young Onset Dementia ◽

The Impact ◽

Depth Interviews

This study explored the experience of young adults having a parent with young-onset dementia. In-depth interviews were undertaken with five participants aged between 23 and 36 years of age and these were analysed using interpretative phenomenological analysis. Participants were found to experience a number of stresses in relation to their parent’s illness, many of which were linked to loss and guilt. Five main themes were identified related to relationship changes, shifts in roles and responsibilities, support for the non-affected parent, support for self and the impact of living with their own potential risk of dementia. These findings are discussed in relation to the existing literature and suggest that individuals with a parent with young-onset dementia have needs which service providers should consider in the wider context of young-onset dementia care.

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