Debate: Nursing with dementia

It is estimated that by 2025 more than one million people will be living with dementia in the UK. Those who are not directly affected will certainly know someone - or be caring for someone - who is. This resolution seeks to show that the RCN is an organisation that leads the way and becomes an exemplar for inclusion and support of people with dementia in line with the wider principles of our profession, not just in the care that we deliver, but in the way in which we work and treat our colleagues.

Clinical Psychologist Richard Taylor was 58 when he was diagnosed with Alzheimer’s disease. He gave up his practice and got a job as a lecturer at a University. He did not tell his employers about his diagnosis. For three years, his students received the highest grades in the department and he was voted lecturer of the year. More than 42,000 people in the UK have young onset dementia and many of them have much to contribute within their fields of expertise. But, like Richard, many of them will have to lie or hide their diagnosis if they want to continue working. In fact, the Alzheimer’s Society estimate that only 15% of people diagnosed before the age of 65 continue working. Currently, the onset of dementia will often signal the end of a nursing professional’s life and for staff working in very complex or high risk roles, this might be the right decision. However, there are numerous ways to work without putting patients at risk, like training, development, supervision of junior staff or providing support to colleagues in clinical settings. The NMC requires all registrants to be able to deliver safe and effective practice (with or without reasonable adjustments) and is clear that this does not mean an absence of health condition or disability.

Dementia is a disability covered by the Equality Act 2010. The Welsh Government is currently consulting on a draft national dementia strategy, due to close April 2017. The strategy’s themes include living as well as possible for as long as possible with dementia, the need for increased support in the community and more specialist care and support. And in the Scottish Government’s Proposal for Scotland’s National Dementia Strategy 2016-19, there is a strong focus on using a national and local human rights based approach to support people living with dementia at all stages of the illness and across all settings.

In Northern Ireland, the RCN has contributed to the regional dementia learning and development framework which was launched in September 2016. The RCN has also strengthened formal links with Dementia Together NI and the Public Health Agency.  The RCN have also delivered dementia training and currently work in partnership with a range of organisations to promote the nursing contribution to the care of people with dementia in Northern Ireland.

Some might ask why we need a policy specifically for people with dementia when we have robust systems in place which legislate against discrimination on the grounds of a person’s disability. It is because the person with dementia is often seen as an exception, tainted with the stigma of a condition which continues to be poorly understood and can be incorrectly compared to entering a second childhood. Few employers will consider the person with dementia as a productive member of a team. When Richard told his employers about his dementia, he asked them whether they would have employed him if they had known about it and they were unanimous in their response: “NO”.

We have to challenge this thinking; in our profession where there is so much scope for different ways of working and where knowledge and experience is so valuable, we should be embracing staff who develop dementia, allowing them to continue to contribute to delivering excellent patient care. Making that possible by providing sensible guidance for employers will help them to support their staff to work to their potential regardless of their disability. This guidance could also help managers and staff support a colleague in the often lengthy period before a formal diagnosis.

Apart from simply being the right thing to do, addressing this issue in a proactive way will send the right message to members about how nursing staff care for one another, how much we value our colleagues and the importance of keeping experience, knowledge and skills within the profession for as long as we can.