Caring for older people in the 21st century: 'notes from a small island'

Drawing on carer narratives from research undertaken in New Zealand, this paper considers the interrelationship between place and the care-giving experience. In doing so, it considers: first, how informal carers of older people experience the transition in the place of care from the home to care homes; second, how they negotiate new identities for themselves as carers in these new care settings; and third, carers' views on how we might develop more inclusive models of care in care home settings. While much current work on care-giving in the home highlights the blurring of the boundaries between formal and informal care-giving, this paper suggests that the blurring of the boundaries of care may also be manifest in an increased penetration of informal care-giving within the semi-public space of the residential care home.     

Intergenerational transfers and informal care for disabled elderly persons in China: evidence from CHARLS

Aiming at ‘ageing healthier and ageing better’, a certain amount of high‐quality informal care should be available for elderly persons with physical disability as formal care is barely accessible in China. The demographic transition and family structural changes have dramatically weakened traditional norms of filial piety and the structure of intergenerational transfers. This article employed nationwide representative data from the first wave (2011) of Chinese Health and Retirement Longitudinal Study (CHARLS) in order to identify the duration of informal care provision at home for frail elders (1122 in rural areas and 577 in urban areas, total 1699), measured in monthly hours, before estimating the associations between intergenerational transfers and the received time of informal care with Tobit Model analysis. Results showed that financial support from the younger generation was unexpectedly negatively associated with the monthly hours of care, implying a reduction of caring support along with increasing financial transfers towards older parents. The lack of informal care could not be compensated by having more children, co‐residing with children, or increasing the parent‐to‐child/grandchild transfers. Spouses were shown to replace children as the major caregivers. In addition, the community‐based long‐term care system needs to be promoted to sustain and develop informal care, as the latter will become increasingly important with changing family dynamics. Finally, the received time of informal care, rather than the severity of physical disability measured by difficulty with ADLs or IADLs, was introduced to identify the actual demand for care by elders. The paper argues that it is important to reconceptualise and re‐investigate the duration of care provision in the Chinese context in order to develop standards of payment as part of long‐term care policies.     

Reports of the proportion of older people living in long‐term care: a cautionary tale from New Zealand

Objective: Population ageing is driving many countries to review health and social care policies. For many, an important component is residential long‐term care (LTC). This study uses New Zealand to ascertain the extent different reports provide consistent and accurate estimates of LTC use. Methods: We searched for available cross‐sectional information about use of LTC by people aged 65 years or over in NZ's population since 1988. In addition, for one geographic region, Auckland, we compared research survey data at three time‐points with the nearest census estimates. Results: Fifty‐eight national‐level estimates (census, subsidy payments and population surveys) were found. Since 2000, estimates of the proportion of older people reportedly living in long‐term care ranged from 3.4% to 9.2%. Comparisons with Auckland studies demonstrated improved reporting in the 2006 census. Conclusion: Estimates of the proportion of people living in residential LTC varied widely. OECD reports, often used for cross‐national comparisons, were particularly inconsistent. Implications: While estimates of the proportion of people living in residential LTC in NZ are inconsistent, improvements are evident in census and subsidy data. Reconciling new data with previous reports prior to publication may reduce variations in reporting. Improved reliability will assist understanding of within‐country trends and international comparisons, and better inform decisions shaping health services for older people.     

The role of social networks in using home care by older people across Continental Europe

The diversification of caregiving arrangements in European societies has drawn attention to the factors that condition the use of care by older people. Social and family relations appear as a key factor, mainly to be related to the availability and accessibility to potential informal caregivers. Recent studies evidenced that geographical proximity and a larger social network increase the probability of receiving informal support in old age. However, the ways in which interpersonal relationships are associated with the use of formal care, as well as the cross‐country variability of this association, have been barely explored. Using a sample of 37,708 individuals aged 65 and over from Wave 6 of the Survey of Health, Ageing and Retirement in Europe (SHARE), this study examines to what extent the characteristics of older people's social networks predict the use of three types of home care; formal, informal, or combined, exploring the cross‐European convergences and divergences. Binomial logistic regressions are conducted to compare four macro‐regions in continental Europe (northern countries: Denmark and Sweden; western countries: Austria, Belgium, France, Germany, Switzerland, and Luxembourg; southern countries: Italy, Spain, Greece, and Portugal; and eastern countries: Poland, Czech Republic, Slovenia, Estonia, and Croatia). The structure, availability, and accessibility to the members of the social network are the major predictors of the receipt of informal care everywhere. Regional divergences are observed regarding to formal care, alone or combined with informal caregivers.     

Analysing the importance of older people's resources for the use of home care in a cash‐for‐care scheme: evidence from Vienna

Older people of lower socioeconomic status (SES) are disproportionately affected by chronic conditions, yet less able to compensate health limitations through use of formal long‐term care (LTC) at home, a preferred type of care for most. Some, like older women and single people, are particularly vulnerable. Under the Austrian public cash‐for‐care scheme, which aims to incentivise care at home and empowerment of LTC users, this study analyses: (i) interdependencies between SES, gender and ‘informal’ or family care, and (ii) how these factors associate with the use of old age formal home care in Vienna. An adaptation of Arber and Ginn's theory is used to identify material resources (income), health resources (care needs) and informal caring resources (co‐residence and/or availability of family care). Gender aspects are also considered as a persistent source of inequalities. Administrative and survey data, collected by public authorities between 2010 and 2012 in Vienna, serve to compare home care use in old age (60+) to other support forms (residential and informal care) using logistic regression analysis. Results show a pro‐rich bias in home care use among single‐living people, with high‐income single people being less likely to move to a care home, while there are no significant income differences present for non‐singles. Second, traditional gender roles are salient: female care recipients co‐residing with a partner are more likely to use formal care than men, reflecting that men's traditional gender roles involve less unpaid care work than women's. In conclusion, in an urban setting, the Austrian cash‐for‐care scheme is likely to reinforce stratifications along gender and class, thus implementing the general policy objective of care at home, but more likely for those with higher income. A support mechanism promoting empowerment among all older people might contribute to unequal degrees of choice, especially for those with fewer resources to manage their way through a fragmented system of LTC delivery.     

The challenges associated with providing community care for people with complex needs in rural areas: a qualitative investigation

The aim of the present study was to explore the experiences of recipients and providers of community care in rural areas in Northern Ireland. Additionally, the authors sought to examine the impact of location, housing and environmental factors on the delivery of community care to older people with complex needs. Individual, semistructured interviews were held with service users (n = 17) and family carers (n = 14). Individual and focus group interviews were conducted with care assistants, health and social care professionals, and senior managers from a large health and social care trust and health and social services board in Northern Ireland. The importance of enabling older people to remain in their own homes and communities was emphasised by all participants. The main challenges associated with care provision in rural areas included: difficulties recruiting care assistants; lack of choice of care assistants; isolation; travel and distance between clients and their care assistants; and poor housing conditions. There was a general consensus among participants that the effectiveness of rural community care was perceived to be reliant upon the goodwill of the community. Additionally, changing demographic trends and the predicted shortfall in the number of formal and informal carers were considered key issues for service planners. A number of creative strategies could be used to address many of the limitations associated with rural isolation. These should involve capitalising on available community networks. However, planners should also acknowledge that additional resources are required to maintain older people in rural communities.     

Access and acceptability of community‐based services for older Greek migrants in Australia: user and provider perspectives

In most developed nations, ageing migrants represent a growing proportion of the older population. Policies that emphasise care in the community depend on older migrants having access to formal services along with informal support, yet little is known about how older migrants experience community‐based formal services. By examining the views of both Greek elders in Australia and those of formal service providers, this research fills an important gap in the literature around access to and acceptability of formal community‐based services for older migrants. A research team including two Greek background researchers used existing social groups and a snowball sampling method to conduct face‐to‐face interviews and focus groups with seventy older Greeks in Adelaide, Australia. In addition, 22 community‐based service providers were interviewed over the telephone. Results from users and providers showed that while many older Greeks experience service access issues, they also relied heavily on family for support and assistance at home. Reliance on family was both in preference to formal services or where formal services were used, to locate, negotiate and monitor such services. Common barriers identified by both groups included cost, transport and availability, but additional challenges were posed by language, literacy and cultural attitudes. Demographic changes including greater employment mobility and female workforce participation among adult children will have implications for both formal and informal care providers. Formal service providers need to ensure that services are promoted and delivered to take account of the important role of family in informal support while also addressing the access challenges posed by language and literacy. Research conducted by researchers from the same cultural background in the respondent’s native language can further advance knowledge in this area.     

A community‐of‐care: the integration of a palliative approach within residential aged care facilities in Australia

In developed countries, residential aged care facilities (RACFs) are increasingly becoming the place of care and site of death for older people with complex chronic illnesses. Consequently, it is becoming ever more relevant for these facilities to provide appropriate complex, as well as end‐of‐life care for this growing group of people. Evidence‐based guidelines for providing a ‘palliative approach’ were developed and introduced in Australia in 2004, with the emphasis on improving symptom control earlier in the disease trajectory. The aim of the study reported here was to explore the extent to which a palliative approach was being used in the organisation and provision of care for older people with complex needs living in mixed‐level (a combination of low‐ and high‐level care) RACFs. This paper primarily reports on the qualitative findings. Two residential aged care organisations, one in rural New South Wales and the other in Sydney, Australia, participated. Data were collected over a 9‐month period from May until December 2008. Residents, family members and aged care staff were interviewed. Thematic analysis of participant interviews shows that while the various elements of a palliative approach are incorporated into the care of high‐level care residents, the discourse itself is not used. In this paper, we argue for a new conceptualisation of care for people in mixed‐level care facilities: a community‐of‐care, in which a palliative approach is one of several components of the care provided. The findings illuminate aged care staff experiences of providing care to high‐level care residents. They also provide valuable insights into high‐level care residents’ perceptions of their health, care provided and the way in which they foresee their care being provided in future. These findings will be important for informing clinical practice, research and policy in these settings.     

The association between cognitive impairment and community service use patterns in older people living in Australia

Family plays a vital role in supporting individuals with dementia to reside in the community, thus delaying institutionalisation. Existing research indicates that the burden of care‐giving is particularly high for those caring for a person with dementia. Yet, little is known about the uptake of community services by people with a diagnosis of dementia. Therefore, this study aims to better understand the relationship between cognitive impairment and the receipt of community care services. In order to examine the relationship, secondary data collected across Queensland, Australia, from 59,352 home‐care clients aged 65 and over during 2007–2008 are analysed. This cross‐sectional study uses regression analyses to estimate the relationship between cognitive impairment and service mix, while controlling for socio‐demographic characteristics. The dependent variables include formal services, informal care and total home‐care service hours during a 12‐month period. The findings of this study demonstrate that cognitive impairment is associated with accessing more hours of respite and day centre care but fewer hours of other formal care services. Additionally, the likelihood of support from an informal caregiver increases when a client becomes cognitively impaired. Therefore, this study demonstrates that there is an increased need for respite programmes to support informal caregivers in the future, as the population of people living with dementia increases. These findings support the need for investigations of new and innovative respite models in the future.     

Developing and utilising a new funding model for home‐care services in New Zealand

Worldwide increases in the numbers of older people alongside an accompanying international policy incentive to support ageing‐in‐place have focussed the importance of home‐care services as an alternative to institutionalisation. Despite this, funding models that facilitate a responsive, flexible approach are lacking. Casemix provides one solution, but the transition from the well‐established hospital system to community has been problematic. This research seeks to develop a Casemix funding solution for home‐care services through meaningful client profile groups and supporting pathways. Unique assessments from 3,135 older people were collected from two health board regions in 2012. Of these, 1,009 arose from older people with non‐complex needs using the interRAI‐Contact Assessment (CA) and 2,126 from the interRAI‐Home‐Care (HC) from older people with complex needs. Home‐care service hours were collected for 3 months following each assessment and the mean weekly hours were calculated. Data were analysed using a decision tree analysis, whereby mean hours of weekly home‐care was the dependent variable with responses from the assessment tools, the independent variables. A total of three main groups were developed from the interRAI‐CA, each one further classified into “stable” or “flexible.” The classification explained 16% of formal home‐care service hour variability. Analysis of the interRAI‐HC generated 33 clusters, organised through eight disability “sub” groups and five “lead” groups. The groupings explained 24% of formal home‐care services hour variance. Adopting a Casemix system within home‐care services can facilitate a more appropriate response to the changing needs of older people.     

Formal and informal care for community‐dwelling frail elderly people over time: A comparison of integrated and usual care in the Netherlands

While integration has become a central tenet of community‐based care for frail elderly people, little is known about its impact on formal and informal care and their dynamics over time. The aim of this study was therefore to examine how an integrated care intervention for community‐dwelling frail elderly people affects the amount and type of formal and informal care over 12 months as compared to usual care. A quasi‐experimental design with a control group was used. Data regarding formal and informal care were collected from frail elderly patients (n = 207) and informal caregivers (n = 74) with pre/post‐questionnaires. Within‐ and between‐group comparisons and multiple linear regression analyses were performed. The results showed marginal changes over time in the amount of formal and informal care in both integrated care and usual care. However, different associations between changes in formal and informal care were found in integrated and usual care. Most notably, informal caregivers provided more instrumental assistance over time if formal caregivers provided less personal care (and vice versa) in integrated care but not in usual care. These results suggest that integrated care does not necessarily change the contribution of formal or informal care, but changes the interaction between formal (personal care) and informal (instrumental) activities. Implications and recommendations for research and practice are discussed. Trial registration: Current Controlled Trials ISRNT05748494.     

Factors related to preference for participation and degree of commitment in community activities among older adults in Japanese depopulated areas

To address the rapid increase in the ageing population, Japan implemented the Long‐Term Care Insurance System (LTCS) in 2000. Additionally, a community‐based integrated community care system was released in 2012. The purpose of these policies was to help older people who need care or support to continue to live their preferred lifestyles in their own communities. According to this paradigm, older residents are themselves considered members of the community caregiving team and expected to participate in volunteer activities to help the neighbourhood. One such activity is social participation including community activities. Many factors influencing social participation have been found in previous literature. However, knowledge of specific factors about community activities is limited, even though these kinds of activities have attracted policy attention. Our study examined factors related to thoughts about community activities among people aged >40 years. We conducted random sampling in two depopulated areas in Japan and used an anonymous mail survey method. Our survey consisted of three parts: social demographics, health and life, and medical/long‐term care. A total of 2,466 individuals participated in the study (response rate 52.2%), whose average age was 64.2 (SD = 10.3) and 46.5% (n = 1,146) were female. Items including talking with neighbours frequently (social demographics), higher self‐rated health (health and life), the need for health consultations and the desire to take care of family members when they need help (medical/long‐term care) were significantly related to both preference for participation and degree of commitment in community activities. To encourage participation in community activities among older citizens, we recommend interventions related to health literacy and family ties.     

Impediments to community‐based care for people ageing with intellectual disability in rural New South Wales

The emerging phenomenon of ageing with an intellectual disability has become subject to an increasing research focus in recent years. However, there remains little knowledge regarding the specific impediments that community workers face in supporting this cohort. The aims of the current study were to identify the major factors that, direct care staff believe, have most impact upon individuals ageing with an intellectual disability in the community. A three‐round Delphi project was conducted across rural areas of New South Wales in Australia with 31 disability support workers to gain their perspectives on the main impediments facing a person ageing with intellectual disability. The 2010 study identified that the issue of ageing with an intellectual disability was presenting significant problems for community‐based service delivery to this group of people. The panel identified 25 different impediments to the provision of support. A thematic analysis of the items indicated three main themes of ‘funding’, ‘training’ and ‘access to services’. By identifying these impediments to supporting people ageing with an intellectual disability in the community, both services and government funding bodies have the ability to plan to overcome both current and future problem areas. This identification of impediments may facilitate individuals to receive more appropriate assistance, which in turn may lead to an improved quality of life and maintenance of a community‐based placement rather than premature admission to the congregate‐care system. This study is particularly timely, given that Australia is in the midst of implementing a National Disability Insurance Scheme, and is an opportunity for all levels of government to agree on the mechanisms to appropriately assist individuals with an intellectual disability to continue to be supported in the community as they age.     

Informal care and health care use of older adults

Informal care by adult children is a common form of long-term care for older adults and can reduce medical expenditures if it substitutes for formal care. We address how informal care by all children affects formal care, which is critically important given demographic trends and the many policies proposed to promote informal care. We examine the 1998 Health and Retirement Survey (HRS) and 1995 Asset and Health Dynamics Among the Oldest-Old Panel Survey (AHEAD) using two-part utilization models. Instrumental variables (IV) estimation controls for the simultaneity of informal and formal care. Informal care reduces home health care use and delays nursing home entry.     

“It's a nice country but it's not mine”: Exploring the meanings attached to home,rurality and place for older lesbian,gay and bisexual adults

An ageing population across European nations, including the United Kingdom, brings with it new challenges for health and social care services and precipitates social policy initiatives targeted at meeting the care and support needs of a rapidly expanding number of older people. Ageing in place is one such policy driver—policy efforts that seek to promote the maintenance of older citizens residing in their own homes for as long as possible with minimal state intervention. Current generations of older lesbian, gay and bisexual (LGB) people have endured homophobia throughout their life histories, and sexual identity can shape perceptions and experiences of ageing, including experiences of home life, community and place. Our objective is to examine the meanings attached to home and place for older LGB adults living independently across three dimensions: rural places as “home,” connections to LGB communities, and social care provision in the home. We present interview findings from a mixed‐methods study on the social inclusion of older LGB adults in Wales. Twenty‐nine LGB‐identifying adults (50–76 years) self‐selected to participate in semistructured interviews between 2012 and 2013. Thematic findings from interviews indicate varying and contradictory meanings attached to home life in rural places, the importance of connection to communities of identity across geographical and online localities, and a high degree of ambivalence towards the prospect of receiving social care services in the home. We argue that a more nuanced understanding of the subjective meanings attached to home, rurality and community for older LGB people is needed to fully support LGB citizens to continue to live independently in their homes.     

Determinants of Unmet Needs among Slovenian Old Population

Background

Population ageing has significant effects on societies. The organization of care for dependent old people is one of the key issues for ageing societies. The majority of care for homebound dependent old people in Slovenia is still performed by informal carers, even though the use of formal services has been increasing over the last 20 years. The proportion and characteristics of people with unmet needs are important for the development of long term care social policy.

Method

The SHARE (Survey of Health, Ageing and Retirement in Europe) survey was used to assess the determinants of care arrangements and of unmet needs of the aging population in Slovenia. Multinomial regression analysis was used to evaluate individual and contextual determinants of care arrangements and unmet needs.

Results

The proportion of older people with unmet needs is 4%. As expected, “needs” (Functional impairment OR=4.89, P=0.000, Depression OR=2.59, P=0.001) were the most important determinant, followed by the predisposing factor “age” (age OR 1.15, P=0.000) and two enabling factors, namely:”community setting and “availability of informal care within household” (Urban areas OR=.47, P=0.021; Household size 3+ OR=2.11, P=0.030).

Conclusion

This study showed that there are a proportion of older people in Slovenia with severe needs for care, which are being unmet. As shown by the importance of enabling factors, social policy should encourage the development of formal services in rural areas and elaborate policy measures for informal carers.     

Assessing the impact of a restorative home care service in New Zealand: a cluster randomised controlled trial

Due to the ageing population, there is an increased demand for home care services. Restorative care is one approach to improving home care services, although there is little evidence to support its use in the community setting. The objective of this trial was to evaluate the impact of a restorative home care service for community-dwelling older people. The study was a cluster randomised controlled trial undertaken at a home care agency in New Zealand. The study period was from December 2005 to May 2007. Older people were interviewed face-to-face at baseline, four and 7 months. A total of 186 older people who received assistance from a home care agency participated in the study, 93 received restorative home care and 93 older people received usual home care. The primary outcome measure was change in health-related quality of life (measured by the Short Form 36 [SF36] Health Survey). Secondary outcomes were the physical, mental, and social well-being of older people (Nottingham Extended Activities of Daily Living, Timed Up and Go, Mastery scale, Duke Social Support Index). Findings revealed that compared with usual care, the intervention demonstrated a statistically significant benefit in health-related quality of life (SF36) at 7 months for older people (mean difference 3.8, 95% CI -0.0 to 7.7, P = 0.05). There were no changes in other scale measurements for older people in either group over time. There was a statistically significant difference in the number of older people in the intervention group identified for reduced hours or discharge (29%) compared with the control group (0%) (P < 0.001). In conclusion, a restorative home care service may be of benefit to older people, and improves home care service efficacy.     

Mixed care networks of community‐dwelling older adults with physical health impairments in the Netherlands

As part of long‐term care reforms, home‐care organisations in the Netherlands are required to strengthen the linkage between formal and informal caregivers of home‐dwelling older adults. Information on the variety in mixed care networks may help home‐care organisations to develop network type‐dependent strategies to connect with informal caregivers. This study first explores how structural (size, composition) and functional features (contact and task overlap between formal and informal caregivers) contribute to different types of mixed care networks. Second, it examines to what degree these network types are associated with the care recipients' characteristics. Through home‐care organisations in Amsterdam, the Netherlands, we selected 74 frail home‐dwelling clients who were receiving care in 2011–2012 from both informal and formal caregivers. The care networks of these older adults were identified by listing all persons providing help with five different types of tasks. This resulted in care networks comprising an average of 9.7 caregivers, of whom 67% were formal caregivers. On average, there was contact between caregivers within 34% of the formal–informal dyads, and both caregivers carried out at least one similar type of task in 29% of these dyads. A principal component analysis of size, composition, contact and task overlap showed two distinct network dimensions from which four network types were constructed: a small mixed care network, a small formal network, a large mixed network and a large formal network. Bivariate analyses showed that the care recipients’ activities of daily living level, memory problems, social network, perceived control of care and level of mastery differed significantly between these four types. The results imply that different network types require different actions from formal home‐care organisations, such as mobilising the social network in small formal networks, decreasing task differentiation in large formal networks and assigning co‐ordination tasks to specific dyads in large mixed care networks.     

Beyond the definition of formal care: Informal care arrangements among older swedes who are not family

This study explores care practices of older people outside formal care and without appealing to predefined relationships. We conducted interviews with 30 independent‐living men and women aged 67–93 in three municipalities in Sweden. The interviews explored how they cared for themselves and other older people who were not family. Interviews were conducted between December 2017 and May 2018 and later transcribed and analysed using grounded theory. Our paper presents one of the first studies on informal care practices among older people that looks beyond the definition of formal care to understand how such care complements formal care services. The findings show that older people participate in several care arrangements to care for themselves as well as for others. The arrangements feature different types of mutuality and include distant relations to other older people and larger more or less formalised groups. The findings highlight the importance of looking beyond conceptualisations of care based on understandings of formal care and specific relationships as a frame for understanding informal care. To promote older people's health by cultivating and supporting older people's care for themselves and others, research and healthcare practitioners need to explore and acknowledge the significance and complexity of older people's everyday care practices.