Monday 7 July 2014

Challenging stereotypes about families and care homes

Ask a cross-section of individuals what they think about care homes and you will often hear negative views of both the homes themselves and the families whose loved ones live in them. Having a relative in a care home has long been seen by the ill-informed as some sort of bypassing of responsibility, but for the majority of families that couldn’t be further from the truth.

Embarking on the heart-breaking process of finding a care home, and then trying to adjust yourself and your loved one to this new way of living, isn’t quite the throwaway experience that many people - including some of our politicians - have portrayed it to be. As someone whose dad lived in 3 different care homes over a 9 year period, the suggestion that we as a family somehow negated our responsibilities towards him infuriates me.

Neither my father nor us as his family were given a choice about dad’s care: his doctors decided that he would be a danger to himself and to others if he returned home after hospitalisation for a larger stroke that had led to a diagnosis of vascular dementia. Without a health and welfare Power of Attorney (such a document didn’t even exist then) or any advanced care directives, we were powerless to change that decision, although I don’t actually believe that the doctors were wrong in their assessment.

As a family we knew virtually nothing about dementia, and there was precious little support for us in trying to understand how best to alleviate my father’s symptoms and provide him with the best quality of life possible. With dad utterly miserable in hospital, it was an immense responsibility to be charged with finding him a care home. Like many families, we had no idea what we should be looking for and moved from visit to visit almost in a daze – arguably we were as lost and bewildered as poor dad was.

Against this backdrop, imagine feeling the need to justify yourself to people entirely unconnected with your own situation who feel it is their right to sit on the moral high ground and verbally punish relatives for talking what is seen by some as an ‘easy way out’. Moreover, those who proliferate this view only serve to further stigmatise care homes at a time when they have taken an immense public bashing.

Perhaps most worryingly of all though, is that by stigmatising those who seek help to care for a loved one we are in danger of making carers – that most isolated and undervalued group of people – even more isolated. We know that carers desperately need more support but many don’t feel that they can ask for help. They fear being seen as someone who ‘can’t cope’, and feel guilty at the prospect of asking for some respite for fear of the effect on their loved one. Yet no one can carry on caring alone forever without it having potentially very serious consequences for their own health, and in turn the welfare of the person that they are caring for.

There is also a particular stigma that many families from minority ethnic backgrounds face. Their culture is rooted in caring for ageing relatives at home and in private, but at the same time they are living in a UK society that has incompatible expectations and priorities. Often in Asian countries, different generations of a family are likely to be living in the same accommodation and can share the caring duties – both when nurturing the younger generations and helping the elders. The women will usually remain at home to perform these duties and can support each other.

In the UK, women increasingly need to work in order to contribute to housing and living costs, generations often live apart (and in the future more people will age as single adults with no children), and whilst there is support from employers for parents with young families, support for those who are caring for ageing relatives is severely lacking. Many families also feel very ill-equipped to take on a caring role, especially if someone becomes very frail or has advanced dementia. If they make mistakes, or a lack of specialist equipment leads to an injury or accident, those feelings can be compounded.

At the very least most families will end up needing a level of domiciliary care in order to look after a relative and continue to work, and many will eventually need a care home if the person’s needs become very complex. Ultimately, of course, that decision can also be taken out of the hands of families by health and social care professionals. They are duty bound to act in the best interests of the vulnerable person, and indeed a carer who they may have identified as someone who can no longer go on providing 24/7 care, particularly if that carer is older and in poor health themselves or has more than one person to care for.

So the idea that somehow families are abandoning their loved ones, en-mass, to abusive sub-standard care homes is wholly wrong. For a start most care homes are actually staffed by very caring people who do a wonderful job, as I spoke about in my recent film for Care England. In the minority of homes where that isn’t the case, it is completely abhorrent to take the view that families have ‘got what they deserved’ and if the care isn’t good enough that they should ‘do it themselves’.

Social care has, for a long time, been part of the fabric of UK society, and rather than trying to reverse that model we should be embracing ways to use it as creatively as possible. Ensuring that everyone has access to good quality care, be that short-term respite or long-term care, is vital for a healthy and vibrant society. When care is caring and compassionate, it can be a breath of fresh air into the lives of all that it touches.

I also believe that we need to stop looking at care as ‘them’ and ‘us’. Care, in all settings, should be about professionals and families working together, sharing knowledge and experiences. With an ever-increasing ageing population, my view is that this will need to become the norm if everyone - be they a person needing care, a family or a social care professional - is to cope with this new reality.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886


  1. The idealist in me wishes there could be housing which encompasses intergenerational options which may include villages not just for people with dementia but with houses, flats and schools surrounding a dementia care home. I would love primary and secondary schools to have projects which include children visiting care homes regularly. The care home should be as essential as the community centre.

    1. I agree. Making care homes focal points in the community, truly integrated and part of intergenerational living is what we should be aiming for. The Dementia4Schools project is helping to improve the links between schools and people with dementia, but lots more still to be done.

  2. "Neither my father nor us as his family were given a choice about dad’s care: his doctors decided that he would be a danger to himself and to others if he returned home after hospitalisation for a larger stroke that had led to a diagnosis of vascular dementia."

    It was exactly the same in my experience with my mum, Beth. It didn't stop me feeling guilty though - it's like my head was telling me one thing but then I felt a deep feeling in the pit of my stomach telling me that she should be home with me and with everything that was familiar to her throughout her whole life. It was a year last Saturday that mum passed away in the care home and I'm crying right now. Asked for my mother's medical records which I picked up the other day and was shocked to read that a review had taken place in January 2013, her care plan had been 'updated' to palliative and a DNAR note had been put against her without my knowledge - even though she was incapable of making that decision herself and as the only next-of-kin I had power of attorney over her affairs. My ultimate hope was that she'd somehow recover to a stage where I'd be able to give up work and look after her at home, but her death happened very unexpectedly and quickly. Part of me feels that if I had taken her out of the nursing home and I hadn't been able to meet her needs adequately and she'd had to go back in then we would have lost the NHS continuing care as putting her in a home would have then been my choice as POA on behalf of mum. As mum's late stage dementia was sudden-onset following a hip fracture we didn't have time to prepare for anything and she was still householder when it happened. Originally they wanted to take the house as an asset to pay for mum's nursing home fees (which put me in a very difficult position as I don't have anywhere else to live). However, when I got solicitors involved to look into the case, they called a medical review panel and it was found that she met the criteria for continuing health care. Like many people I was in a catch 22 but (also like many people) events overtook everything in a way that I didn't have the imagination to foresee. Sorry if that doesn't make a lot of sense - it was a complex story.

    1. Thank you for sharing your experience. Your story highlights a lot of the difficult emotional and financial issues when a loved one needs the support of a care home environment. I think most of us feel entirely unprepared for the many challenges that can arise when a loved one cannot live at home, especially if, as in your situation, your mother's health suddenly deteriorated.