All posts by casp19

Informal caregiving and quality of life in Sweden: the effect of care intensity and burden in longitudinal analyses

Following retirement many people have more time to spend for personal achievement and fulfilment, during the period of life referred to as the Third age. Some older adults may instead need to spend increasing amounts of time and energy providing unpaid informal care. Informal care is defined as the unpaid provision of support to someone who is ill or disabled, from the intimate environment of the home. Providing informal care can be a rewarding and self-esteem enhancing role. However, as an inflexible and unplanned activity it can also become time consuming and emotionally demanding, as caregivers often need to dedicate substantial time to care activities. The emotional labour of caregiving for a close friend or family member can impinge on quality of life, as caregivers not only “care for” but also “care about” those they care for.

Due to population ageing, the need for long-term care is expected to rise. Older adults, who are already more likely to provide informal care, will be most affected. In addition, “ageing in place” policies and reductions in formal long-term care services are contributing to increased rates of informal caregiving, even in Sweden, traditionally viewed as having a universal formal long-term care model. As informal care becomes more prevalent, it is important to understand the impact of this activity on caregivers’ wellbeing.

Previous research suggests that the impact of caregiving on quality of life may depend on the specific context, as caregivers’ experiences are diverse. Aspects of the care situation influence whether providing care is experienced as an enhancing role or a stressful one. For instance, providing care in a non-intensive way (e.g., few hours per week) may strengthen social ties, while more intensive caregiving may generate scheduling conflicts and exhaustion.

In our recently published study, we showed that informal caregiving negatively affects quality of life among older adults (age 50–74), in different ways according to care intensities and perceived burden. We studied participants in the 2008–2018 Swedish Longitudinal Occupational Survey of Health (SLOSH). We used the CASP-19 scale, a multidimensional measure of quality of life, to evaluate both negative as well as any potentially positive impacts of informal care provision.

Figure 1 (top section) shows that informal care was associated with lower quality of life. The more hours of care provided, the higher the reduction in quality of life (figure 1, middle section). Caregiving for at least 10 hours weekly significantly lowered quality of life, while providing less than this was associated with smaller reductions or no reductions at all. Similarly, when caregivers experienced burden, the reduction in quality of life was aggravated (bottom section of figure 1).

Figure 1 – Caregiving & quality of life: the more hours and the higher burden, the worse the quality of life

β coefficients with 95% confidence intervals indicate average differences in quality of life score (CASP-19 scale). Fixed effects models adjusted for sociodemographics and health.

Figure 2 shows that taking-up, ceasing care provision or caregiving continuously over a two-year period was associated with lower quality of life compared to not providing any informal care in the same period (Figure 2). This effect was even more evident when informal care consisted of at least 10 or more hours weekly or respondents reported it to be burdensome.

Figure 2 – Caregiving changes from one wave to the next and quality of life at the second wave

β coefficients with 95% confidence intervals indicate average difference in quality of life (CASP-19 scale) according to changes in informal caregiving over consecutive time-points of the study. Random effects models adjusted for sociodemographics and health.

Finally, over a two year-period, those taking-up caregiving experienced a negative change in quality of life, while those ceasing a positive one (figure 3). Bringing together the results from figures 2 and 3, findings indicate that while cessation of informal care brought some relief to caregivers, those who ceased caregiving nevertheless had lower quality of life than those who did not provide informal care.

Figure 3 – Caregiving and quality of life changes from one wave to the next (change on change)

β coefficients with 95% confidence intervals indicate average differences in change of quality of life score (CASP-19 scale) First-differenced models adjusted for sociodemographics and health.

While the findings for some caregivers are stark, the silver lining is that those providing less than 10 hours of care weekly are minimally or not at all affected. Although providing informal care is a very common experience (33% of respondents provided informal care at some point during the study), far fewer respondents provided the type of care that is significantly associated with a lower quality of life: 11% in our sample provided 10 or more weekly hours of care at least once; 17% provided sometimes or often burdensome care.

Women were overrepresented among those providing more intensive care. Women in our sample were more likely to provide informal care than men (58% vs 42%), as well as being much more likely to provide more intense (64% of those caregiving at least 50 weekly hours) and burdensome care. Therefore, reductions of formal care may widen gender inequalities in quality of life among older adults.

Overall, our study with a within-participant design provides robust evidence indicating that informal caregiving lowers quality of life. The effect is exacerbated when providing more weekly hours of care. The approach used allowed us to rule out alternative explanations related to stable individual differences between caregivers and non-caregivers. Policies and interventions that support informal caregivers by reducing the burden and intensity (e.g. fewer hours) of care, may bolster quality of life in this at-risk group. This would also potentially address gender inequalities, given that women overwhelmingly made up the high-risk caregiver groups.

Sacco, L. B., König, S., Westerlund, · Hugo, Platts, L. G. & Sacco, L. B. Informal Caregiving and Quality of Life Among Older Adults: Prospective Analyses from the Swedish Longitudinal Occupational Survey of Health (SLOSH). Soc Indic Res 1–22 (2020). doi:10.1007/s11205-020-02473-x


Driving is associated with higher levels of social participation and better mental health and well-being than travelling as a passenger or by public transport

Driving allows a level of freedom and independence that is often not available with public transport and therefore it is hugely important for social engagement and social participation, both of which lead to improved physical and mental health and wellbeing. However, most of the existing research examines different modes of transport, access to a car or driving cessation on social participation and social wellbeing with little focus on the person who provides the transport. We hypothesised that individuals who drive themselves or are driven by spouses, rather than family or friends, have higher levels of social participation and better psychosocial wellbeing.

In a study published in Transportation Research Part F: Traffic Psychology and Behaviour in July 2019, we used interview data collected in 2009-2011 from 8,092 community-dwelling participants (50 years and older) in The Irish Longitudinal Study on Ageing (TILDA), a nationally representative cohort study. Most frequent mode of transport was categorised as car (driver), car (driven by spouse/partner), car (driven by family/friends/taxi) or public transport (bus/train). We used regression analysis to examine associations of transport mode and current driving status with social network strength (Berkman Syme Index), monthly involvement in active social leisure activities and volunteering, depressive symptoms (CES-D), loneliness (UCLA Loneliness scale) and quality of life (CASP-19).

Most adults aged 50 and over in Ireland drive most frequently themselves (72.2%) with 11.7% and 5.9% relying on lifts from family/friends/taxi and a spouse/partner respectively. Public transport use varies widely by location from 1.9% in rural areas to 23.3% in Dublin. Driving, being driven by a partner/spouse and taking public transport are associated with greater social networks, higher levels of social participation, lower depressive symptoms and better quality of life, compared to being driven by family, friends or taking taxis, with the greatest benefits observed for drivers. Adults who have reduced their levels of driving and particularly, non-drivers or those who have stopped driving report fewer social networks, lower social participation, higher depressive symptoms and loneliness and lower quality of life, compared to current drivers.

Ideally, older adults would be supported to drive for as long as it is safe for them to do so and for as long as they would like to do so. However, many people drive less frequently or stop driving as they get older, and this can be a huge upheaval especially if this change is not by choice. Early planning and the availability of suitable alternative means of transport are vital to facilitate this transition from driving to not driving. Family and friends play a hugely important role in providing transport for older adults allowing them to complete many daily activities and to maintain their social networks. However, some older adults are reluctant to ask others for lifts so they prioritise the ‘essential’ trips such as grocery shopping or healthcare visits rather than the discretionary or social trips, which are also very important for mental health and quality of life. As the population ages, there is an increasing need for improved transport networks and the provision of local amenities and services that meet the specific needs of older adults, allowing them to maintain their independence and social activities.

TILDA is funded by The Atlantic Philanthropies, the Department of Health and Irish Life plc.

Guest blog by Dr Orna Donoghue, The Irish Longitudinal Study on Ageing (TILDA), Trinity College Dublin, Ireland.

Donoghue OA, McGarrigle CA, Kenny RA. (2019) Who’s in the driver’s seat? Impact on social participation and psychosocial wellbeing in adults aged 50 and over. Transportation Research Part F: Traffic Psychology and Behaviour, 64: 522-531.

Visual impairment, discrimination, and emotional well-being in later life

Visual impairment affects an estimated 2 million people in the United Kingdom, with one in ten people over the age of 65 reporting some sight loss. This can have a profound impact on quality of life, not only because people with visual impairment commonly experience difficulties carrying out everyday activities, but also because they are more likely to encounter discrimination.

In a study published in JAMA Ophthalmology in May 2019, we used survey data collected from more than 7,000 older adults (50 years or older) in England to examine how prevalent perceived discrimination is among older people with visual impairment and to what extent it is associated with emotional well-being.

The surveys took place in 2010/11 and 2016/17. Respondents were classed as experiencing discrimination if they reported one of four experiences in the past year: being treated with less respect or courtesy, receiving poorer service than others at hotels or restaurants, people acting as if they think they are not clever, and being threatened or harassed. They were also counted as experiencing discrimination if they reported ever having received poorer treatment or service than other people from doctors or in hospitals.

We found that people who rated their eyesight as “poor”, even while wearing glasses or contact lenses, were 40% more likely to report being discriminated against than people who classed their vision as good.

In absolute terms, just over half of older adults with poor vision reported experiences of discrimination. These adults were twice as likely to report loneliness and depressive symptoms and were also much more likely to report a lower quality of life (measured by the CASP-19) and lower life satisfaction than peers with poor eyesight who did not experience discrimination.

Our results suggest that discrimination may be an important contributor to the lower levels of wellbeing among people with poor eyesight. In addition to addressing the injustice of unfair treatment, tackling the issue of discrimination against people with poor vision could also have substantial benefits for their mental health and wellbeing.

Guest blog by Dr Sarah Jackson, UCL Tobacco and Alcohol Research Group, University College London

Jackson SE, Hackett RA, Pardhan S, Smith L, Steptoe A. Association of Perceived Discrimination with Emotional Well-being in Older Adults with Visual Impairment. JAMA Ophthalmol. Published online May 30, 2019137(7):825–832. doi:10.1001/jamaophthalmol.2019.1230

A randomised trial of domiciliary welfare rights advice in independent-living, socio-economically disadvantaged people aged ≥60 years

Older people, particularly if in poor health, may be in need of extra income, or support in the form of aids or adaptions. There are state benefits which can be claimed in the UK, but not everyone is aware of them, or capable of making a successful claim. Welfare rights advisers (WRA) can give active assistance with such claims. Given the known association between socio-economic factors and health, it’s plausible that any extra welfare benefits received could impact on health and well-being.

A clinical trial was designed to investigate the effect of welfare rights advice delivered in the homes of people aged ≥60 years living in socio-economically disadvantaged areas of the North East England. Participants were randomised to immediate welfare advice, or waiting for 24-months. Follow-up over 24 months was a trade-off between sufficient time to demonstrate any health impact against the ethical need to allow the control group to access advice as early as possible. It was important to choose a primary outcome that would encapsulate the potential benefits of the advice. Interviews with participants in the pilot trial about perceived benefits had identified the importance of concepts such as ‘piece of mind’, ‘maintaining independence’, and ‘participation in social life’. So, given we were dealing with older people we decided to use the CASP-19. When calculating the sample size of a trial you need to specify what would be the smallest difference in the outcome that would be of clinical importance. This had not been established for CASP-19, but analysis of data from English Longitudinal Study of Ageing suggested that a difference of 1.5 units would be appropriate. Secondary outcomes in our trial were measures of changes in income, social and physical function and cost-effectiveness. There was also an embedded qualitative study.

The results were published recently. 3912 older people were identified from general practice records and invited to take part in the trial: 755 consented and were randomised (381 Intervention and 374 Control), and data was available at 24 months on 562 (74%) of them .The welfare advice was received by 335 (88%) in the intervention arm, but only 84 (22%) were awarded additional benefit entitlements which were predominantly financial.  The mean CASP-19 scores at 24 months were 42.9 in the intervention arm, and 42.4 in the control arm (adjusted mean difference 0.3, 95%CI -0.8 to 1.5). There were no significant differences in secondary outcomes except Intervention participants reported receiving more care at home (53.7 vs 42.0 hours/week, adjusted mean difference 26.3, 95%CI 0.8 to 56.1). Exploratory analyses did not support an intervention effect and economic evaluation suggested the intervention was unlikely to be cost-effective. However, qualitative data from 50 interviews suggested there were improvements in quality of life among those receiving additional benefits.

We found no difference in average health outcomes, but participants were more affluent than expected, and fewer participants than anticipated received extra benefit entitlements. Our findings don’t support the delivery of domiciliary welfare rights advice to achieve the health outcomes assessed in this population. However, better intervention targeting could reveal worthwhile health impacts.

Guest blog by Denise Howel, Newcastle University, UK.

Find out more about the Do-Well Study at


Early-life socioeconomic circumstances explain quality of life differences in old age, but not their evolution over ageing

Hedonic and eudemonic well-being

Quality of life is an umbrella term that includes desirable outcomes such as well-being, both in its objective and its subjective dimensions. Objective appraisal is usually measured with indicators such as income, education, health, living area, etc. When entering into the subjective appraisal of well-being, there are two main approaches, namely the hedonic and the eudaimonic ones. Most of the followers of the former type of tradition agree with the steps suggested by Jeremy Bentham and care about “feeling good” whereas the followers of the latter usually tap into the heritage of Aristotle and aim for a “good life”, or the realization of the self. There are multiple measures for both approaches. Life satisfaction measured on a 0-10 scale gathers a wide consensus to measure hedonic well-being whereas eudaimonic measures are much more numerous and scattered. This is partly due to the inherent complexity of the construct and its multidimensionality (autonomy, self-acceptance, environmental mastery, life purpose…). Among the scales developed to assess eudaimonic well-being, one can cite Psychological Well-being (PWB) Scale or the Subjective vitality scale. A scale entitled CASP[1] 19 was used to assess both the eudaimonic and hedonic dimensions of well-being. Moreover, unlike the other scales that are mainly used in the general population, CASP is specifically adapted to assess well-being in the elderly population.

Figure 1. Diagram of the objective and subjective dimensions and measures of quality of life

Early-life socioeconomic circumstances as a predictor of quality of life

The origins of poor quality of life may stem from early-life risk factors, such early-life socioeconomic circumstances (SEC). Studies consistently showed that individuals who experienced poor SEC during childhood had lower levels of health functioning in older age, including physical, mental and social dimensions of health. The picture is blurrier as far as well-being is concerned. Some studies suggest that early-life SEC, social mobility, as well as other measures of opportunity (gender, ethnicity) affect the hedonic well-being of adults, whereas others studies revealed no or small effects.

Various factors may explain previous inconsistencies in the literature. First, studies mainly rely on a unidimensional measure of early-life SEC (for example, focused only on father’s occupational position) or combined different dimensions of early-life SEC into a single score (for example, mixed together material and cultural aspects of socioeconomic disadvantage). Second, very few studies have assessed whether the associations between early-life SEC and well-being are independent from other early-life events likely to co-occur, such as adverse childhood experiences or childhood health problems. Third, when the data were longitudinal, the statistical approach used was not particularly suited to accurately estimate change over ageing.

Therefore, to fill this knowledge gap, the current study aims to determine whether individuals who experienced poor early-life SEC showed lower level of well-being in older age and a steeper rate of well-being decline over ageing.

We used data on more than 23,000 adults in older age from the survey of health, Ageing, and Retirement in Europe (SHARE), a 12-year large-scale longitudinal study with repeated measurement of health indicators of the same participants over time (2004-2015, assessments every 2 years). Number of books at home (0-10 vs. more books at home), overcrowding (more vs. less than one person per room in the household), occupational position of the household’s main breadwinner (first and second vs. higher skills levels of the International Standard Classification of Occupations), and housing quality (absence vs. presence of either fixed bath, cold running water supply, hot running water supply, inside toilet, or central heating) were used as indicators of early-life SEC. A short version (12 items) of the CASP-19 scale was used to assess well-being.

Figure 2. The four dimensions of early-life socioeconomic circumstances

Number of books at home during childhood and well-being

Our results showed that early-life SEC were associated with the level of well-being in both men and women. Specifically, in men, a low number of books at home, a low occupational position of the main breadwinner, and a low housing quality were associated with a lower level of well-being. In women, only a low number of books at home was associated with well-being. The critical role of number for books was confirmed by results obtained from other health-related outcomes (muscle strength, peak expiratory flow, delayed recall, verbal fluency, and depression) showing that this cultural aspect of disadvantage has a wide influence that affect all the dimensions of health. By contrast, our results showed that men and women living in poor early-life SEC (all these indicators) did not experienced stepper decline rate of well-being decline over ageing.

From this study, we can conclude that early-life SEC, especially a cultural aspect of disadvantage (i.e., the numbers of book at home), are associated with the level of well-being in both men and women. Theoretically, this result provides support for the long-lasting influence of early-life SEC on health in older age. By contrast, we did not find evidence of the contribution of these early-life exposures to differences in trajectories of well-being over ageing.  Such inconsistency (between level and trajectories) could contribute to shedding light on other critical predictors of healthy ageing trajectories.

Guest blog by Cheval Boris, Gaël Brulé and Stéphane Cullati.

Cheval, B., Orsholits, D., Sieber, S., Stringhini, S., Courvoisier, D., Kliegel, M., Boisgontier, M.P. and Cullati, S., 2019. Early-life socioeconomic circumstances explain health differences in old age, but not their evolution over time. J Epidemiol Community Health, pp.jech-2019.

[1] Control, Autonomy, and Self-realization

The impact of a cancer diagnosis on health and wellbeing

People with cancer are living longer than ever before. Developments in the detection and treatment of cancer mean that half of people diagnosed with cancer in the UK survive for at least 10 years after the point of diagnosis. As such, there is now a growing emphasis not only on prolonging life, but enhancing quality of life for these patients.

Emerging evidence suggests that cancer survivors may suffer impairments in health and wellbeing that pre-date their cancer diagnosis by several years. In one of the first studies to include pre-diagnostic data in analyses of changes in health and wellbeing around the time of a cancer diagnosis, we observed differences in self-rated health, physical function, quality of life, and psychological wellbeing between cancer cases and controls at all examined time points – including up to 2 years before the cancer was diagnosed. This finding begs the question: How far in advance of a cancer diagnosis do impairments in health and wellbeing become evident?

Using prospective data from a large, population-based cohort, we examined changes in a range of health and wellbeing outcomes at two-year intervals from 4-6 years pre-cancer diagnosis to 0-2 years post-diagnosis. We included data from a cancer-free comparison group to distinguish changes in cancer survivors from those occurring in the general population.

Our results indicate that there may be early signs of deterioration in perceptions of health that precede the development of symptoms leading to diagnosis by many years; potential targets for new thinking about cancer awareness and early diagnosis. Some deficits (e.g. relating to mobility and disability) may be of long standing, evident up to six years prior to diagnosis. Other changes (e.g. in depression and quality of life) appear to be more acute in nature and may require targeted support around the point of diagnosis.

Focusing in on quality of life (Figure 1), operationalised as total CASP-19 score, it is clear to see that while scores were almost identical in both groups at 2-4 and 0-2 years pre-diagnosis, from 0-2 years pre-diagnosis to 0-2 years post-diagnosis, mean quality of life decline in the cancer survivor group and increased slightly in the comparison group.

Figure 1_Quality of life by group and time

Figure 1. Quality of life by group and time. The mean quality life score (with 95% confidence intervals) for each group at each time point (adjusted for age, sex, wealth, and diagnosis wave) is shown. ** P < 0.01 for the difference between the cancer survivor group and comparison group.

 These findings have important implications for clinical practice. Health problems that predate the cancer diagnosis by a number of years may contribute to the onset of cancer or share a common aetiology. With potentially modifiable risk factors such as obesity, physical activity, diet, smoking, and alcohol intake among the leading causes of cancer death, health promotion and behaviour change interventions at the general-population level continue to be of critical importance.

More acute changes in depression and quality of life that take place around the time of diagnosis are likely a reaction to the stressful nature of cancer diagnosis and treatment. This highlights a need to ensure cancer patients are screened for these risk factors at diagnosis and have access to psychological support. With evidence relating psychosocial stress to adverse changes in the cellular immune response at the tumor level, which may lead to faster disease progression, initiatives aimed at reducing stress and enhancing quality of life may even offer significant benefits in terms of disease course.

The next steps for advancing this research are to establish whether similar trends are observed in patient subgroups, such as men and women, those from higher versus lower SES levels, those affected by cancer at various sites/organs, and those diagnosed at different stages.

Guest blog post by Dr Sarah E. Jackson, Department of Behavioural Science and Health, University College London.

This article is based on:

Jackson SE, Williams K, Beeken RJ, Steptoe A. Changes in health and wellbeing in the years leading up to a cancer diagnosis: a prospective cohort study. Cancer Prevention Research. 2019; 12(2): 79-87. DOI: 10.1158/1940-6207.CAPR-18-0277

Long-term trajectories of depressive symptoms in old age: relationships with sociodemographic and health-related factors

Depression is more than feeling blue and transitorily losing the capacity to experience pleasure. Depression syndromes are highly prevalent in later life, and last longer than in other periods of life. Almost one in three older people may show clinical levels of depressive symptoms in the UK. Clinically relevant depression symptom episodes in old age are related to devastating consequences (e.g., increased risk of mortality, higher disability, reduced quality of life), even from earliest stages (e.g., subclinical conditions). Little is known about the relationship between symptom course and health-related outcomes. The search for person-specific symptom trajectories may help identify at-risk profiles, thus uncovering potential targets for treatment.

Many factors deserve consideration when depression course being studied. Sex constitutes a biological condition highly connected with depression symptom manifestation. Why do women fall into depression more frequently than men? Probably this is due to sexually-mediated biological processes (e.g., estradiol releasing patterns) and social influence that may put women at higher risk for developing depression problems. Moreover, women often show more heightened courses of depression symptoms over time. Unfortunately, little is known about the sex-specific trajectories of depression symptoms and their related impact on daily living, health and quality of life.

This study aimed at depicting the longitudinal trajectories of depression symptoms in older men and women, with a special interest in identifying heterogeneous trajectories of symptoms. Moreover, we intended to uncover the sociodemographic and health-related profile that featured each symptom trajectory. Finally, we were interested in examining how symptom trajectories may predict health-related outcomes two years later (i.e., quality of life, satisfaction with life and daily living functioning).

To do so, we used data from the English Longitudinal Study of Ageing (ELSA). The ELSA constitutes an excellent cohort study on ageing, relied on surveying British older adults every two years since 2002. The study aims at collecting information across multiple domains (socioeconomic, environmental, health-related, etc.). More concretely, data from 8317 older adults (46.02% men), aged between 65-90 years, were used in our study. None of these participants showed dementia diagnosis and responded by themselves the ELSA survey across waves.

Depressive symptoms were assessed over an 8-year follow-up (from 2002-2010, across five waves), by means of the Center for Epidemiologic Studies Depression Scale, 8-item version (CES-D 8). Moreover, information on time-varying (self-reported health across waves, amount of morbid conditions, feelings of loneliness, sensory function course) and time invariant depression concomitants (education level, household income, history of psychiatric problems in adulthood and age of retirement) were collected.

The identification of sex-specific symptom trajectories relied on robust structural equation modelling. Also, the relationships between symptom trajectory membership and concomitants were examined. Finally, generalised linear regression was used to examine how symptom trajectory membership may predict health-related outcomes at wave 6 (2012). The CASP-19 (the composite score) was used to measure quality of life. The instrument works quite well in old population and shows adequate psychometric properties. More concretely, we found satisfactory reliability levels within our sample (Cronbach’s α = .89).

As a result, we uncovered three heterogeneous trajectories of depression symptoms in men and women. For both sexes, we identified a low-symptom trajectory class (covering more than 77% of men and 68% of women, respectively), with minimal symptom levels over time; a subclinical-symptom trajectory (over 17% of men and 21% of women, respectively), featured by increasing levels of symptoms, that surpassed the cut-off point of clinical meaningfulness over time; and a chronic-symptom trajectory (6% of men and 11% of women), featured by heightened levels of symptoms over time. Sex-related differences were revealed in terms of higher proportion of women showing subclinical and chronic-symptom trajectories in comparison to men. For both sexes, the chronic-symptom trajectory was associated with increasing course of hearing difficulties and the history of psychiatric problems. The subclinical-symptom trajectory was featured by a higher increase in visual difficulties over time. Also, some sex-specific relationships were found: higher amount of morbid conditions in women with subclinical-symptom trajectory; and higher multimorbidity and loneliness feelings in men with chronic-symptom trajectory.

Finally, trajectory class predicted the health-related outcomes in the follow-up. More concretely, individuals with a chronic-symptom trajectory showed the lowest levels of quality of life and satisfaction with life, and the highest levels of disability. Surprisingly, individuals showing a subclinical-symptom trajectory also manifested poorer health-related outcomes than individuals in the normative trajectory class.

Our study constitutes a flexible, but robust approach to study depression symptom dynamics over time and its concomitants. We aimed at providing some evidence to raise awareness of personalised medicine (by means of identifying person-specific trajectories) and its usefulness in geriatric sciences. Moreover, we would like to highlight that depression should be tackled even from its earliest states (subclinical symptom trajectories also showed decreased quality of life) in order to tackle its devastating impact.

Manuscript published in: De la Torre-luque A, De la Fuente J, Prina M, Sanchez-Niubo A, Haro JM, Ayuso-Mateos JL. Long-term trajectories of depressive symptoms in old age: Relationships with sociodemographic and health-related factors. J Affect Disord. 2019;246(November 2018):329-337. doi:10.1016/j.jad.2018.12.122

Guest blog by Alejandro de la Torre Luque, Centre for Biomedical Research in Mental Health (CIBERSAM), Department of Psychiatry. Universidad Autonoma de Madrid, Spain:

Providing care to ageing parents: Is it damaging for quality of life?

Next to spouses and partners, adult children are the most important source of support for older persons in need of care. When adult children take on the caregiver role, this may not be without negative consequences, however. In a recent study published in Ageing and Society, Emily Grundy and I used the short version of the CASP-scale to examine how adult children’s quality of life changes when they start providing informal care to ageing parents.

The team that designed the CASP-scale defined quality of life as “the degree to which human needs are satisfied”. They argued that to achieve quality of life there were four key domains of need to be satisfied: control, autonomy, self-realization and pleasure. It is important to note that caregiving can bring positive things for the person providing it, such as learning new skills or a heightened sense of purpose. Nevertheless, we expected the overall impact of caregiving on quality of life to be negative, because the caregiver-stress model developed by Leonard Pearlin and colleagues suggests that caregiving can be detrimental for all of the four domains of quality of life.

Particularly when the needs of person care for are high, caregiving may diminish one’s sense of mastery, that is, the perceived control over forces that influence one’s life.

Moreover, caregivers may experience role captivity, that is, the feeling of being in the caregiving role involuntarily. This experience is at odds with a sense of autonomy.

Furthermore, caregiving may be a barrier for self-realization, given that Pearlin and colleagues explain that the identity and the life of a caregiver often becomes closely bound to those of the person cared for. For the caregiver, this may result in loss of self. The stress that results both directly and indirectly from caregiving can impede the pleasure experienced by persons providing care.

The caregiver stress model also stresses the importance of the context in which care is provided. When governments make care services more easily accessible, adult children of older people in need of care are less strongly pushed in caregiving role and they may escape the vicissitudes associated with caregiving. In our study we focused on two countries where coverage of long-term care services was traditionally extensive: Denmark and Sweden. However, cutbacks were implemented at the end of the 20th century in Sweden and more recently in Denmark.

We analyzed data from the Survey of Health, Ageing and Retirement in Europe collected between 2004 and 2015. Given that the coverage of long-term care services was more generous in Denmark and in Sweden for most of the period studied, we expected caregiving to be more detrimental for quality of life in the latter than in the former country. In line with these expectations, we noted a quality of life decline in Swedish, but not Danish, adult children when they became caregivers. Also as expected, the country difference in the detrimental effect of caregiving became smaller when further long-term care cutbacks took place in Denmark, but not in Sweden. These results strongly suggest that the extent to which providing informal care is harmful for quality of life depends on the way long-term care is organized in the country where the informal caregiver lives.

Guest blog post by Dr. Thijs van den Broek, Erasmus School of Health Policy & Management, Erasmus University Rotterdam, The Netherlands

Van den Broek, T. & Grundy, E. (2018). Does long-term care coverage shape the impact of informal care-giving on quality of life? A difference-in-difference approach. Ageing & Society.

The research leading to these results has received funding from the European Research Council under the European Union’s Seventh Framework Programme (FP7/2007–2013)/ ERC grant agreement n° 324055.


Quality of life associated with handgrip strength and sarcopenia in Brazil

Geriatric syndromes, such as sarcopenia (the joint reduction of strength and muscle mass), although frequent in the population, can be prevented or delayed onset which can promote active and healthy aging. The study aims to verify the association between handgrip strength (HGS), sarcopenia, sarcopenic obesity and quality of life (QoL) in older adults from a major city of southern Brazil.

This study is part of a longitudinal, population-based and home-based epidemiological survey, EpiFloripa Aging, conducted with individuals aged 60 years or older from Florianópolis, Santa Catarina State, Brazil, in 2013/14. Multiple linear regression was performed to estimate the associations of handgrip strength (HGS – verified by mechanical dynamometer), sarcopenia (appendicular skeletal muscle mass by DXA /body weight <2 standard deviations below gender-specific means of young adults), sarcopenic obesity (obesity by percentage of body fat + sarcopenia), and the outcome of quality of life (CASP-16 Brazil), adjusted by age, family income, leisure and transportation physical activity, functional dependence, cognitive deficit and depressive symptoms.

Of the 1,197 of EpiFloripa follow-up, 604 older adults attended the laboratory, image and functional physical examination, and 584 underwent evaluation of body composition and HGS.  Considering the range of QoL score, from 0 to 48, the mean score was 38.2 (±7.2) and 39.3 (±6.5), respectively, for females and males.

Woman had a mean HGS of 17.9 kgf (±5.5), a prevalence of 6.6% (95%CI:3.9;10.8) of sarcopenia and 1.8% (95%CI: 0.9;3.3) of sarcopenic obesity. Among man HGS mean was 29.5 kgf (±8.5), 9.8% (95%CI:  5.6;16.6) presented sarcopenia and 14.2% (95%CI: 8.8;22.1) sarcopenic obesity.

Despite no statistical difference between the mean of QoL and the prevalence of sarcopenia or sarcopenic obesity, there was difference in the linear regression. In the adjusted analysis, at each increase of one kgf in HGS there was a 0.24 and 0.18 increase in the QoL score, for females and males, respectively. The sarcopenia was negatively associated with QoL, only in males, with a decrease of 3.06 points, but sarcopenic obesity wasn’t associated with QoL.

Considering the impact muscle and mass strength have on QoL, interventions that minimize the phenotypes related these conditions are fundamental. The adoption of exercises that improve the efficiency of muscular development and strength, as well as nutritional counseling, based on individual needs and socioeconomic level with a multi-professional team is emphasized. Since the HGS evaluation is a quick, simple, noninvasive and low-cost measure, it can be adopted by health professionals in the geriatric evaluation, and especially to become an important tool for monitoring and evaluate health groups results.

Guest blog by Larissa Pruner Marques – Researcher at EpiFloripa Aging Study, Department of Public Health, Federal University of Santa Catarina

Marques, L. P., Confortin, S. C., Ono, L. M., Barbosa, A. R., & d’Orsi, E. (2019). Quality of life associated with handgrip strength and sarcopenia: EpiFloripa Aging Study. Archives of gerontology and geriatrics81, 234- doi: 10.1016/j.archger.2018.12.015

The impact of access to prescription drugs on disability in eleven European countries

Clinical studies have shown that the use of certain drugs can reduce disability. Access to prescription drugs varies across countries. Figure 1 shows the number of new chemical entities (NCEs) that were launched in eleven European countries during the period 1982-2015. The average number of NCEs launched in the top 3 countries (709) was 42% higher than the number of NCEs launched in the bottom 3 countries (501).

Figure 1: Number of New Chemical Entities launched during 1982-2015, by country

Even when the total number of drugs launched in two countries is similar, the specific drugs that were launched, and the diseases those drugs are used to treat, may differ. As shown in Figure 2, at least two more drugs were launched in Italy than in Spain for four diseases, and at least two fewer drugs were launched in Italy for three other diseases. My study showed that the relative number of drugs launched for a disease in a country is higher when the relative prevalence of that disease is greater: “misery loves company.”

Figure 2: Difference between number of drugs launched during 1982-2015 for 7 diseases in Italy and Spain

As shown in Figure 3, relative disability from different diseases varies across countries: French people who had had chronic kidney disease and hip fractures were more likely to be severely limited than Germans, but French people who had had ulcers, breast cancer, and strokes were less likely to be severely limited than Germans.

Figure 3: Percent of people in France and Germany in 2015 with 5 medical conditions who were severely limited

In a recent paper, I tested the hypothesis that the larger the relative number of drugs for a disease that were launched during 1982-2015 in a country, the lower the relative disability in 2015 of patients with that disease in that country, controlling for the average level of disability in that country and from that disease, and the number of patients with the disease and their mean age. I analyzed several measures of disability for 31 diseases in eleven European countries using data from the Survey of Health, Ageing and Retirement in Europe (SHARE) and from other sources.

The estimates implied that drug launches during 1982-2015 reduced the probability of severe limitation in 2015 by 4.9 percentage points, from 21.8% to 16.9%; they reduced the probability of any limitation by 7.7 percentage points, from 61.1% to 53.4%; and they reduced the mean number of Activities of Daily Living limitations by about 29%. Drug launches also yielded a small increase in an index of quality of life and well-being.
I estimate that mean pharmaceutical expenditure on drugs launched after 1981 by people 45 and over in the eleven European countries was $611. Expenditure of $611 reduced the probability of being severely limited by 4.9 percentage points. If people would have been willing to pay at least $12,469 (= $611 / 4.9%) to avoid being severely limited, which is very likely, drugs launched during 1982-2015 would have been cost-effective, even if they did not provide any other benefits, e.g. increased longevity and reduced hospitalization. However previous research has demonstrated that new drug launches have also provided those benefits.

In general, the larger the number of drugs for a disease that were launched during 1982-2015 in a country, the lower the average disability in 2015 of patients with that disease in that country, controlling for the average level of disability in each country and from each disease, and the number of patients with the disease and their mean age.
The long-term reduction in disability attributable to increasing availability of prescription drugs may have been offset by adverse trends in behavioral risk factors, such as obesity. SHARE data indicate that the fraction of the population aged 50 and over that was obese (BMI > 30) increased from 17.1% in 2004 to 22.2% in 2015.

Previous research has demonstrated that new drug launches have reduced mortality: they have enabled people who would have died if the drugs had not been launched to remain alive. Presumably, those additional survivors were the most severely ill and disabled: biomedical innovation tends to offset natural selection. Therefore, the reduction in the average disability of living people due to new drug launches would probably have been even greater if the drugs had not reduced mortality.

Guest blog post by Prof. Frank R. Lichtenberg, PhD, Columbia University, National Bureau of Economic Research, and CESifo. First posted on the SHARE blog

The article is based on:

Lichtenberg FR. (2019), The impact of access to prescription drugs on disability in eleven European countries, Disability and Health Journal,