Dementia is a term used to describe a set of conditions that causes difficulty in memory, communicating, and managing everyday activities. Dementia occurs due to disease or damage to the brain. The most common type of dementia occurs because of Alzheimer’s disease.
More than 850,000 people have dementia in the UK. Dementia cannot be cured, and medical treatment is limited. Most people with dementia need help and advice from doctors and other health professionals during their illness. However, people with dementia often feel that the healthcare they receive is worse than people without dementia. For example, some people with dementia feel misunderstood by doctors and nurses.
It is important that all healthcare staff have good attitudes and understanding of dementia. Most healthcare students will work with people with dementia when they finish their university education. Learning about dementia at university can be difficult. During their education students do not have the opportunity to spend time getting to know people with dementia. This makes it challenging for students to understand how it feels like to live with dementia. Without this understanding, it is difficult for some students to have positive attitudes about people with dementia.
To help medical students gain better understanding of dementia, BSMS designed a new educational programme. They worked with Alzheimer’s Society and local NHS trusts to create the Time for Dementia programme.
In 2015, medical students at BSMS and nursing and paramedic students at University of Surrey started taking part in the Time for Dementia programme. Time for Dementia is a mandatory part of the student’s course. It involves pairs of students visiting a person living with dementia and their carer in the community. The students visit the same family six times over two years. Students spend one to two hours talking to the person with dementia and their carer. By visiting people with dementia in their own home over a long period of time, students build a friendship with the family. Over time students develop a better understanding of what it is like to really live with dementia. This helps students to develop better attitudes about dementia. As a result of COVID-19, students could not visit the families in person. To continue their learning, students met with families online.
You can hear from students and families taking part in Time for Dementia below.
Taking part in Time for Dementia has helped many students understand what it is like to live with dementia. A student nurse told us: “We often disable people with dementia in practice, assumption is they cannot perform their own care tasks. Visits have helped me to reframe dementia…focus on the person more and what is important to them. Staff in practice often don’t know how to care for dementia, many just try to ignore it. Programmes such as this illuminate the experience of dementia…talking about it helps reduce stigma…gives an opportunity to slowly face our misconceptions and gives the next generation of healthcare professionals a better understanding of dementia.” (University of Surrey, nursing student).
Taking part in Time for Dementia has helped students understand that some stereotypes they once had about dementia were incorrect: “…they have shown me how much the person can still do and enjoy and how they can develop skills and interests.” (BSMS, medical student). Incorrect stereotypes about people with dementia can make it difficult for students to understand the person. Getting rid of those stereotypes helps students to really see the person, and not just their dementia. This is an important skill that can help students provide better care in the future. This is explained by Christine, who lives with dementia and takes part in the Time for Dementia programme.
Watch Christine speak about dementia below:
Spending time with a person with dementia has helped to improve student’s communication skills. Many students realised that they need to speak slower and allow time for the person with dementia to respond. Students learned about the carer’s role and the importance of involving them when helping people with dementia. Although dementia cannot be cured, students realised that they could help people with dementia in other ways, “I previously placed too much emphasis on the medical treatment of dementia. The psychosocial aspect of care may actually have the biggest impact on quality of life and outcomes for the patient.” (BSMS medical student).
More than 1,000 medical students at BSMS have taken part in Time for Dementia. The programme has also been introduced to other universities in England. More than 3,000 nursing, paramedic, occupational therapy, radiography, speech and language, and physiotherapy have taken part in Time for Dementia. These students attend University of Brighton, University of Surrey, Canterbury Christchurch University, and University of Greenwich. Time for Dementia will be introduced to University of Exeter, and University of Plymouth later this year.
Like dementia, people with autism experience care that lacks understanding, and positive attitudes. Time for Dementia has helped to improve student attitudes towards dementia. Therefore, the BSMS team felt that a similar programme might help improve awareness of autism. Later this year Time for Autism will be introduced to medical students. The students will visit a family (parent and child) living with autism four times over eighteen months. This experience may help students to understand what it is like for children to live with autism, and what it is like to care for a child with autism. Having this understanding may students provide better care to people with autism in the future.
Having better understanding of the experience of living with a long-term condition is important for students to develop the positive attitudes needed to deliver good quality care. Educational programmes that allow students spend time with people living with those conditions may increase this understanding. We are hopeful that better informed students will provide better care to people living with long-term conditions like dementia and autism in the future.
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