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 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 co-morbidity on the quality of life of people with dementia: findings from the IDEAL study

2018 ◽  
Vol 48 (3) ◽  
pp. 361-367 ◽  
Author(s):  
Sharon M Nelis ◽  
Yu-Tzu Wu ◽  
Fiona E Matthews ◽  
Anthony Martyr ◽  
Catherine Quinn ◽  
...  
Keyword(s):  
Quality Of Life ◽  
People With Dementia ◽  
Co Morbidity ◽  
Ideal Study ◽  
The Impact ◽  
The Ideal

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 Caregiver influences on ‘living well’ for people with dementia: Findings from the IDEAL study

2019 ◽  
Vol 24 (9) ◽  
pp. 1505-1513
Author(s):  
Catherine Quinn ◽  
Sharon M. Nelis ◽  
Anthony Martyr ◽  
Robin G. Morris ◽  
Christina Victor ◽  
...  
Keyword(s):  
Living Well ◽  
People With Dementia ◽  
Ideal Study ◽  
The Ideal

scholarly journals THE IDEAL STUDY MODEL OF LIVING WELL WITH DEMENTIA

2018 ◽  
Vol 2 (suppl_1) ◽  
pp. 358-358
Author(s):  
C Victor ◽  
I Jones ◽  
Y Wu ◽  
F Matthews ◽  
S Nelis ◽  
...  
Keyword(s):  
Living Well ◽  
Ideal Study ◽  
The Ideal

scholarly journals Improving the experience of dementia and enhancing active life - living well with dementia: study protocol for the IDEAL study

2014 ◽  
Vol 12 (1) ◽  
Author(s):  
Linda Clare ◽  
Sharon M Nelis ◽  
Catherine Quinn ◽  
Anthony Martyr ◽  
Catherine Henderson ◽  
...  
Keyword(s):  
Study Protocol ◽  
Living Well ◽  
Active Life ◽  
Ideal Study ◽  
The Ideal

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 Best Practices in Museum Programming for People With Dementia and Their Care Partners

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 836-836
Author(s):  
Carolyn Halpin-Healy ◽  
James Noble
Keyword(s):  
Adult Learning ◽  
Best Practices ◽  
Adult Learning Theory ◽  
Art Making ◽  
The Past ◽  
Living Well ◽  
Person Centered Care ◽  
People With Dementia ◽  
Care Partners ◽  
Centered Care

Abstract As more people are living longer with dementia, museums can play an important public health role to support individuals, families, and communities. Arts & Minds programs for people with dementia and their care partners are designed according to principles of person-centered care and adult learning theory. The approach builds on research and evaluation to provide contact with art, which has been shown to reduce apathy and soothe agitation in persons with dementia and also to reduce caregiver stress. According to our observation- and feedback-based assessments of more than 500 program participants over the past 10 years, the processes of collective looking and art making specifically address symptoms of dementia and support human dignity. This presentation addresses the growing research base on the benefits of museum programming, and the ways in which research and evaluation support best practices in museum education to address the challenge of living well with dementia.

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.

Sign in / Sign up

Export Citation Format

Share Document