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 well with dementia: a systematic review and correlational meta-analysis of factors associated with quality of life, well-being and life satisfaction in people with dementia

2018 ◽  
Vol 48 (13) ◽  
pp. 2130-2139 ◽  
Author(s):  
Anthony Martyr ◽  
Sharon M. Nelis ◽  
Catherine Quinn ◽  
Yu-Tzu Wu ◽  
Ruth A. Lamont ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Life Satisfaction ◽  
Social Engagement ◽  
Meta Analysis ◽  
Well Being ◽  
Factors Associated ◽  
Living Well ◽  
People With Dementia

AbstractCurrent policy emphasises the importance of ‘living well’ with dementia, but there has been no comprehensive synthesis of the factors related to quality of life (QoL), subjective well-being or life satisfaction in people with dementia. We examined the available evidence in a systematic review and meta-analysis. We searched electronic databases until 7 January 2016 for observational studies investigating factors associated with QoL, well-being and life satisfaction in people with dementia. Articles had to provide quantitative data and include ⩾75% people with dementia of any type or severity. We included 198 QoL studies taken from 272 articles in the meta-analysis. The analysis focused on 43 factors with sufficient data, relating to 37639 people with dementia. Generally, these factors were significantly associated with QoL, but effect sizes were often small (0.1–0.29) or negligible (<0.09). Factors reflecting relationships, social engagement and functional ability were associated with better QoL. Factors indicative of poorer physical and mental health (including depression and other neuropsychiatric symptoms) and poorer carer well-being were associated with poorer QoL. Longitudinal evidence about predictors of QoL was limited. There was a considerable between-study heterogeneity. The pattern of numerous predominantly small associations with QoL suggests a need to reconsider approaches to understanding and assessing living well with dementia.

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 Factors associated with self- and informant ratings of quality of life, well-being and life satisfaction in people with mild-to-moderate dementia: results from the Improving the experience of Dementia and Enhancing Active Life programme

2020 ◽  
Vol 49 (3) ◽  
pp. 446-452 ◽  
Author(s):  
Yu-Tzu Wu ◽  
Sharon M Nelis ◽  
Catherine Quinn ◽  
Anthony Martyr ◽  
Ian R Jones ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Life Satisfaction ◽  
Well Being ◽  
Social Psychological ◽  
Informant Ratings ◽  
Factors Associated ◽  
Active Life ◽  
People With Dementia ◽  
Moderate Dementia

Abstract Background a large number of studies have explored factors related to self- and informant ratings of quality of life in people with dementia, but many studies have had relatively small sample sizes and mainly focused on health conditions and dementia symptoms. The aim of this study is to compare self- and informant-rated quality of life, life satisfaction and well-being, and investigate the relationships of the two different rating methods with various social, psychological and health factors, using a large cohort study of community-dwelling people with dementia and carers in Great Britain. Methods this study included 1,283 dyads of people with mild-to-moderate dementia and their primary carers in the Improving the experience of Dementia and Enhancing Active Life study. Multivariate modelling was used to investigate associations of self- and informant-rated quality of life, life satisfaction and well-being with factors in five domains: psychological characteristics and health; social location; capitals, assets and resources; physical fitness and health; and managing everyday life with dementia. Results people with dementia rated their quality of life, life satisfaction and well-being more highly than did the informants. Despite these differences, the two approaches had similar relationships with social, psychological and physical health factors in the five domains. Conclusion although self- and informant ratings differ, they display similar results when focusing on factors associated with quality of life, life satisfaction and well-being. Either self- or informant ratings may offer a reasonable source of information about people with dementia in terms of understanding associated factors.

scholarly journals The role of subjective social status in living well for carers of people with dementia: findings from the Improving the experience of Dementia and Enhancing Active Life programme

2021 ◽  
Author(s):  
Christina R. Victor ◽  
Isla Rippon ◽  
Catherine Quinn ◽  
Anthony Martyr ◽  
Linda Clare
Keyword(s):  
Quality Of Life ◽  
Life Satisfaction ◽  
Social Status ◽  
Local Community ◽  
Well Being ◽  
Living Well ◽  
Active Life ◽  
People With Dementia

We investigated how carers of people with dementia evaluate their standing in their community and wider society, and if this is related to ‘living well’. We used baseline data from the Improving the experience of Dementia and Enhancing Active Life programme and found that carers rated their standing in society higher than in their local community. Higher evaluations of both were associated with enhanced life satisfaction, well-being and quality of life. Initiatives that increase support or engagement in the community or wider society may help to increase carers’ perceptions of their social status, enhancing their ability to ‘live well’.

Perceived Overprotection and Its Association With Quality of Life in Dementia

GeroPsych ◽  
2019 ◽  
Vol 32 (3) ◽  
pp. 125-134
Author(s):  
Mechthild Niemann-Mirmehdi ◽  
Andreas Häusler ◽  
Paul Gellert ◽  
Johanna Nordheim
Keyword(s):  
Quality Of Life ◽  
Patient Autonomy ◽  
Positive Association ◽  
Well Being ◽  
Negative Association ◽  
Significant Positive Association ◽  
Cross Sectional ◽  
People With Dementia ◽  
Mental Well Being

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.

scholarly journals Well Being of Older Gay and Bisexual Men and Women in England: Results of a Cross-Sectional Population Based Study

2019 ◽  
Vol 29 (Supplement_4) ◽  
Author(s):  
I Grabovac ◽  
L Smith ◽  
D T McDermott ◽  
S Stefanac ◽  
L Yang ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Life Satisfaction ◽  
Depressive Symptoms ◽  
Older People ◽  
Sexual Satisfaction ◽  
Well Being ◽  
Satisfaction With Life Scale ◽  
Cross Sectional ◽  
And Bisexual

Abstract Background Lesbian, gay, and bisexual (LGB) older people are an under-represented population in research, with limited research noting more depression, loneliness, rejection, overall poorer health and well-being outcomes. Our study compared well-being, defined as quality of life (QOL), life satisfaction, sexual satisfaction, and depression, among LGB people with their heterosexual peers’. Methods Cross-sectional data from the English Longitudinal Study of Aging, collected 2012-2013. A total of 5691 participants were included in the analysis, with 326 (5.7%) self-identifying as LGB. We used CASP-19 questionnaire for well-being; the Satisfaction with Life Scale for life satisfaction; and the Center for Epidemiologic Studies Depression Scale for depressive symptoms. The question “During the past three months, how satisfied have you been with your overall sex life?” was used for sexual satisfaction. T-test and chi-square tests were used for differences in sociodemographic characteristics between LGB and heterosexual participants. Regression models were used to test associations between sexual orientation and well-being outcomes. Results LGB participants reported significantly lower mean quality of life and life satisfaction, and had significantly lower odds of reporting satisfaction with their overall sex life and higher odds of reporting depressive symptoms in unadjusted models. After adjustment for sociodemographic and health-related covariates, there remained significant differences between groups in mean QOL scores (B= -0.96, 95% [CI] -1.87 to -0.06) and odds of sexual satisfaction (OR = 0.56, 95% CI 0.38-0.82). Conclusions LGB older people report lower quality of life and lower sexual satisfaction than their heterosexual counterparts, possibly associated with experiencing lifelong social discrimination. Main message: Older lesbian, gay and bisexual people in England report significantly lower QOL and sexual satisfaction in comparison to heterosexual counterparts.

scholarly journals An evaluation of community-based cognitive stimulation therapy: a pilot study with an Irish population of people with dementia

2016 ◽  
Vol 34 (3) ◽  
pp. 157-167 ◽  
Author(s):  
M. E. Kelly ◽  
S. Finan ◽  
M. Lawless ◽  
N. Scully ◽  
J. Fitzpatrick ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cognitive Function ◽  
Well Being ◽  
Cognitive Stimulation ◽  
Post Intervention ◽  
Community Based ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Subjective Cognitive Function

ObjectivesResearch shows that cognitive stimulation therapy (CST) improves cognitive function, quality of life, and well-being of people with mild–moderate dementia. Despite consistent evidence and recommendations, CST is not routinely available in Ireland post-diagnosis. The aim of the current research was to develop and evaluate community-based CST for people with mild–moderate dementia, run by the Alzheimer Society of Ireland across four pilot sites in Ireland.MethodsParticipants with mild–moderate dementia attended once weekly CST sessions for 14 weeks. Baseline and post-intervention assessments were completed by CST participants, carers, and CST facilitators. Primary outcomes of interest for CST participants included quality of life (Quality of Life in Alzheimer Disease Scale), cognitive function (Montreal Cognitive Assessment), and subjective cognitive function (Memory Awareness Rating Scale-Functioning Subscale). Secondary outcomes included well-being, cognitive ability, satisfaction with cognitive performance, and engagement and confidence of CST participants; well-being of carers; and job satisfaction of facilitators. Post-intervention interviews supplemented quantitative analyses.ResultsIn total, 20 CST participants, 17 carers, and six CST facilitators completed evaluation assessments. Results showed that CST improved participants’ satisfaction with cognitive performance (p=0.002), level of engagement (p=0.046), level of confidence (p=0.026). Improvements on subjective cognitive function just fell short of significance (p=0.055). Qualitative analysis of interview data identified consistent themes of cognitive and overall benefits of CST; and provided support for quantitative data.ConclusionsCommunity-based CST positively impacted the lives of people with dementia and their families. This study supports prior recommendations that CST should be made routinely available to people with mild–moderate dementia, particularly in light of the lack of post-diagnostic interventions currently offered in Ireland.

Identity, mood, and quality of life in people with early-stage dementia

2012 ◽  
Vol 24 (8) ◽  
pp. 1306-1315 ◽  
Author(s):  
Lisa S. Caddell ◽  
Linda Clare
Keyword(s):  
Quality Of Life ◽  
Positive Impact ◽  
Early Stage ◽  
Well Being ◽  
Cross Sectional ◽  
Early Stages ◽  
The People ◽  
People With Dementia ◽  
Relationship Of

ABSTRACTBackground: There is little empirical research regarding the relationships between identity and well-being in people with dementia. The aim of the study was to explore the relationship of identity with mood and quality of life (QoL) in the people in the early stages of dementia.Method: This was a cross-sectional questionnaire-based study. Fifty people in the early stages of dementia completed measures pertaining to different aspects of identity, mood, and QoL. Multiple regression analyses were carried out to determine whether it was possible to predict any of the variance in mood and QoL from aspects of identity.Results: It was possible to predict 12.8% of the variance in anxiety, 23.4% of the variance in depression, and 25.1% of the variance in QoL from different aspects of identity. Predictors varied for each dependent variable.Conclusions: Aspects of identity predict a modest proportion of the variance in anxiety, depression, and QoL. This suggests that supporting identity in people with dementia who are experiencing difficulties in this regard might have a positive impact on mood and QoL. However, the majority of the variance in mood and QoL must be accounted for by other variables.

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