How can we raise awareness of the barriers faced by people living with dementia, who are trying to get treatment?

Dr Clarissa Giebel from the ARC NWC Health and Care across the life course theme has been working on a board game that aims to tackle these inequalities.

Over a million people are estimated to live with dementia across the UK. More than 700,000 unpaid carers support them. Accessing a diagnosis, and care afterwards, is often subject to various barriers for people with dementia and their carers.

These can include:
where people live
their ethnic or socio-economic background
their age and gender
dementia-specific characteristics, such as their dementia subtype or whether they have an unpaid carer system-level issues, such as a lack of health and social care link-up, lack of information, and lack of a link person after a diagnosis

These inequalities have been highlighted in the literature, and in recent reports from Alzheimer’s Disease International and the Alzheimer’s Society. But little is being done to overcome them. We are not doing enough to educate the general public, professionals, and those living with or caring for someone with dementia.

Designing the Dementia Inequalities Game
Our Dementia Research Group at the University of Liverpool wanted to try a different approach in order to disseminate evidence on dementia inequalities. We decided to co-produce a game that enables learning and socialising at the same time.

Funded by the Wellcome Trust, we hosted four virtual and in-person workshops with 40 people living with dementia, unpaid carers, health and social care professionals, and third sector representatives. In the first two workshops, attendees were asked to discuss inequalities and their own experiences of diagnosis and care. Afterwards, they were provided with a blank virtual canvas asking them for ideas on how an educational game should be designed.

Based on these workshops and discussions, our team went away to produce a very basic sketch of the potential board game. Then, at workshop 3, they asked attendees to prioritise the highlighted inequalities, and match them to the game. Attendees were also asked to advance the design of the board.

We then worked with a game design company to develop the game, and the prototype was tested by attendees at workshop 4.

It was crucial to design the game with people who live with dementia, as well as professional and voluntary experts. That way we could make it user-friendly and include key aspects of the topic. The game is suitable for anyone. It will be of particular value to health and social care professionals, and those training to become care professionals. It is now available for sale via the Lewy Body Society.

How the game works
The game can be played by 2 to 6 players, either as individuals or in teams. Players roll the dice for this snakes-and-ladders-style game to move around the board.

The first half of the board depicts the pre-diagnostic stage, and the second half the post-diagnostic journey. When players land on an inequality card square (depicted by a scale), they pick up a card. This either gives them a “barrier” (e.g. “Your GP doesn’t recognise you may have dementia as you are aged 55. You are not being referred for a specialist assessment. Move 3 steps back”) or a “facilitator” (e.g. “You have a carer who knows how to navigate the care system. Move 2 steps ahead”).

Players can also come across general question and activity fields, where an opponent reads out the question or activity to them. The game lasts around 45-60 minutes, depending on how many players take part.

Does the game raise awareness?
More than 50 members of the public aged 18 and over took part in a gameplay workshop at the National Museum of Liverpool in October 2023. Our findings show that playing the game significantly increased their knowledge about dementia and associated inequalities.

We are currently evaluating the game in undergraduate and postgraduate students in psychology, occupational therapy, physiotherapy, orthoptics, nursing and radiography. We are seeking funding to evaluate its impact on health and social care professionals.

Early analysis of the data from over 250 students shows significant improvements in knowledge about dementia inequalities as a result of playing the game. We are also actively going out to the police force and other regional organisations to host gameplay workshops.

The game is not restricted to the UK. With a team from Ireland, we are currently co-producing a modified Irish version, and are actively working with collaborators across Europe to adapt the game to different languages and cultures, including German, Portuguese, Italian and Romanian.

Dr Clarissa Giebel is Senior Research Fellow in the Institute of Population Health at the University of Liverpool, and Older Adult Subtheme Lead at the NIHR Applied Research Collaboration North West Coast. She leads the Institute’s Dementia Research Group and is a NIHR School for Social Care Leadership Fellow. Dr Giebel is leading national and international research on inequalities in dementia, and is the Lead of the European INTERDEM Taskforce Inequalities in Dementia.

Learn more about the game here.