From London to Paris, Florence to Tokyo, the husband and wife team saw that some families were so desperate that they left both medicine and nursing homes and walked out of the house they had called home. They decided to open the doors of the room they had lived in for many years.
Some doctors are gaining respect for what they are doing for staff and patients
The idea of the dementia-friendly home is being tested in 10 nursing homes. This makes it the first time the concept of dementia-friendly care has been tested in nursing homes.
After travelling the world talking to families about their experiences of dementia, medicine and dementia care, and learning about the professionals who treat these clients, UCL biomedical researchers Bella Minichiello and Stanley Elliot have been toiling for years in research labs to create the care model they dream of.
The nurse-led model they hope to introduce gives visitors a voice in the care, so that people with dementia know who is there to assist them. “We want people with dementia to be able to share their stories, to talk about what helps them and what upsets them,” says Elliot.
They also want to cut the number of incidences of violence in dementia-friendly homes, where a health visitor is working with staff to ensure everybody is comfortable. “Dementia patients need a nurse and a friend,” says Elliot.
The philosophy of these medical professionals is that they are not blinkered by the apparent disease or the confusion and disruption these patients can cause. While some professionals have gained respect in their quest to be part of the solution to the problems of dementia, the dangers are many.
UCL dementia research group researchers Bella Minichiello, right, and Stanley Elliot, left, are working to develop an innovation that will allow staff and visitors to speak up about the care and benefits offered by a dementia-friendly home. Photograph: Paul Cleveland
The Knock health centre in Stoke-on-Trent is now offering a high-profile dementia-friendly service, where, on Thursdays, people are advised to leave their aids, but not their lucite frames and glasses, and share the house and their experiences with care workers. For the staff, this comes with ethical challenges, but so far they have no great hesitation.
“We want people to feel safe, relaxed and comfortable and we know we have the right to intrude on their private space,” says Lisa Brennan, the home’s midwife. “For us, it is becoming a very positive thing. What is more important is getting the right people in so the patients can access their supplies, but I am still trying to find my feet at times.”
Similarly, Claire, a care assistant at another nursing home near Bristol, admits she has had to learn to coax people into sharing their worries, but still offers these as sounding boards.
Admitting it can be strange to talk about yourself in a high-profile setting, Paul Wilkinson from Chelsea and Westminster hospital trust says when he talks to residents’ families about their experience they describe the kind of conversation they have been having with their loved ones. “I was quite surprised to hear that,” he says. “I knew that the dementia-friendly model of care offered the opportunity for families to discuss their feelings, but I didn’t realise how many were doing this.”
Elliot says it has helped his wife take a stand on the subject of doctors raising the alarm too early when dementia sufferers develop symptoms. In many cases, their fears are justified, he says, with cancer, stroke, accident or plane crash the leading causes of dementia.
“The point is that people with dementia often appear confused and if we jump the gun on it, we would be caught out by the unexpected as well as prematurely damaging our patients’ lives by giving them limited care and support,” he says.
Other developments in dementia care have proved controversial, such as the use of young carers or multidisciplinary teams. The knock centre and NHS nursing groups have developed strategies around mixing carers and their patients in their home. Such home-based practices have transformed patients’ and families’ lives.
John Redman, another member of the Knock team, says he never wants to be disillusioned when he talks to families. He believes the fact that some of these practitioners themselves have long-term conditions demonstrates the boundaries they are trying to break down. “People may be excited and sometimes naïve in trying new things. Once you hit a wall, your natural reaction is to give up, and that is something we don’t want to happen to our patients.”
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