Zoe Harris’s husband, Geoff, had dementia and was unable to communicate his basic needs to caregivers. This had serious consequences at times, as when he spent 72 hours in respite care to give Zoe a rest from taking care of him at their home in Horsham, about 60 kilometres south of London.
“Geoff drank his tea black, but the default in England is milky tea,” Zoe says. “He actually became very seriously dehydrated as a result of spending a weekend in a care home, where they knew nothing about him, and ended up essentially losing the ability to walk because of that dehydration.”
After Geoff started living in a care home full time in 2010, Zoe began sticking Post-it notes on the wall beside his bed to help caregivers know his basic preferences and things he would like to talk about.
“That eventually led to a wall chart that I laminated, so I could update it whenever I wanted, and we used symbols so the staff could find the information quickly and easily,” Zoe says. “And it wasn’t to replace the care plan, but those can often end up being over 100 pages. And the reality is care staff don’t have time to read them.”
These details might seem unimportant, but they contribute to building a strong relationship and creating trust between the patient and caretaker.
“This was just the pertinent facts that they needed to know about him, and to help them develop a relationship with him,” Zoe says. “And when the care manager said, ‘Can I have some of those for other residents?’ I realised that actually this simple tool had the potential to improve the care for thousands of other people who were in the same position as Geoff.”
That’s how Zoe started MyCareMatters (previously Care Charts UK), a social enterprise organisation improving the care of people living with dementia and helping others who cannot communicate for themselves in a care setting. The MyCareMatters Care Chart has been adopted by more than 1,400 care homes in the United Kingdom.