scholarly journals Benefits of The Unforgettables: A Chorus for People With Dementia Together With Their Family Caregivers

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 784-784
Author(s):  
Mary Mittelman

Abstract The Unforgettables was founded in 2011 for people with dementia and their family caregivers. We hypothesized that singing and rehearsing together would providing an opportunity for people in the early and moderate stages of dementia and their family caregivers to share a normative, stimulating and social activity. Pilot study results showed that quality of life and communication with the other member of the dyad improved for people with dementia; quality of life and, social support, communication and self- esteem improved for caregivers. Moreover, people with dementia learn new songs for every performance, suggesting that this activity may slow cognitive decline. The chorus continues to rehearse and perform, and now has approximately 100 members in two locations in NYC. These findings support the recommendations of the Global Council on Brain Health by underscoring the many benefits of music performance in enhancing social engagement and providing joy to participants and the community.

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 153-154
Author(s):  
Afeez Hazzan

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.


Author(s):  
Knut Engedal

Norway has 5 million inhabitants, of whom 200,000 are aged above 80 years. The country is a welfare state, with a tax system covering most health services for its citizens. It is estimated that 78,000 people in Norway suffer from dementia, of whom 60% live at home and the remainder in residential care. In 2007, the first National Dementia Plan was launched (2007–2015), and the second in 2016 (2016–2020). The main goals of the two Plans are to develop services across the country to improve the care and quality of life for all people with dementia and their family caregivers, as well as increase the knowledge of dementia among healthcare professionals. In addition, the Plans also aim to improve awareness of dementia in society as a whole and to develop and implement measures to help create a more dementia-friendly society.


2020 ◽  
Vol 22 (4) ◽  
pp. 913-920
Author(s):  
Linchong Pothiban ◽  
Chomphoonut Srirat ◽  
Nahathai Wongpakaran ◽  
Orawan Pankong

2013 ◽  
Vol 25 (7) ◽  
pp. 1097-1105 ◽  
Author(s):  
Maria Fernanda Barroso Sousa ◽  
Raquel Luiza Santos ◽  
Cynthia Arcoverde ◽  
Pedro Simões ◽  
Tatiana Belfort ◽  
...  

ABSTRACTBackground: The validity of self-reported quality-of-life (QoL) assessments of people with dementia (PWD) is a critical issue. We designed this study to determine the non-cognitive factors that are associated with self-reported QoL and PWD QoL as rated by family caregivers.Methods: Using a cross-sectional study, we assessed QoL of 41 people with mild Alzheimer's disease (AD). The individuals with AD and their family caregivers completed the Quality of Life in Alzheimer's Disease Scale (QoL-AD), the Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia (ASPIDD), the Mini-Mental State Examination (MMSE), the Clinical Dementia Rating (CDR) scale, the Cornell Scale for Depression in Dementia (CSDD), the Pfeffer Functional Activities Questionnaire (FAQ), and the Zarit Burden Interview (ZBI). Univariate and multivariate regression analyses were conducted to examine the contribution of the various cofactors.Results: We observed a significant difference (t = 3.292, p < 0.01, d = 0.727) in the QoL measures of PWD after comparing self-reported assessments with the assessments of family caregivers. Linear regression analysis demonstrated that awareness of disease was related to PWD QoL-AD scores. Both the education levels of family caregivers and the depressive symptoms in PWD were related to the family caregivers’ ratings of PWD QoL.Conclusions: The difference between self-reported QoL and family caregivers’ ratings of QoL in people with mild dementia indicated that cognitive impairment was not the primary factor that accounted for the differences in the QoL assessments. Our findings suggested that non-cognitive factors, such as awareness of disease and depressive symptoms, played an important role in the differences between the self-reported AD QoL ratings and the caregivers’ AD QoL ratings. A major implication is that discrete measures such as cognition or level of function are likely to miss important factors that influence QoL.


2018 ◽  
Vol 48 (13) ◽  
pp. 2130-2139 ◽  
Author(s):  
Anthony Martyr ◽  
Sharon M. Nelis ◽  
Catherine Quinn ◽  
Yu-Tzu Wu ◽  
Ruth A. Lamont ◽  
...  

AbstractCurrent policy emphasises the importance of ‘living well’ with dementia, but there has been no comprehensive synthesis of the factors related to quality of life (QoL), subjective well-being or life satisfaction in people with dementia. We examined the available evidence in a systematic review and meta-analysis. We searched electronic databases until 7 January 2016 for observational studies investigating factors associated with QoL, well-being and life satisfaction in people with dementia. Articles had to provide quantitative data and include ⩾75% people with dementia of any type or severity. We included 198 QoL studies taken from 272 articles in the meta-analysis. The analysis focused on 43 factors with sufficient data, relating to 37639 people with dementia. Generally, these factors were significantly associated with QoL, but effect sizes were often small (0.1–0.29) or negligible (<0.09). Factors reflecting relationships, social engagement and functional ability were associated with better QoL. Factors indicative of poorer physical and mental health (including depression and other neuropsychiatric symptoms) and poorer carer well-being were associated with poorer QoL. Longitudinal evidence about predictors of QoL was limited. There was a considerable between-study heterogeneity. The pattern of numerous predominantly small associations with QoL suggests a need to reconsider approaches to understanding and assessing living well with dementia.


2020 ◽  
pp. 104345422097569
Author(s):  
Angie López León ◽  
Sonia Carreño Moreno ◽  
Mauricio Arias-Rojas

Objective: The purpose of this study was to describe the caregiver’s proxy-report of the quality of life (QoL) of children with cancer and the main family caregiver’s competence, and to examine the role of said competence and other care-related variables in their proxy-reported QoL of children with cancer. Method: This was a cross sectional, correlation design study conducted with 97 main family caregivers of children between the ages of 8 and 12 years with cancer residing in Colombia. The following variables were collected: main family caregiver and child sociodemographic characteristics (Survey for Dyad Care; GCPC-UN-D), The Pediatric Quality of Life Inventory 4.0 Cancer Module, and the Competence Instrument (caregiver version). Results: The mean of the children’s QoL was 102.0 points, and the caregivers’ competence score was 211.24. Caregiver’s competence ( t = 5.814, p < .01), marital status ( t = 1.925, p < .05), time as a caregiver ( t = 2.087, p < .05), number of hours spent caring for the child ( t = 2.621, p < .05), and caregiver’s previous caring experiences ( t = 2.068, p < .05) were found to influence caregiver’s proxy-report of the QoL of children with cancer. Conclusions: High competence in main family caregivers positively influence caregiver’s proxy-report of the QoL of children with cancer. Study results also suggest that nurses should consider the caregivers’ sociodemographic characteristics such as marital status, time as a caregiver, number of hours spent caring for the child, and caregiver’s previous experiences because those aspects influence main family caregivers’ proxy-report about their children’s QoL.


2006 ◽  
Vol 24 (18_suppl) ◽  
pp. 14634-14634
Author(s):  
D. Shasha

14634 Background: While EPO is widely used in the management of CT-related anemia, anemia in cancer pts may stem from causes other than CT. Tumor invasion of the bone marrow and cytokine-mediated inhibition of erythropoiesis are among the many disease-related causes of anemia in cancer. Data evaluating the use of EPO in pts not receiving CT or RT, particularly in specific tumor types, would be important information to healthcare providers. Methods: An open-label, prospective, non-randomized, multicenter pilot study was conducted to evaluate the efficacy and safety of EPO 40,000 U QW in anemic (hemoglobin [Hb] ≤ 11 g/dL) cancer pts not receiving CT or RT1. (Blood 2004;104:abstract 4223.) Treatment duration was up to 12 wks with a 4-wk post-treatment observation period. Primary efficacy endpoint was hematopoietic response during the treatment period (% of pts achieving a ≥ 1 or ≥ 2 g/dL Hb increase from baseline [BL]). Secondary endpoints included change from BL in quality of life as measured by the Linear Analog Scale Assessment (LASA). This is a retrospective subset analysis of PC pts (n = 24) enrolled in the prospective study. Results: For the safety population (all pts who received ≥ 1 EPO dose, n = 23), mean age was 71.4 ± 6.8 yrs; 21 (91.3%) had ECOG status of 0 or 1; and mean BL Hb was 10.4 ± 0.8 g/dL. Of 21 pts evaluated for efficacy, 17 (81.0%) achieved Hb increase from BL ≥ 2 g/dL, while 19 (90.5%) achieved ≥ 1 g/dL by wk 17/early withdrawal. EPO dose was increased in 5 (23.8%) pts (to 60,000 U for Hb increase < 1 g/dL after 4 wks) and held in 16 (76.2%) pts (due to Hb > 13 g/dL, with dosing resumed when Hb was ≤12 g/dL, at 30,000 U from 40,000 U or at 40,000 U from 60,000 U). Both Wk 9 and 17 LASA scores increased significantly from BL in all categories (Energy Level, Daily Activities, and Quality of Life; P < 0.001). 15 of 23 pts (65.2%) had at least one adverse event (AE); 4 (17.4%) pts had at least one serious AE. No clinically relevant thrombotic vascular events were noted. No pt received transfusion. 5 pts discontinued: 2 for AEs, 1 at pt request, and 2 at study sponsor request. Conclusions: This retrospective analysis suggests that EPO 40,000 U QW is safe and effective for treating anemia in PC pts not receiving CT or RT. [Table: see text]


2015 ◽  
Vol 27 (10) ◽  
pp. 1579-1581
Author(s):  
Henry Brodaty

The focus in dementia research on discovery of cause and cure often leaves the care part of the triad hidden from the spotlight. While clinicians, caregivers, and policy makers eagerly await these scientific developments, daily they face challenges in striving best for quality of life for people with dementia and their family caregivers. This issue of the Journal addresses six topics: three relate to service delivery – at assessment, in the community and at end of life; and one each focus on ethics, driving and suicidality.


2021 ◽  
Author(s):  
Laura Krieger

The number of older adults living in collective dwellings is increasing. It is important to research effective strategies to maintain and enhance quality of life for older adults living in collective dwellings. Meaningful leisure, such as the ability to travel, is associated with increases in quality of life for older adults. Unfortunately, many older adults, especially those living in collective dwellings, face barriers to travel. Virtual reality (VR) may help older adults living in collective dwellings overcome barriers to travel. The present study examined whether older adults living in collective dwellings tolerated and enjoyed immersive VR, and whether six weeks of virtual tourism affected their quality of life, social engagement, and loneliness. Fourteen older adults living in retirement homes in Toronto participated in this study. Results suggested that participants tolerated immersive VR without experiencing cybersickness, and that they were happier, more excited, and less anxious immediately following VR exposure. Levels of social engagement increased following the six-week virtual tourism program. These quantitative findings were further supported by qualitative interviews. No changes in quality of life or loneliness were found. Limitations include a lack of a control group and small sample size. Addressing these limitations will help to isolate the effects of the virtual tourism program on indices of well-being.


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