A Comparison of Well-Being of Carers of People with Dementia and Their Ability to Manage Before and During the COVID-19 Pandemic: Findings from the IDEAL Study.

BACKGROUND: Social restriction measures imposed to curb the spread of COVID-19 in the United Kingdom impacted on carers of people with dementia, limiting access to support services and increasing perceived burden of caring. Few studies have compared data collected both during and before the pandemic to examine the effect of these changes. OBJECTIVE: To explore whether the COVID-19 pandemic affected the well-being of carers of people with dementia living in the community, and their ability to cope with their caring responsibilities. METHODS: Analysis was conducted on two groups of carers who were enrolled in the IDEAL programme; the 'pre-pandemic group' (n = 312), assessed at two time points prior to the pandemic, and the 'pandemic group', assessed prior to and several months into the pandemic (n = 156). For the pre-pandemic group, carers were matched 2:1 to carers in the pandemic group on certain characteristics. Differences in change over time between the two groups on self-reported well-being, quality of life, coping, perceived competence, and role captivity, were investigated using mixed effect modelling. RESULTS: Compared to the pre-pandemic group, those in the pandemic group appeared to cope better and had more stable self-rated competency and role captivity. They did not differ in terms of well-being or quality of life. CONCLUSIONS: Despite reports of negative impacts on carers early in the pandemic, the findings suggest the pandemic had little negative longer-term impact on carers of people with dementia, and in fact they appeared to have a more positive attitude towards coping several months into the pandemic.

Minimal Impact of COVID-19 Pandemic on the Mental Health and Wellbeing of People Living With Dementia: Analysis of Matched Longitudinal Data From the IDEAL Study.

Objective: Research suggests a decline in the mental health and wellbeing of people with dementia (PwD) during the COVID-19 pandemic; however few studies have compared data collected pre-pandemic and during the pandemic. Moreover, none have compared this change with what would be expected due to dementia progression. We explored whether PwD experienced changes in mental health and wellbeing by comparing pre-pandemic and pandemic data, and drew comparisons with another group of PwD questioned on two occasions prior to the pandemic. Methods: Community-dwelling PwD enrolled in the IDEAL programme were split into two groups matched for age group, sex, dementia diagnosis, and time since diagnosis. Although each group was assessed twice, one was assessed prior to and during the pandemic (pandemic group; n = 115) whereas the other was assessed prior to the pandemic (pre-pandemic group; n = 230). PwD completed measures of mood, sense of self, wellbeing, optimism, quality of life, and life satisfaction. Results: Compared to the pre-pandemic group, the pandemic group were less likely to report mood problems, or be pessimistic, but more likely to become dissatisfied with their lives. There were no changes in continuity in sense of self, wellbeing, and quality of life. Discussion: Results suggest the pandemic had little effect on the mental health and wellbeing of PwD, with any changes observed likely to be consistent with expected rates of decline due to dementia. Although personal accounts attest to the challenges experienced, PwD appear to have been resilient to the impact of lockdown and social restrictions during the pandemic.

A comparison over 2 decades of disability-free life expectancy at age 65 years for those with long-term conditions in England: Analysis of the 2 longitudinal Cognitive Function and Ageing Studies.

BACKGROUND: Previous research has examined the improvements in healthy years if different health conditions are eliminated, but often with cross-sectional data, or for a limited number of conditions. We used longitudinal data to estimate disability-free life expectancy (DFLE) trends for older people with a broad number of health conditions, identify the conditions that would result in the greatest improvement in DFLE, and describe the contribution of the underlying transitions. METHODS AND FINDINGS: The Cognitive Function and Ageing Studies (CFAS I and II) are both large population-based studies of those aged 65 years or over in England with identical sampling strategies (CFAS I response 81.7%, N = 7,635; CFAS II response 54.7%, N = 7,762). CFAS I baseline interviews were conducted in 1991 to 1993 and CFAS II baseline interviews in 2008 to 2011, both with 2 years of follow-up. Disability was measured using the modified Townsend activities of daily living scale. Long-term conditions (LTCs-arthritis, cognitive impairment, coronary heart disease (CHD), diabetes, hearing difficulties, peripheral vascular disease (PVD), respiratory difficulties, stroke, and vision impairment) were self-reported. Multistate models estimated life expectancy (LE) and DFLE, stratified by sex and study and adjusted for age. DFLE was estimated from the transitions between disability-free and disability states at the baseline and 2-year follow-up interviews, and LE was estimated from mortality transitions up to 4.5 years after baseline. In CFAS I, 60.8% were women and average age was 75.6 years; in CFAS II, 56.1% were women and average age was 76.4 years. Cognitive impairment was the only LTC whose prevalence decreased over time (odds ratio: 0.6, 95% confidence interval (CI): 0.5 to 0.6, p < 0.001), and where the percentage of remaining years at age 65 years spent disability-free decreased for men (difference CFAS II-CFAS I: -3.6%, 95% CI: -8.2 to 1.0, p = 0.12) and women (difference CFAS II-CFAS I: -3.9%, 95% CI: -7.6 to 0.0, p = 0.04) with the LTC. For men and women with any other LTC, DFLE improved or remained similar. For women with CHD, years with disability decreased (-0.8 years, 95% CI: -3.1 to 1.6, p = 0.50) and DFLE increased (2.7 years, 95% CI: 0.7 to 4.7, p = 0.008), stemming from a reduction in the risk of incident disability (relative risk ratio: 0.6, 95% CI: 0.4 to 0.8, p = 0.004). The main limitations of the study were the self-report of health conditions and the response rate. However, inverse probability weights for baseline nonresponse and longitudinal attrition were used to ensure population representativeness. CONCLUSIONS: In this study, we observed improvements to DFLE between 1991 and 2011 despite the presence of most health conditions we considered. Attention needs to be paid to support and care for people with cognitive impairment who had different outcomes to those with physical health conditions.

The impact of long-term conditions on disability-free life expectancy: A systematic review.

Although leading causes of death are regularly reported, there is disagreement on which long-term conditions (LTCs) reduce disability-free life expectancy (DFLE) the most. We aimed to estimate increases in DFLE associated with elimination of a range of LTCs. This is a comprehensive systematic review and meta-analysis of studies assessing the effects of LTCs on health expectancy (HE). MEDLINE, Embase, HMIC, Science Citation Index, and Social Science Citation Index were systematically searched for studies published in English from July 2007 to July 2020 with updated searches from inception to April 8, 2021. LTCs considered included: arthritis, diabetes, cardiovascular disease including stroke and peripheral vascular disease, respiratory disease, visual and hearing impairment, dementia, cognitive impairment, depression, cancer, and comorbidity. Studies were included if they estimated HE outcomes (disability-free, active or healthy life expectancy) at age 50 or older for individuals with and without the LTC. Study selection and quality assessment were undertaken by teams of independent reviewers. Meta-analysis was feasible if three or more studies assessed the impact of the same LTC on the same HE at the same age using comparable methods, with narrative syntheses for the remaining studies. Studies reporting Years of Life Lost (YLL), Years of Life with Disability (YLD) and Disability Adjusted Life Years (DALYs = YLL+YLD) were included but reported separately as incomparable with other HE outcomes (PROSPERO registration: CRD42020196049). Searches returned 6072 unique records, yielding 404 eligible for full text retrieval from which 30 DFLE-related and 7 DALY-related were eligible for inclusion. Thirteen studies reported a single condition, and 17 studies reported on more than one condition (two to nine LTCs). Only seven studies examined the impact of comorbidities. Random effects meta-analyses were feasible for a subgroup of studies examining diabetes (four studies) or respiratory diseases (three studies) on DFLE. From pooled results, individuals at age 65 without diabetes gain on average 2.28 years disability-free compared to those with diabetes (95% CI: 0.57-3.99, p<0.01, I2 = 96.7%), whilst individuals without respiratory diseases gain on average 1.47 years compared to those with respiratory diseases (95% CI: 0.77-2.17, p<0.01, I2 = 79.8%). Eliminating diabetes, stroke, hypertension or arthritis would result in compression of disability. Of the seven longitudinal studies assessing the impact of multiple LTCs, three found that stroke had the greatest effect on DFLE for both genders. This study is the first to systematically quantify the impact of LTCs on both HE and LE at a global level, to assess potential compression of disability. Diabetes, stroke, hypertension and arthritis had a greater effect on DFLE than LE and so elimination would result in compression of disability. Guidelines for reporting HE outcomes would assist data synthesis in the future, which would in turn aid public health policy.

The contribution of multiple long-term conditions to widening inequalities in disability-free life expectancy over two decades: Longitudinal analysis of two cohorts using the Cognitive Function and Ageing Studies.

BACKGROUND: : Disability-free life expectancy (DFLE) inequalities by socioeconomic deprivation are widening, alongside rising prevalence of multiple long-term conditions (MLTCs). We use longitudinal data to assess whether MLTCs contribute to the widening DFLE inequalities by socioeconomic deprivation. METHODS: : The Cognitive Function and Ageing Studies (CFAS I and II) are large population-based studies of those ≥65 years, conducted in three areas in England. Baseline occurred in 1991 (CFAS I, n=7635) and 2011 (CFAS II, n=7762) with two-year follow-up. We defined disability as difficulty in activities of daily living, MLTCs as the presence of at least two of nine health conditions, and socioeconomic deprivation by area-level deprivation tertiles. DFLE and transitions between disability states and death were estimated from multistate models. FINDINGS: : For people with MLTCs, inequalities in DFLE at age 65 between the most and least affluent widened to around 2.5 years (men:2.4 years, 95% confidence interval (95%CI) 0.4-4.4; women:2.6 years, 95%CI 0.7-4.5) by 2011. Incident disability reduced for the most affluent women (Relative Risk Ratio (RRR):0.6, 95%CI 0.4-0.9), and mortality with disability reduced for least affluent men (RRR:0.6, 95%CI 0.5-0.8). MLTCs prevalence increased only for least affluent men (1991: 58.8%, 2011: 66.9%) and women (1991: 60.9%, 2011: 69.1%). However, DFLE inequalities were as large in people without MLTCs (men:2.4 years, 95%CI 0.3-4.5; women:3.1 years, 95% CI 0.8-5.4). INTERPRETATION: : Widening DFLE inequalities were not solely due to MLTCs. Reduced disability incidence with MLTCs is possible but was only achieved in the most affluent.

Healthy ageing for all? Comparisons of socioeconomic inequalities in health expectancies over two decades in the Cognitive Function and Ageing Studies I and II.

BACKGROUND: Despite increasing life expectancy (LE), cross-sectional data show widening inequalities in disability-free LE (DFLE) by socioeconomic status (SES) in many countries. We use longitudinal data to better understand trends in DFLE and years independent (IndLE) by SES, and how underlying transitions contribute. METHODS: The Cognitive Function and Ageing Studies (CFAS I and II) are large population-based studies of those aged ≥65 years in three English centres (Newcastle, Nottingham, Cambridgeshire), with baseline around 1991 (CFAS I, n = 7635) and 2011 (CFAS II, n = 7762) and 2-year follow-up. We defined disability as difficulty in activities of daily living (ADL), dependency by combining ADLs and cognition reflecting care required, and SES by area-level deprivation. Transitions between disability or dependency states and death were estimated from multistate models. RESULTS: Between 1991 and 2011, gains in DFLE at age 65 were greatest for the most advantaged men and women [men: 4.7 years, 95% confidence interval (95% CI) 3.3-6.2; women: 2.8 years, 95% CI 1.3-4.3]. Gains were due to the most advantaged women having a reduced risk of incident disability [relative risk ratio (RRR):0.7, 95% CI 0.5-0.8], whereas the most advantaged men had a greater likelihood of recovery (RRR: 1.8, 95% CI 1.0-3.2) and reduced disability-free mortality risk (RRR: 0.4, 95% CI 0.3-0.6]. Risk of death from disability decreased for least advantaged men (RRR: 0.7, 95% CI 0.6-0.9); least advantaged women showed little improvement in transitions. IndLE patterns across time were similar. CONCLUSIONS: Prevention should target the most disadvantaged areas, to narrow inequalities, with clear indication from the most advantaged that reduction in poor transitions is achievable.

The impact of dementia on service use by individuals with a comorbid health condition: a comparison of two cross-sectional analyses conducted approximately 10 years apart.

BACKGROUND: The presence of concomitant medical conditions in people with dementia is common. Dementia may be related to differential use of health, social and informal care. METHODS: Data from two large UK population-based studies (CFAS I & II) of adults aged 65 years and older were analysed using logistic regression for binary outcomes and Poisson regression for count outcomes to look at differences in non-dementia service use by those with dementia and a health condition in comparison to those with the health condition alone. RESULTS: A total of 1619 individuals from CFAS I and 3805 individuals from CFAS II over the age of 75 years were included in this analysis. The presence of dementia and either stroke, diabetes or visual impairment tended to increase the likelihood of a range of different services being used over having any of the health conditions alone. There has been a shift to the use of unpaid care over time. There is now increased use of unpaid care from friends and family by those with dementia and another health condition in comparison to the health condition alone. CONCLUSIONS: Either due to the decrease in care home spaces or affordability, people with dementia are now relying on unpaid care more than people with other long-term health conditions.