From dice to diagnosis and beyond: the dementia inequalities board game

Top academic researchers are rolling the dice on a board game demystifying dementia difficulties for carers and care professionals.

The Dementia Inequalities Game has been developed by the University of Liverpool, the Lewy Body Society and SURF, in collaboration with people who have lived and professional experience of dementia.

Dr Clarissa Giebel, Senior Research Fellow at the University of Liverpool and the NIHR Applied Research Collaboration North West Coast, leads the dementia research group at the Institute of Population Health, studying the inequalities in dementia diagnosis and care.

Dr Giebel said: “Dementia is a major health challenge, particularly for women. There are an estimated one million people currently living with the condition in the UK and this number is rising. Getting a diagnosis can be incredibly difficult, and so can getting access to dementia care afterwards.

“Dementia inequalities can be an abstract concept. That’s why we wanted to develop something that is engaging and sociable, to learn about this difficult concept easily.

“We loved the idea of old-school board games because they are so social. They encourage discussions about experiences that you wouldn’t get from an app or anything online.”

The game, for two-six players or teams, is a roll-and-move game that promotes better understanding of the many facets of life with dementia.

Dr Giebel said: “Players are trying to get a diagnosis and ultimately to live well with dementia. We were very keen on having the first half of the game including difficulties pre-diagnosis and the second half with the different barriers that come after the diagnostic process.”

Progress through the game is interrupted by a series of barriers or facilitator squares.

Dr Giebel explained: “Hitting a barrier will mean moving a few steps back in the game as you would feel in life. The player will pick up a card which might say o “You live with Lewy body dementia. There are no suitable services and support groups available to you that support your needs”. Facilitator cards may offer “You have an unpaid carer that knows how to navigate the system. Move three steps forward.”

Quiz questions, covering topics ranging from symptoms to power of attorney, encourage players to consider and discuss the types of dementia, including Lewy body dementia and the cost of care.

The game was in development for nine months with Focus Games, with significant care taken in an inclusive design that is representative of everyone who may encounter dementia.

An orthoptist was drafted in to ensure the soothing colours and clear design were suitable as people with dementia can experience visual impairments.

With funding from the University of Liverpool and the Wellcome Trust, the game was trialled at workshops in person with people living with dementia, unpaid carers, health and social care professionals and third sector representatives.

“It was just beautiful to see the different stages of co-production. Even unpaid carers who played it were acknowledging that they knew a lot, but not some of the many pieces of information that the game offers.

 “We are now seeking to use it as an educational tool for health and social care professionals, and have tested this already in over 200 health and allied health professional students at the University of Liverpool. We’ve just applied for funding to run gameplay workshops within the NHS, care homes, daycare centres and homecare agencies.

“This is a much more sociable and engaging way to learn about dementia inequalities than via a webinar or book, and staff might not normally have the time and space to come together and share their caring experiences.”

The team is adapting the game for Ireland, has plans to take the project Europe-wide, and a children’s version is already in development.

Dr Giebel said: “Hopefully when we teach kids about dementia there will be much less stigma within society when they grow up. We are working hard on raising awareness. With this game, we want to reach the people it is going to help practically.”

The Dementia Inequalities Boardgame is exclusively available from the Lewy Body Society online shop with all profits going to The Lewy Body Society, SURF Liverpool, and future dementia research.