The importance of informal carers for primary health care

Abstract

Demographic ageing in Europe leads to a growing incidence of age-related diseases, a growing demand for care and a real sustainability challenge for our social and health-care systems. Against this backdrop, community care has become a prominent EU priority in the last few years and the shift towards home-based care is seen as a practical measure to contain the costs of services while also supporting widespread preferences among older people for being cared for in their own home (European Union, 2012). In most European countries, a large part of long-term care for older people is provided by informal carers. Even in countries with a well-developed supply of formal long-term care, using narrow definitions of informal carers, their number is estimated to be at least twice as big as the formal care workforce. According to recent EU-funded research, informal carers across the EU provide over 80% of all care, with women providing approximately two-thirds of care mainly as daughters (in law) and wives/ partners. Advances in medicine also mean that carers find themselves having to deliver more and more sophisticated levels of care, with very little training and minimal support (Rodrigues and Hoffmann, 2010).

Exploring the Needs of Spousal, Adult Child, and Adult Sibling Informal Caregivers: A Mixed-Method Systematic Review

“…They assist the care recipient (CR) with activities such as bathing, clothing, shopping, cooking, household chores, and managing finances (Roth et al, 2015;Schwartz et al, 2021). Along with professional caregivers, ICGs form a major pillar of the health, social, and long-term care systems in any country (Yghemonos, 2016).…”

The experiences of spousal and adult child caregivers of stroke survivors in transitional care: A qualitative systematic review

“…Caregivers are central to the sustainability of health and social care systems (Yghemonos, 2016). The term 'patient-caregiver dyad' was coined to encompass the relationship between a patient and a caregiver.…”

“…Due to its acute onset, stroke caregivers are often not prepared to cope with the drastic changes to their daily lives on discharge (Gbiri et al, 2015). It is also during this period that caregivers adopt coping strategies to deal with the stressors of caregiving, leading to the formation of unhealthy habits and lifestyles (Ramazanu et al, 2020; Yghemonos, 2016). It is pivotal to ensure that caregivers are well‐equipped with sufficient knowledge and skills as they undertake the sole responsibility of care (Reinhard et al, 2008).…”

Complex home care: challenges arising from the blurring of boundaries between family and professional care

“…This has been due to rising costs of formal health care, growing numbers of patients requiring ongoing care, reduced institutional care, medical and technological advances which enable home care, and patient and family preferences (Kirk and Glendinning 1998;Barrett et al 2014). Increasingly complex care can now be managed at home, either by patients themselves or with the assistance of family carers (with varying levels of formal support) (Holm and Raina 2012;Yghemonos 2016).…”

“…The experience of embracing care drew attention to questions of whether there was choice when options for caring were initially discussed and whether there was available and acceptable alternative support. Complex caring is frequently undertaken for many years with significant impact on the carer's social and economic situation and family relationships (Yghemonos 2016). To enable choice, carers' roles and responsibilities need to be negotiated at the outset, with opportunity for renegotiation as circumstances change.…”