Unmet Needs and Health-Related Quality of Life in Young-Onset Dementia

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

doi:10.1016/j.jagp.2013.02.006

Cited by 47 publications

(87 citation statements)

References 39 publications

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“…QOL has also been associated with an increased amount of unmet needs in the study of Hoe et al (2005). However, this effect was not shown in another study (Bakker et al, 2014).…”

Section: Difficulties In These Areasmentioning

confidence: 90%

“…Our results indicate that merely the quantity of care measured in hours was not a significant determinant for QOL, indicating that other factors related to the caregiving situation might be more important. Especially since caregivers who care for someone with YOD, frequently experience difficulties balancing their multiple roles and responsibilities with the care situation (Millenaar et al, 2016) and report low QOL (Bakker et al 2014) and psychological complaints (Riedijk, Duivenvoorden, Van Swieten, Niermeijer, & Tibben, 2009). Other variables that might be important contributors of the experienced QOL in people with YOD are the availability of stimulating activities and social contact, as they often feel a lack of meaningful activity and a loss of sense of purpose in their daily lives as they are still in an active life phase (Harris & Keady, 2004;Roach & Drummond, 2014).…”

Section: Discussionmentioning

confidence: 99%

“…To our knowledge only one study specifically investigated determinants of QOL in persons with YOD (Bakker et al, 2014). Only depression seemed to be a significant determinant of QOL.…”

Section: Difficulties In These Areasmentioning

confidence: 99%

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Determinants of quality of life in young onset dementia – results from a European multicenter assessment

Millenaar

Hvidsten

Vugt

et al. 2016

Aging & Mental Health

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Background: Promoting adaptation, improving well-being and maintaining an optimal quality of life (QOL) is an important aspect in dementia care. The purpose of this study was to identify determinants of QOL in young onset dementia, and to assess differences in QoL domains between people with Alzheimer's disease (AD) and frontotemporal dementia (FTD). Methods: In total 135 persons with AD and 58 persons with FTD were included from two prospective cohort studies. QOL was assessed with the proxy reported quality of life in Alzheimer's disease questionnaire (QoL-AD). Possible determinants were explored using multiple linear regression and included sociodemographic variables, diagnosis, dementia severity, disease awareness, neuropsychiatric symptoms, met and unmet needs and hours of personal and instrumental care. Differences between QOL domains in people with AD and FTD were calculated using Mann-Whitney U tests. Results: Lower QOL was associated with more depressive symptoms, lower disease awareness, and a higher amount of needs, both met and unmet. People with AD scored lower on the memory and higher on the friends' subscale. No differences were found for the other items. Conclusion: This study demonstrates a unique set of determinants of QOL in AD and FTD. Interventions directed towards these specific factors may improve QOL.

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“…QOL has also been associated with an increased amount of unmet needs in the study of Hoe et al (2005). However, this effect was not shown in another study (Bakker et al, 2014).…”

Section: Difficulties In These Areasmentioning

confidence: 90%

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

Determinants of quality of life in young onset dementia – results from a European multicenter assessment

Millenaar

Hvidsten

Vugt

et al. 2016

Aging & Mental Health

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“…One Dutch study found that lower levels of QoL in community-dwelling people with YOD were associated with high levels of depression [25] . In that study, no association was found between QoL and other NPS or dementia severity.…”

Section: Introductionmentioning

confidence: 99%

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

Appelhof¹,

Bakker

IJssel

et al. 2017

Dement Geriatr Cogn Disord

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1,694

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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.

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“…An accurate estimation of prevalence of early onset dementia/early onset AD, however, is not easy as different diagnostic methods and study designs were used [11]. Nevertheless, it still poses a threat to the health system and society that people with early onset dementia/AD have to face such a challenge at an early age which has a major impact on individuals and families, as well as society compared to those diagnosed at later stage of life [12,13]). The aetiology of younger onset dementia/AD is not fully understood; however, some similarities to the late onset are identified, including ethnic disparities between whites and other minorities [3].…”

Section: Introductionmentioning

confidence: 99%