The Impact of Amyloid PET Disclosure on Quality of Life in Patients With Young Onset Dementia

BackgroundCognition and the ability to take care of daily activities and oneself gradually declines among people with dementia. Studies are scarce, especially regarding how people with young-onset dementia (YOD) (<65 years) experience the quality of their lives with the progression of dementia. People with dementia living alone face special challenges.AimTo examine the experience of the quality of life with YOD as a single person.MethodThe study presents a longitudinal case study with in-depth interviews exploring the experiences of a person with YOD. Individual interviews were conducted seven times over a period of three years from 2014 to 2017.FindingsWe examined if and how seven themes concerning the quality of life and well-being were fruitful for understanding the experiences of dementia in the everyday life of a single individual. The study explored needs and challenges during the development of dementia, and how the person reacted over time, set in context. The themes significant for well-being are: identity, connectedness, security, autonomy, meaning, growth and joy.ConclusionThe study shows how treatment, support, and services must be individualized when dementia develops in order to support identity, resources and mastering capacity, and promote well-being.

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P1-552: QUALITY OF LIFE (QOL) ASSESSMENTS IN INDIVIDUALS WITH YOUNG-ONSET DEMENTIA AND THEIR CAREGIVERS

Alzheimer s & Dementia ◽

10.1016/j.jalz.2018.06.564 ◽

2006 ◽

Vol 14 (7S_Part_9) ◽

pp. P545-P545

Author(s):

Divyansh Dixit ◽

Christopher Kipps ◽

John Spreadbury

Keyword(s):

Quality Of Life ◽

Young Onset ◽

Young Onset Dementia

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Young Onset Dementia study – A Prospective Cohort Study of Quality of Life and Specific Needs in Persons with Young Onset Dementia and their Families

Journal of Clinical Trials ◽

10.4172/2167-0870.1000204 ◽

2014 ◽

Vol 05 (01) ◽

Cited By ~ 1

Author(s):

Lara Hvidsten Knut Engedal

Keyword(s):

Quality Of Life ◽

Cohort Study ◽

Prospective Cohort Study ◽

Prospective Cohort ◽

Young Onset ◽

Young Onset Dementia

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

Dementia and Geriatric Cognitive Disorders ◽

10.1159/000477087 ◽

2017 ◽

Vol 43 (5-6) ◽

pp. 320-329 ◽

Cited By ~ 18

Author(s):

Britt Appelhof ◽

Christian Bakker ◽

Jeannette C.L. Van Duinen-van den Ijssel ◽

Sandra A. Zwijsen ◽

Martin Smalbrugge ◽

...

Keyword(s):

Quality Of Life ◽

Nursing Home ◽

Frontotemporal Dementia ◽

Neuropsychiatric Symptoms ◽

Nursing Home Residents ◽

Young Onset ◽

Alzheimer Dementia ◽

Young Onset Dementia ◽

Dementia Subtype

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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Quality of life in young onset dementia: an updated systematic review

Trends in Psychiatry and Psychotherapy ◽

10.1590/2237-6089-2015-0049 ◽

2016 ◽

Vol 38 (1) ◽

pp. 6-13 ◽

Cited By ~ 18

Author(s):

Maria Alice Tourinho Baptista ◽

Raquel Luiza Santos ◽

Nathália Kimura ◽

Isabel Barbeito Lacerda ◽

Aud Johannenssen ◽

...

Keyword(s):

Quality Of Life ◽

Systematic Review ◽

Unmet Needs ◽

Well Being ◽

Future Perspective ◽

Young Onset ◽

Age Related ◽

Thomson Reuters ◽

Young Onset Dementia

Introduction Young onset dementia (YOD) develops before 65 years of age and has specific age-related adverse consequences for quality of life (QoL). We systematically examined factors related to the QoL of people with YOD and their caregivers. Method This systematic review used the PRISMA methodology. The literature search was undertaken on July 5, 2015, using Cochrane, PubMed, SciELO, PsycINFO, Scopus and Thomson Reuters Web of Science electronic databases. The search keywords included early onset and young onset combined with, dementia, Alzheimer, vascular dementia, mixed dementia, frontotemporal dementia, quality of life, well-being and unmet needs. Nine studies were included. We revised objectives, study design, sample, instruments and results related to QoL. Results People with YOD rated their own QoL significantly higher than their caregivers. Greater awareness of disease among people with YOD is associated with better QoL in caregivers. A relationship was found between unmet needs and daytime activities, lack of companionship and difficulties with memory. Issues associated with unmet needs were prolonged time to diagnosis, available health services and lack of caregiver's own future perspective. Conclusion Consideration should be given to conducting investigations with more homogeneous samples and use of a clear concept of QoL. The present study highlights the need for future research in a wider range of countries, using instruments specifically for YOD. It would be interesting if studies could trace parallels with late onset dementia groups.

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The Course of Quality of Life and Its Predictors in Nursing Home Residents With Young-Onset Dementia

Journal of the American Medical Directors Association ◽

10.1016/j.jamda.2020.09.040 ◽

2020 ◽

Author(s):

Lihui Pu ◽

Christian Bakker ◽

Britt Appelhof ◽

Sandra A. Zwijsen ◽

Steven Teerenstra ◽

...

Keyword(s):

Quality Of Life ◽

Nursing Home ◽

Nursing Home Residents ◽

Young Onset ◽

Young Onset Dementia

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327 - The Course and Predictors of Quality of Life in Nursing Home Residents with Young-onset Dementia

International Psychogeriatrics ◽

10.1017/s1041610220002276 ◽

2020 ◽

Vol 32 (S1) ◽

pp. 85-86

Author(s):

Lihui Pu ◽

Christian Bakker ◽

Britt Appelhof ◽

Jeannette C.L. Van Duinen-van den Ijssel ◽

Sandra A. Zwijsen ◽

...

Keyword(s):

Quality Of Life ◽

Drug Use ◽

Nursing Homes ◽

Positive Affect ◽

Neuropsychiatric Symptoms ◽

Significant Decline ◽

Advanced Dementia ◽

Young Onset ◽

Young Onset Dementia

Background:People with young-onset dementia (YOD) living in nursing homes may experience poor quality of life (QoL) due to advanced dementia, high prevalence of neuropsychiatric symptoms and psychotropic drug use. However, the course of QoL in institutionalized people with YOD and factors that predict this course are unclear. This knowledge could help health professionals identify appropriate interventions to improve QoL in YOD.Objective:To explore the course of QoL in institutionalized people with YOD and resident-related predictors of that course.Methods:Secondary analyses were conducted with longitudinal data from the Behavior and Evolution in Young-ONset Dementia (BEYOND)-II study. A total of 278 people with YOD were recruited from 13 YOD special care units in the Netherlands. QoL was measured by the proxy assessment of Quality of Life in Dementia (QUALIDEM) questionnaire at four assessments over 18 months. Independent variables included age, gender, dementia subtype, length of stay, dementia severity, neuropsychiatric symptoms and psychotropic drug use at baseline. Multilevel modeling adjusted for correlation within nursing homes and residents was used to determine the course and predictors of QoL.Results:The total QUALIDEM score (range: 0–111) decreased over 18 months with a statistically significant decline of 0.73 points per six months. A significant increase of QoL over time was seen in the subscales “Care relationship”, “Positive self-image”, and “Feeling at home”. However, a significant decline was observed in the subscales “Positive affect”, “Social relations”, and “Something to do”. Residents’ course of QoL was positively associated with the baseline scores of the QoL, age and longer duration of stay; however, being male, having advanced dementia, Alzheimer’s disease and high rates of neuropsychiatric symptoms at baseline were negatively associated with the course of QoLConclusion:Longitudinal changes in QoL in residents with YOD were small over 18 months and QUALIDEM subscales showed multidirectional changes. The largest QoL decline in the subscale “Positive affect” suggests that interventions should be targeted to improve positive emotions, in particular for male residents with neuropsychiatric symptoms and advanced dementia.

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