Why is recognition for carers still so minimal? In comparison, for example, to parents.
I believe there are two reasons for this. Firstly, whilst people who are parents actively identify themselves as such, many carers don’t identify themselves as carers, therefore historically awareness and understanding of the needs of carers has never been at the same level as parents, for whom a huge amount of campaigning has happened to highlight their difficulties and needs.
Secondly, I feel that there are societal assumptions made about carers – that because carers are often ‘out of sight’ they become ‘out of mind’ and will just get on with it, with an expectation that juggling multiple responsibilities is something that happens behind closed doors and isn’t something wider society really needs to engage with.
Of course, it’s also worth bearing in mind that many people combine a caring role and parenting, known as being ‘Sandwich Carer’, which potentially brings with it more challenges than either role would individually.
Many people reading this will have a full-time job. What advise can you give them?
My primary advice would be to make sure you have identified yourself as a carer and obtained everything you’re entitled to – for example: A Carers Assessment under the Care Act (this falls under the remit of your local authority – More information here https://www.nhs.uk/conditions/social-care-and-support/carers-rights-care-act-2014/ and https://www.nhs.uk/conditions/social-care-and-support/carers-assessment/)You should also make sure your GP knows you’re a carer – this should give you access to a Carer Health Check (an appointment about your health and how you’re coping) and other healthcare options, like the flu jab https://carers.org/article/taking-care-yourself.
In addition, I would suggest getting in touch with carers charities, either locally or nationally, for carer-related support. Also, whatever the disability or condition the person you’re caring for has, there may well be specific charities or organisations who specialise in this and can support you both. In relation to my area of expertise – dementia – I would suggest Dementia UK (their Admiral Nurse Dementia Helpline is invaluable for dementia carers https://www.dementiauk.org/get-support/dementia-helpline-alzheimers-helpline/) the Alzheimer’s Society (helpline https://www.alzheimers.org.uk/info/20012/helpline or online forum: https://www.alzheimers.org.uk/info/20013/talking_point_-_our_online_forum) and dementia carer peer support organisation TIDE http://tide.uk.net.
I’m a firm believer that knowledge and information is power, so also search social media or look for blogs and books which are written by people either living with a specific condition or their carers/family members. These can provide both useful insights and a feeling that you’re not alone.
You were younger when your father developed vascular dementia – tell us your story.
My dad had vascular dementia for nineteen years, which began when I was around twelve years old. Dad went ten years without a diagnosis – when he was finally diagnosed, it was as a result of a larger stroke, and his doctors made the decision that he couldn’t return home. This meant dad would spend the last nine years of his life in three different care homes, punctuated by spells in hospital. Much of his care was excellent, but there were also examples of poor care, and it was particularly bad care practices that led to my father’s death in April 2012.
What is D4Dementia?
I began my D4Dementia blog http://d4dementia.blogspot.co.uk in May 2012 to share some of our experiences and particularly the aspects of dad’s care that had been a positive support to him and us. D4Dementia was shortlisted for a Roses Media Award in autumn 2012, and in 2013 I won ‘Best Independent Voice on Older People’s Issues’.
The blog now has over 200 posts, and my work has gone on to encompass campaigning (speaking at events, conferences, media work and films), writing for a wide variety of publications (including The Guardian, many leading magazines and journals and chapters in two books) and most notably now consultancy work (training and mentoring health and social care staff, and working with organisations who want to learn more about ageing, health, social care and dementia). You can find out more from my website: http://www.bethbritton.com
Finally, what advice would you give to employers who have carers in their workforce?
Become carer aware! Find out if you have personal expertise of caring within your management team, whether your wider staff team would like to begin a carer champion group or if you have an employee that could become a carers champion.
There are lots of charities and online resources that will help any organisation understand more about carers and their needs – you could begin by collecting booklets or information sheets and making these available to your workforce in their staff room, or having an informal drop-in session over a lunch break for colleagues to share their experiences and for you as an employer to learn more about their needs.
You could routinely voluntarily survey your staff, perhaps as part of the appraisal or supervision process, to find out if they have any caring responsibilities outside of work and how you could best support them. You could also hold an event for Carers Week https://www.carersweek.org, which happens in June every year and is an annual campaign to raise awareness of caring, highlight the challenges carers face, and recognise the contribution they make to families and communities throughout the UK.
In terms of practical working arrangements, what most carers who are in employment need is a flexible and understanding employer who has taken into account their caring responsibilities and is prepared to make reasonable adjustments to their working life, to enable that person to be both an effective employee and an effective carer. In other words, a win-win for everyone.