Impact of early onset dementia on caregivers: a review

Vliet, Deliane van; Vugt, Marjolein E. de; Bakker, Christian; Koopmans, Raymond T.C.M.; Verhey, Frans R.J.

doi:10.1002/gps.2439

Cited by 199 publications

(201 citation statements)

References 37 publications

(80 reference statements)

Supporting

Mentioning

181

Contrasting

Unclassified

Order By: Relevance

“…People with young-onset dementia (YOD), defined as dementia with an onset of symptoms before the age of 65 years, often encounter specific challenges such as a substantial delay in diagnosis, loss of employment, financial issues, social isolation, changes in relationships, and lack of meaningful daytime activities, all adding to the negative impact on QoL [19][20][21][22] . Indeed, current research suggests that younger age is associated with a worse QoL in LOD [9] .…”

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

Self Cite

1,694

View full text Add to dashboard Cite

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.

show abstract

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

Self Cite

1,694

View full text Add to dashboard Cite

show abstract

“…Younger adults consider the experience, involving lifestyle changes and new roles, a more significant shift than older adults [12][13][14] . Memory disorders bring physical and cognitive decline, fear of losing control over one's life, and the notion of imminent mortality, all of which are typically associated with old age [50] .…”

Section: Discussionmentioning

confidence: 99%

“…Previous research shows how memory disorders change family roles and dynamics [5,[8][9][10] . Interestingly, people with early-onset memory disorders and their families face slightly different challenges from those who are older at the time of onset [11][12][13][14] . Previous studies concerning the subjective experiences of PMDs focus on their challenges, coping strategies [15][16][17][18] , the diagnosis' impact on their selfhood and identity [11,[19][20][21] , subjective reality [22,23] and dignity [24,25] .…”

mentioning

confidence: 99%

Managing life-altering situations: A qualitative longitudinal study of the experiences of people with memory disorders and their family caregivers

Pesonen

Remes

Isola

2014

JNEP

View full text Add to dashboard Cite

Objective: Diagnosis of a family member with a memory disorder creates significant psychosocial coping demands for the whole family. The aim of this study was to examine shared experiences of people with memory disorders and their family caregivers during the first years following diagnosis to construct a substantive theory. The study focused on factors related to mutual processes used for managing such life-altering situations. Methods:A qualitative longitudinal research design informed by grounded theory was used. Experiences shared by eight people with memory disorders and their closest family caregivers were determined using semi-structured interviews (n = 23) in their homes. The study participants were recruited from a memory clinic at a tertiary care hospital.Results: A core category, 'Process of accepting memory disorder as part of family life', and related categories and subcategories were formulated from the data. The subcategories 'Acknowledging available qualities and resources', 'Seeking meaningful social support', and 'Living for today', were mutual components of the categories 'Adjusting to altering self', and 'Adapting to a new caregiver role'. The contents of each subcategory comprise a continuum of positive and negative dimensions of adjustment and distress.Conclusions: Accepting a memory disorder as part of family life is a mutual process involving concurrent and specific requirements of both people with memory disorders and family caregivers. Acknowledging the potential of the person diagnosed, opportunities for social support, and living for today, reinforce the process of managing life after a memory disorder diagnosis.

show abstract

“…In addition to these issues, support for early-onset dementia patients and patients in the early stage of dementia to find a job or care aimed at these patients were agreed to be necessary in our analysis (Q2, Q7, and Q8). Although the early diagnosis of dementia is known to be important, the needs for special care and interventions for patients with dementia have not been discussed until recently [57,58,59,60]. Further discussion and analysis are required for this topic [61,62].…”

Section: Discussionmentioning

confidence: 99%

Present Status and Road Map to Achieve Inclusive and Holistic Care for Dementia in a Japanese Community: Analysis Using the Delphi Method

Takechi

Mōri

Hashimoto³

et al. 2014

Dement Geriatr Cogn Disord

View full text Add to dashboard Cite

Background/Aims: Dementia is a priority issue in the public health realm. However, few reports address problems of dementia in the real world or provide comprehensive road maps to solve these problems. Methods: Nine groups of questions covering 4 topics were discussed using the Delphi method, relating to (1) current achievements and challenges regarding inclusive and holistic care in the community, (2) patients who are at a high risk of being excluded from care, (3) suggestions for a road map for the establishment of better and more inclusive medical and social care, and (4) unmet needs of patients with dementia. Results: In total, 477 opinions were obtained. Family issues, psychological/behavioral symptoms, and complications secondary to physical disorders are main factors for being excluded from care. To create a road map for care we have to address the topics of reaffirming care principles, multidisciplinary coalitions, and education for stakeholders. Conclusion: Further effective collaboration to promote dementia care is required.

show abstract

Impact of early onset dementia on caregivers: a review

Cited by 199 publications

References 37 publications

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

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

Managing life-altering situations: A qualitative longitudinal study of the experiences of people with memory disorders and their family caregivers

Present Status and Road Map to Achieve Inclusive and Holistic Care for Dementia in a Japanese Community: Analysis Using the Delphi Method

Contact Info

Product

Resources

About