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- Conflicts of interest
- Appendix 1: Study flow diagram
Informal carers are family or friends who provide regular support and assistance to another adult who is ill, disabled or frail. Their role is recognised as making an important contribution to health and social care. Without them, the demand for professional care would be far greater. In the UK, government policy aims to improve support for carers to prevent or delay admissions to hospital and care homes (Department of Health, 2010b).
A growing number of older people with cognitive impairment living in the community rely on informal carers. When these patients are admitted to hospital for physical health problems, carers may not be much involved or assessed (Alzheimer's Society, 2009; Bridges et al., 2010) although carers' well-being is proposed as an indicator of quality of care (Department of Health, 2010a). Care home placement is more frequent, and length of hospital stay is longer for patients with co-morbid mental health problems than for patients without (Holmes and House, 2000; Sampson et al., 2009), and carers' subjective experience or burden may contribute to these outcomes. Carers of frail older people are prone to psychological distress (Buck et al., 1997; Waite et al., 2004; Idstad et al., 2010). Spouse carers of people with dementia have a four-fold risk of depression compared with spouses of people without dementia (Joling et al., 2010). Carers' psychological distress correlates with their perceived need for support from services (Stirling et al., 2010) and is amenable to tailored interventions (Hoskins et al., 2005).
This analysis sought to describe the carers of older people with cognitive impairment (delirium and dementia) who had unplanned admissions to a general hospital. We measured carer well-being, which we operationalised as carer strain, psychological distress and quality of life, and how it changed over 6 months following the hospital admission. Our hypothesis was that patient characteristics and carer living arrangements determine carer well-being.
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- Conflicts of interest
- Appendix 1: Study flow diagram
There was a high prevalence of strain and psychological distress among the carers studied, and we found differences between groups of carers defined by their living arrangements. People who cared for individuals living in the community were under greater strain and had greater distress at the time of hospital admission than carers of patients who lived in care homes. We found no definite evidence of higher strain in co-resident compared with non-co-resident carers, but co-resident carers often had poor physical health themselves. Patients' behavioural and psychiatric symptoms were strongly associated with both carer strain and distress at baseline. Faecal incontinence was also associated with greater distress and symptoms of delirium with greater strain.
Previous studies on the carers of confused older patients admitted to acute general hospitals are scarce, but our findings are broadly consistent with those of Buck et al. (1997). A study from Italy demonstrated greater strain in co-resident compared with non-co-resident carers (Raccichini et al., 2009). Our population was older and had more severe cognitive impairment and was therefore not directly comparable, but this may have been due to non-co-resident carers in our study often being sons or daughters, who are more likely to have competing demands from their own children or employment. A study in Spain (Conde-Sala et al., 2010) found greater stress among sons and daughters than among spouses, which they attributed to conflicting demands from offspring. Cultural differences in caregiving expectations may also be important (Colombo et al., 2011, chapter 3).
A strength of our study was that it was systematic and measured a wide range of patient characteristics and health status problems. We studied patients admitted to an acute general hospital, limiting the general applicability of our findings to all people with dementia. However, this is an important group in policy terms; as they form a large proportion of older people admitted to hospital (Alzheimer's Society, 2009; Sampson et al., 2009; Goldberg et al., 2012), hospital admissions can cause them disruption and distress, and health services aim to minimise unnecessary hospital admission. Our definition of a carer was broad, but the practicalities of studying patients in acute care settings, which are busy and fast moving, means that recruitment rates were modest. Because of the need for people with mental incapacity to have a consultee, the dyads included in this study may over-represent patients with worse cognition and be biased towards those carers who were able to visit hospital more often. Data on both patients' behavioural and psychiatric symptoms and carer well-being came from the same informant (the carer) at the same interview, so causality cannot be inferred from the observed associations. Our follow-up analysis was limited by lack of statistical power. We did not follow up bereaved carers, who may have had different outcomes.
The strongest associations with poor well-being were disturbed nights and high levels of arousal in the patient (e.g. irritability, agitation). Therefore, to improve carer well-being, interventions to prevent or reduce such behaviours should be investigated and promoted (Robinson et al., 2010). Antipsychotic and antidepressant medication are relatively ineffective at achieving these goals (Banerjee, 2009; Banerjee et al., 2011). However, in the absence of widespread access to alternatives, these findings may explain why many practitioners feel it necessary to try them. The observed association between Neuropsychiatric Inventory scores and carer strain (CSI) and distress (GHQ12) means that it may be possible to make inferences about carer well-being on the basis of patient assessments. This could be a convenient way of assessing needs for support at a population level, to inform planning and service development. If we know that a patient is displaying disturbed behaviours on the NPI, we should be able to mobilise support for the carer without having to ask the carer questions that may be perceived as unwarranted or intrusive. However, ‘carers’ form a heterogeneous group, making it difficult to generalise about them, and differences in circumstances should be better recognised. By contrast, the EuroQol EQ-5D was not particularly sensitive to carer well-being.
In conclusion, hospital staff should be alert to sources of carer strain and provide practical advice and emotional support for carers. This is important because communicating effectively with carers and finding ways of reducing their stress may improve patient outcomes and reduce care home placement, as 29% of patients initially living in the community had moved to care homes 6 months later. If admissions to long-term care are to be minimised, carer well-being should be a concern of health care providers as well as social services. It may be particularly critical to involve carers at the point when frail older people are admitted to hospital, when carers' knowledge about patients and carer participation in planning can facilitate the treatment phase. Likewise, carers' engagement with acute services can permit their own needs to be appraised and offers an opportunity to improve their capacity to provide ongoing care post-discharge. This ideal scenario calls for an integrated response from primary care, social care, community services and specialist mental health services. The findings from this study highlight how far the general hospital can play a part in such support for carers.
- Carers of people with co-morbid medical and mental health problems living in the community often experience high levels of stress.
- Sleeplessness, agitation and irritability in the person cared for were particularly detrimental to carer well-being.
- Interventions to alleviate behavioural and psychiatric symptoms of dementia could enable carers to cope for longer.
- Carers should be involved in treatment and discharge planning, which should include an assessment of their well-being—the NPI is a reasonable indirect indicator of likely carer strain. The GHQ12 and Carer Strain Index could also serve as direct measures of carer outcome.