scholarly journals Living with dementia under COVID-19 restrictions: coping and support needs among people with dementia and carers from the IDEAL cohort

2021 ◽  
Author(s):  
Gareth O'Rourke ◽  
Claire Pentecost ◽  
Eleanor van den Heuvel ◽  
Christina Victor ◽  
Catherine Quinn ◽  
...  
Keyword(s):  
Well Being ◽  
Psychological Resources ◽  
Online Forums ◽  
Family Carers ◽  
Negative Effects ◽  
Phone Calls ◽  
People With Dementia ◽  
Negative Impacts ◽  
The Impact ◽  
The Ideal

Abstract Stringent social restrictions imposed during 2020 to counter the spread of the COVID-19 pandemic could significantly affect the well-being and quality of life of people with dementia living in the community and their family carers. We explored the impact of COVID-19 restrictions on people with dementia and family carers in England and considered how negative effects might be mitigated. We conducted semi-structured telephone interviews with 11 people with dementia and 11 family carers who were ongoing participants in the IDEAL cohort during the initial ‘lockdown’ period in May-June 2020, and follow-up interviews with five people with dementia and two carers as restrictions were eased in July. We analysed interview data and triangulated the findings with issues raised in dementia-specific online forums. Findings showed some people with dementia were coping well, but others experienced a range of negative impacts, with varying degrees of improvement as restrictions were eased. The need for clear personalised information relating to COVID-19 and the value of support in the form of regular ‘just checking’ phone calls was emphasised. This exceptional situation provides a natural demonstration of how social and psychological resources shape the potential to ‘live well’ with dementia. While some support is recommended for all, a personalised approach to determine needs and coping ability would ensure that further practical and emotional support is targeted effectively.

scholarly journals Living with dementia under COVID-19 restrictions: coping and support needs among people with dementia and carers from the IDEAL cohort

2021 ◽  
pp. 1-23
Author(s):  
Gareth O'Rourke ◽  
Claire Pentecost ◽  
Eleanor van den Heuvel ◽  
Christina Victor ◽  
Catherine Quinn ◽  
...  
Keyword(s):  
Psychological Resources ◽  
Online Forums ◽  
Family Carers ◽  
Negative Effects ◽  
Telephone Interviews ◽  
Phone Calls ◽  
People With Dementia ◽  
Negative Impacts ◽  
The Impact ◽  
The Ideal

Abstract Stringent social restrictions imposed during 2020 to counter the spread of the COVID-19 pandemic could significantly affect the wellbeing and quality of life of people with dementia living in the community and their family carers. We explored the impact of COVID-19 restrictions on people with dementia and family carers in England and considered how negative effects might be mitigated. We conducted semi-structured telephone interviews with 11 people with dementia and 11 family carers who were ongoing participants in the IDEAL cohort during the initial ‘lockdown’ period in May and June 2020, and follow-up interviews with five people with dementia and two carers as restrictions were eased in July. We analysed interview data and triangulated the findings with issues raised in dementia-specific online forums. Findings showed some people with dementia were coping well, but others experienced a range of negative impacts, with varying degrees of improvement as restrictions were eased. The need for clear personalised information relating to COVID-19 and the value of support in the form of regular ‘just checking’ phone calls was emphasised. This exceptional situation provides a natural demonstration of how social and psychological resources shape the potential to ‘live well’ with dementia. While some support is recommended for all, a personalised approach to determine needs and coping ability would ensure that further practical and emotional support is targeted effectively.

scholarly journals Impact of COVID-19 on ‘living well’ with mild-to-moderate dementia in the community: findings from the IDEAL cohort

2021 ◽  
Author(s):  
Linda Clare ◽  
Anthony Martyr ◽  
Laura D. Gamble ◽  
Claire Louise Pentecost ◽  
Rachel Collins ◽  
...  
Keyword(s):  
Sense Of Self ◽  
Social Contact ◽  
Community Dwelling ◽  
Everyday Activities ◽  
Living Well ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Negative Impacts ◽  
The Impact ◽  
The Ideal

BackgroundNegative impacts of the COVID-19 pandemic on people with dementia have been widely-documented, but most studies have relied on carer reports and few have compared responses to information collected before the pandemic.ObjectiveWe aimed to explore the impact of the pandemic on community-dwelling individuals with mild-to-moderate dementia and compare responses with pre-pandemic data.MethodsDuring the second wave of the pandemic we conducted structured telephone interviews with 173 people with dementia and 242 carers acting as informants, all of whom had previously participated in the IDEAL cohort. Where possible we benchmarked responses against pre-pandemic data.ResultsSignificant perceived negative impacts were identified in cognitive and functional skills and ability to engage in self-care and manage everyday activities, along with increased levels of loneliness and discontinuity in sense of self and a decline in perceived capability to ‘live well’. Compared to pre-pandemic data there were lower levels of pain, depression and anxiety, higher levels of optimism, and better satisfaction with family support. There was little impact on physical health, mood, social connections and relationships, or perceptions of neighbourhood characteristics.ConclusionEfforts to mitigate negative impacts of pandemic-related restrictions and restore quality of life could focus on reablement to address the effects on participation in everyday activities, creating opportunities for social contact to reduce loneliness, and personalised planning to reconnect people with their pre-COVID selves. Such efforts may build on the resilience demonstrated by people with dementia and carers in coping with the pandemic.

scholarly journals The impact of the first UK Covid-19 lockdown on carers and people living with low prevalence dementia: results from the Rare Dementia Support survey

2020 ◽  
Author(s):  
Aida Suárez-González ◽  
Emma Harding ◽  
Nikki Zimmerman ◽  
Zoe Hoare ◽  
Emilie Brotherhood ◽  
...  
Keyword(s):  
Mental Health ◽  
Well Being ◽  
Care Homes ◽  
Cognitive Symptoms ◽  
Family Carers ◽  
People With Dementia ◽  
The Uk ◽  
Low Prevalence ◽  
Person With Dementia ◽  
The Impact

AbstractIntroductionThe public health measures imposed to contain Covid-19 during the first UK lockdown resulted in significant changes in the provision of community support and care for people with dementia. People with low prevalence and young-onset dementias often experience non-memory, behavioural or neuropsychiatric symptoms that require specialised support.ObjectiveWe explored the impact of the first Covid-19 lockdown on people living with low prevalence and young-onset dementia and their carers in the UK.MethodAn online survey, including eleven questions about the impact of the lockdown on both the person with dementia and their family caregivers was conducted. Participants were people living with dementia and caregivers who are members of the UK national-reach organisation Rare Dementia Support.Results184 carers and 24 people with dementia completed the survey. People with dementia experienced worsening of cognitive symptoms (70%), ability to do things (62%) and well-being (57%) according to their carers. Carers also reported a reduction in the support received for caring (55%). 93% of carers of people living in care homes reported a reduction in their ability to provide care. 26% of carers reported changes in the medication of the person with dementia during the lockdown. 74% of people with dementia reported decreased ability to connect with people socially.ConclusionsPeople with dementia experienced a worsening of dementia symptoms, removal of support and increased difficulty to connect with other people socially during the 1st wave of Covid-19. Carers encountered barriers to both receiving and providing support and a decline in their own mental health and well-being.Key points70 % of carers reported cognitive symptoms getting worse during the lockdown (e.g., the person with dementia being more disoriented and finding it more difficult to communicate).26 % of carers reported a change (initiation or increase) in medication in the person with dementia during the lockdown.79 % carers reported their own physical or mental health getting worse due to the lockdown. This increased to 93% when considering responses only from family carers of people living in care homes.93 % of family carers of people living in care homes found it harder to continue providing care and support for their relative due to Covid-19.

scholarly journals COVID-19 and Subjective Well-Being: Perceived Impact, Positive Psychological Resources and Protective Behavior

2021 ◽  
Vol 18 (2) ◽  
pp. 259-275
Author(s):  
Tatiana Bokhan ◽  
Eduard Galazhinsky ◽  
Dmitry Leontiev ◽  
Elena Rasskazova ◽  
Olga Terekhina ◽  
...  
Keyword(s):  
Well Being ◽  
Psychological Effects ◽  
Psychological Resources ◽  
Subjective Well Being ◽  
Protective Behavior ◽  
Negative Effects ◽  
Positive Effects ◽  
Positive Side ◽  
Tolerance For Ambiguity ◽  
The Impact

While negative psychological effects of COVID-19 pandemic are actively studied, little is known about the eventual positive reactions to the pandemic including the capacity to see positive opportunities in this situation and about personality resources that may help to cope and to maintain well-being despite lifestyle restrictions. The aim of our study was to reveal positive personality resources that contribute to buffering the negative effects and its consequences on individual lives. 474 adults 18-81 years old from Siberia (Russia) participated in May 2020 in a survey about the impact of the pandemic and self-isolation and also filled out psychometric measures of well-being and psychological resources (PANAS, PWI, Value of Life Scale, MHC, MSTAT-I, LOT, GSE, Hardiness Survey, SOC, Personal Life Position inventory). One in three respondents reported worsening emotional condition through the previous two weeks and poor adherence to governmental self-isolation recommendations, and 43.6% reported increased financial difficulties. Taking into account not only the negative but also positive subjective effect of the pandemic enabled the improved accuracy in prediction of both well-being and adherence to the governmental measures. The less a person mentioned the positive side of the pandemic, the more strongly their adherence to the governmental measures depended on perceived negative effects (worries and threats). Tolerance for ambiguity, the challenge component of hardiness, harmony with life predicted perceived positive effects after adjusting for negative effects. Psychological resources could play a buffering role as regards the vulnerability to negative psychological effects of the pandemic and help to find positive opportunities.

scholarly journals Impact of COVID-19 on ‘living well’ with mild-to-moderate dementia in the community: findings from the IDEAL cohort

2021 ◽  
Author(s):  
Linda Clare ◽  
Anthony Martyr ◽  
Laura D Gamble ◽  
Claire Pentecost ◽  
Rachel Collins ◽  
...  
Keyword(s):  
Sense Of Self ◽  
Social Contact ◽  
Community Dwelling ◽  
Everyday Activities ◽  
Living Well ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Negative Impacts ◽  
The Impact ◽  
The Ideal

Abstract Background Negative impacts of the COVID-19 pandemic on people with dementia have been widely-documented, but most studies have relied on carer reports and few have compared responses to information collected before the pandemic. Objective We aimed to explore the impact of the pandemic on community-dwelling individuals with mild-to-moderate dementia and compare responses with pre-pandemic data. Methods During the second wave of the pandemic we conducted structured telephone interviews with 173 people with dementia and 242 carers acting as informants, all of whom had previously participated in the IDEAL cohort. Where possible we benchmarked responses against pre-pandemic data. Results Significant perceived negative impacts were identified in cognitive and functional skills and ability to engage in self-care and manage everyday activities, along with increased levels of loneliness and discontinuity in sense of self and a decline in perceived capability to ‘live well’. Compared to pre-pandemic data there were lower levels of pain, depression and anxiety, higher levels of optimism, and better satisfaction with family support. There was little impact on physical health, mood, social connections and relationships, or perceptions of neighbourhood characteristics. Conclusion Efforts to mitigate negative impacts of pandemic-related restrictions and restore quality of life could focus on reablement to address the effects on participation in everyday activities, creating opportunities for social contact to reduce loneliness, and personalised planning to reconnect people with their pre-COVID selves. Such efforts may build on the resilience demonstrated by people with dementia and carers in coping with the pandemic.

scholarly journals Impact of COVID-19 on ‘Living Well’ with Mild-to-Moderate Dementia in the Community: Findings from the IDEAL Cohort

2021 ◽  
pp. 1-16
Author(s):  
Linda Clare ◽  
Anthony Martyr ◽  
Laura D. Gamble ◽  
Claire Pentecost ◽  
Rachel Collins ◽  
...  
Keyword(s):  
Sense Of Self ◽  
Social Contact ◽  
Community Dwelling ◽  
Everyday Activities ◽  
Living Well ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Negative Impacts ◽  
The Impact ◽  
The Ideal

Background: Negative impacts of the COVID-19 pandemic on people with dementia have been widely-documented, but most studies have relied on carer reports and few have compared responses to information collected before the pandemic. Objective: We aimed to explore the impact of the pandemic on community-dwelling individuals with mild-to-moderate dementia and compare responses with pre-pandemic data. Methods: During the second wave of the pandemic, we conducted structured telephone interviews with 173 people with dementia and 242 carers acting as informants, all of whom had previously participated in the IDEAL cohort. Where possible, we benchmarked responses against pre-pandemic data. Results: Significant perceived negative impacts were identified in cognitive and functional skills and ability to engage in self-care and manage everyday activities, along with increased levels of loneliness and discontinuity in sense of self and a decline in perceived capability to ‘live well’. Compared to pre-pandemic data, there were lower levels of pain, depression, and anxiety, higher levels of optimism, and better satisfaction with family support. There was little impact on physical health, mood, social connections and relationships, or perceptions of neighborhood characteristics. Conclusion: Efforts to mitigate negative impacts of pandemic-related restrictions and restore quality of life could focus on reablement to address the effects on participation in everyday activities, creating opportunities for social contact to reduce loneliness, and personalized planning to reconnect people with their pre-COVID selves. Such efforts may build on the resilience demonstrated by people with dementia and carers in coping with the pandemic.

scholarly journals COVID-19 and Brain Health: Global Council on Brain Health Recommendations

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 22-23
Author(s):  
Sarah Lock ◽  
Lindsay Chura
Keyword(s):  
Well Being ◽  
Brain Health ◽  
Negative Effects ◽  
Middle Income ◽  
Middle Income Countries ◽  
People With Dementia ◽  
Short And Long Term ◽  
The Impact ◽  
Mental Well Being ◽  
The Brain

Abstract With growing evidence that the coronavirus directly harms the brain and indirectly harms mental well-being due to social isolation and new, increased stressors, the GCBH recognized the urgent need to inform adults age 50+ about ways to their protect brain health as the pandemic continues. In our latest report, the GCBH describes the known neurological symptoms occurring in the short and long term for adults, providing 10 recommendations to protect brain health and urging research in 11 different areas. Calling for an all-of-society approach to protect the brain health of everyone, the GCBH described the negative effects of COVID-19 on people living with Alzheimer’s disease and other dementias and to the impact of health care inequalities. For example, people with dementia were twice as likely to catch the virus as those without dementia; African Americans with dementia had nearly three times the risk of COVID-19 as Caucasians with dementia. The GCBH also points out that caregivers for those living with dementia have experienced particular stress and provided resources and guidance. The Council spotlights the disproportionate toll of COVID-19 on the vulnerable, including racial and ethnic minorities and those living in low- to middle-income countries. After attending this session, participants will be able to identify the neurological impacts of COVID-19, understand the various ways to mitigate risks to brain health, and learn which areas of research will be critical in the future. These recommendations were developed and put forth by the Global Council on Brain Health Governance Committee and Issue Experts.

scholarly journals ‘Getting back to normality seems as big of a step as going into lockdown’: the impact of the COVID-19 pandemic on people with early to middle stage dementia

2021 ◽  
Author(s):  
Catherine V Talbot ◽  
Pam Briggs
Keyword(s):  
Well Being ◽  
Cognitive Stimulation ◽  
Social Worlds ◽  
Middle Stage ◽  
People With Dementia ◽  
The Social ◽  
Function Loss ◽  
The Government ◽  
Person With Dementia ◽  
The Impact

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.

scholarly journals Understanding the Link between Family Caregiver Quality of Life and the Care Provided to Older People With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 153-154
Author(s):  
Afeez Hazzan
Keyword(s):  
Quality Of Life ◽  
Quality Of Care ◽  
Older People ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Well Being ◽  
The United States ◽  
People With Dementia ◽  
The Impact

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.

scholarly journals Personality and Dementia: an Approach to Differential Profile of the Caregiver

2011 ◽  
Vol 1 (3) ◽  
pp. 85-94
Author(s):  
Elena de Andrés-Jiménez ◽  
Rosa Mª Limiñana-Gras ◽  
Encarna Fernández-Ros
Keyword(s):  
Relevant Information ◽  
Personality Profile ◽  
Family Carers ◽  
Psychological Variables ◽  
People With Dementia ◽  
The Family ◽  
Study Population ◽  
The One ◽  
The Impact

The aim of this study is to determine the existence of a characteristic personality profile of family carers of people with dementia. The correct knowledge and use of psychological variables which affect the carer, helps to promote appropriate actions to mitigate the impact of care and improve the carer’s quality of life and likewise the one of the person cared for. The study population consists of 69 family carers of people with dementia, members of various associations and care centers. The results allow us to identify a characteristic personality profile for these carers and it reveals a specific psychological working in this sample, although we cannot directly relate it with the tasks of caring for people with this disease, this profile gives us very relevant information to pay more attention to the needs of this group. Moreover, the analysis of personality styles depends on the sex of the family carer, showing, once again, that the woman is in a situation of most vulnerability.

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