An estimated 800,000 people are living with dementia in the UK and this figure is predicted to rise to 1.7 million by 2051 (Alzheimer’s Society, 2014).
UK policy context is clear: dementia education needs to be improved (DH, 2009; 2015).
People with dementia are significant users of healthcare services, consequently there is a need to ensure that the future nursing workforce is skilled in providing high quality care to people with dementia.
”There is a need to ensure that the future nursing workforce is skilled in providing high quality care to people with dementia”
Deficiencies in both knowledge and skills of healthcare professionals were highlighted in the National Dementia Strategy (DH, 2009). Subsequently the Department of Health and Skills for Care (2010) concluded that lack of dementia education at early stages of healthcare training may be the most significant gap to address.
In an attempt to do just that, ’Delivering high quality, effective, compassionate care: Developing the right people with the right skills and the right values’ was published by the Department of Health in 2013. This mandate from the government to Health Education England (HEE) ensured that by September 2015 all undergraduate nursing courses included dementia in their curricula.
“Nurse educators faced challenges in integrating dementia care into the undergraduate nurse curricula”
However nurse educators faced challenges in integrating dementia care into the undergraduate nurse curricula. Collier et al (2015) warn of the risk that dementia education may become nothing more than a tick box exercise, with little impact on dementia practice if it is not effectively embedded into the adult nurse curriculum.
To ensure dementia education is effective, educators need to be able to help nursing students to understand its value to their current and future practice.
With the absence of a cure, arguably the overarching principle of dementia care should be to try and support people with dementia to maintain or improve their quality of life.
”To ensure dementia education is effective, educators need to be able to help nursing students to understand its value”
This is where the Time for Dementia programme comes in, which aims to personalise nurse education by focusing on the experiences of people with dementia and their carers rather than the diagnosis.
Time for Dementia Visits
In the Time for Dementia programme, adult, mental health nursing and paramedic students from the University of Surrey (and medical students from Brighton and Sussex Medical School) undertake a series of visits as part of a mandatory component of their curricula.
Pairs of students visit a person with dementia and their carer in their own home 3-4 times a year over a two year period. The aim of the visits is to personalise education through listening to the lived experiences of people with dementia to enable students to see the world through their eyes and relationships.
Rather than a disease-led medical model of nurse education the focus of the programme is a person centred model that concentrates on the needs of the person with dementia.
This, as argued by Willis (2015), demands greater flexibility and innovation in nurse education and curricula development such as the Time for Dementia programme.
Nurses continue to be the largest group of healthcare professionals in the UK. Broadening nursing curricula to involve the expertise of people with dementia and their carers is one way to help prepare our future nursing workforce.
In June 2016, the programme held its first inter-disciplinary conference, where 298 nursing, medical and paramedic students came together with participating families to share experiences about their learning from the programme.
Evaluation of the Time for Dementia programme
We are undertaking a robust mixed methods evaluation of the programme which includes assessment of student and family outcomes and the satisfaction of those taking part in the programme, as well as the outcomes for a group of comparison students.
Preliminary feedback from students has identified four key themes;
- increased awareness of the family perspective of dementia,
- development of skills,
- increased knowledge of dementia,
- and the integration of improved dementia care into practice.
Students have reported that they are more aware of how it feels to have dementia and its impact on carers. They have also reported increased awareness of the challenges faced trying to access services as well as understanding the wider impacts of dementia upon relationships and on physical health.
“Time for Dementia has certainly further highlighted the challenges they face upon a diagnosis, not only due to the illness itself, but due to socio-political issues affecting access to services and treatments for the individual with dementia and the carer”
- Mental health nursing student
Students have expressed that are more confident when working with people with dementia, in particular they feel able to communicate more effectively including discussing sensitive issues.
“Having more non clinical time with a patient with dementia, seeing them in their own home away from the ‘physical’ focus of the hospital forming professional relationships in a different way I am used to”
- Adult nursing student
Nursing students also report increased knowledge about dementia, specifically, quality of life and maintaining independence. This includes increased awareness about the progression of and different stages of dementia, with exposure to less common forms of the disease.
Finally, students have shared with us that their involvement in Time for Dementia has had a positive impact on their practice, in particular increased empathy towards people with dementia and their carers.
They feel that their practice has become more person-centred and they have been able to see the person with dementia, not just their diagnosis. Students have also reflected on the value of tools such as the “This is me” tool used in hospital settings to promote person centred care, consequently they are utilising this more routinely in their practice.
“I think it’s also very important to listen, be there and offer support and just be there to listen and show them that they’re not alone going through it because I think sometimes they probably do feel quite alone as the partner of someone with Alzheimer’s dementia, I say Alzheimer’s because that’s most but just to show them that, yeah, that they aren’t alone…”
- Adult nursing student
Time for Dementia will continue to be delivered collaboratively at the University of Surrey and Brighton and Sussex Medical School.
We will continue to evaluate the programme, comparing the quantitative outcomes of students taking part with students in our control groups (adult and mental health nursing, paramedic and medical students). We will also evaluate the longer-term outcomes for all participating student cohorts, people with dementia and their families.
Wendy Grosvenor and Dr Stephanie Daley
Alzheimer’s Society (2014) Dementia UK: 2014 edition. London, UK.
Collier, E., Knifton, C., Surr, C., (2015) Contemporary Issues: Dementia education in Higher Education Institutions. Nurse Education Today 35: 731-732
Department of Health (2009) Living Well with Dementia: A National Dementia Strategy, London, Department of Health
Department of Health and Skills for Care (2010) Working to support the implementation of the National Dementia Strategy project: Mapping existing accredited education/training and gap analysis report. London: Department of Health
Department of Health (2013) Delivering high quality, effective, compassionate care: Developing the right people with the right skills and the right values. A mandate from the Government to Health Education England: April 2013 to March 2015
Department of Health (2015) Prime Minister Challenge on Dementia 2015-2020, London, Department of Health
Willis (2015) Raising the Bar. Shape of caring: A Review of Future Education and Training of Registered Nurses and Care Assistants. Health Education England