Opinion

I am the daughter and one of the main carers for my 90-year-old mother. My mother was diagnosed with dementia in 2015. In this article, I reflect on dealing with my mother's progressive disability, with a focus on one experience. I explain why I believe withholding the truth is sometimes an acceptable, or even a preferable, course of action. The article illustrates how differing advice and lack of guidance about dementia diagnosis and 'truth-telling' play out in practice.

These are not easy times for carers in England. While English legislation and government policy are more carer-friendly than ever before, resources are under increasing pressure from both the exploding ‘demographic time-bomb’ and ‘austerity’. This has followed the global financial crash of 2008, subjecting the whole of the public sector to significant cuts. [...] If access to formal care has proportionately reduced, we must drive additional value from a more integrated voluntary and statutory sector ‘system’.

The word ‘carer’, meaning family carer, is now widely used, especially in Western cultures. However, it is open to interpretation, is employed differently depending on circumstance, sector and setting, is at times resisted as a label by carers themselves, and is evolving as a term and role. This contribution reviews the term ‘carer’ and how it is understood, with particular reference to Ireland.

Recruiting, retaining and returning carers to the workplace have already been identified as major economic and social issues in the UK. They are likely to become even more important as a consequence of demographic and economic pressures on families and employers (HM Government et al, 2013). This article sets out the current and future context regarding working carers, as well as the business response in terms of policy and practice, highlighting what has been achieved and what has yet to be addressed.

An increasing amount of research in Europe – and beyond – has focused on the development of innovative solutions for providing support services to family carers of frail older people. This is especially the case in terms of web-based programmes. [...] There is clearly a role for well-designed and robustly supported web-based support platforms like InformCare in helping to sustain carers, deliver policy aims and ensure carer access to information, advice and support.

Research has identified that approximately 80% of care across the European Union (EU) is provided by families (spouses, parents and children), neighbours and friends (Hoffmann and Rodrigues, 2010). Even in countries with a well-developed supply of formal long-term care, the number of ‘informal’ carers is estimated to be at least twice as large as the formal care workforce. ‘Informal’ care provision is under pressure ...

Globally, an estimated 46.8 million people are living with dementia (ADI, 2015). The figure for Japan is 5 million; this represents 15% of all those aged 65 years and over (MHLW, 2015). With no cure and few effective treatments, policy developments increasingly emphasise ‘living well’ with the condition within supportive families and friendly communities (DH, 2009, 2012a, 2012b; WHO and ADI, 2012).

In Australia, 2.7 million family and friend carers care for people with disabling conditions (including mental health conditions), who are terminally ill and/or who are elderly and frail.

Harris focuses on the the healthcare industry's start of recognizing family members and close friends to have a greater impact on the patients experience of illness and outcomes than formal healthcare. She also highlights the statistics of United States Census Bureau and the National Center for Heath Statistics 2016 profile of older Americans and opportunity to recognize and celebrate the valuable role that informal caregivers provide every day by showing support through shopping, sending card, telephone calls, random acts of kindness and spiritual support through prayer.

Croft appreciates that while caring is a rewarding experience, the responsibility of supporting others can take its toll: indeed, people who provide substantial care are at 50% greater risk of experiencing mental health problems themselves. The burden of caring can be objective and subjective. For carers to fulfil their roles and feel supported doing so, it is essential for nurses to be empathetic and compassionate, and provide information, as well as offering a carer's assessment.