scholarly journals IDENTIFYING CARE ACTIVITIES THAT WERE SUPPORTED BY AMAZON ECHO FOR CARE PARTNERS AFTER ONSET OF COGNITIVE IMPAIRMENT

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S328-S328
Author(s):  
Galina Madjaroff

Abstract There are several important challenges when addressing the needs of older adults with cognitive impairment and their care partners including the potential for diminishing emotional well-being and loss of autonomy, which could potentially lead to a lower overall quality of life for both care partners (CPs). The motivation of this study was to identify the care activities that were supported by home based technology for care partners after the onset of cognitive impairment. This work was done through gathering multiple sources of qualitative and quantitative data, including mobile application dialogue history logs, pre and post interviews, user feedback groups and home visits. The technology deployed in the home of the care partners was a Voice User Interface Intelligent Agent, specifically the Amazon Echo with its intelligent agent “Alexa.” This technology was selected because it was not built from a traditional care model, yet embodies functions that could be used for all potential forms of care, including those that achieve a higher level of quality of life goals for care partners. From this study, we can further our understanding of how to deploy and design technology that shifts the perspective from “cure to care” with a focus on the older person and their lived experience, monitoring wellness, and not just addressing illness. Results and findings indicated that daily care activities of dyads that are seemingly fundamental are actually complex care activities that emerge from using the technology that support the care partners on multiple levels in satisfying multiple needs.

2018 ◽  
Vol 12 (3) ◽  
pp. 220-232 ◽  
Author(s):  
Elizabeth Karol ◽  
Dianne Smith

Aim:The objective of this article is to identify and analyze what is known about characteristics in and around the home that support well-being for those with cognitive impairment. This could provide direction for designers of homes in general, but specifically for designers trying to meet the needs of people with cognitive impairment.Background:It has been established that there is a relationship between psychological well-being and a person’s environment. Research also shows that particular design aspects can reduce the impact of cognitive impairment. However, there is limited design expertise in the Australian housing market to create supportive spaces which will help to reduce the impact of the disability for those with cognitive impairment.Method:A literature review was carried out to determine the extent and details of what is known about the relationship of home design and its impact on emotional, psychological, or social well-being for people with cognitive impairment.Conclusions:The study indicates that researchers in various disciplines understand that pragmatic design inputs such as thermal comfort and adequate lighting are important for people with cognitive impairment. In addition, some researchers have shown or surmise that there are other “intangible” designer-controlled elements that have beneficial impacts on people with cognitive impairment. Details of these intangible elements are sparse, and how much they might improve the quality of life for a person with cognitive impairment is not well understood. Further research is required to meet a growing need.


2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 546-546
Author(s):  
Nancy Hodgson ◽  
Darina Petrovsky

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.


2019 ◽  
Vol 12 ◽  
pp. 175628641985221 ◽  
Author(s):  
Iracema Leroi ◽  
Sabina Vatter ◽  
Lesley-Anne Carter ◽  
Sarah J. Smith ◽  
Vasiliki Orgeta ◽  
...  

Cognitive stimulation therapy (CST) is widely used with people with dementia, but there is no evidence of its efficacy in mild cognitive impairment or dementia in Parkinson’s disease (PD-MCI; PDD) or dementia with Lewy bodies (DLB). We aimed to explore the impact of ‘CST-PD’, which is home-based, individualized CST adapted for this population. In a single-blind, randomized controlled exploratory pilot trial (RCT), we randomized 76 participant–dyads [PD-MCI ( n = 15), PDD ( n = 40), DLB ( n = 21) and their care partners] to CST-PD or treatment as usual (TAU). CST-PD involves home-based cognitively stimulating and engaging activities delivered by a trained care partner. Exploratory outcomes at 12 weeks included cognition (Addenbrooke’s Cognitive Evaluation; ACE-III), neuropsychiatric symptoms and function. In care partners, we assessed burden, stress and general health status. Relationship quality and quality of life were assessed in both dyad members. At 12 weeks, the ACE-III showed a nonstatistically significant improvement in the CST-PD group compared with the TAU group, although neuropsychiatric symptoms increased significantly in the former. In contrast, care partners’ quality of life ( d = 0.16) and relationship quality (‘satisfaction’, d = 0.01; ‘positive interaction’, d = 0.55) improved significantly in the CST-PD group, and care burden ( d = 0.16) and stress ( d = 0.05) were significantly lower. Qualitative findings in the CST-PD recipients revealed positive ‘in the moment’ responses to the intervention, supporting the quantitative results. In conclusion, care-partner-delivered CST-PD may improve a range of care-partner outcomes that are important in supporting home-based care. A full-scale follow-up RCT to evaluate clinical and cost effectiveness is warranted.


2003 ◽  
Vol 23 (2_suppl) ◽  
pp. 99-103 ◽  
Author(s):  
Kin-wa Ling ◽  
Flora S.Y. Wong ◽  
Wing-ki Chan ◽  
Shuk-yin Chan ◽  
Eric P. Y. Chan ◽  
...  

Objective Previous reports have documented the benefits of exercise on the well-being of renal patients. However, fewer than 50% of our end-stage renal disease (ESRD) patients engage in regular exercise. To promote exercise, we implemented a home-based exercise program. The aim of the program was to reduce barriers to exercise by helping patients to exercise at their convenience and without the need to travel. The effect of the program was evaluated 3 months after implementation. Patients and Methods Each study participant received a videotape that demonstrated 30 minutes of low-capacity aerobic exercise. Participants were advised to exercise by following the demonstration on the videotape. Encouragement was given over the telephone. Self-reports on practice were recorded in a log book that was also provided. The effect of the program was evaluated by comparing outcomes data before, and 3 months after, implementation of the program. Outcomes assessment included functional mobility (timed “Up & Go” test), muscle flexibility (“Sit & Reach” test), physical capacity (“Six-Minute Walk”), and quality of life [Kidney Disease Quality of Life Short Form (KDQOL-SF)]. Results The program began with 72 participants. Over time, 39 dropped out. The remaining 33 participants included 11 men and 22 women with a mean age of 52.8 ± 9.8 years. They exercised 3 – 7 times weekly. Significant improvements were observed in the timed “Up & Go” ( p = 0.003) and “Sit & Reach” ( p < 0.001) tests. Improvements in the “Six-Minute Walk” ( p = 0.130) and in KDQOL-SF scores for emotional well-being ( p = 0.456), pain ( p = 0.100), burden of kidney disease ( p = 0.061), and general health ( p = 0.085) were statistically insignificant. Conclusions Physically, patients with ESRD benefit from home-based low-capacity aerobic exercise. A home-based program provides an alternative to outdoor and group exercise. In view of a high drop-out rate, intensive promotion and encouragement should be considered to achieve a positive outcome.


Author(s):  
Laura Schmidt

Objectives: The competent use of technology is increasingly essential for quality of life in old age, hence autonomy, well-being, security, and participation. However, the potential of technology use for the large group of those with mild cognitive impairment (MCI) being at risk for losing their independence needs more research. In this work, we concentrate on the role of education and examine whether its impact for technology performance differs among those with and without MCI.


Dementia ◽  
2017 ◽  
Vol 17 (6) ◽  
pp. 728-743 ◽  
Author(s):  
Arthur Schall ◽  
Valentina A Tesky ◽  
Ann-Katrin Adams ◽  
Johannes Pantel

ARTEMIS (ART Encounters: Museum Intervention Study) is an art-based intervention designed especially for people with dementia and their care partners that involves a combination of museum visits and artistic activity. This paper reports the results of a randomized wait-list controlled study on the influence of the ARTEMIS intervention on the emotional state, well-being, and quality of life of dementia patients. People with mild-to-moderate dementia (n = 44) and their care partners (n = 44) visited the Frankfurt Städel Museum once a week on six pre-arranged occasions. The intervention consisted of six different guided art tours (60 minutes), followed by art-making in the studio (60 minutes). Independent museum visits served as a control condition. A mixed-methods design was used to assess several outcomes including cognitive status, emotional well-being, self-rated aspects of quality of life, and subjective evaluations by informal caregivers. In a pre-post-assessment, we found significant improvements in participants’ self-rated quality of life (t = −3.15, p < .05). In a situational assessment of emotional well-being immediately before and after each of the museum sessions, we were able to demonstrate statistically significant positive changes with medium effect sizes (dcorr = .74–.77). Furthermore, the total Neuropsychiatric Inventory score as well as the affective (depressed mood and anxiety) and apathy subscales were significantly lower after the ARTEMIS intervention (tNPI total = 2.43; tNPI affective = 2.24; tNPI apathy = 2.52; p < .05). The results show that art museum-based art interventions are able to improve the subjective well-being, mood, and quality of life in people with dementia. This promising psychosocial approach deserves further attention in future studies and consideration in community-based dementia care programs.


BMC Neurology ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Jennifer Grau-Sánchez ◽  
Emma Segura ◽  
David Sanchez-Pinsach ◽  
Preeti Raghavan ◽  
Thomas F. Münte ◽  
...  

Abstract Background Residual motor deficits of the upper limb in patients with chronic stroke are common and have a negative impact on autonomy, participation and quality of life. Music-Supported Therapy (MST) is an effective intervention to enhance motor and cognitive function, emotional well-being and quality of life in chronic stroke patients. We have adapted the original MST training protocol to a home-based intervention, which incorporates increased training intensity and variability, group sessions, and optimisation of learning to promote autonomy and motivation. Methods A randomised controlled trial will be conducted to test the effectiveness of this enriched MST (eMST) protocol in improving motor functions, cognition, emotional well-being and quality of life of chronic stroke patients when compared to a program of home-based exercises utilizing the Graded Repetitive Arm Supplementary Program (GRASP). Sixty stroke patients will be recruited and randomly allocated to an eMST group (n = 30) or a control GRASP intervention group (n = 30). Patients will be evaluated before and after a 10-week intervention, as well as at 3-month follow-up. The primary outcome of the study is the functionality of the paretic upper limb measured with the Action Research Arm Test. Secondary outcomes include other motor and cognitive functions, emotional well-being and quality of life measures as well as self-regulation and self-efficacy outcomes. Discussion We hypothesize that patients treated with eMST will show larger improvements in their motor and cognitive functions, emotional well-being and quality of life than patients treated with a home-based GRASP intervention. Trial registration The trial has been registered at ClinicalTrials.gov and identified as NCT04507542 on 8 August 2020.


2020 ◽  
Vol 22 (Supplement_2) ◽  
pp. ii175-ii176
Author(s):  
Meghan Tierney ◽  
Cynthia Peden-McAlpine

Abstract INTRODUCTION Quality of life (QOL) should be included among the important outcomes of brain tumor treatment. QOL is often reduced to a measure of treatment tolerability, resulting in a lack of understanding of how patients experience this phenomenon. There is also limited knowledge surrounding the meaning of QOL for family care partners. The research (in progress) aims to explore the meaning of lived experience of QOL during treatment for glioblastoma (GBM) for both patients and their primary care partners. It will also examine similarities and differences in QOL perceptions within patient-care partner dyads. METHODS Using a phenomenological approach, this study is recruiting patients receiving treatment for GBM and their care partners. Participants complete a timeline depicting significant events impacting QOL from the time of the patient’s diagnosis to the present. They then complete an individual, unstructured interview describing their experience of QOL. Interviews are recorded and transcribed. The research team reviews and completes a thematic analysis on transcripts. RESULTS Numerous themes are emerging from the data. One theme among patients is: Feeling Uncertain About the Future. Patients discussed feeling uncertain about their prognosis during their course of treatment. They talked about the need to adjust to multiple changes in their lives over time. This uncertainty extended to concern for their QOL in the future. One theme among care partners is: Challenges in Relationship with Spouse. Care partners reported relationship conflict stemming from both personality changes in their spouse and role changes resulting in increased responsibilities for the care partner. CONCLUSION This study is providing insight into the meaning and experience of QOL for patients undergoing treatment for GBM, along with meaning and experience of QOL for their care partners. The findings will have implications for clinical practice and generate insights for future research.


BMJ Open ◽  
2021 ◽  
Vol 11 (9) ◽  
pp. e052810
Author(s):  
Patrick Nzivo Mwangala ◽  
Adam Mabrouk ◽  
Ryan Wagner ◽  
Charles R J C Newton ◽  
Amina A Abubakar

ObjectiveIn this systematic review, we aimed to summarise the empirical evidence on common mental disorders (CMDs), cognitive impairment, frailty and health-related quality of life (HRQoL) among people living with HIV aged ≥50 years (PLWH50 +) residing in sub-Saharan Africa (SSA). Specifically, we document the prevalence and correlates of these outcomes.Design, data sources and eligibility criteriaThe following online databases were systematically searched: PubMed, CINAHL, PsycINFO, Embase and Scopus up to January 2021. English-language publications on depression, anxiety, cognitive function, frailty and quality of life among PLWH50+ residing in SSA were included.Data extraction and synthesisWe extracted information, including study characteristics and main findings. These were tabulated, and a narrative synthesis approach was adopted, given the substantial heterogeneity among included studies.ResultsA total of 50 studies from fifteen SSA countries met the inclusion criteria. About two-thirds of these studies emanated from Ethiopia, Uganda and South Africa. Studies regarding depression predominated (n=26), followed by cognitive impairment (n=13). Overall, PLWH50+ exhibited varying prevalence of depression (6%–59%), cognitive impairments (4%–61%) and frailty (3%–15%). The correlates of CMDs, cognitive impairment, frailty and HRQoL were rarely investigated, but those reported were sociodemographic variables, many of which were inconsistent.ConclusionsThis review documented an increasing number of published studies on HIV and ageing from SSA. However, the current evidence on the mental and well-being outcomes in PLWH50+ is inadequate to characterise the public health dimension of these impairments in SSA, because of heterogeneous findings, few well-designed studies and substantial methodological limitations in many of the available studies. Future work should have sufficiently large samples of PLWH50+, engage appropriate comparison groups, harmonise the measurement of these outcomes using a standardised methodology to generate more robust prevalence estimates and confirm predictors.PROSPERO registration numberCRD42020145791.


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