scholarly journals The impact of assistive technology on burden and psychological well‐being in informal caregivers of people with dementia (ATTILA Study)

Author(s):  
Anna Davies ◽  
Stefano Brini ◽  
Shashivadan Hirani ◽  
Rebecca Gathercole ◽  
Kirsty Forsyth ◽  
...  
2021 ◽  
Vol 7 ◽  
pp. 233372142110201
Author(s):  
M. Courtney Hughes ◽  
Yujun Liu ◽  
Abby Baumbach

Background: In December 2019, the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), or COVID-19, raised worldwide concern. Since then, the COVID-19 pandemic has negatively influenced health and wellness across the globe and caused nearly three million deaths. This study focuses on informal caregivers of people with dementia, a disease that affects about 50 million older adults worldwide and requires much caregiving support. Objective: Examine the current literature on the impact of COVID-19 on the health and well-being of informal caregivers for people with dementia. Method: This rapid review was conducted across five electronic databases for quantitative and qualitative articles published through March 15, 2021. Results: The 10 studies included in this review reported quantitative descriptive data from across the globe; however, no studies existed from the U.S. or East Asia countries. All of the studies examined the psychological rather than physical impact of COVID-19 and highlighted risk and protective factors in the areas of psychosocial (resilience, neuropsychiatric, and social isolation), sociodemographic (gender and education), and environmental (home confinement, living arrangement, and dementia stage). Conclusion: COVID-19 has had a considerable negative impact on the psychological well-being of informal caregivers of people with dementia, namely causing more depression and anxiety than pre-pandemic.


2012 ◽  
Vol 24 (12) ◽  
pp. 1927-1942 ◽  
Author(s):  
Jacki Liddle ◽  
Erin R. Smith-Conway ◽  
Rosemary Baker ◽  
Anthony J. Angwin ◽  
Cindy Gallois ◽  
...  

ABSTRACTBackground: People with dementia have a range of needs that are met by informal caregivers. A DVD-based training program was developed using research-based strategies for memory and communication in dementia. The effectiveness of the training on the caregiver experience and the well-being of the person with dementia was evaluated.Methods: A pre-test/post-test controlled trial was undertaken with caregiver–care-recipient dyads living in the community. Measures of the carers’ knowledge of memory and communication strategies, burden, positive perceptions of caregiving, and perceptions of problem behaviors were taken pre- and three months post-intervention. The depression and well-being of the person with dementia were also evaluated. Satisfaction with the training and feedback were measured.Results: Twenty-nine dyads (13 training group, 16 control group) participated. Bonferroni's correction was made to adjust for multiple comparisons, setting α at 0.00385. A significant improvement was found in caregivers’ knowledge for the training group compared to the control group (p = 0.0011). The training group caregivers reported a reduction in the frequency of care recipient disruptive behaviors (p = 0.028) and increased perceptions of positive aspects of caregiving (p = 0.039), both at a level approaching significance. The training group care recipients had increased frequency of verbally communicated depressive behaviors at a level approaching significance (p = 0.0126). The frequency of observed depressive behaviors was not significantly different between groups.Conclusions: This approach to training for caregivers of people with dementia appears promising for its impact on knowledge and the caregiving experience. Further research could monitor the impact of the training on broader measures of depression and well-being, with a larger sample.


2010 ◽  
Vol 9 (1) ◽  
pp. 15-25 ◽  
Author(s):  
Marieke Van Puymbroeck, PhD, CTRS ◽  
Pei-Chun Hsieh, MS

Informal caregivers, who provide unpaid care for family or friends, often experience numerous threats to their psychological well-being as a result of providing care. This study compared a traditional physical activity (mall walking, MW) to an alternative therapeutic intervention (mindfulness-based stress reduction, MBSR) to examine the impact on the psychological well-being of informal caregivers. While both groups experienced a decrease in psychological well-being, caregivers in the MBSR group experienced fewer exacerbations in depressive symptoms and subjective burden when compared with caregivers in the MW group. It is possible that mindfulness techniques may provide some protection against the exacerbation of negative effects on caregivers’ psychological wellbeing. The use of MBSR as a therapeutic intervention in therapeutic recreation practice may be warranted, but requires further study.


2020 ◽  
Author(s):  
Iris A.G.M. Geerts ◽  
Liselore J.A.E Snaphaan ◽  
Inge M.B. Bongers

BACKGROUND Despite the potential value of assistive technology to support people with dementia (PWD) in everyday activities, use of these technologies is still limited. To ensure that assistive technologies better address the specific needs and daily context of PWD and their informal caregivers, it is particularly important to involve them in all different phases of assistive technology development. The literature rarely describes the involvement of PWD throughout the development process of assistive technologies, which makes it difficult to further reflect on and improve active involvement of PWD. OBJECTIVE This two-part study aimed to gather insights on the user-centered design (UCD) applied in the development process of the alpha prototype of the serious game PLAYTIME by describing the methods and procedures of the UCD as well as evaluating the UCD from the perspective of all involved stakeholders. METHODS The first three phases of the user-driven Living Lab of Innovate Dementia 2.0 were applied to directly involve PWD and their informal caregivers through qualitative research methods, including focus groups and a context-field study, in the development of the alpha prototype of PLAYTIME from exploration to design to testing. After the testing phase, a total number of 18 semi-structured interviews were conducted with PWD, their informal caregivers and the project members of PLAYTIME to evaluate the applied UCD from the perspective of all involved stakeholders. The interviews addressed five of the principles for successful UCD and the appropriateness of the different methods used in the focus groups and context-field study. RESULTS Results of the interviews focused, amongst others, on the level of involvement of PWD and their informal caregivers in the development process, the input provided by PWD and their informal caregivers, the value of early prototyping, continuous iterations of design solutions and in-context testing, the role of dementia care professionals in the multidisciplinary project team, and the appropriateness of open- and closed-ended questions for obtaining input from PWD and their informal caregivers. CONCLUSIONS The description and evaluation of the UCD applied in the development process of the alpha prototype of PLAYTIME resulted in several insights on the relevance of UCD for all involved stakeholders as well as how PWD can be involved in the subsequent phases of usable and meaningful assistive technology development.


2021 ◽  
Author(s):  
Catherine V Talbot ◽  
Pam Briggs

Abstract People with dementia can experience shrinkage of their social worlds, leading to a loss of independence, control and reduced well-being. We used ‘the shrinking world’ theory to examine how the COVID 19 pandemic has impacted the lives of people with early to middle stage dementia and what longer-term impacts may result. Interviews were conducted with 19 people with dementia and a thematic analysis generated five themes: the forgotten person with dementia, confusion over government guidance, deterioration of cognitive function, loss of meaning and social isolation, safety of the lockdown bubble. The findings suggest that the pandemic has accelerated the ‘shrinking world’ effect and created tension in how people with dementia perceive the outside world. Participants felt safe and secure in lockdown but also missed the social interaction, cognitive stimulation and meaningful activities that took place outdoors. As time in lockdown continued, these individuals experienced a loss of confidence and were anxious about their ability to re-engage in the everyday practises that allow them to participate in society. We recommend ways in which the government, communities and organisations might counteract some of the harms posed by this shrinking world.


Author(s):  
Maria Chiara Fastame ◽  
Ilaria Mulas ◽  
Valeria Putzu ◽  
Gesuina Asoni ◽  
Daniela Viale ◽  
...  

AbstractThe effect of the COVID-19 on the physical and mental health of Italian older individuals displaying signs of cognitive deterioration has not been deeply investigated. This longitudinal study examined the impact of COVID-19 lockdown measures on the psychological well-being and motor efficiency of a sample of Italian community-dwellers with and without cognitive decline. Forty-seven participants underwent instrumental gait analysis performed in ecological setting using wearable sensors, and completed a battery of tasks assessing cognitive functioning and psychological well-being, before and after the full lockdown due to the COVID-19 spreading. A series of Multivariate Analyses of Variance (MANOVAs) documented that the superior gait performance of the cognitively healthy participants exhibited before the COVID-19 spread, vanished when they were tested at the end of the lockdown period. Moreover, before the outbreak of the COVID-19, cognitively healthy participants and those with signs of cognitive decline reported similar levels of psychological well-being, whereas, after the lockdown, the former group reported better coping, emotional competencies, and general well-being than the participants displaying signs of cognitive decline. In conclusion, the full COVID-19 outbreak had a significant impact on the mental and motor functioning of older individuals with and without signs of cognitive deterioration living in Italy.


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.


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