Living well as dementia progresses: helping carers across the world to feel more prepared and supported

Dr Marie Poole is a Research Associate at Newcastle University. She has been working with a team of researchers to improve end of life care for people with dementia and their families, through the project: SEED Newcastle University. She will be speaking at the upcoming BGS Spring Meeting, 10 - 12 April in Cardiff. She tweets @mariepoole77

As an alternative way to share research findings with those who are most likely to be affected by dementia, the SEED Newcastle University team developed a free, online course: Dementia Care: Living Well as Dementia Progresses. The course is aimed at family carers who are supporting someone in the more advanced stages of the condition. Watch our course trailer to find out more!

To date, almost 1000 learners from across the globe have signed up. Although the majority are from the UK, we have also reached people from over 50 countries across the world. Interestingly, over half of those who have signed up are over 50 years old, and a quarter of these are over 65, which hopefully continues to challenge assumptions about older people shying away from online activities.

Each week, learners can find out about a key area of living well as dementia progresses:

• Week 1: Understanding dementia as a progressive illness and planning for future changes (including decision making).
• Week 2: Recognising and responding to changing cognitive, emotional and physical needs to ensure comfort as dementia progresses.
• Week 3: Encouraging carers to understand their own needs; including how to deal with difficult emotions and how they might feel better supported and equipped.

Over the three weeks, people complete the course at their own pace. This can be in small ‘bitesize’ chunks, which may make it easier for carers - who often have little free time and many responsibilities - to take part. As an online course, people can learn at any time of the day or night – enabling flexibility around commitments and supporting global participation.

The aim is to help carers feel prepared, confident and supported as dementia progresses. Although developed with family carers in mind, practitioners have also endorsed the course for health and social care professionals, suggesting that professionals such as nurses and care home staff in particular would find the course beneficial. Advantages include supporting professional development - building their own knowledge, as well as being able to signpost the course to family carers. The course also aligns with key UK government guidance on dementia care.

Learners can watch videos, take part in quizzes, read articles based on our research, and are invited to share their own views with other learners. Through short videos, Libby, John, Val, Peter and Joan share their experiences of caring for someone as dementia progresses. These are powerful accounts which are bound to stir up some strong emotions. They talk about important issues including how the person they care or cared for changed, how their lives have changed too and how they have dealt with this. They share their ups and downs with learners, describing many challenges but also uplifting moments too. One example comes from Libby, whose father and mother both have dementia. Libby recounts how she recently enabled her mother, father and the rest of the family to get together at her father’s care home to celebrate a landmark anniversary. She describes how they listened to music, ate cake and enjoyed the time she had with her parents – paramount to both their wellbeing.

Health and social care professionals also relate their involvement of supporting people with dementia and their families as the condition advances. Representing disciplines of general practice, palliative care and dementia care, they provide information and advice which we hope will help carers to feel enabled and empowered to seek help.

We aim to make the course an engaging learning experience with a practical focus. For example, in week 2, we focus on comfort care planning and the daisy template to encourage carers to make plans which support the changing emotional and physical wellbeing needs of the person with dementia.

We expect to learn a lot from the people who join the course and are excited to find out their views and experiences. We hope that the interactive elements will encourage people to explore tricky emotions associated with caring for someone with a life-limiting condition.

The course launches on 18^th March 2019. At the BGS Spring Meeting in April this year I will present details of how and why the course was developed and share content and early findings.

We hope that the course is thought-provoking, informative, and most importantly useful for anyone who supports someone with advancing dementia. Even if you do not actively care for someone with dementia, you will probably know someone who is affected by the condition. Why not sign up to the course and learn more about living well as dementia progresses?