The pivotal role of carers in people with dementia cannot be over emphasised and is of profound importance. When we were focusing our work following on from the National Dementia Strategy in 2009, we made a decision to concentrate on four areas. The one which underpinned the three others (improving diagnosis rates, reducing antipsychotic use and hospital care) was support for carers. There are three areas where I would like to highlight the key role of carers.
Firstly, we know that supporting a person with dementia is one of the most stressful things someone can do. There have been a series of studies over the years, in some of which I have been involved, that have measured the level of stress, looked at specific causes of it and have tested, in clinical trials, ways of reducing that stress. For example, in terms of the reasons for stress (and I hope that this does not sound like coming from an academic ivory tower), it has been shown that when a person perceives that another’s action is under their control, then the response to that will be different than if it was felt it was outside their control. In other words, it is likely that if a response to behaviour such as wandering or aggression focused around greater understanding, this would therefore be less stressful for the carer. In practical terms, this has the implication that, as part of an educational package for carers, it is important to get the message across that many of the behaviours in people with dementia are as a result of the dementia and the resultant damage to the brain, and are not therefore within the person’s control. This can form the basis of many of the education and learning programmes that are being developed.
Secondly, in terms of policy initiatives, we are constantly guided by input from carers and people with dementia. I can’t think of any advisory body or group on which I have sat, where the presence of a carer or a patient has not materially added to the discussion. Also, the best questions I get asked when I go around the country are always from carers.
Thirdly, I have learned, and will continue to learn, a great deal from carers in my clinical practice. Aside from being regularly humbled by the stories that people tell me about what they do, day in and day out, some of the most innovative interventions I have seen come from carers. For example, it was a carer who alerted me to the anti-agitation effect of popping bubble wrap. The intense and supportive relationships people have is inevitably heartening to hear – someone told me once that in an attempt to persuade his wife to give up smoking, he promised to take her a cup of tea in bed every day for the rest of his life. He has been doing that ever since and the offer was successful at getting her to stop.
One of the early techniques I learned was in a person with misidentification and duplication (the belief that a person’s possessions are duplicated – for example that they have two houses). This can be quite a distressing symptom and people can be upset when they think they are not in their own home but in one which looks similar in many ways. I met a lady’s daughter who had suffered from these beliefs and her remedy was simply to take her mother for a short drive in the car, then they would arrive back at the same place and she was quite content.
The reaction to distressing symptoms can sometimes bring to the fore aspects of the relationship people have had before the onset of the dementia. I once treated someone who felt her husband had been replaced, sometimes, by an imposter, saying she had two husbands. She actually referred to them as Arthur 1 and Arthur 2 and dealt with the situation with remarkable equanimity. This was a testament to the loving relationship they had, and something which could have caused real tension between the couple was not seen as a problem – in many ways, it was something that was often joked about.
The Dementia Action Alliance launched the Carers Call to Action (CC2A) on 20 November 2013 (www.dementiaaction.org.uk). The vision is that carers of people with dementia:
- have recognition of their unique experience
- are recognised as essential partners in care
- have access to expertise to be effective carers for the person with dementia
- have assessments and support to maintain their own health and well-being
- have confidence that they are able to access good quality care, support and respite service.
The aim is to engage with Health and Well-being Boards and Clinical Commissioning Groups to ensure sign up to the vision.
- Family carers – ‘for the love of it’ (nhsiq.wordpress.com)
- A personal reflection on new beginnings after half a century of caring (nhsiq.wordpress.com)
- Three into one doesn’t always go