Wednesday 15 May 2013

Power to the people

If you are a family carer you will know only too well the emotional, physical and mental toll that caring can take on even the fittest, healthiest and most positive people. The very nature of caring means it is relentless, affects every area of your life - often meaning that relationships, careers and socialising are put on indefinite hold – and can amount to a constant battle just to survive.

As a result, many carers are left feeling ignored, marginalised and painfully isolated. Package all of this up and there is no doubt that carers are at a huge risk of depression, something finally acknowledged by the Royal Collage of General Practitioners who have highlighted this issue and called for routine depression screening for carers. Full credit to the RCGP for their efforts, and it is certainly something that needs tackling, but sadly I don’t feel that primary care, or indeed the healthcare system in general, is either equipped or supported to make real inroads into providing carers with the help that they really need.

My concern is that by pinpointing depression, something that we have known drug treatments for, it will be viewed that a prescription is the solution, simply because that's an easy option. We don’t have a pill to combat isolation or provide support - only extensive investment into services, community initiatives and ultimately cultural change can do that, and all of these elements are no closer to being given the priority and real backing that they need.

Giving people a prescription (that isn’t without side-effects) does nothing to tackle the causes of depression, or address the problems carers are experiencing that put them under such huge strain. In this regard, it is much like our approach to tackling depression amongst one of the largest groups who rely on family carers – people living with dementia.

Depression is seen as a major symptom in dementia, even though actually diagnosing it with clinical accuracy is likely to become extremely difficult as dementia advances. In my father’s case, his diagnosis of depression amounted to an assumption that as he had dementia ‘he must be depressed’ and medication was prescribed (as I wrote about here). Quite when drugs became sweeties to be dolled out to any vaguely needy recipient is anyone’s guess, but needless to say I wasn’t happy about it.

My father had good days and bad days, much like anyone with dementia, and indeed anyone without dementia! Catch him on a bad day and yes, you might assume he was depressed. In which case it is far easier to give him a pill than it is to look at the causes of his suspected depression and ways in which his mood might be lifted. To do that you would need to put yourself into his shoes which takes time, patience, understanding, compassion and, in the case of professionals, money.

Thus we are back to that oh so familiar tale, lack of resources. It seems that the depression people with dementia may have, and the depression that their carers, and indeed carers generally, are potentially more likely to have are both linked to the need for a skilled and equipped support network that can provide the REAL relief that is needed.

I would venture to suggest that person-centred care (as I wrote about here) is the solution to much of the depression and withdrawal that people with dementia can experience. Find something that they love and enjoy and you will transform their quality of life. Don’t ‘do’ things to them – share experiences with them. As a family we combatted any depression my father felt by spending time with him, enjoying the things that made him happiest and embracing him as a person, rather than looking at his dementia as some sort of barrier preventing quality of life, or a set of symptoms that needed to be medicated against.

Applying the same person-centred principles to supporting carers is something that is on few agendas, but it is vital that a compassionate society delivers this. A pill for depression isn’t the answer, any more than ill-thought-out respite options are, or stigmatised interference that isn’t welcome. The only way to truly alleviate the pressures carers feel is to listen to them. Understand their individual needs and find holistic ways to support them and their family. You cannot make assumptions about what people feel, need or want. Most importantly of all, you cannot have a tick-box exercise to determine what is best for them, only the person themselves is likely to know that.

Failing to take into account the differences between each person is a sure-fire way to make their life even more difficult, whilst also wasting what few resources are available. It may not be popular to give power back to patients and carers, but it is the only way we will ever truly tackle the problems that they are experiencing, including depression.

Until next time...
Beth x


You can follow me on Twitter: @bethyb1886

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