Caring for the carers

I’m doing some work with carers at the moment and I’ve been thinking about the vulnerability of carers, particularly at a time of financial constraint. A paper on the Internet has helped me in thinking about this. You can link to it here.

Caring carries costs. Becoming a carer involves making sacrifices. Some carers sacrifice their health (eg one husband, carer of his wife with dementia, told me: ‘I can’t have an operation – I can’t leave her’: yet he was in pain, and surgery had been advised.) Other carers have to put the needs and support of some family members lower down their list of priorities than the person they care for – later they may report long term consequences. For example a woman, who had cared for her husband with an early onset dementia until he died, told me that her children (then in their early teens) never recovered from the impact of his illness and care on their education at a critical time.

Carers take on their role without giving informed consent. Often partners and others over time imperceptibly/ gradually take on a caring role without any thought about where this is leading and what the consequences might be. In fact many carers feel that they have no choice: “I’m his wife I have to look after him”; “she looked after me when I was little/ ill/ having problems so it’s my duty to look after her now”. There’s a literature on filial obligation, though Stuifbergen and Van Delden argue that the obligation is to care about, not necessarily to care for.

Carers are not prepared for the role they take on – they don’t know what to expect. They may be given very little information about what they’re letting themselves in for, and the state has a vested interest in carers continuing to care so perhaps all taxpayers have a stake in that too! Or am I being cynical?

At the same time carers are not always included in the care of their relative and sometimes are actively excluded! This may be in deference to the bloated sacred cow of confidentiality, which in my view should be leaner and meaner. One might suspect that society wants them to care but doesn’t allow them to have the information they need in order to do so. I support the Nuffield council on bioethics stance that:

“unless there is evidence to the contrary, there should be a presumption of trust in carers by health and social care professionals and care workers” (Chapter 7; page 120)

“Professionals should be made aware of the legitimate reasons why carers may ask for medical or other confidential information, and ordinarily start from the assumption that if a carer is involved in making a decision on behalf of the person with dementia, then they will need the same level of information as any other member of the care team.” (Chapter 7; page 121)

So yes, I have no doubt that at least some carers are vulnerable as a result of taking on the caring role, yet they may not fit the accepted definition of a “vulnerable person”, and, by failing to recognise and address their vulnerability, practitioners in health and social care may unwittingly increase the stress they are under. Yet when care breaks down the burden on the state and the distress caused to two people (and sometimes more) may be considerable.

Do you think current dementia services care for the carers?

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