Karen Glaser

Caregiver Burden as People With Autism Spectrum Disorder and Attention-Deficit/Hyperactivity Disorder Transition into Adolescence and Adulthood in the United Kingdom

OBJECTIVE There is increasing recognition that autism spectrum disorder (ASD) and attention-deficit/hyperactivity disorder (ADHD) are associated with significant costs and burdens. However, research on their impact has focused mostly on the caregivers of young children; few studies have examined caregiver burden as children transition into adolescence and young adulthood, and no one has compared the impact of ASD to other neurodevelopmental disorders (e.g., ADHD). METHOD We conducted an observational study of 192 families caring for a young person (aged 14 to 24 years) with a childhood diagnosis of ASD or ADHD (n = 101 and n = 91, respectively) in the United Kingdom. A modified stress-appraisal model was used to investigate the correlates of caregiver burden as a function of family background (parental education), primary stressors (symptoms), primary appraisal (need), and resources (use of services). RESULTS Both disorders were associated with a high level of caregiver burden, but it was significantly greater in ASD. In both groups, caregiver burden was mainly explained by the affected young persons unmet need. Domains of unmet need most associated with caregiver burden in both groups included depression/anxiety and inappropriate behavior. Specific to ASD were significant associations between burden and unmet needs in domains such as social relationships and major mental health problems. CONCLUSIONS Adolescence and young adulthood are associated with high levels of caregiver burden in both disorders; in ASD, the level is comparable to that reported by persons caring for individuals with a brain injury. Interventions are required to reduce caregiver burden in this population.

Family, work and quality of life: Changing economic and social roles through the lifecourse

This article reports research funded as part of the recent ESRC Growing Older initiative. The project ‘Family, Work and Quality of Life’ explored changes in economic and social roles across four birth cohorts passing through mid-life (45–59/64 years) in Britain. The relationship between multiple role responsibilities and a range of indicators of quality of life, including material resources, health and engagement in social activities were investigated. The research was based upon secondary analysis of four different surveys: the 2000 British Household Panel Study, the 1994–95 Family and Working Lives Survey, the 1985, 1990, 1995, and 2000 General Household Surveys, and the longitudinal Retirement Survey (1988/89 and 1994). A particularly interesting finding is that being ‘caught in the middle’, in terms of having simultaneous care-giving responsibilities to dependent children and frail parents whilst in paid work, has been atypical. Only one-in-nine British women, and one-in-ten British men, aged 45–49 years (born in 1941–45) occupy all three roles concurrently, but multiple role occupancy is increasing across cohorts, particularly the combination of caring and paid work. Role occupancy significantly affects the accumulation of pension entitlements (particularly second-tier pensions), with the effect that many women who have fulfilled the important social roles of carer and parent will face a low income in old age. Where adverse health outcomes were found, parental role in mid-life was most frequently associated with such poor health, suggesting that continued parental demands in mid-life may have negative health consequences.

Trends in, and transitions to, institutional residence among older people in England and Wales, 1971-91.

OBJECTIVES: To compare transitions from private households to institutions between 1971-81 and 1981-91 among elderly people and see whether (1) differentials in the risk of institutionalisation changed and (2) whether the risk was higher in the second period. DESIGN: Cross sequential analysis of data from the Office of National Statistics longitudinal study, a record linkage study which included individual level data from three national censuses, (1971, 1981, and 1991) and linked vital registration data. SUBJECTS: Altogether 26,400 people aged 65 and over in 1971-81 and 32,500 persons aged 65 and over in 1981-91. These samples represent 1% of the population of England and Wales. RESULTS: In both periods models including age, housing tenure, and marital status or household/family type terms fitted the data reasonably well. The effect of age was stronger in the second decade, while that of marital status was reduced. The risk of transition to an institution was nearly 33-52% higher in the second decade after controlling for these factors. CONCLUSIONS: During the 1980s the availability of state financed institutional care increased substantially; a growth which the 1990 NHS and Community Care Act was designed to reverse. Increased access to institutional care undoubtedly is one factor underlying the higher transition rate to institutions observed in 1981-91 than for the previous decade. During 1981-91, transitions to live with relatives also declined substantially. It is not clear whether this simply represents the continuation of a previous trend or whether the increased availability of institutional care led to some substitution for family care. Either interpretation has worrying implications for policy makers keen to promote care in the community.

Socio-economic status differences in older people's use of informal and formal help: a comparison of four European countries

This study investigates the variations by older peoples socio-economic status (SES) (i.e. educational level and social class) in the use of informal and formal help from outside the household in Great Britain, Italy, Belgium and The Netherlands. In all these countries, it was older people in low SES groups who mostly used such help. Multinomial logistic regression analyses showed that, in each country and for both types of help, there were SES gradients in the utilisation of both formal and informal care, and that differences in age, health and marital status largely accounted for the former but not the latter. Cross-national differences in the use of both informal and formal help remained when variations in sex, age, SES, health, marital status, home ownership and the use of privately-paid help were taken into account. Significant interaction effects were found, which indicated that older people in low SES groups in Great Britain and The Netherlands had higher odds of using informal help from outside the household than their counterparts in Italy, and similarly that those in The Netherlands were more likely to use formal help than their Italian peers. The results are discussed in relation to the cultural differences and variations in the availability of formal services among the countries.

Revisiting convergence and divergence: support for older people in Europe

Recent commentators have distinguished ‘weak’ from ‘strong’ family societies, arguing that older people in less family-oriented societies receive less support from family members than those in countries with strong family ties (e.g. Southern Europe). This study explored the north-south divide in various dimensions associated with support for older people among selected European countries participating in a European Scientific Foundation network, ‘Family Support for Older People: Determinants and Consequences’ (FAMSUP). Employing data from a wide variety of sources (e.g. nationally representative surveys, censuses, and official publications) we used principal components and cluster analysis to investigate patterns across countries in four dimensions designed to be indicative of the balance between family and formally provided resources for older people and the socio-economic, demographic and policy contexts in which these are provided. Rather than a clear-cut north-south division European countries reflect a more complex classification in terms of support for older individuals when a wide range of measures associated with different dimensions of support for older people are used. Future research requires comparable cross-national data on key indicators of family support.

Limiting long-term illness and household structure among people aged 45 and over, Great Britain 1991

The aim of the study reported here was to investigate the relationship between health and household composition among older people. The 1 per cent and 2 per cent SARs (Samples of Anonymised Records) drawn from 1991 British Census data were used to examine the frequency of a limiting long-term illness among older people according to different types of living arrangements. These data include the population in institutions and our results show that previous studies based only on the private household population have underestimated the prevalence of illness among older people. Long-term illness rates vary across family and household types, with higher frequencies found for those individuals not living in families (either alone or with others) or in lone parent families, compared with those living as part of a couple. Importantly, our results show a previously unreported clustering of long-term illness in households. Those over 45 suffering from a limiting long-term illness were more likely than those without such an illness, to live in households including others with long-term illness. These results indicate that health should be considered from a household, rather than just an individual, perspective. Our findings support those who have argued that families including an older ill member need more help from formal services. However, it is unlikely that this can be achieved solely by redeploying services from those living alone as long-term illness rates were also high in this group.

The impact of caring for grandchildren on the health of grandparents in Europe: A lifecourse approach

Grandparents are becoming an increasingly important source of childcare. However, caring for grandchildren may have negative health consequences particularly for grandparents with intensive commitments such as those with primary care responsibilities. To date most studies on this issue are based on cross-sectional data and do not take earlier life circumstances into account. Thus, it is not known whether (or to what extent) the relationship between grandparental childcare and health is due to cumulative advantage or disadvantage throughout the lifecourse or to the impact of grandchild care per se. Employing data from waves 1-3 of the Survey of Health, Ageing and Retirement in Europe we investigated the longitudinal relationship between grandparental childcare (i.e. intensive and non-intensive) and health once cumulative histories of advantage or disadvantage are taken into account. We used latent class analysis to categorise respondents according to childhood socio-economic and health conditions drawing on life history information. Experiences in adulthood (e.g. periods of ill health) were also captured. We created a latent continuous physical health variable based on self- and observer-measured indicators. OLS regression was used to explore the association between physical health at wave 2 and grandparental childcare at baseline, controlling for conditions in childhood and adulthood, and for health and socio-economic characteristics. We found a positive longitudinal association between grandchild care and health even after earlier life health and socio-economic conditions were taken into account. However, this significant association was found only for grandmothers, and not grandfathers. Our results suggesting the health benefits of grandchild care are important given the widespread provision of grandparental childcare in Europe. However, further research on underlying mechanisms and causal pathways between grandchild care and grandparent health, as well as on gender differences in the pattern of association, is needed.

Rates of undiagnosed attention deficit hyperactivity disorder in London drug and alcohol detoxification units

BackgroundADHD is a common childhood onset mental health disorder that persists into adulthood in two-thirds of cases. One of the most prevalent and impairing comorbidities of ADHD in adults are substance use disorders. We estimate rates of ADHD in patients with substance abuse disorders and delineate impairment in the co-morbid group.MethodScreening for ADHD followed by a research diagnostic interview in people attending in-patient drug and alcohol detoxification units.ResultsWe estimated prevalence of undiagnosed ADHD within substance use disorder in-patients in South London around 12%. Those individuals with substance use disorders and ADHD had significantly higher self-rated impairments across several domains of daily life; and higher rates of substance abuse and alcohol consumption, suicide attempts, and depression recorded in their case records.ConclusionsThis study demonstrates the high rates of untreated ADHD within substance use disorder populations and the association of ADHD in such patients with greater levels of impairment. These are likely to be a source of additional impairment to patients and represent an increased burden on clinical services.

Fertility Decline, Family Structure, and Support for Older Persons in Latin America and Asia

Objectives: To compare family structures and support for older persons in two Asian countries (Taiwan and the Philippines) and six urban areas in Latin America (Buenos Aires, São Paulo, Havana, Santiago, Mexico City, and Montevideo). Methods: Using the 1999 Survey of Health and Living Status of the Elderly in Taiwan, the 2000 Philippine Survey of the Near Elderly and Elderly, and the 2001 Pan American Health Organisation surveys on Salud, Bienestar y Envejecimiento en América Latina y el Caribe, descriptive tables show variations across countries in family structure, proximity, and transfers of support by the timing of the fertility transition in each location. Results: Older people in settings with earlier transitions had fewer children and more childlessness, higher levels of solitary living, and lower levels of coresidence with children. In earlier transition settings, receipt of family support was lower and provision higher. Discussion: The timing of the demographic transition has significant implications for kin availability and support.

Class, caring and disability: evidence from the British Retirement Survey

There has been an increasing interest in the caring responsibilities of middle generation individuals as numerous studies have noted the continuing family obligations of people in later life. Employing data from the United Kingdom Office of National Statistics Retirement Survey of 1988/89, we examined social class differentials in the provision of care by 55–69 year olds. Our results show few social class differences in the provision of co-resident care to a parent (among those aged 55–69 in 1988/89 with at least one living parent), but significant social class differences in the provision of care to a spouse. Working class individuals were more likely to be caring for a spouse than their middle class counterparts because of the higher prevalence of disability among this group.