How a HUG can help people with dementia
People living with advanced dementia often become withdrawn, depressed and 'locked in'. But play can offer a way back out, according to a remarkable multidisciplinary project based at Cardiff Metropolitan University.
Thelma was considered to be coming to the end of her life.
In her late 90s, she suffered from advanced dementia and was largely bedridden. She barely opened her eyes and rarely spoke.
“When we visited, the carer said 'the thing this lady needs is a hug', and so we thought, well if that's what she needs, that's what we'll make for her,” says Professor Cathy Treadaway, leader of the LAUGH (Ludic Artefacts Using Gesture and Haptics) project, an international collaboration with researchers at the University of Technology Sydney, Coventry University and Cardiff Metropolitan University.
The LAUGH project had developed a series of playful devices that amuse, distract, comfort engage, bring joy, and promote ‘in the moment’ living for people with late stage dementia, and Professor Treadaway knew that they could help Thelma.
“We had involved a lot of dementia experts in our design workshops, and one of the key things that had come up in discussions had been the need for nurturing,” she says.
“Hugs seem to fulfil two roles in this regard: they involve you in giving the hug, but they are also reciprocal. Our design was focused on creating an object that Thelma could hug and that would hug her too. We settled on a soft baby-type type shape, with weighted limbs; it was a very experiential thing and more about what it feels like than looks like.”
HUG also has electronics inside that personalise it – in Thelma's case providing a whole playlist of Vera Lynne songs and an electronic 'beating heart'. Earlier this year the LAUGH HUG was selected for the final in the Outstanding Dementia Care Product 2018 category at the National Dementia Care Awards 2018.
“When we gave Thelma her HUG, although she didn't open her eyes, she nestled her head into it – clearly enjoying it,” says Professor Treadaway. “And when the carers took her back to her room and tried to take it off her, she starting crying, so they left her with it and she had it all the time.
“When we returned after a week her eyes were open and the carers said it was amazing how much she had improved. After a month she was eating and speaking more, and had been socialising with other residents. After three months she was like a different woman and her health and quality of life really improved - she lived for a further 9 months.
“Perhaps the most significant thing was that she didn't fall after being given HUG and she was falling all the time beforehand. Although it's just a prototype – it's only been evaluated with one person – we believe HUG has a lot of potential.”
LAUGH HUG fills a gap in care. Although scientists are working hard looking for a cure for dementia, until they do, there are an estimated 46 million people around the world living with dementia. Many of them have very little to do and they are often agitated and distressed.
“Finding something for them to do that connects them with who they are and the people around them is very important,” says Professor Treadaway. “That's what our products aim to do: provide fun, joy and pleasure and re-connection.
“We focus very much on engaging the senses. Most people in the late stages of the disease are chair or bed-bound, so we have designed hand-held or wearable things that support their wellbeing. If you can increase someone's wellbeing it often impacts on their health in a really positive way.”
Another significant outcome of HUG was the way it helps visiting someone with memory impairment. Keeping conversations ‘in the moment’ can be challenging and it can be difficult to know what to talk about. HUG can provide a focus for conversation.
“The thing about laughter, fun and joy is that they benefit our health,” says Professor Treadaway. A lot of people with dementia get very depressed. But having a laugh, sharing a smile, can make all the difference.”
The key to the project’s success has been keeping the individual living with dementia at the heart of the design process. “By designing highly personalised objects that maintain a person’s sense of identify we aimed to overcome the stigma associated with playfulness. We have tried to understand the individual person, their preferences and lived experiences that have shaped who they are – even if they can no longer remember those experiences.”
For example, LAUGH researchers developed a ‘steering wheel’ for a former roadside recovery driver and mechanic. The Steering Wheel provides the sensation of driving a car and has slight vibration to imitate the running engine; it also has working indicators with lights and a tune-in radio that plays a personalised playlist of favourite songs.
“It was a huge success. He may not have been able to remember driving, but somehow the experience was still there with him,” says Professor Treadaway.
The LAUGH project is being continued with further funding from the Welsh Government in collaboration with NHS and Sunrise Senior Living. The next phase of the research will include a much larger study to evaluate the health benefits of HUG with people living with dementia and post stroke cognitive impairment. The team will also continue to develop new playful products using the Compassionate Design methodology that they have developed through the research.
Find out more at www.laughproject.info