Long-term impact of the COVID-19 pandemic on the quality of life of people with dementia and their family carers.

INTRODUCTION: Few studies have longitudinally mapped quality of life (QoL) trajectories of newly diagnosed people with dementia and their carers, particularly during coronavirus disease-2019 (COVID-19). METHODS: In a UK cohort study, 261 newly diagnosed people with dementia and 206 family carers were assessed prior to the pandemic (July 2019-March 2020), followed up after the first lockdown (July-October 2020) and then again a year and 2 years later. Latent growth curve modelling examined the level and change of QoL over the four time-points using dementia-specific QoL measures (DEMQOL and C-DEMQOL). RESULTS: Despite variations in individual change scores, our results suggest that generally people with dementia maintained their QoL during the pandemic and experienced some increase towards the end of the period. This contrasted with carers who reported a general deterioration in their QoL over the same period. 'Confidence in future' and 'Feeling supported' were the only carer QoL subscales to show some recovery post-pandemic. DISCUSSION: It is positive that even during a period of global disruption, decline in QoL is not inevitable following the onset of dementia. However, it is of concern that carer QoL declined during this same period even after COVID-19 restrictions had been lifted. Carers play an invaluable role in the lives of people with dementia and wider society, and our findings suggest that, post-pandemic, they may require greater support to maintain their QoL.

Receipt of help by people with cognitive impairment: results from the English Longitudinal Study of Ageing.

OBJECTIVES: We investigated whether people with dementia or low memory/orientation reported more help misaligned with needs - more unmet need and/or more unrequired help - than other people with similar levels of functional limitation, and examined associations with quality of life. METHODS: From pooled English Longitudinal Study of Ageing data from waves 6, 7, and 8, we identified community-dwelling people aged 50+ with: dementia (n= 405); low memory/orientation but no dementia (n= 4520); and intact memory/orientation (n= 10,264). Unmet need (not receiving help for the functional limitation) and unrequired help (receipt of help without the respective functional limitation) were used as outcomes in two-part regressions. Quality of life (CASP-19) was used as a continuous outcome in a linear regression. Functional limitation and its interaction with cognitive status and socio-demographic factors were included in the models. RESULTS: Those with dementia or low memory/orientation but few functional limitations reported more unmet needs and unrequired help than their counterparts with intact memory/orientation. At high levels of limitations, the needs of those with dementia or lower memory/orientation were met more often and the receipt of unrequired help was similar compared to those with intact memory/orientation. Unmet need and unrequired help were associated with poorer quality of life. CONCLUSIONS: Unmet need and unrequired help were particular challenges for those with poorer cognition and potentially at early stages of dementia; they were associated with lower quality of life. Our results highlight the importance of good-quality timely diagnosis, identification of needs, and person-centred assessment to help improve quality of life.

Predictors of loneliness during the Covid-19 pandemic in people with dementia and their carers in England: findings from the DETERMIND-C19 study.

OBJECTIVES: To identify factors that predict the risk of loneliness for people with dementia and carers during a pandemic. METHODS: People with dementia and their carers completed assessments before (July 2019-March 2020; 206 dyads) and after (July-October 2020) the first Covid-19 'lockdown' in England. At follow-up, the analytic sample comprised 67 people with dementia and 108 carers. We built a longitudinal path model with loneliness as an observed outcome. Carer type and social contacts at both measurements were considered. Other social resources (quality of relationship, formal day activities), wellbeing (anxiety, psychological wellbeing) and cognitive impairment were measured with initial level and change using latent growth curves. We adjusted for socio-demographic factors and health at baseline. RESULTS: In carers, higher levels of loneliness were directly associated with non-spouse coresident carer type, level and increase of anxiety in carer, more formal day activities, and higher cognitive impairment in the person with dementia. In people with dementia, non-spouse coresident carer type, and higher initial levels of social resources, wellbeing, and cognitive impairment predicted the changes in these factors; this produced indirect effects on social contacts and loneliness. CONCLUSION: Loneliness in the Covid-19 pandemic appears to be shaped by different mechanisms for people with dementia and their carers. The results suggest that carers of those with dementia may prioritize providing care that protects the person with dementia from loneliness at the cost of experiencing loneliness themselves. Directions for the promotion of adaptive social care during the Covid-19 pandemic and beyond are discussed.

School burnout trends and sociodemographic factors in Finland 2006-2019.

PURPOSE: To identify the changes of school burnout for Finnish adolescents in lower (grades 8-9) and upper secondary schools (grades 10-11) during years 2006-2019; and to examine the associations of personal-(gender, family socioeconomic, and immigrant status) and school-related (school level, urban-rural area) sociodemographic demands and resources in school burnout. METHODS: We used nationally representative data on 949,347 students in secondary school in Finland between 2006 and 2019. Generalized Linear Models were used to assess the effects of year, gender, school level, parental education, unemployment, immigrant status, and urban-rural area and the interactions of year, gender, and school level with each of the remaining sociodemographic variables on school burnout. RESULTS: School burnout increased among girls and slightly declined among boys. The increase intensified in girls and the decline in boys stagnated after 2011. The educational level of the parents had a constant protective impact over time, the gradient for boys slightly larger compared to girls. Urban areas contributed to the trend of increasing school burnout among girls but not among boys. Parental unemployment and immigration background were associated with the increasing trend of school burnout over time, although somewhat mitigated by parental education. CONCLUSION: The results showed the trends in school burnout are often gendered and appeared to worsen aligned with the school budget cuts after 2011. In addition to considering school burnout related to lower parental education and urbanization, it is important to support those students in families experiencing unemployment and/or immigration, especially when concurring with lower parental education.

DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers (DETERMIND): A protocol paper.

OBJECTIVES: DETERMIND (DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers) is designed to address fundamental, and, as yet unanswered questions about inequalities, outcomes and costs following diagnosis with dementia. These answers are needed to improve the quality of care and equity of access to care, and therefore the quality of life, of people with dementia and their carers. METHOD: DETERMIND is a programme of research consisting of seven complementary workstreams (WS) exploring various components that may result in unequal dementia care: WS1: Recruitment and follow-up of the DETERMIND cohort-900 people with dementia and their carers from three geographically and socially diverse sites within six months following diagnosis, and follow them up for three years. WS2: Investigation of the extent of inequalities in access to dementia care. WS3: Relationship between use and costs of services and outcomes. WS4: Experiences of self-funders of care. WS5: Decision-making processes for people with dementia and carers. WS6: Effect of diagnostic stage and services on outcomes. WS7: Theory of Change informed strategy and actions for applying the research findings. OUTCOMES: During the life of the programme, analysing baseline results and then follow-up of the DETERMIND cohort over 3 years, we will establish evidence on current services and practice. DETERMIND will deliver novel, detailed data on inequalities in dementia care and what drives positive and negative outcomes and costs for people with dementia and carers, and identify factors that help or hinder living well with dementia.

Fertility trajectories and later-life depression among parents in England.

We examine pathways between indicators of fertility tempo/quantum and depressive symptoms among parents aged 55+ with at least two children, using three waves of the English Longitudinal Study of Ageing. Using standard regression approaches and path analysis within the structural equation framework, we also investigate whether fertility trajectories mediated the association between childhood disadvantage and later-life depression. Results provide limited support for direct influences of fertility trajectories on depression, but indicate indirect linkages for both women and men. Associations are mediated by partnership history, social support, wealth, later-life smoking, and functional limitation. Associations between childhood disadvantage and later-life depression are partially mediated by fertility stressors. Results confirm the influence of life course experiences on depression at older ages and demonstrate the interlinked role of family and other life course pathways on later-life well-being.

Partners of nulliparous women with severe fear of childbirth: A longitudinal study of psychological well-being.

BACKGROUND: Little is known about the psychological status of partners of women with severe fear of childbirth (FOC). In this longitudinal study from Helsinki University Central Hospital, we investigated FOC, depression, and posttraumatic stress in the partners of women with severe FOC, and possible effects of group psychoeducation and mode of birth. METHODS: During pregnancy, 250 partners of nulliparous women with severe FOC participated, 93 in the intervention group and 157 in the control group. At 3 months postpartum, 52 partners in the intervention group and 93 in the control group participated. Both the partners and the childbearing women filled in the Wijma Delivery Expectancy/Experience Questionnaire and the Edinburgh Postnatal Depression Scale mid-pregnancy as well as 3 months postpartum, when they also filled in the Traumatic Event Scale. RESULTS: Partners of women with severe FOC reported less antenatal and postnatal FOC and fewer depressive symptoms than the childbearing women. No partner reached the threshold of severe FOC. No partner reported a possible posttraumatic stress disorder. Group psychoeducation with relaxation was not associated with better or worse psychological well-being of the partners. An emergency cesarean delivery was associated with a more fearful delivery experience in the partners. CONCLUSION: Partners of nulliparous women with severe FOC neither seem to suffer from severe FOC nor reported posttraumatic stress symptoms after childbirth. They reported better psychological well-being than the mothers both during pregnancy and after delivery. An unexpected cesarean may be a negative experience even for partners of childbearing women.

Socio-economic position and subjective health and well-being among older people in Europe: a systematic narrative review.

OBJECTIVES: Previous studies of older European populations have established that disability and morbidity vary with indicators of socio-economic position (SEP). We undertook a systematic narrative review of the literature to ascertain to what extent there is evidence of similar inequalities in the subjective health and well-being of older people in Europe. METHOD: Relevant original research articles were searched for using Medline, Global Health, Embase, Social Policy and Practice, Cinahl, Web of Science and International Bibliography of the Social Sciences (IBSS). We included studies of SEP and indicators of subjective health and well-being (self-rated health; life satisfaction; quality of life) conducted since 1991 using population-based samples of older people in Europe and published 1995-2013. RESULTS: A total of 71 studies were identified. Poorer SEP was associated with poorer subjective health and well-being. Associations varied somewhat depending on the SEP measure and subjective health and well-being outcome used. Associations were weaker when social support and health-related behaviours were adjusted for suggesting that these factors mediate the relationship between SEP and subjective health and well-being. Associations tended to be weaker in the oldest age groups. The patterns of associations by gender were not consistent and tended to diminish after adjusting for indicators of health and life circumstances. CONCLUSION: The results of this systematic narrative review of the literature demonstrate the importance of social influences on later life subjective health and well-being and indicate areas which need further investigation, such as more studies from Eastern Europe, more longitudinal studies and more research on the role of mediating factors.

Allostatic load and health in the older population of England: a crossed-lagged analysis.

OBJECTIVE: Allostatic load, a composite measure of accumulated physical wear and tear, has been proposed as an early sign of physiological dysregulation predictive of health problems, functional limitation, and disability. However, much previous research has been cross sectional and few studies consider repeated measures. We investigate the directionality of associations between allostatic load, self-rated health, and a measure of physical function (walking speed). METHODS: The sample included men and women 60 and older who participated in Wave 2 (2004) and Wave 4 (2008) of the English Longitudinal Study of Ageing (n = 6132 in Wave 2). Allostatic load was measured with nine biomarkers using a multisystem summary approach. Self-rated health was measured using a global 5 point summary indicator. Time to walk 8 ft was used as a measure of function. We fitted and tested autoregressive cross-lagged models between the allostatic load measure, self-rated health, and walking speed in Waves 2 and 4. Models were adjusted for age, sex, educational level, and smoking status at Wave 2 and for time-varying indicators of marital status, wealth, physical activity, and social support. RESULTS: Allostatic load predicted slower walking speed (standardized estimate = -0.08, 95% confidence interval [CI] = -0.10 to -0.05). Better self-rated health predicted faster walking speed (standardized estimate = 0.11, 95% CI = 0.08-0.13) as well as lower allostatic load (standardized estimate = -0.15, 95% CI = -0.22 to -0.09), whereas paths from allostatic load and walking speed to self-rated health were weaker (standardized estimates = -0.05 [95% CI = -0.07 to -0.02] and 0.06 [95% CI = 0.04-0.08]). CONCLUSIONS: Allostatic load can be a useful risk indicator of subsequent poor health or function.

Depressive symptoms and career-related goal appraisals: genetic and environmental correlations and interactions.

In order to further understand why depressive symptoms are associated with negative goal appraisals, the present study examined the genetic and environmental correlations and interactions between depressive symptoms and career-related goal appraisals. A total of 1,240 Finnish twins aged 21-26 years completed a questionnaire containing items on the appraisal of their career goals along five dimensions: importance, progress, effort, strain, and self-efficacy. In the same questionnaire, the 10-item General Behavior Inventory assessed depressive symptoms. Structural equation modeling was used to evaluate the genetic and environmental correlations and gene-environment interactions between the career-goal appraisals and depressive symptoms. Associations were identified, and were attributed to environmental factors. Of the career-related goal appraisals, the shared environmental component was of a higher magnitude for the dimension of strain among the depressed compared with non-depressed subjects. The results indicate that the interplay between depressive symptoms and negative career-related goal appraisals is significantly affected by environmental factors, and thus possibly susceptible to targeted interventions.

Do negative life events promote gerotranscendence in the second half of life?

OBJECTIVES: Gerotranscendence has been defined as a developmental shift in meta-perspective from a materialistic and pragmatic view to a more cosmic and transcendent view. Although gerotranscendence has been argued to increase with age and life experiences, the results have been mixed and based on cross-sectional studies. We use a longitudinal setting to investigate the role of negative life events, age, and gender on change in one dimension of gerotranscendence, cosmic transcendence. METHOD: 1569 individuals (ages 58-89) answered a questionnaire on cosmic transcendence in two cycles of the Longitudinal Aging Study Amsterdam in 1995-1996 (time 1) and 1998-1999 (time 2). Controlling for education, marital status, religious affiliation, chronic diseases, functional limitations, depressive symptoms, and social support, change models based on structural equation modeling were fitted to the data to test whether negative life events, age, and gender were associated with change in cosmic transcendence. RESULTS: A higher number of negative life events, especially negative life events other than deaths of others, were associated with increased cosmic transcendence, whereas experiencing no negative life events was associated with decreased cosmic transcendence. The level of cosmic dimension was higher at older than younger ages. Cosmic transcendence decreased over time among the older participants and women, whereas it increased among the younger participants and men. CONCLUSION: Experiencing negative life events has the potential to promote the development of cosmic transcendence, even when controlling for age and gender. In the absence of negative life events, however, cosmic transcendence was observed to decline with aging.

Older women's personal goals and exercise activity: an 8-year follow-up.

This study investigated the associations of personal goals with exercise activity, as well as the relationships between exercise-related and other personal goals, among older women. Both cross-sectional and longitudinal designs were used with a sample of 308 women ages 66-79 at baseline. Women who reported exercise-related personal goals were 4 times as likely to report high exercise activity at baseline than those who did not report exercise-related goals. Longitudinal results were parallel. Goals related to cultural activities, as well as to busying oneself around the home, coincided with exercise-related goals, whereas goals related to own and other people's health and independent living lowered the odds of having exercise-related goals. Helping older adults to set realistic exercise-related goals that are compatible with their other life goals may yield an increase in their exercise activity, but this should be evaluated in a controlled trial.

Sense of coherence: effect on adherence and response to resistance training in older people with hip fracture history.

Our aim was to study the effects of sense of coherence (SOC) on training adherence and interindividual changes in muscle strength, mobility, and balance after resistance training in older people with hip fracture history. These are secondary analyses of a 12-week randomized controlled trial of progressive resistance training in 60- to 85-year-old community-dwelling people 0.5-7 years after hip fracture (n = 45; ISRCTN34271567). Pre- and posttrial assessments included SOC, knee extension strength, walking speed, timed up-and-go (TUG), and Berg Balance Scale (BBS). Group-by-SOC interaction effects (repeated-measures ANOVA) were statistically significant for TUG (p = .005) and BBS (p = .040), but not for knee extension strength or walking speed. Weaker SOC was associated with poorer training adherence (mixed model; p = .009). Thus, more complicated physical tasks did not improve in those with weaker SOC, independently of training adherence. Older people with weaker SOC may need additional psychosocial support in physical rehabilitation programs to optimize training response.

Socioeconomic inequalities in mortality rates in old age in the World Health Organization Europe region.

Socioeconomic adversity is among the foremost fundamental causes of human suffering, and this is no less true in old age. Recent reports on socioeconomic inequalities in mortality rate in old age suggest that a low socioeconomic position continues to increase the risk of death even among the oldest old. We aimed to examine the evidence for socioeconomic mortality rate inequalities in old age, including information about associations with various indicators of socioeconomic position and for various geographic locations within the World Health Organization Region for Europe. The articles included in this review leave no doubt that inequalities in mortality rate by socioeconomic position persist into the oldest ages for both men and women in all countries for which information is available, although the relative risk measures observed were rarely higher than 2.00. Still, the available evidence base is heavily biased geographically, inasmuch as it is based largely on national studies from Nordic and Western European countries and local studies from urban areas in Southern Europe. This bias will hamper the design of European-wide policies to reduce inequalities in mortality rate. We call for a continuous update of the empiric evidence on socioeconomic inequalities in mortality rate.

Effects of intensive strength-power training on sense of coherence among 60-85-year-old people with hip fracture: a randomized controlled trial.

BACKGROUND AND AIMS: Older people with disabilities are at increased risk of psychological health decline. There are no earlier studies on the effects of resistance training on sense of coherence (SOC) among older people with a history of hip fracture. The aim of this study is to test the effects of intensive 12-week strength-power training on SOC among older adults after hip fracture. METHODS: A clinical sample of 60-85-year-old community-dwelling men and women was studied, 0.5. to 7.0 years after hip fracture. Forty-six had no contraindications for participation and were randomized into training (n=24) and control groups (n=22). The training group participated in a 12-week, individually tailored, strength-power training program, twice a week in a senior gym and supervised by an experienced physiotherapist. SOC was assessed with Antonovsky's short 13-item scale. Data were collected at baseline and after intervention. RESULTS: Intensive 12-week strength-power training had no effect on participants' SOC level. CONCLUSIONS: Results indicated no change in SOC after 12-week physical exercise training among participants after hip fracture. Further studies on SOC among older people with disabilities and potential ways of increasing it are needed.

A cohort study of the impact of COVID-19 on the quality of life of people newly diagnosed with dementia and their family carers.

Introduction: COVID-19 has impacted people with dementia and their family carers, yet little is known about effects on overall quality of life. Methods: In a UK cohort study, pre- and post-pandemic data were collected from 114 carers and 93 recently diagnosed people with dementia. Latent growth curve modeling examined change in quality of life. Results: Carers reported significant decline in quality of life, although no change was demonstrated by people with dementia. In multivariable analyses, higher levels of cognitive impairment, deprivation, study site, and lower number of memory clinic contacts were associated with greater decline in carer quality of life. Discussion: Maintaining life quality for people with dementia during the pandemic appears to have come at the expense of their family carers. This inequity has fallen hardest on those caring for people with more severe dementia, in deprived areas, and with least support from memory services. These effects may be prevented or reversed by post-diagnostic care.

Mental health among older married couples: the role of gender and family life.

PURPOSE: As shared family context may be an important influence on mental health, and gender differences in mental health, in later life we investigated how gender, family-related variables and gender roles were associated with mental health in older married couples. METHODS: Using data on a sample of 2,511 married couples born between 1923 and 1953 (drawn from the British Household Panel Survey) we analysed differences in the mental health of husbands and wives by fertility history, length of marriage, presence of co-resident children, reported social support, hours of household work, attitudes to gender roles and health of husband and wife. Mental health in 2001 was measured using the General Health Questionnaire (GHQ-12). Multilevel modelling was used to assess effects in husbands and wives and variations between husbands and wives. RESULTS: Results showed that although the mental health of married couples was correlated, wives had poorer mental health than their husbands. The gender difference was smaller in couples who lived with a child aged 16 or more (and had no younger co-resident children) and in couples in which both spouses had experienced early parenthood. The influence of individual and family characteristics on mental health also differed between husbands and wives. For husbands, early fatherhood and co-residence with a child or children aged 16 or more increased the odds of poor mental health. For wives, having had a child when aged 35 or more appeared protective while having traditional gender role attitudes increased the odds of poorer mental health. CONCLUSIONS: The role of family characteristics in the shared marital context has complex associations with mental health, some of which seem gender specific. Although wives express more mental distress, husbands in general show poorer mental health related to family characteristics.

Fertility history, health, and health changes in later life: a panel study of British women and men born 1923-49.

We investigated associations between later-life health and fertility history for women and men, using the British Household Panel Survey. We modelled health and its rate of change jointly with sample retention over an 11-year period. For women, childlessness is associated with limitation of activity for health reasons and faster acquisition of the limitation. High parity (four or more children) is associated with poorer health for both women and men. For the parous, this association is also found when age at first birth is controlled. Early parenthood is associated with poorer health. For parents of two or more children, a birth interval of less than 18 months is associated with having a health limitation and an accelerated rate of acquiring it. We conclude that biosocial pathways link parenthood careers and the later-life health of both women and men, and that implications of closely spaced births for parents merit further attention.

A Longitudinal Study of Functional Unmet Need Among People with Dementia.

BACKGROUND: Understanding the changes of unmet need in dementia may enable effective targeting of help and allow people to stay in their homes longer. OBJECTIVE: We investigated changes in unmet need and functioning over a 4-year period and the role of socio-demographic factors in these changes among people with dementia. METHODS: 234 community-dwelling people with dementia at baseline were studied in three consecutive waves (four years) of the English Longitudinal Study of Ageing (ELSA). Unmet needs (self/informant-reported limitations for which no help was received) and functional limitations (self/informant-reported difficulties in activities/instrumental activities of daily living and mobility) were modelled with latent growth curves. Sex, age, partnership, and socioeconomic status at baseline were used as predictors. Admission to a care home was an additional outcome. RESULTS: Unmet needs increased over time, especially among those who initially had more functional limitations. Unmet needs contributed to faster decline in functional capability, except among those with many limitations initially. The major driver of increased unmet needs was not having a partner (direct effect). Age, sex, and wealth contributed indirectly via the initial level of functional limitations and/or unmet need. Those with several functional limitations but few unmet needs were most likely to move to a care home. CONCLUSION: Unmet need increases over time in those with dementia with mitigating effects of having a partner and initial levels of functioning. Meeting needs at early stages of dementia, especially for those living alone and when functional limitations are low may help slow functional decline.

Public preferences for paying for social care in later life in England: A latent class analysis.

There is ongoing debate about how the funding system for social care of older people in England should best be reformed. We investigated how public attitudes to individual and state responsibility for paying for social care in later life vary with demographic and socio-economic characteristics. Four vignettes of individuals in need of home care or residential care with varying levels of savings, income and housing wealth were presented to a sample of people aged 18-75 years (n = 3000) in December 2018. Respondents were asked if care costs should be paid by the user, the state or shared. They were also asked about the best way to pay for social care in old age. Latent class analysis was used to identify sub-groups with similar preferences for paying for care, and to explore their socio-demographic characteristics. We identified five classes. The majority (Class 1, 58%) preferred that the state and the user should share social care costs. Class 2 (18%) thought that the state should pay all costs regardless of users' savings, income or housing wealth. Class 3 (15%) preferred users to pay all costs at all levels of savings, income and housing wealth, with the exception of those unable to afford the costs. Classes 4 and 5 (5% each) were characterised by different patterns of 'don't know' answers. Socio-economic status was higher among those proposing higher user contributions (Class 3) and lower among those with several 'don't' know' responses (Classes 4 and 5). Concerns about care costs in old age were high among those proposing that the state pays all costs (Class 2) and those preferring that users pay all costs (Class 3). This study shows that public views on social care funding vary with respondents' characteristics and that proposals to reform the system need to be carefully calibrated.