The experiences and needs of children living with a parent with young onset dementia: results from the NeedYD study

Millenaar, Joany; Vliet, Deliane van; Bakker, Christian; Vernooij‐Dassen, Myrra; Koopmans, Raymond T.C.M.; Verhey, Frans R.J.; Vugt, Marjolein E. de

doi:10.1017/s1041610213001890

Cited by 61 publications

(126 citation statements)

References 19 publications

(18 reference statements)

Supporting

Mentioning

122

Contrasting

Order By: Relevance

“…Topics: experiences and needs of young CG at various points in the patient’s diagnostic process and course of illness (to create a relevant support website).2) Early-onset Dementia (EOD) 2010/ Netherlands [77]Bakker et al1 informal CG; female; spouse; 46 yearsA single case study design (qualitative interviews with the CG). Topics: experiences and needs during period prior to diagnosis, diagnosis, period after diagnosis, caring, transitions in care and future perspective. 2014/ The Netherlands [78]Millenaar et al14 children CGs; eight female; mean age = 21.0 yearsSemi-structured interviews. Topics: the children’s reactions to the diagnosis, the help they received after the diagnosis, and the resulting changes in their lives.…”

Section: Resultsmentioning

confidence: 99%

How to explore the needs of informal caregivers of individuals with cognitive impairment in Alzheimer’s disease or related diseases? A systematic review of quantitative and qualitative studies

et al. 2017

View full text Add to dashboard Cite

BackgroundThis study aims to review the methodologies used to identify the needs, the existing needs assessment instruments and the main topics of needs explored among caregivers of patients with mild cognitive impairment to dementia.MethodsMEDLINE, PsycINFO, The Cochrane Library and Web of science were searched from January 1980 to January 2017. Research studies in English or French were eligible for inclusion if they fulfilled the following criteria: quantitative, qualitative and mixed method studies that used instrument, focus group or semi-structured interviews to assess the informal caregiver’s needs in terms of information, coping skills, support and service.ResultsSeventy studies (n = 39 quantitative studies, n = 25 qualitative studies and n = 6 mixed method studies) met the inclusion criteria and were included. Thirty-six quantitative instruments were identified but only one has been validated for the needs assessment of dementia caregivers: the Carer’s Needs Assessment for Dementia (CNA-D). The main areas of needs explored in these instruments were: information, psychosocial, social, psychoeducational and other needs.ConclusionsNo instrument has been developed and validated to assess the needs of informal caregivers of patients with cognitive impairment, whatever the stage and the etiology of the disease. As the perceived needs of caregivers may evolve with the progression of the disease and the dementia transition, their needs should be regularly assessed.Electronic supplementary materialThe online version of this article (doi:10.1186/s12877-017-0481-9) contains supplementary material, which is available to authorized users.

show abstract

Section: Resultsmentioning

confidence: 99%

How to explore the needs of informal caregivers of individuals with cognitive impairment in Alzheimer’s disease or related diseases? A systematic review of quantitative and qualitative studies

et al. 2017

View full text Add to dashboard Cite

show abstract

“…Demographic changes such as later childbirth, increased childbearing ages and more people having second and subsequent families mean more children will likely have a parent with the disease. The limited evidence suggests that parental dementia in families with children can lead to significant social and psychological upset, damage, tension, hardship and family break-up (Luscombe et al, 1998;Allen et al, 2009;Harris and Keady, 2009;Svanberg et al, 2010Svanberg et al, , 2011Gelman and Greer, 2011;Hutchinson et al, 2014;Millenaar et al, 2014).…”

Section: Introductionmentioning

confidence: 99%

How do young people ‘do’ family where there is a diagnosis of dementia?

Hall

Sikes

2018

Families, Relationships and Societies

View full text Add to dashboard Cite

This article presents data arising from a project that explored 22 children and young people's experiences of having a parent with dementia. A key theme from the interviews highlighted the implications dementia has for the relationship between children and their parents -specifically, how individuals 'do' and display family when their parent's personality and capacity to function as previously has been undermined. The data illustrate how these young people experience disruptions to existing family practices, and how they perpetuate a relationship with their parent in the face of dementia. It also indicates that these changes in practices -the disruption and acquired significance -contribute to children's reconceptualisation of their relationship with their parent. This article seeks to add to the literature on family practices (Morgan, 2011) and display (Finch, 2007) by using the experience of dementia to illustrate the importance of family practices when a family experiences 'crisis'. key words dementia • family practices • children and young people • biographical research

show abstract

“…Other issues are marital problems due to shifts in roles and responsibilities within the dyad, and relational challenges with children, especially younger children living at home [16]. Older children may become assimilated into a caregiver role when they normally would achieve independence, adding stress to the role reversal [17]. People living with YOD constitute a “sandwich generation” caring for their children while also having responsibilities for aging parents.…”

Section: Introductionmentioning

confidence: 99%

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

Hvidsten

Engedal

Selbæk

et al. 2018

Dement Geriatr Cogn Disord

View full text Add to dashboard Cite

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.

show abstract

The experiences and needs of children living with a parent with young onset dementia: results from the NeedYD study

Abstract: 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.

Cited by 61 publications

References 19 publications

How to explore the needs of informal caregivers of individuals with cognitive impairment in Alzheimer’s disease or related diseases? A systematic review of quantitative and qualitative studies

How to explore the needs of informal caregivers of individuals with cognitive impairment in Alzheimer’s disease or related diseases? A systematic review of quantitative and qualitative studies

How do young people ‘do’ family where there is a diagnosis of dementia?

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

Contact Info

Product

Resources

About