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 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 Reflections on PPI from the ‘Action on Living Well: Asking You’ advisory network of people with dementia and carers as part of the IDEAL study

Dementia ◽  
2018 ◽  
Vol 17 (8) ◽  
pp. 1035-1044 ◽  
Author(s):  
Rachael Litherland ◽  
Julia Burton ◽  
Monica Cheeseman ◽  
Dianne Campbell ◽  
Maureen Hawkins ◽  
...  
Keyword(s):  
Research Study ◽  
The Past ◽  
Living Well ◽  
People With Dementia ◽  
Ideal Study ◽  
The Impact ◽  
The Ideal

This article describes the work of the ‘Action on Living Well: Asking You’ group – an involvement group of people with dementia and carers attached to the IDEAL research study. The article describes the work of the group, the methods that have helped them to stay involved and people’s perspectives on their experiences of being involved and the impact it has had, for themselves and others. The article has been written following a reflective piece of work with the ‘Action on Living Well: Asking You’ group to review and remember the work of the past four years. An accompanying film brings to life the work and activities of the group, available at www.idealproject.org.uk/mclass/

scholarly journals LONELINESS, ISOLATION, AND LIVING ALONE AMONG PEOPLE WITH DEMENTIA AND THEIR CARERS: INSIGHTS FROM THE IDEAL STUDY

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S39-S39
Author(s):  
Christina Victor ◽  
Elizabeth B Fauth
Keyword(s):  
Research Programme ◽  
Well Being ◽  
Network Size ◽  
Living Well ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Scale Range ◽  
Key Indicators ◽  
The Ideal

Abstract The IDEAL research programme is national nine-year (2014-2022) ESRC/NIHR/Alzheimer’s Society UK funded longitudinal cohort study of 1547 people with mild to moderate dementia and 1283 family members or friends who provide support and aims to identify what promotes (or inhibits) people living well with dementia and their carers and how these change longitudinally. Loneliness and/or isolation are key indicators of quality of life and living well is posited as a factor which compromises wellbeing. Loneliness was measured using both the six-item de Jong Gierveld (DJG) scale (range 0-6) and isolation by the six-item Lubben social network scale (range 0 to 30). The three presentations in this symposium use data from the baseline assessment. Clare focuses upon the 18.5% of our participants who live alone and compares them with those living with others and suggests that there are few systematic differences in terms of cognition, psychological factors and well-being between these groups. Using a score of 5+ on the DJG scale, Victor reports that for people with dementia 5 % were severely lonely, which approximates to the national norm, compared with 17% for caregivers. For social isolation people with dementia had smaller social networks (mean =15.1) and higher levels of isolation as measured by a score of 12 or less on the Lubben scale (35%) compared with caregivers (mean network size=17.1 and 18% isolated). Victor and Clare use dyad data for 1089 pairs for loneliness and 1204 for isolation demonstrating congruence of 43% for loneliness and 68% for isolation

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 Discontinuity in the Subjective Experience of Self Among People with Mild-To-Moderate Dementia Is Associated with Poorer Psychological Health: Findings from the IDEAL Cohort

2020 ◽  
Vol 77 (1) ◽  
pp. 127-138
Author(s):  
Linda Clare ◽  
Anthony Martyr ◽  
Robin G. Morris ◽  
Lynette J. Tippett
Keyword(s):  
Psychological Health ◽  
Subjective Experience ◽  
Significant Proportion ◽  
Well Being ◽  
Psychological Well Being ◽  
Living Well ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Increased Risk ◽  
The Ideal

Background: The onset and progression of dementia can result in changes in the subjective experience of self, impacting on psychological health. Objective: We aimed to explore the extent to which people with mild-to-moderate dementia experience discontinuity in the subjective experience of self, and the factors associated with this experience for people with dementia and their family caregivers. Methods: We used data from the baseline assessment of the IDEAL cohort. Discontinuity in the subjective experience of self was assessed by asking participants about their agreement with the statement ‘I feel I am the same person that I have always been’. Participants were divided into those who did and did not experience discontinuity, and the two groups were compared in terms of demographic and disease-related characteristics, psychological well-being, measures of ‘living well’, and caregiver stress. Results: Responses to the continuity question were available for 1,465 participants with dementia, of whom 312 (21%) reported experiencing discontinuity. The discontinuity group experienced significantly poorer psychological well-being and had significantly lower scores on measures of ‘living well’. There was no clear association with demographic or disease-related characteristics, but some indication of increased caregiver stress. Conclusion: A significant proportion of people with mild-to-moderate dementia describe experiencing discontinuity in the subjective sense of self, and this is associated with poorer psychological health and reduced ability to ‘live well’ with the condition. Sensitively asking individuals with dementia about the subjective experience of self may offer a simple means of identifying individuals who are at increased risk of poor well-being.

scholarly journals Does awareness of condition help people with mild-to-moderate dementia to live well? Findings from the IDEAL programme

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Catherine M. Alexander ◽  
Anthony Martyr ◽  
Laura D. Gamble ◽  
Sharon A. Savage ◽  
Catherine Quinn ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Life Satisfaction ◽  
Clinical Care ◽  
Well Being ◽  
Cross Sectional ◽  
Living Well ◽  
People With Dementia ◽  
Moderate Dementia ◽  
The Ideal

Abstract Background People living with dementia vary in awareness of their abilities. We explored awareness of the condition and diagnosis in people with mild-to-moderate dementia, and how this relates to quality of life, well-being, life satisfaction, and caregiver stress. Methods This study was a cross-sectional exploratory analysis of data from the IDEAL cohort, which recruited people with dementia living at home and available caregivers from 29 research sites in Great Britain. Our study included 917 people with mild-to-moderate dementia and 755 carers. Low and high awareness groups were derived from self-reported responses to a dementia representation measure. Logistic regression was used to explore predictors of awareness of condition and diagnosis using demographic, cognitive, functional and psychological measures, and the relationship with quality of life, well-being and life satisfaction (‘living well’), and caregiver stress. Results There were 83 people with low awareness of their condition. The remaining 834 people showed some awareness and 103 of these had high awareness of their condition and diagnosis. Psychosocial factors were stronger predictors of awareness than cognitive and functional ability. Those with higher awareness reported lower mood, and lower scores on indices of living well as well as lower optimism, self-efficacy and self-esteem. Low awareness was more likely in those aged 80y and above, and living in more socially deprived areas. No relationship was seen between caregiver stress and awareness. Conclusions Awareness of the condition and diagnosis varies in people with mild-to-moderate dementia and is relevant to the capability to live well. Awareness should be considered in person-centered clinical care.

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 What Are the Benefits of Pet Ownership and Care Among People With Mild-to-Moderate Dementia? Findings From the IDEAL programme

2020 ◽  
pp. 073346482096261
Author(s):  
Carol Opdebeeck ◽  
Michael A. Katsaris ◽  
Anthony Martyr ◽  
Ruth A. Lamont ◽  
James A. Pickett ◽  
...  
Keyword(s):  
Positive Outcomes ◽  
Pet Ownership ◽  
Active Life ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Self Reports ◽  
Key Factor ◽  
Person With Dementia ◽  
The Ideal

Pet ownership has been associated with positive outcomes in many populations, yet the associations with physical and psychological wellbeing in people with dementia remain unclear. The current study used baseline data from 1,542 people living at home with mild-to-moderate dementia from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme. Regression analyses investigated associations of pet ownership and pet care with self-reports of walking, loneliness, depression, and quality of life (QoL). After adjusting for covariates, having any pet was associated with higher likelihood of walking over 3 hr in the last week. Those with a dog and who were involved in its care were less likely to be lonely than those with no dog. Having any pet but no involvement in its care was associated with increased depression and decreased QoL compared with those without a pet. The key factor in the associations was involvement in the care of the pet by the person with dementia.

Models of home care services for persons with dementia: a narrative review

2015 ◽  
Vol 27 (10) ◽  
pp. 1593-1600 ◽  
Author(s):  
Lee-Fay Low ◽  
Jennifer Fletcher
Keyword(s):  
Case Management ◽  
Home Care ◽  
Integrated Care ◽  
Community Dwelling ◽  
Narrative Review ◽  
Nursing Home Admission ◽  
Community Based ◽  
People With Dementia ◽  
The Impact ◽  
Community Based Services

ABSTRACTBackground:Worldwide trends of increasing dementia prevalence, have put economic and workforce pressures to shifting care for persons with dementia from residential care to home care.Methods:We reviewed the effects of the four dominant models of home care delivery on outcomes for community-dwelling persons with dementia. These models are: case management, integrated care, consumer directed care, and restorative care. This narrative review describes benefits and possible drawbacks for persons with dementia outcomes and elements that comprise successful programs.Results:Case management for persons with dementia may increase use of community-based services and delay nursing home admission. Integrated care is associated with greater client satisfaction, increased use of community based services, and reduced hospital days however the clinical impacts on persons with dementia and their carers are not known. Consumer directed care increases satisfaction with care and service usage, but had little effect on clinical outcomes. Restorative models of home care have been shown to improve function and quality of life however these trials have excluded persons with dementia, with the exception of a pilot study.Conclusions:There has been a little research into models of home care for people with dementia, and no head-to-head comparison of the different models. Research to inform evidence-based policy and service delivery for people with dementia needs to evaluate both the impact of different models on outcomes, and investigate how to best deliver these models to maximize outcomes.

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