Imagine facing the prospect of a hospital stay. What plays on your mind? The prospect of pain, poor food, disturbed nights, being lonely, scared of an operation? Now imagine facing that as one of the 50%* of people in hospital with a cognitive impairment, unable to communicate your needs, ask for pain relief, unsure why you’re there, where your loved ones are and when – or whether – you’ll be back in your own home.
People living with dementia tend to have significantly worse outcomes than average as a result of a stay in hospital. They might stay in up to four times longer, have far greater risk of malnutrition and dehydration and are more likely to experience anxiety and confusion. Their chances of returning home are much less than for someone without a cognitive impairment. Dementia is unlikely to be the reason they are in hospital, but it is often the cause of them remaining there. It appears that when communicating is a challenge, it can massively reduce that person’s chances of a good outcome.
When researching how we might improve the experience of a hospital stay for people with dementia, I started to look into the issues that matter most to patients whilst in hospital. It turns out it’s not the medical care we are concerned about. We expect, and usually get, expert care for our medical ailments. What we feel we don’t get enough attention for are the ancillary issues; these can generate such negative or positive emotions they have an impact on how successfully or otherwise we heal.
As part of that research, we took a stand at the Alzheimer’s Show in 2017, covered all the walls in blank white paper and invited visitors to the stand to share the one thing that would matter most to them during a hospital stay. We got 100s of comments, encompassing everything from food and drink to being called by their preferred name and being allowed to get a good night’s sleep. The discharge process came up quite often and wanting to know that staff had had dementia training. But the topic that came up time and time again was variations on being recognised as a person. People want person-centred care, to be included in decisions, to be treated as a person.
The word cloud shown reflects those comments, and you can see that person, respect, dignity and similar came up time and time again.
It’s exactly what Bernard Lown, the American cardiologist and inventor of the defibrillator, says in his fabulous book, The Art of Healing: “The patient desires to be known as a human being, not merely to be recognised as the outer wrappings for a disease.”
He talks about how, with the advances in science and medical knowledge, we are increasingly prone to treating a patient’s individual biological parts, when, he suggests, a doctor should be caring for the whole person and not merely treating the illness.
Research does support this whole person approach: trials have demonstrated how holistic care can help people heal more quickly, that happy patients make a more rapid recovery.
How then to ensure that everyone interacting with the patient in the bed has the opportunity to learn about the whole person, to get a sense of all their needs: emotional, social, economic and spiritual, as well as the physical?
We looked at the various tools available to help people share their needs and preferences and identifed four shortcomings common to all. They tend to be too long, so staff struggle to find time to read them. They get filed, so they don’t get seen by the people spending most time with the patient: the health care professionals, porters, housekeeping staff, volunteers. They get lost, so that families who have put effort into completing them wonder why they bothered. And they are not readily transferable between care settings.
The Remember-I’m-Me Care Charts, already adopted by over 1,200 UK care homes, overcame two of those shortcomings. They offer a quick facts-at-a-glance view and, because they hang behind the bed, can be seen by everyone interacting with the patient. But they can also get lost and are not easy to transfer. To address those shortcomings we turned to the internet, ensuring that a person’s Mycarematters profile is accessible in any care setting, and we provide hospitals using the Mycarematters System with paper charts for people not wishing or unable to use the internet.
“It makes Mum a person again,” commented the son of a lady with advanced dementia within minutes of her Mycarematters profile going up behind her hospital bed. “I see my patients differently,” said a health care assistant.
NHS Trusts, care homes and people being cared for in their own homes are now adopting Mycarematters as a simple and cost-effective way to share a person’s non-medical information with all those interacting with them. For further information email firstname.lastname@example.org.
*Up to 50% of people in hospital at any one time have some form of cognitive impairment.