Friday 15th April 2016
Mac Voice, the magazine for Macmillan professionals: Spring 2016
Lorraine Burgess on her role as the first Macmillan Dementia Nurse Consultant.
Dementia is one of the biggest challenges facing the health economy today. It is estimated that 24.5 million people in the UK – a staggering 38% of the population – know a family member or friend with dementia. It is a frightening condition that touches the lives of many of us. It is also now the most feared condition among people over 55 years in the UK  and the number one cause of death in older women. 
Cancer specialists are treating an increasing number of people who present with both cancer and dementia. Both conditions are primarily diseases of older people, with currently more than three in five cancers being diagnosed in people aged 65, and one in three people affected by dementia over the age of 65. It is estimated that 850,000 people in the UK currently have dementia. 
Becoming the first Macmillan dementia nurse
There is often poor recognition and understanding of the issues faced by people living with both cancer and dementia. Sadly, support is lacking in this area. With this in mind, Macmillan and the Christie Foundation Trust had discussions about creating a new nursing role, to improve care for people with this joint diagnosis. These conversations led to me becoming the first Macmillan Dementia Consultant Nurse in July 2013 as part of a three year project.
With joint funding from the Christie Foundation Trust and Macmillan, I work for three days a week at the Christie and for two days in the community within Central Manchester. The overall aim is to ensure that people living with cancer and dementia are supported physically, emotionally and psychologically, particularly when more complex issues arise: for example, the question of whether oncology treatment is in the best interest of a person with an advanced dementia.
Consent to treatment
One of the biggest challenges in treating someone with cancer and an advanced dementia is consent around treatment and whether it is actually in their best interest. If an oncologist or clinical nurse specialist has concerns about treatment or a person’s mental capacity to give informed consent, I can assist in the decision-making process. Networking and partnership working are imperative when these crucial questions exist around consent to treatment and the decision to treat. In addition, if there are concerns about a person who has cognitive impairment with no indication as to the cause, I can assist in performing cognitive tests to assess and aid diagnosis.
A multi-faceted role
My role in the Christie is in part clinical: providing advice and support regarding care and decision-making for treatment of people with dementia and cancer. It is also partly educational: supporting and facilitating staff to develop their skills and confidence in delivering care to people with both conditions. It also has a strategic element of developing services,with the aim to improve quality of care for people with dementia while also ensuring compliance with government targets and initiatives.
It is also vital that I ensure carers’ psychological and emotional needs are addressed, as these are too often ignored. The carers I support may be in a range of situations, including those who have cancer and are looking after a loved one with dementia.
Working outside of the Christie, the community part of the role aims to provide education in dementia care. I work to extend the knowledge, confidence and skills of health and social care professionals when they work with people who have dementia. I can do this through presentations, didactic teaching or bespoke training, as well as through joint working and mentoring.
The role also involves research. I evaluate the training sessions with health and social care professionals and look for ways to improve them. I am also looking into carers’ needs in detail. For example, we know that identifying pain can be problematic when caring for people with dementia and cancer. A small piece of research around the use of pain tools and dementia is one of my plans for the near future.
In 2014, Lorraine won the prestigious Nursing Times Nurse of the Year Award for her work in this role.
1. Department of Health. Dementia: A state of the nation report on dementia care and support in England. 2013.
2. Office for National Statistics. Main cause death: Mortality Statistics: Deaths Registered in England and Wales (Series DR,2013 Release). 2014. 3. Alzheimer’s Society. Dementia 2014: Opportunity for Change. 2014.