Should personal information be on view?

The carer’s eyes lit up with delight as he spotted that Geoff had been an RAF fighter pilot in his early career. John was obsessed with planes and he chatted away to Geoff about things that meant nothing to me but clearly sparked a response in Geoff because he was beaming and nodding his head.

I’d always felt that Geoff, despite his dementia by now being quite far advanced, was able to understand more than people thought. Because he was generally non-responsive people stopped trying to engage him in any meaningful way, but here he was, becoming quite animated, lifting his head up and making eye contact.

John only knew about Geoff’s flying career because I’d made a note of it on the Care Chart on his bedroom wall. Until I’d put the chart up that kind of information would have remained buried deep in his 100 pages plus care plan in a file on the shelf in the manager’s office. I’m sure John would have searched for a way to engage with Geoff because he was that kind of carer, but this give him an instant way in, and I suspect both of them will have experienced a feeling of wellbeing that lasted long after the brief conversation ended.

It is experiences like those that lie behind our insistence that a person’s Mycarematters profile is visible to all those interacting with them, whether in hospital, in a care home or in their own home. Geoff was in a care home and his care chart was on view to all staff members and visiting professionals. It was particularly helpful to bank or agency staff who had little opportunity to get to know the people they were caring for.

It is even more important during a hospital stay, which can be a highly stressful and confusing experience for someone living with dementia, to provide staff with a way to meaningfully engage with the person they are caring for. Mycarematters enables staff to see the person beyond the dementia, but if that information is hidden away in the file from the people that really need it: the housekeeping staff and volunteers as well as health care assistants, nurses and doctors, those opportunities for meaningful engagement that result in a release of healthy endorphins aiding a quicker recovery, will be missed.

This approach has recently been endorsed by NHS Improvement in their Dementia Assessment and Improvement Framework which recommends that key at a glance information is displayed above the bed (with person’s or carer’s agreement): preferred name, likes, dislikes and enhanced care needs (without breaching confidentiality).

Display Board website 1118That last point about confidentiality seems to be a bit of a challenge: can one display this information and not breach confidentiality? We believe we do achieve that with Mycarematters. When displayed with something like our Display Board, a person’s Mycarematters profile is legible only to those standing reasonably close. In a ward environment it cannot therefore be read by people just passing by.

MCM TNV Image websiteFor those who want still further confidentiality we offer the Twist-N-View hanger which displays an attractive picture on the front with a pocket for a person’s Mycarematters profile on the reverse. So the information is readily to hand but can be turned to the wall when not needed.

We heard a lovely story from one of the first hospitals using Mycarematters, where a member of housekeeping staff serving tea to an elderly lady living with dementia noticed on her Mycarematters profile – on display behind her bed – that she had been brought up on a farm. The member of staff had also been brought up on a farm and spent a delightful few minutes reminiscing with the lady about old times. The details of that conversation may have slipped from the patient’s memory within minutes, but the sense of wellbeing will have remained with her for a lot longer. Those precious moments don’t happen when information is buried away in the file.

Link / back to Mycarematters website.

Zoe Harris cared for her late husband Geoff at home for about five years before he moved to a care home for what turned out to be the final 13 months of his life. It was his experience of hospital stays, respite care and his final months living in a care home that led Zoe to develop the Remember-I’m-Me Care Charts and then the online service Mycarematters.

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