scholarly journals Unmet needs in community-living persons with dementia are common, often non-medical and related to patient and caregiver characteristics

2019 ◽  
Vol 31 (11) ◽  
pp. 1643-1654 ◽  
Author(s):  
Betty S. Black ◽  
Deirdre Johnston ◽  
Jeannie Leoutsakos ◽  
Melissa Reuland ◽  
Jill Kelly ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Unmet Needs ◽  
Neuropsychiatric Symptoms ◽  
Dementia Care ◽  
Community Living ◽  
Care Needs ◽  
Cross Sectional ◽  
Home Based ◽  
Lower Education

ABSTRACTObjective:Understanding which characteristics of persons with dementia (PWD) and their caregivers are associated with unmet needs can inform strategies to address those needs. Our purpose was to determine the percentage of PWD having unmet needs and significant correlates of unmet needs in PWD.Design:Cross-sectional data were analyzed using bivariate and hierarchical multiple linear regression analyses.Setting:Participants lived in the greater Baltimore, Maryland and Washington DC suburban area.Participants:A sample of 646 community-living PWD and their informal caregivers participated in an in-home assessment of dementia-related needs.Measurements:Unmet needs were identified using the Johns Hopkins Dementia Care Needs Assessment. Correlates of unmet needs were determined using demographic, socioeconomic, clinical, functional and quality of life characteristics of the PWD and their caregivers.Results:PWD had a mean of 10.6 (±4.8) unmet needs out of 43 items (24.8%). Unmet needs were most common in Home/Personal Safety (97.4%), General Health Care (83.1%), and Daily Activities (73.2%) domains. Higher unmet needs were significantly related to non-white race, lower education, higher cognitive function, more neuropsychiatric symptoms, lower quality of life in PWD, and having caregivers with lower education or who spent fewer hours/week with the PWD.Conclusions:Unmet needs are common in community-living PWD, and most are non-medical. Home-based dementia care can identify and address PWD’s unmet needs by focusing on care recipients and caregivers to enable PWD to remain safely at home.

scholarly journals Behavior and Evolution of Young ONset Dementia part 2 (BEYOND-II) study: an intervention study aimed at improvement in the management of neuropsychiatric symptoms in institutionalized people with young onset dementia

2017 ◽  
Vol 30 (3) ◽  
pp. 437-446 ◽  
Author(s):  
J. C. L. van Duinen-van den IJssel ◽  
B. Appelhof ◽  
S. A. Zwijsen ◽  
M. Smalbrugge ◽  
F. R. J. Verhey ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Psychotropic Drug ◽  
Unmet Needs ◽  
Neuropsychiatric Symptoms ◽  
Care Program ◽  
Community Dwelling ◽  
Care Needs ◽  
Young Onset ◽  
Young Onset Dementia

ABSTRACTBackground:Both neuropsychiatric symptoms (NPS) and psychotropic drug use (PDU) are common in institutionalized People with Young Onset Dementia (PwYOD) and can produce negative outcomes such as reduced quality of life and high workload. In community-dwelling PwYOD, NPS are found to be associated with unmet care needs. This emphasizes the importance of a care program for the management of NPS in institutionalized PwYOD that also addresses unmet care needs and PDU. The objectives of the Behavior and Evolution of Young ONset Dementia part 2 (BEYOND-II) study are to develop a care program for the management of NPS in institutionalized PwYOD and to evaluate its effectiveness.Methods:The care program consists of an educational program combined with an intervention to manage NPS with the following five steps: the evaluation of psychotropic drug prescription, detection, analysis (including the detection of unmet needs), treatment and the evaluation of NPS. A stepped wedge design will be used to evaluate its effectiveness. The primary outcomes are agitation and aggression and other NPS. The secondary outcomes are PDU, quality of life, the workload of nursing staff and job satisfaction. Additionally, a process analysis and a cost-consequence analysis will be conducted.Conclusions:The study protocol of the Beyond-II study describes the development, implementation and evaluation of a care program for the management of NPS in institutionalized PwYOD. This care program provides a structured method for the management of NPS, in which unmet needs and PDU are also addressed.

scholarly journals Unmet Needs and Quality of Life of Caregivers of Korean Breast Cancer Survivors: A Cross-Sectional Study

2020 ◽  
Author(s):  
Jong Won Lee ◽  
Jihyoun Lee ◽  
Min Hyuk Lee ◽  
Se Kyung Lee ◽  
Wan Sung Kim ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Regression Analysis ◽  
Cancer Survivors ◽  
Multiple Regression Analysis ◽  
Multiple Regression ◽  
Breast Cancer Survivors ◽  
Unmet Needs ◽  
Cross Sectional

Abstract Backgroud: As the survival rates of cancer patients have been increasing due to early diagnosis and technological advances in treatment, their caregiver burden has also emerged as an important issue. In view of this situation, this study aims to investigate the unmet needs and quality of life of caregivers of Korean breast cancer survivors.Methods: A multicenter cross-sectional interview survey was performed among 160 caregivers of Korean breast cancer survivors. Caregivers who gave written informed consent to participate completed the Comprehensive Needs Assessment Tool for Cancer Caregivers and EuroQol-5 Dimensions. Data were analyzed using the t-test, ANOVA and multiple regression analysis.Results: The mean age of the caregivers was 46.4 years, 44.4% (71/160) were spouses of patients, and 52.5% (84/160) were personally taking care of cancer survivors. Unmet needs were highest in the ‘healthcare staff’ domain (mean ± SD: 1.69 ±1.11), and the item with the highest level of unmet needs was ‘needed information about the current status of the patient’s illness and its future courses’ (1.98 ± 1.04). Unmet needs were correlated with age, educational level, marital status, employment, religion and psychosocial status. Poorer quality of life was closely related to higher levels of unmet needs. In multiple regression analysis, age, employment, religion, and levels of stress and despair were closely associated with unmet needs.

scholarly journals Characteristics Associated with Quality of Life in Long-Term Care Residents with Dementia: A Cross-Sectional Study

2016 ◽  
Vol 42 (3-4) ◽  
pp. 186-197 ◽  
Author(s):  
Maartje S. Klapwijk ◽  
Monique A.A. Caljouw ◽  
Marjoleine J.C. Pieper ◽  
Jenny T. van der Steen ◽  
Wilco P. Achterberg
Keyword(s):  
Quality Of Life ◽  
Social Relations ◽  
Long Term Care ◽  
Neuropsychiatric Symptoms ◽  
Pulmonary Diseases ◽  
Severe Dementia ◽  
Cross Sectional ◽  
Term Care

Background: To determine which characteristics are associated with quality of life (QOL) in residents with moderate to very severe dementia in long-term care facilities (LTCFs). Material and Methods: This was a cross-sectional analysis of a cluster randomized controlled study in 12 Dutch LTCFs that enrolled 288 residents, with moderate to severe dementia assessed with the Reisberg Global Deterioration Scale (Reisberg GDS) and QOL with the QUALIDEM. Characteristics that were hypothesized to be associated with the six domains of QOL (applicable to very severe dementia) included demographic variables, activities of daily living (Katz ADL), cognitive performance (Cognitive Performance Scale; CPS), pain (Pain Assessment Checklist for Seniors with Limited Ability to Communicate; PACSLAC-D), neuropsychiatric symptoms (Neuropsychiatric Inventory-Nursing Home Version; NPI-NH) and comorbidities. Results: Multivariate logistic regression modelling showed associations with age in the domain Social isolation [odds ratio, OR, 0.95 (95% confidence interval, CI, 0.91-0.99)], ADL level in the domain Positive affect [OR 0.89 (95% CI 0.83-0.95)] and the domain Social relations [OR 0.87 (95% CI 0.81-0.93)], severity of dementia in the domain Social relations [OR 0.28 (95% CI 0.12-0.62)] and in the domain Social isolation [OR 2.10 (95% CI 1.17-3.78)], psychiatric disorders in the domain Positive affect [OR 0.39 (95% CI 0.17-0.87)] and pulmonary diseases in the domain Negative affect [OR 0.14 (95% CI 0.03-0.61)] of the QUALIDEM. Neuropsychiatric symptoms were independently associated with all six domains of the QUALIDEM [OR 0.93 (95% CI 0.90-0.96) to OR 0.97 (95% CI 0.95-0.99)]. Pain was associated with the domains Care relationship [OR 0.92 (95% CI 0.84-1.00)] and Negative affect [OR 0.92 (95% CI 0.85-1.00)]. Conclusion: QOL in dementia is independently associated with age, ADL, dementia severity, pain, psychiatric disorders, pulmonary diseases and neuropsychiatric symptoms. It is possible to detect persons with dementia at risk for a lower QOL. This information is important for developing personalized interventions to improve QOL in persons with dementia in LTCFs.

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

2018 ◽  
Vol 45 (1-2) ◽  
pp. 91-104 ◽  
Author(s):  
Lara Hvidsten ◽  
Knut Engedal ◽  
Geir Selbæk ◽  
Torgeir Bruun Wyller ◽  
Frøydis Bruvik ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Late Onset ◽  
Neuropsychiatric Symptoms ◽  
The Elderly ◽  
Community Dwelling ◽  
Cross Sectional ◽  
Young Onset ◽  
Proxy Version ◽  
Late Onset Dementia

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.

QOLP-30. LONG-TERM UNMET SUPPORTIVE CARE NEEDS OF TYA CHILDHOOD BRAIN TUMOUR SURVIVORS AND THEIR CAREGIVERS: A CROSS-SECTIONAL SURVEY

2021 ◽  
Vol 23 (Supplement_6) ◽  
pp. vi189-vi189
Author(s):  
Emma Nicklin ◽  
Galina Velikova ◽  
Adam Glaser ◽  
Michelle Kwok-WIlliam ◽  
Miguel Debono ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Supportive Care ◽  
Brain Tumour ◽  
Unmet Needs ◽  
Supportive Care Needs ◽  
Care Needs ◽  
Long Term Follow Up

Abstract INTRODUCTION The supportive care needs of long-term childhood brain tumour survivors, now teenagers and young adults (TYAs), and their caregivers are largely unknown. TYAs are a unique patient cohort with specific challenges and vulnerabilities differing from children or older adults. We aimed to describe their supportive care needs and explore associations between needs and quality of life (QoL).This is the first study to collect quantitative data about needs in this survivorship group. METHODS Participants were recruited from long-term follow-up clinics (in three National Health Service Trusts in England) and online. Participants included childhood brain tumour survivors, ≥ 5 years from diagnosis, currently aged 13-30, and their primary caregivers. Survivors completed the Supportive Care Needs Survey (SCNS) Short-Form and Paediatric Functional Assessment of Cancer Therapy – Brain (Peds-FACT-Br). While caregivers completed the SCNS-Partners and Caregivers (SCNS-P&C) and the Caregiver Quality of Life Index–Cancer (CQOLC). RESULTS In total, 112 individuals (69 survivors/43 caregivers) participated. Survivors reported on average 9.4 (±8.5) unmet needs. Needs were greatest in the psychological domain, with anxiety (60.3%), uncertainty about the future (50.7%) and feeling down and depressed (48.5%) most commonly reported. Caregivers reported on average 12.4 (±12.3) unmet needs. Again, the greatest number of unmet needs were observed in the psychological domain. Many caregivers also reported information needs around financial support/government benefits (42.9%) and possible survivor fertility problems (42.9%). Multivariable linear regression analysis showed that female survivors, unemployed survivors, survivors further away from diagnosis, and single caregivers were more likely to report unmet needs. More unmet needs were significantly associated with poorer QoL in survivors and caregivers. CONCLUSION This research provides leads to improving supportive care and long-term follow-up services. Psychological support appears to be the biggest gap in care. Understanding unmet needs and recognising what services are required is critical to improving quality of long-term survival.

scholarly journals Sleep, Activity, and Well-Being In Persons With Dementia: Findings From the Healthy Patterns Trial

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 546-546
Author(s):  
Nancy Hodgson ◽  
Darina Petrovsky
Keyword(s):  
Quality Of Life ◽  
Neuropsychiatric Symptoms ◽  
Community Outreach ◽  
Well Being ◽  
Lessons Learned ◽  
Improve Quality ◽  
Home Based ◽  
Wake Patterns ◽  
One Year

Abstract Irregular sleep-wake patterns are common in persons living with dementia (PLWD), pose a great burden to caregivers, and are the principal causes of distress and institutionalization of PLWD. A growing body of research supports the importance of activity-based interventions to reduce the frequency and intensity of sleep wake disruption, reduce neuropsychiatric symptoms, and improve quality of life. To date, there are no studies linking sleep disruption and well-being with the nature and timing of activity. This session focuses on lessons learned from the Healthy Patterns Study - a randomized trial of a home-based activity intervention in 200 dyads of PLWD and their caregivers (NCT03682185). Session 1 focuses on the main findings from the clinical trial. Session 2 focuses on the cultural adaptation of the timed activity protocol to improve quality of life (QOL), improve sleep and reduce neuropsychiatric symptoms in older Latinos Session 3 describes the community outreach efforts used over a one-year period to recruit a diverse sample of PLWD and their caregivers for the Healthy Patterns trial. Session 4 examine the relationship between caregiver mastery and neuropsychiatric symptoms in PLWD. Together these findings highlight the complex role of sleep and wake activity in promoting well-being in persons with dementia.

scholarly journals Social support and unmet social needs in life after stroke: a cross-sectional observational study

2019 ◽  
Author(s):  
Sophie Mirabell Lehnerer ◽  
Benjamin Hotter ◽  
Inken Padberg ◽  
Petra Knispel ◽  
Dike Remstedt ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Caregiver Burden ◽  
Unmet Needs ◽  
Social Needs ◽  
Stroke Patients ◽  
Cross Sectional ◽  
Degree Of Disability

Abstract Background: Stroke patients are often affected by long-term disabilities with needs concerning social issues. There is relatively little consideration of social recovery of patients and the support required to return to work, receive social benefits, participate in daily life activities, maintain contact with family and friends and to organize financial affairs. In our study we aimed to investigate if existing tools record social needs adequately. We analyzed the current provision of social support provided in long-term care after stroke and whether unmet social needs were associated with quality of life, caregiver burden, overall function and degree of disability. Methods: Our analysis is part of the Managing Aftercare of Stroke study (MAS-I), a cross-sectional observational study of patient needs 2-3 years after initial stroke. Assessment tools included the Nikolaus-score (social situation), the EuroQoL (quality of life), the German Burden Scale for Family Caregivers (caregiver burden), the modified Rankin Scale (disability / dependence), Stroke Impact Scale (function and degree of disability) and the Stroke Survivor Needs Questionnaire (unmet needs). Results: Overall 57 patients were included in MAS-I, with ten patients classified in urgent need of socio-economic support according to the Nikolaus-score. Patients with lower than normal Nikolaus-score had a higher degree of disability. Thirty percent of all patients had never received professional social support. Social worker contact happened mostly during the stay in acute hospital or rehabilitation institution. Only four patients (11%) reported long-term support after discharge. Apart from social worker contact during acute care, 43% of patients had unmet needs in the long-term aftercare. Forty percent of all patients included in MAS-I were recommended for social work intervention after an in-depth analysis of their situation. Finally, we saw that unmet social needs were associated with lower quality of life and higher caregiver burden. Conclusions: Our data suggest significant unmet needs in social care in long-term stroke patients. Screening tools for unmet social needs such as the Nikolaus-score do not holistically report patients’ needs.

scholarly journals Unmet needs and quality of life of caregivers of Korean breast cancer survivors: a cross-sectional study

2021 ◽  
Vol 101 (2) ◽  
pp. 69
Author(s):  
Jong Won Lee ◽  
Jihyoun Lee ◽  
Min Hyuk Lee ◽  
Se Kyung Lee ◽  
Wan Sung Kim ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Cancer Survivors ◽  
Breast Cancer Survivors ◽  
Unmet Needs ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cross Sectional

scholarly journals Informal Caregivers’ Roles in Dementia: The Impact on Their Quality of Life

Life ◽  
2020 ◽  
Vol 10 (11) ◽  
pp. 251
Author(s):  
Cindy E. Frias ◽  
Esther Cabrera ◽  
Adelaida Zabalegui
Keyword(s):  
Quality Of Life ◽  
Pearson Correlation ◽  
Neuropsychiatric Symptoms ◽  
General Health Questionnaire ◽  
Informal Caregivers ◽  
Emotional Wellbeing ◽  
Cross Sectional ◽  
Person With Dementia ◽  
The Impact

The constantly changing process of caring for a person with dementia affects the informal caregivers’ role due to its psychosocial impact. This cross-sectional study aimed to analyze the impact of the Person with Dementia informal caregiver’s role caregiver to a person with dementia on the self-perceived quality of life (QoL) of the caregiver. In total, 160 informal caregivers were recruited between January and December 2019. Informal caregivers’ quality of life was assessed using the European Quality of Life 5-Dimension scale, burden with the Zarit Burden Scale, emotional wellbeing using the General Health Questionnaire, and caregiver reactions using Caregiver Reaction Aspects. Patients’ cognitive impairment was assessed with the Mini-Mental State Examination, their quality of life using Quality of Life in Alzheimer’s Disease, and neuropsychiatric symptoms using the Neuropsychiatric Inventory. Outcomes were studied using the Pearson correlation coefficient and ANOVA test. Most informal caregivers’ outcomes were significantly associated with their quality of life. Male informal caregivers have a slightly better quality of life than female caregivers (p < 0.001). Caregiver burden (p < 0.001), psychological wellbeing (p < 0.001) and negative aspects of caregiving on health (p < 0.001) correlated moderately with informal caregivers’ quality of life. Factors associated with dementia, including the course of the illness and its severity with the presence of neuropsychiatric symptoms can negatively affect the informal caregiver’s role and produce a low self-perception of quality of life; thus, social and professional support for informal caregivers is essential.

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