Age and gender of informal carers: a population-based study in the UK

This paper identifies variations in the age and gender characteristics of informal carers in the UK. The paper is based on the Individual Sample of Anonymous Records, a 3% random sample of the 2001 UK Census. The sample size was 1 825 595. Of this sample, 10% were reported to be carers. The analysis shows that informal caregiving is systematically linked with both age and gender. Caregiving increased with age until reaching a peak in the 45-59 age group, in which almost 20% were carers. Similarly, the amount of time spent caregiving increased with age, with the highest levels of caregiving commitment in people aged 80-89 years. Regarding gender, 11.3% of women were carers compared to 8.6% of men and overall women committed more time to caregiving than men. However, this pattern was reversed in later life (70+), where there was a higher proportion of carers and greater time commitment to caregiving amongst men. While the predominance of women as informal carers has been well reported, the importance of men as informal carers in old age is much less commented upon. This study thus suggests that informal caregiving is most prevalent in groups of the population that, according to previous research, may experience most strain from doing so: elderly people who may be frail and often are in a spousal relationship with the care-recipient, and middle-aged women with multiple roles. Therefore, it is of great importance that their particular needs and circumstances are fully taken into account both in the development of formal support and when information about available support is targeted.     

Informal carers: sources and concomitants of satisfaction

Empirical and conceptual explorations of informal care have concentrated largely on the difficulties and problems of carers to the virtual exclusion of the gratifications and rewards that can be experienced. Whilst not seeking to minimize the undoubted problems which carers face, this paper attempts to redress the balance by providing evidence that caring can be a source of personal satisfaction for many individuals and that such satisfaction can co-exist with high levels of stress. It begins by highlighting some common conceptual elements from the available literature on the satisfactions of informal carers. Qualitative data from an investigation by the authors are used to illustrate the range of rewards and satisfactions experienced by informal carers. Analysis of the presence of rewards and satisfactions suggest that factors in the social context of care rather than the personal or dependency characteristics of the cared-for are important concomitants. Theoretical, methodological, policy and practice implications are considered in turn.     

Preparedness for caregiving: A phenomenological study of the experiences of rural Australian family palliative carers

The care of people with life‐limiting illnesses is increasingly moving away from an acute setting into the community. Thus, the caregiver role is growing in significance and complexity. The importance of preparing and supporting family caregivers is well established; however, less is known about the impact of rurality on preparedness and how preparedness shapes the caregiving continuum including bereavement. The aim of this study, conducted in 2017, was to explore how bereaved rural family palliative carers described their preparedness for caregiving. Interpretative phenomenological analysis was employed following semi‐structured interviews with four women and six men (N = 10, aged 55–87 years). Participants were recruited voluntarily through past engagement with a Regional Specialist Palliative Care Consultancy Service in Australia. The experiences of caregivers illustrated a lack of preparedness for the role and were characterised by four major themes: Into the unknown, Into the battle, Into the void and Into the good. The unknown was associated with a lack of knowledge and skills, fear, prognostic communication, exclusion, emotional distress and grief experience. Battles were experienced in a number of ways: intrapsychically (existing within the mind), through role conflict and identity; interpersonally with the patient, clinician and family; and systematically (against health, financial and legal systems). The void was felt during isolation in caregiving, in relinquishing the role, in bereavement and in feeling abandoned by service providers. Positive experiences, such as being valued, included and connected to supports, and the fostering of closer relationships and deeper meaning, occurred less frequently but temporarily buffered against negative aspects. Implications from this study for policy and practice centre on the frequent, purposeful and genuine engagement of caregivers. Services and clinicians are encouraged to enhance communication practices, promote meaningful inclusion, address access issues and enhance support at role relinquishment.     

Public expenditure costs of carers leaving employment in England, 2015/2016

In the context of global population ageing, the reconciliation of employment and unpaid caring is becoming an important social issue. The estimation of the public expenditure costs of carers leaving employment is a valuable measure that is of considerable interest to policy makers. In 2012, the Personal Social Services Research Unit estimated that the public expenditure costs of unpaid carers leaving employment in England were approximately £1.3 billion a year, based on the costs of Carer's Allowance and lost tax revenues on forgone incomes. However, this figure was known to be an underestimate partly because it did not include other key benefits that carers who have given up work to care may receive. This paper presents a new estimate of the public expenditure costs of carers leaving employment. Key sources of information are the 2009/2010 Survey of Carers in Households, 2011 Census and 2015/2016 costs data. As well as Carer's Allowance, the estimate also now includes the costs of other benefits that carers leaving work may receive, namely, Income Support and Housing Benefit. The results show that the estimated numbers of carers who have left employment because of caring have increased from approximately 315,000 to 345,000. Due mainly to the inclusion of a wider range of benefits, the public expenditure costs of carers leaving employment in England are now estimated at £2.9 billion a year. The new estimate comprises £1.7 billion in social security benefits paid to people who have left their jobs because of unpaid caring, plus another £1.2 billion in taxes forgone on this group's lost earnings. The paper concludes that, if there was greater public investment in social care, such as “replacement care” to support carers in employment, and fewer carers then left employment, public spending on benefits would be lower and revenues from taxation would be higher.     

The Golden Freeway: a preliminary evaluation of a pilot study advancing information technology as a social intervention for boys with Duchenne muscular dystrophy and their families

Established information technology was used in an attempt to reduce social isolation by providing each family who had a child with Duchenne muscular dystrophy with a personal computer, and e-mail and Internet connectivity. Seventy-four of the 88 families in the north of England (i.e. Cumbria, Durham, Northumberland, Teesside, and Tyne and Wear) with a boy with Duchenne muscular dystrophy who was diagnosed before January 2000 had the equipment installed. Evaluations of equipment usage and parental perceptions of the project were carried out at 3 and 12 months post-installation. Results from quantitative and qualitative interviews with parents indicated that benefits accrued to the families and to the boys themselves: family relationships can be extended, and the boys can acquire a degree of independence which, according to parents' views, can boost self-confidence and self-esteem. As hoped, social isolation was felt to have been reduced, and an occupation, interest and enjoyment provided. The greatest use of the computer was for schoolwork with siblings sharing in this. Cost proved to be a problem for a number of families. For the project team, there were unexpected aspects: creating an e-community was more difficult than anticipated, more training was required and not all families would ever use the equipment to its fullest. However, families did emphasise the value of the project as a way of opening the world for their sons.     

The medication role of informal carers

A qualitative study was undertaken to determine the role that informal carers perform with respect to dependants' medication. The objectives of the study were to understand the nature of medication-related assistance provided by informal carers and to identify any problems they encounter with this role. Face-to-face interviews were conducted with 20 informal carers who were known to provide medication-related assistance. Three group discussions were held with informal carers attending a local selfhelp group. Results from the study indicate that informal carers often provide support with all aspects of medication management including obtaining supplies, administering medication and monitoring effects. Other informal carers keep an eye on their dependant's medication but are not involved in the day-to-day management. The amount of support provided is influenced by the carer's and dependant's physical and mental ability. Furthermore, carers' commitments, such as family and work, and their relationship with the dependant will also affect the level of support they provide. A lack of medication-related knowledge, and an inability to access some of the pharmaceutical and medical services available, result in carers experiencing additional difficulties in fulfilling their role. More attention should be paid to the practicalities of managing medication. Furthermore, the needs of carers should be considered alongside those of the patient when developing pharmaceutical services. Such a philosophy would be in line with the provision of Community Care which advocates the development of services which are sensitive to carers as well as to dependants.     

A pilot study of how information and communication technology may contribute to health promotion among elderly spousal carers in Norway

The objective of this pilot Norwegian intervention study was to explore whether use of information and communication technology (ICT) by informal carers of frail elderly people living at home would enable them to gain more knowledge about chronic illness, caring and coping, establish an informal support network and reduce stress and related mental health problems. Potential participants were close relatives of an elderly person with a diagnosis of a chronic illness dwelling in the same household who wished to continue caring for their relative at home, were 60 years of age or older, had been caring for less than 2 years, were a computer novice and had Norwegian as their first language. Nineteen elderly spousal carers participated in the study from two municipalities in eastern Norway. The project commenced in January 2004 and consisted of a multimethod evaluation model. Outcomes measured included carers' social contacts (measured by the Family and Friendship Contacts scale); burden of care (measured by the Relative Stress scale); and knowledge about chronic disease and caring, stress and mental health and use of ICT (examined via a composite carer questionnaire). These quantitative data were collected immediately prior to the study and at 12 months. Qualitative data were also collected via focus group interviews with participant carers at 7 months. At follow-up, quantitative measures did not reveal any reduction in carer stress or mental health problems. However, carers reported extensive use of the ICT service, more social contacts and increased support and less need for information about chronic illness and caring. Contact with and support from other carers with similar experiences was particularly valued by participants. The intervention also enhanced contacts with family and friends outside the carer network. Thus, it can be seen that ICT has the potential to contribute to health promotion among elderly spousal carers.     

Investigating the economic case of a service to support carers of people with dementia: A cross‐sectional survey‐based feasibility study in England

Carers contribute essential support to enable people with dementia to continue living within the community. Admiral Nurses provide specialist dementia support for carers of people with dementia, including offering expert emotional support and guidance, and work to join up different parts of the health and social care system to address needs in a co‐ordinated way. The cost‐effectiveness of this service is not clear. We undertook a feasibility study to explore related outcomes and costs for these carers. A cross‐sectional, clustered survey was undertaken in England in 2017, in areas with and without Admiral Nursing (AN). The survey questionnaire included questions on the characteristics of the carers and the person with dementia, outcomes (care‐related quality of life [CRQoL], self‐efficacy and subjective well‐being), use of health and social care services, out‐of‐pocket costs and time spent on informal care. We used different econometric techniques to compare the outcomes and the costs of the carers with and without AN services: linear regression, propensity score matching and instrumental variables analysis. These techniques allowed us to control for differences in observed and unobserved characteristics between the two groups of carers which determined outcomes and costs. We concluded that AN services might have a positive effect on carers' CRQoL, self‐efficacy and subjective well‐being. Furthermore, we found little difference in costs between carers using AN and those using usual care, or in the costs of the people with dementia they care for. Our findings provided an initial indication as to whether AN services could be good value for money. The key limitation of the study was the difficulty in controlling for unobserved characteristics because of the cross‐sectional nature of our observational data. To diminish this limitation, our survey could be used in future studies following carers with and without AN services over time.     

Impacts of COPD on family carers and supportive interventions: a narrative review

Caring for a relative with chronic disease influences multiple dimensions of family carers’ lives. This study aimed to provide an overview of the impacts of chronic obstructive pulmonary disease (COPD) on family carers and identify interventions aimed at supporting them. A narrative review was conducted. Searches were performed in electronic databases using a combination of keywords. Articles were screened for relevance and selected articles were analysed in two groups considering the study aims. Eighteen articles were selected. Fifteen studies evaluated the impacts of COPD on family carers and three studies presented interventions aimed at supporting them. Carers reported negative impacts of caring on physical health, emotional, social, relational and financial/employment life dimensions. Positive aspects of care‐giving were reported in four studies and were related to carers’ personal growth and satisfaction in being able to do something useful for their relatives. The existing interventions were directed at both patients and carers; however, studies provided limited information on how carers were involved, hindering the interpretation of findings. In conclusion, COPD poses several unique challenges to family carers related to the specificities of the disease. Further research with appropriate intervention studies is needed to promote carers’ healthy adjustment to the disease.     

A multi-centre survey among informal carers who manage medication for older care recipients: problems experienced and development of services

The UK Government has highlighted the need to develop appropriate information and support services for informal carers. Previous research that has investigated informal caring has found that managing medication is one aspect of the caring role that presents its own problems; however, these have not been subject to detailed examination. The objective of the present paper was to report the number and type of problems experienced by informal carers when managing medication for older care recipients, and to relate these to measures of coping and health. This was a cross-sectional survey undertaken in one district in each of four randomly selected health authority areas in England. Structured interviews, comprising closed and open questions, with 184 informal carers and 93 associated older care recipients were conducted in participants' own homes. Data were gathered on the number and type of medication-related problems experienced in relation to the informal caring role, and the impact of these from carers' perspectives in terms of coping and health. Sixty-seven per cent of carers reported problems with at least one medication-related activity. Problems were associated with all types of medication-related activities, and experienced by carers providing different levels of care for older people. Four themes were identified from carers' accounts which illustrated a diversity of practical problems and anxieties: maintaining continuous supplies of medication in the home; assisting with administration; making clinical judgements; and communicating with care recipients and health professionals. Carers reporting greater numbers of medication-related problems were more likely to experience higher levels of carer strain (P < 0.001) and poorer mental health status (P < 0.001). The findings of the present study provide insights to inform the development of primary care services to support informal carers in the management of medication for older people.     

Actions to influence the care network of home‐dwelling elderly people: A qualitative study

Positive impact of care networks of home‐dwelling elderly people may be based on several network mechanisms: navigation to resources, negotiation between participants and contagion of behaviours. Little is known about actions of participants—elderly people, informal caregivers or formal care providers—to activate such mechanisms and generate support. Aim of this study was to identify actions in relation to these network mechanisms. A cross‐sectional qualitative study of 48 interviews with home‐dwelling elderly people, informal caregivers and formal care providers in the eastern parts of the Netherlands was conducted between March and September 2016. A framework analysis on network mechanisms categorised actions. Actions were reviewed by network party and compared between networks to explore relations between actions and networks. Results showed that participants navigated through existing relations to seek support. Actions on negotiation were aimed at ameliorating existing relations. Few examples and no actions on contagion of behaviours were found. Actions seemed driven by incidents and existing relations. Elderly people rarely initiated actions, informal caregivers felt hampered by their position in the network. Consistent patterns of relations between actions and network characteristics did not emerge. We concluded that the full potential of network‐based support of elderly people is probably underused. Particularly promising seem: navigating the neighbourhood for new informal care, using opposite opinions as a catalyst for change and bringing quality of life and dilemma's into dialogue in the network.     

Balancing satisfaction and stress: carer burden among White and British Asian Indian carers of stroke survivors

Objectives: This paper presents the findings of a qualitative study exploring White and British Indian informal stroke carers’ experiences of caring, factors contributing to their stress, and strategies used to overcome stress.

Design: A qualitative approach involving in-depth interviews was used to explore informal carers’ experiences of caring for stroke survivors and the stress of caring at one and three to six months from the onset of stroke. Interviewers bilingual in English and Gujarati or Punjabi conducted interviews with carers. Socio-demographic data of carers and stroke survivors were collected at one, and three to six months by dedicated stroke research nurses.

Results: A total of 37 interviews with carers caring for stroke survivors with a wide range of physical and mental impairments were completed. A majority of carers had assumed the task of caring within a few weeks of the stroke. Irrespective of ethnicity, carers’ emotional and physical well-being was undermined by the uncertainty and unpredictability of caring for stroke survivors, and meeting their expectations and needs. The strain of managing social obligations to care was common to all carers irrespective of gender and ethnicity, but the higher levels of anxiety and depression reported by Indian British female carers appeared to stem from the carers’ pre-existing physical ailments, their cultural and religious beliefs, and household arrangements. Carers’ strain in extended households was exacerbated by the additional responsibility of caring for other dependent relatives.

Conclusion: Since the role of carers is clearly indispensable in the successful rehabilitation of survivors, it is vital to ensure that their well-being is not undermined by a lack of information and training, and that their need for professional support is prioritised.     

Formal carers: attitudes to working with the dementing elderly and their informal carers

This paper presents a discussion of some of the results arising from a study into the inter-relationships between the dementing elderly in the community, and their informal and formal carers. The results from one phase of the study, which gathered data from informal carers, were used in the development of an attitudinal questionnaire. The questionnaire was distributed to a sample of 60 formal carers drawn from a wide variety of health, social and voluntary services. The questionnaire sought to gather data about the formal carers’ responses to their work with dementing people and their co-resident informal carers. The results of the questionnaire indicated that most of the formal carers believed that it was part of their job to maintain the dementing person in their own home and that they were effective in doing this. However, many of the respondents were uncertain whether homecare was best for the dementing person. The results also suggested that the majority of respondents felt that maintaining the dementing person at home was not detrimental to the informal carers welfare and that their intervention was effective in supporting the informal carer. These findings are discussed within the context of the informal carer phase of the study and demonstrate some variance between the formal and informal carer perspectives of care control and the significance of formal carer input.     

Elderly care recipients in a Swedish municipality living in their own homes: their diseases, functional health status and care provided as reported by formal carers

The aim of this study was to investigate from the perspective of formal carers the care given to people aged 65 and over, who are cared for in their own homes by informal care. Thirty-three district nurses (DNs) and 20 home service assistants in a municipality with 13500 inhabitants (over 65 years old), were interviewed about the location of care recipients and 398 care recipients were located. Most of them were over 80 years old and had more than one disease (62%), mostly related to the circulatory system (27%). Dependence in three or more of the Katz ADL categories was seen in 30%, reduced mobility in 67%, reduced memory in 34% to a degree that restricted their everyday life and 34% of them could seldom or never be alone. Care had been given for three years or more for 57% of these people. The monitoring of the disabilities and reduced functional health status differed significantly between the diagnostic groups. Home help service was associated with the care recipients' ADL index but not with their need for continuous monitoring. The DNs' care did not relate to any of the variables. In conclusion, diagnoses, the care recipients ability to be alone and functional health status are important variables to include when assessing the demands for home care and when planning supplementary care for home care recipients and their informal caregivers.     

Bereaved informal cancer carers making sense of their palliative care experiences at home

This qualitative study explored the positive meanings constructed and ascribed to the experience of providing palliative care at home by bereaved informal cancer carers, a group of individuals who are in a position to make sense of their caring experiences as a coherent whole. Twenty‐two bereaved cancer carers, living in New South Wales (NSW), Australia, were interviewed as part of a larger mixed‐method study examining the experience of informal cancer care. Participants were recruited through cancer support groups and cancer clinics, and through the Cancer Council NSW. Accounts of positive aspects of palliative caring were analysed using a thematic analytical approach from a constructionist perspective. The findings indicated that these bereaved carers gave accounts that accentuated the benefit and satisfaction derived from providing direct palliative care at home, which enabled them to construct positive meanings associated with their participation in the dying process, and as a result to ascribe subjectively meaningful interpretations to their loved ones’ death and their sense of loss. This included a sense of reward for doing something good, meeting the expressed needs of the patient, continuing with normal life as much as possible, improving the conditions of the relationship and meeting cultural expectations of the right thing to do. Being present at the point of death was positioned as rewarding because it facilitated the process of saying goodbye, fostered inclusion of others, provided closure and was a spiritual experience. These findings suggest that there are positive and rewarding aspects associated with providing informal cancer care in a palliative context, and these aspects were pertinent and meaningful for carers in their endeavours to reconcile the difficulties and loss they experienced. This has implications for the prevention and amelioration of distress experienced by informal cancer carers, and suggests that future research should not ignore the positive aspects of providing palliative care.     

Which informal carers are most satisfied with services for dying cancer patients?

This paper examines the relationship between the satisfactionof informal carers with the care delivered to dying people inthe last year of life and patient and carer characteristics.A secondary analysis was conducted on a subsample from the RegionalStudy of Care for the Dying (RSCD) in which bereaved relativesor friends of a random sample of deaths in 1990 in 20 healthdistricts across England were interviewed some 10 months afterthe death. There were 1,858 informal carers who were close relativesor friends/neighbours of people who died from cancer in thisanalysis. Results show that highly satisfied carers were thosewho perceived caring as rewarding (OR=2.31, 95% Cl: 1.04–5.11),those who reported having had no unmet needs while caring forthe deceased at home (OR=2.50, 95% Cl: 1.87–3.34), andthose who rated their post-bereavement health as excellent (0R=2.61,95% Cl: 1.70–3.90). Reporting for the deceased who wereowner-occupiers was also associated with a high odds ratio forsatisfaction (0R=2.52, 95% Cl: 1.37–4.61). Factors suchas the patient's duration of functional limitation, the durationof confusion and psychological symptoms, and the carer's strengthof religious faith were also found to predict satisfaction butto a lesser extent. Health planners and managers should be awarethat informal carers' overall satisfaction with health and socialservices is predicted by carer and patient attributes.     

Rethinking respite in Australia: A naturalistic effect study of a multicomponent community program to promote respite knowledge,attitudes and behaviours of carers of people with dementia

‘Rethink Respite’ was a prospective, naturalistic cohort study conducted in the Illawarra-Shoalhaven (NSW, Australia) to improve knowledge, attitudes and uptake of respite strategies in carers of people with dementia. A convenience sample of n = 70 carers were recruited in 2014–15 to establish a baseline for knowledge, attitudes and use of respite for a cohort of carers in the region. Carer perceived need for respite, burden and self-efficacy were also assessed. A co-designed multi-component community-based intervention was subsequently rolled at in the region from 2015 to 2016. The intervention supported: awareness raising media; carer education sessions; access to web and print respite information resources; and an option to participate in a tailored one-on-one in-home coaching program. At program completion, a follow-up survey was administered to the cohort, with n = 44/70 responding. All n = 44 respondents reported participation in and exposure to ‘Rethink Respite’ media, information and education during the intervention period. Eighteen of the 44 also self-selected to receive the active tailored coaching support. At follow-up, few positive results were reported on the assessed carer variables for the cohort over time. However, post hoc sub-group analyses found those who also self-selected to receive active support (provided through coaching) (n = 18), showed improvements to their respite knowledge, attitudes and self-efficacy (p < .05). Intention to use respite, and levels of personal gain from caring in this sub-group also increased (p < .05). In contrast, carers who only participated in the informational/educational aspects of the program (and did not self-select to the respite coaching), experienced negative changes over time to their respite beliefs and ‘role captivity’. Overall, this pilot study suggests that passive respite information and educational strategies are insufficient, without more active supports (tailored respite coaching) to address observed carer decline over time. Future research should seek to replicate these results using a larger sample and an experimental design.     

Proactive, targeted benefits advice for older people in general practice: a feasibility study

The aim of the present project was to assess a welfare benefits and advice screening programme offered in a systematic and inclusive way to all patients aged 80 years and over registered with a single general practice. The setting was an inner-city National Health Service group practice with a total of seven full-time general practitioners (GPs) and a list size of 12 000 patients. A total of 280 patients were identified as aged 80 years and over. Using a combination of telephone calls, surgery attendances and home visits, an advice worker contacted as many of these patients as possible. A wide range of advice and assistance of both a statutory and non-statutory nature was offered. Follow-up contacts and liaison with the patients' own GPs were arranged as necessary. Contact was made with a total of 206 patients. In total, the adviser made 98 home visits and carried out 82 consultations in the surgery, as well as undertaking 109 interviews over the phone. The findings indicate that an overall total of pound 137 819 was gained in increased annual income amongst the screened patients; in addition, a further pound 11 433 was awarded in one-off payments. A wide range of other benefits and help, including referral to other services and organisations, was gained. Elderly patients within the practice were under-claiming benefits and had many previously unidentified needs. Adopting a proactive and inclusive approach to offering welfare and advice takes time and expense, but the resulting benefits make it worthwhile. Primary care is an effective base from which advice can be delivered and the development of closer working relationships between primary care and advice services can be an effective and efficient way of helping patients.     

Trust in older persons: A quantitative analysis of alignment in triads of older persons,informal carers and home care nurses

Self‐management by older persons could be influenced by the level of trust found in triads of informal carers, formal care providers and care recipient, the older person. Little research has been done on care providers’ trust in older persons. This study aims to explore the level of trust that informal carers and home care nurses have in older persons, the extent of alignment in triads and the relationship between trust in older persons and self‐management. We conducted a cross‐sectional survey study in the Netherlands, sampling 133 older persons, 64 informal carers and 72 nurses, which resulted in 39 triads. Alignment level was analysed through Intraclass Correlation Coefficient 1 scores and absolute and mean difference scores. Correlation analysis and one‐way analysis of variance measured the relationship between trust and self‐management. The results show that triads contain both alignment and misalignment. Misalignment occurs mostly when informal carers and nurses have little trust in the older person while this person views their own behaviour towards their caregivers positively. Care providers’ trust levels relate significantly to their perception of the person's ability to self‐manage, but not to the person's self‐rated ability. This could be explained by care providers not communicating their intrinsic trust in the older person to them. Trust building could be enhanced by organising discussions of mutual expectations of trust and both formal and informal care providers could benefit from compassionate assessment training, to learn how to openly express their trust in the older person.