scholarly journals Caregiver Tele-Assistance for Reduction of Emotional Distress During the COVID-19 Pandemic. Psychological Support to Caregivers of People with Dementia: The Italian Experience

2021 ◽  
pp. 1-8
Author(s):  
Emanuela Rotondo ◽  
Daniela Galimberti ◽  
Matteo Mercurio ◽  
Giulia Giardinieri ◽  
Sara Forti ◽  
...  

Background: COVID-19 pandemic worsened vulnerability of patients with dementia (PWD). This new reality associated with government restriction and isolation worsened stress burden and psychological frailties in PWD caregivers. Objective: To give tele-psychological support to caregivers and evaluate the effect of this intervention by quantifying stress burden and quality of life during the first COVID-19 lockdown. Methods: 50 caregivers were divided into two groups: “Caregiver-focused group” (Cg) and “Patient-focused group” (Pg). Both groups received telephone contact every 2 weeks over a 28-week period, but the content of the call was different: in Cg, caregivers answered questions about the state of the PWD but also explored their own emotional state, stress burden, and quality of life. In Pg instead, telephone contacts were focused only on the PWD, and no evaluation regarding the caregiver mood or state of stress was made. Psychometric scales were administered to evaluate COVID-19 impact, stress burden, and quality of life. Results: Considering the time of intervention, from baseline (W0) to W28, Zarit Burden Interview and Quality of Life-caregiver questionnaires remained unchanged in Cg as compared with baseline (p >  0.05), whereas they worsened significantly in Pg (p <  0.01), showing increased stress over time and decreased quality of life in this group. Moreover, Impact on Event Scale values improved over the weeks in Cg (p = 0.015), while they remained unchanged in Pg (p = 0.483). Conclusion: Caregivers who received telephone support about their mood and stress burden did not worsen their psychological state during the time of intervention, as did instead those who did not get such support.

GeroPsych ◽  
2019 ◽  
Vol 32 (3) ◽  
pp. 125-134
Author(s):  
Mechthild Niemann-Mirmehdi ◽  
Andreas Häusler ◽  
Paul Gellert ◽  
Johanna Nordheim

Abstract. To date, few studies have focused on perceived overprotection from the perspective of people with dementia (PwD). In the present examination, the association of perceived overprotection in PwD is examined as an autonomy-restricting factor and thus negative for their mental well-being. Cross-sectional data from the prospective DYADEM study of 82 patient/partner dyads (mean age = 74.26) were used to investigate the association between overprotection, perceived stress, depression, and quality of life (QoL). The analyses show that an overprotective contact style with PwD has a significant positive association with stress and depression, and has a negative association with QoL. The results emphasize the importance of avoiding an overprotective care style and supporting patient autonomy.


Author(s):  
Inmaculada Méndez ◽  
Esther Secanilla ◽  
Juan P. Martínez ◽  
Josefa Navarro

In a global approach about the need of paying attention to staff working with and for older people with dementia and other diseases in residential care, it is necessary to investigate their emotional well-being to provide strategies to improve their quality of life and therefore their quality of patient care. Professional caregivers of people with dementia and other diseases have specific psycho-sociological problems. They are more prone to stress which can sometimes lead to the “burnout” due to specific functions in the workplace. To define the sample was decided to compare two residential centers of two regions, Murcia and Barcelona. We proceeded to the administration of the following measuring instruments: the scale Maslach Burnout Inventory (MBI) and an ad hoc survey conducted for professional caregivers. Finally, the results offer the possibility of carrying out programs to prevent emotional exhaustion in professional carers, as well as the possibility of designing psychoeducational programs for staff care and even future proactive and reactive interventions.


Author(s):  
Yu-Tzu Wu ◽  
◽  
Linda Clare ◽  
Ian Rees Jones ◽  
Sharon M. Nelis ◽  
...  

Abstract Purpose The aim of this study was to investigate the associations between quality of life and both perceived and objective availability of local green and blue spaces in people with dementia, including potential variation across rural/urban settings and those with/without opportunities to go outdoors. Methods This study was based on 1540 community-dwelling people with dementia in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme. Quality of life was measured by the Quality of Life in Alzheimer’s Disease (QoL-AD) scale. A list of 12 types of green and blue spaces was used to measure perceived availability while objective availability was estimated using geographic information system data. Regression modelling was employed to investigate the associations of quality of life with perceived and objective availability of green and blue spaces, adjusting for individual factors and deprivation level. Interaction terms with rural/urban areas or opportunities to go outdoors were fitted to test whether the associations differed across these subgroups. Results Higher QoL-AD scores were associated with higher perceived availability of local green and blue spaces (0.82; 95% CI 0.06, 1.58) but not objective availability. The positive association between perceived availability and quality of life was stronger for urban (1.50; 95% CI 0.52, 2.48) than rural residents but did not differ between participants with and without opportunities to go outdoors. Conclusions Only perceived availability was related to quality of life in people with dementia. Future research may investigate how people with dementia utilise green and blue spaces and improve dementia-friendliness of these spaces.


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 758-758
Author(s):  
Dorota Szcześniak ◽  
Katarzyna Lion ◽  
Franka Meiland ◽  
Dawn Brooker ◽  
Elisabetta Farina ◽  
...  

Abstract In Europe, 10 million people are living with dementia. Most of them reside in their own home, cared for by their loved ones. As a consequence, there is a great need to provide both, people with dementia and their carers, tailored support. The Dutch Meeting Centres Support Programme (MCSP), adaptively implemented in three European countries within the JPND-MEETINGDEM project, is an excellent example of an effective dyadic psychosocial intervention, which seems to have no cultural barriers. The mixed-methods analysis showed that participant-dyads reported great satisfaction with MCSP. People with dementia experienced improvement of their quality of life, motivation and ability to participate in everyday activities, as well as improvement in their relationship with family members. Carers felt less burdened and highly appreciated the emotional and social support they received. Repeated user evaluation shows that this dyadic support effectively helps people with dementia and their families better deal with dementia.


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.


2020 ◽  
Vol 32 (S1) ◽  
pp. 8-8
Author(s):  
K. Thorsen ◽  
M. C. N. Dourado ◽  
A. Johannessen

AbstractBackground:Awareness of dementia is examined in different scientific fields as significant for assessment of diagnosis, and for treatment and adaptation to the disease. There are very few longitudinal studies of individual experiences of awareness among people with dementia, related to quality of life.Aim:To examine how younger people (< 65 years) with dementia (YOD) express awareness of the dementia and how, over time, they seem to handle awareness as a strategy to preserve quality of life.Method:A longitudinal qualitative study with individuals with YOD was performed with interviews every six months over five years for a maximum of ten interviews. The interviews were analysed by modified grounded theory.Findings:Awareness is a complex, multidimensional concept. Awareness of dementia is predisposed by personality, life history and established coping styles. The main coping styles – live in the moment, ignore the dementia, and make the best of it – seem to be rather consistent throughout the progression of the disease. Transitions in life situation, such as moving to a nursing home, may change the individual’s awareness of dementia.Conclusion:Unawareness of dementia may have an important adaptive function to preserve quality of life. To increase awareness must be approached with reflexivity and the utmost sensitivity.


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 275-276
Author(s):  
Jose Aravena ◽  
Jean Gajardo ◽  
Laura Gitlin

Abstract In a scenario of increasing longevity and social inequalities, Latin-America is an important contributor to the worldwide dementia burden. Caregivers’ health is fundamental to maintain the person with dementia quality of life. However, caregiving is a culturally sensible role that requires tailored solutions. The aim is to synthesize the evidence about non-pharmacologic interventions targeted to caregivers of people with dementia in Latin-American contexts. A comprehensive review of interventions in caregivers and persons with dementia in Latin-American countries was conducted using MEDLINE, Embase, PsycINFO, and Scopus with studies published until January 27th, 2020. Randomized clinical trials of non-pharmacologic interventions targeted to caregivers of people with dementia or dyads where included. Qualitative synthesis of the evidence was presented and analyzed. Overall, 9 pilot RCT were included for the final analysis (6 Brazil, 1 Colombia, 1 Mexico, 1 Perú). The biggest study recruited 69 caregivers and the smallest 13 dyads, with follow-up range of 3-6 months. 5 control groups received at least some other non-standard care type of intervention. 8 were targeted exclusively to caregivers (4 group intervention, 3 individual, and 1 combined) and 1 multicomponent intervention. Most frequent measured outcomes were caregiver’s burden, anxiety, depressive symptoms, and quality of life, and person with dementia neuropsychiatric symptoms. Individual interventions report better results in caregiver parameters such as burden and depressive symptoms and person with dementia neuropsychiatric symptoms. Group interventions presented mixed results. Nevertheless, the quality of evidence was low. There is a critical need to study interventions for caregivers in Latin-American contexts.


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