Older Mind Matters

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?

3 comments (Add your own)

1. Emyr wrote:
Given that there's little evidence that of caring for the carers who care within the NHS, it might not be surprising that there is little attention given to carers who care outwith the NHS. I have a colleague who takes an academic interest in how large employers look after the welfare of their employees, and the NHS comes out very badly. Superficially surprising, that, but no surprise to those of us who work within the NHS.

Do you think current dementia services care for the carers?

Probably not, but if we want to engineer major change, we need a whole new ethos of caring for carers, however they care.

Wed, February 18, 2015 @ 5:53 PM

2. Victoria Sharman wrote:
Who cares for the carers ?

This is a question I keep asking myself during different phases and type of caregiving e.g. Elderly parents and end of life, spouse/brain tumour and recovery, neighbours and client work. A persistent curiousity is the different ways of caregiving and cultural practices. I have come to realise in some parts that perhaps this is to with our perception of a carer and/or caregiving. Emploers differ in how they make their workforce feel cared for and the image of no vulnerability may mean those who care are unbreakable and need no care.

A colleague recently found herself in a dilemma of having the power of deciding when a life support should be switched off on behalf of a neighbour who has no relatives except her support. This has triggered for herself memories of caring for her parents and reviewing her will on how she would like to die. She says "my head is all over the place ... I dont want my children to go through what I have been through ..." At the end of our session, I felt helpless against the process of death and dying with a sense that we provided a platform for her experiencing to be witnessed and validated, explore decision making.

Wed, February 18, 2015 @ 6:49 PM

3. Dave Jolley wrote:
Thinking about people who are caring for someone (with dementia)
Thanks for this – as ever a different topic but a ‘wake up’ call to rouse us from simple acceptance of the way things are.
I followed your link to the 2005 paper about the vulnerability and its implications for legislation in Northern Ireland. It came from Geraldine Fennell who is not someone I know. Looking for help from Google may give some clues to her position.
As you say most people will see themselves as capable of care, though some are more naturally caring than are others. We may care about and for people, other creatures, places, causes and more. The formal designation of an individual as a carer is not arbitrary, but it almost certainly does not identify a category which is absolute: many people who are not so recognised by themselves or others give care in similar degree and at similar personal cost.
What we require is that people who are giving their time and talent to look after dependent others, for a short time or a long time, are supported so that they can do this. The support needed may be financial, educational, social, psychological (emotional), spiritual or (even) medical. It may come from one or several directions: personal family help, friends and family, voluntary, independent sector or statutory services.
I would say there is a range and depth of such support available to us all. There are specific arrangements for financial support, for time away from work, and for the specific needs of people involved in dementia care. The original and blessed Alzheimer’s Disease Society was conceived to help carers, Admiral Nursing was created in response to the declared needs of one caring family and is now extended to others. These address people in particular and often extreme states of distress and declared need. For most, a combination of family, friends and the generally available, sensible and applied virtues of Primary Care will fit the bill – and people who care will be grateful and reflect on their experiences as difficult, testing, but born without regret.

Sun, February 22, 2015 @ 6:10 PM

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