Breaking through the culture of fear in dementia care
This is the Accepted Manuscript version of a Published Work that appeared in final form in the British Journal of Nursing, copyright © MA Healthcare, after technical editing by the publisher. To access the final edited and published work see http://bit.ly/1tSXqtF, Originally published April 2014
There’s something frightening about things we don’t understand. Dementia is, without a doubt, one of these things. Not only can it be terrifying for the people who experience its symptoms, whether or not they have been formally diagnosed, but dementia can also elicit fear in family members, friends, carers and health professionals.
Nurses in particular are often expected to be the always-nurturing caregivers who can approach patients about any subject in a comforting and caring way, and many times, they do. But despite this seemingly never-ending capacity to provide high-quality compassionate care, nurses are human. Your work is important and difficult, it can be tiring and draining, and can often put you in uncomfortable or frightening situations.
How comforting does it feel when a fellow nursing colleague admits to you that they too feel fearful of conditions they do not understand, that you are not the only one who worries about not being able to make a meaningful connection with your patients who have, in this case, dementia? This kind of anxiety is natural and only really demonstrates how very much it means to you to ensure you can connect with and care for your patients.
However, while it is natural to feel fear around conditions like dementia, the nature of the nurse’s role requires that this fear is faced head on and tackled. Breaking though this cloud of fear in dementia care is what is needed to ensure the patient will always come first and the only way to go about doing this is to keep learning about dementia, to keep exploring new ways of thinking about it, and importantly, to keep connecting with and caring for patients who are diagnosed with dementia in the same way as you would any other patient.
Dementia is a word used to describe a collection of symptoms. These could include memory loss, confusion, mood changes and difficulty with day-to-day tasks (Alzheimer’s Research UK, 2014). There are more than 800 000 people in the UK living with dementia and it costs the UK economy £23 billion every year (Alzheimer’s Research UK, 2012). Dementia affects both men and women and while it is far more common in older people over the age of 65, there are still more than 17 000 younger people in the UK living with a dementia diagnosis (Alzheimer’s Society, 2014).
Now these are just the statistics. Perhaps the more important thing to understand about dementia is that it can happen to anyone and, when it does, that person does not disappear. The misperception that people living with the condition are lost to it and that nothing can be done is a common and very dangerous one. It has resulted in vast underfunding into research for treatments as the UK Government devotes only 2.5% of its medical research budget to dementia (Alzheimer’s Research UK, 2012). Perhaps even worse, it can lead to health professionals, relatives and the public treating people with dementia as ‘dementia sufferers’, rather than as the whole people they are. There is a fog of stigma surrounding dementia, largely created by the natural fear that arises from a lack of understanding. Someone with dementia may not always remember things about their lives or what they were doing earlier in the day, but this doesn’t mean that their personalities, emotions and capacity to experience joy in the here and now does not remain largely intact.
Until now, dementia care has mainly focused on helping people to piece together memories in an effort to retain as much of their identity and life as possible so they can make the most of their experiences and relationships. However, one of the central themes at the launch of the Red & Yellow Care service hosted by Baroness Greengross at the House of Lords last month took an opposite view. The realisation that perhaps memories are overrated inspired psychiatrist and co-founder of the service, Bahbak Miremadi, to shift toward encouraging people with dementia to actively engage in the moment and enjoy it as it happens rather than pushing them to remember what has passed. The launch was attended by some 200 nurses, doctors, policy makers and people with dementia, among others and featured talks on the essential question, ‘what does a good life with dementia look like?’ (ESRO, 2014).
Deborah Sturdy, Nursing Director of Care for the service, said it’s all about a positive experience of living with dementia. ‘It’s a beginning of a different part of your life as opposed to an end,’ she said. Deborah and her team of nurses spoke about the importance of integrated care for the patient and the crucial role of the nurse. ‘The nurse is a very important role in terms of continuity for the person with dementia and their family throughout their journey from diagnosis through to end of life,’ said Deborah. ‘That role in continuity is critical not only in terms of dementia but the other comorbidities and complex health issues that often arise for people during the course of their journey and the nurse is in a unique position to develop a strong relationship with patients, families and carers and to help them negotiate through complex care pathways’.
Health Secretary, Jeremy Hunt, who recently announced ambitions for dementia after the G8 dementia summit, was also scheduled to attend the event but cancelled. It was, however, encouraging to meet Madeleine Phipps-Taylor, Senior Policy Advisor for Number 10 Downing Street, who spoke to myself and a colleague about how we might realistically move from getting people with dementia to sit down and do a collage toward leading active fulfilling lives, bearing in mind the potential health and safety implications.
No one has all the answers but the important thing is that we be willing to ask these questions, to entertain new ways of thinking about dementia care and, most pertinently, to think about how we might actively improve the quality of life for people living with dementia. Central to this is promoting understanding and breaking through fear within health care, the community and the families of those living with dementia. The focus should always remain on patient-centred care but may well shift from the consumption and retrieval of memories to the ultimate living of life. I think it’s fair to say that too many of us are so busy snapping photos and updating our social media statuses that we forget to experience the here and now. The people with dementia who are doing this can serve as inspirational role models, not only to others with dementia who can begin enjoying their lives in this way, but to all of us who should be doing the same as well.
Alzheimer’s Research UK (2012) Dementia Statistics. http://tinyurl.com/pxdx5gy (accessed 31 March 2014)
Alzheimer’s Research UK (2014) Dementia Information. http://tinyurl.com/pae8uqv (accessed 31 March 2014)
Alzheimer’s Society (2014) Younger people with dementia. http://tinyurl.com/amoltpg (accessed 31 March 2014)
ESRO (2014) A good life with dementia. http://tinyurl.com/q2dtcll (accessed 31 March 2014)