Should we be planning for what happens after death, or before?

We carried out a survey recently, amongst people living with a life-limiting disease such as dementia (and carers, on their behalf) on their attitudes, knowledge and any actions they have taken regarding their future care. We were particularly interested to find out about the barriers that many of us experience in moving beyond “thinking about it” to actually specifying and recording how we want things to be done for us when we are no longer able to do them for ourselves.

It is a relief to see that most people living with dementia have at least written a Will. Unsurprisingly, 84% in this cohort is well above the 46% (1) of adults across the UK who have done so, and an indication that people do recognise the importance of putting their affairs in order when they have been diagnosed with a terminal illness.

More worryingly, only 16% reported having a full set of advance care planning documents in place. In other words, we place more importance on leaving our instructions about what is to happen after we die, than planning for the days, weeks, months and even years when we might live in a state where we have lost the ability to communicate our wishes.

The survey also revealed that whilst 70% of people who are living with dementia have a financial lasting power of attorney in place, only 64% have arranged a healthcare lasting power of attorney. This seems to suggest that people find it easier to make provisions around their money than their future care and quality of life.

Why should this be? The fact that 40% of respondents who care for a person with dementia are not familiar with the term “Advance Care Planning” provides a clue. Many people may be unaware of the options available to retain some level of control over their future care.

One of the most startling findings in our survey is that the majority of respondents say that they will either “get around to planning their care at some point”, and/or they will “let their family make the decisions when the time comes”.  We’re obviously all either optimists or fatalists, or even fantasists?

It’s strange how we don’t really believe in our own mortality. Of course we ‘know’ that death is a 100% certainty for us all, it’s only a question of how and when. But we can’t quite bring ourselves to recognise that what we see our grandparents, parents and other relatives go through is actually going to happen to us. Why else would the 79-year-old lady I was chatting to recently be so relaxed about not yet having a lasting power of attorney in place? “After all”, she said, “I’m perfectly fit and well at the moment.” And long may she continue to be so. I felt it was not my place to point out to a complete stranger that the risk is obviously increasing with each year of an event taking place that will make her – or more likely her family – regret not having a lasting power of attorney and other documents in place.

Michael Hebb, author of ‘Let’s Talk About Death Over Dinner’, describes western society as ‘death-illiterate’. And in not discussing death, he says, we are not empowered to make decisions. (2)

How then to become ‘death-literate’ and empower ourselves to make those decisions that can considerably improve our experience of later life and eventually our end of life? Perhaps one solution is to have those conversations much earlier. NHS guidance calls for advance care planning to be done in the last year of a person’s life. This may already be far too late to do anything other than crisis management, particularly where a person has lost the capacity to make decisions for themselves. More to the point, it can also be a very awkward topic to raise when you may be focused on doing everything possible to stay alive.

Raising the subject when we’re feeling hale and hearty on the other hand, makes it much more likely that we’ll have a more relaxed and open conversation, because it feels so much more hypothetical. But even then there is uncertainty, our survey confirmed, around the decisions to be made and the various documents to be prepared. Whilst the conversation itself may hold a certain merit, its real value will only be realised when decisions are recorded and then stored in such a way as to be accessible when required by those providing care and support.

We’re taking the learning from our survey and other research to produce the My Future Care Handbook, an interactive document designed to help people make informed decisions around their future care, and then record, store and share those decisions as appropriate. Creating a Mycarematters profile will become one part of that process. We are grateful to everyone who completed the survey for helping us create something that is helpful, valid and relevant.

We look forward to consulting further with people living with dementia, their care partners and health and care professionals when we have the first draft of the document available. If you would like to share a comment or idea about the survey, or you’d like to be involved with the project, please get in touch: info@mycarematters.org. In the meantime, there is something you can do straightaway to start taking control of your future care: create a Mycarematters profile. You never know when you might need a stay in hospital and be unable to communicate your needs. It’s quick and easy to do, and it’s free! Go to https://www.mycarematters.org/register.

Posted by Zoe Harris

(1) https://levisolicitors.co.uk/news/new-statistics-about-wills-in-the-uk/
(2) https://www.theguardian.com/lifeandstyle/2018/oct/30/remember-you-will-die-tips-for-better-death-michael-hebb

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.

Mycarematters is shortlisted for Innovating for Ageing competition

Mycarematters has been shortlisted as one of 5 finalists in a ground-breaking national competition run by retirement income provider Just Group and the International Longevity Centre (ILC).

The Innovating for Ageing competition was established in January 2018 by Just Group, with support from ILC, to identify innovative solutions to the most common, intractable problems faced by vulnerable people in later life.

From the 77 submissions entered by policy experts, tech innovators and academic institutions, Mycarematters was chosen as one of the 12 strongest entries by the competition’s independent Advisory Board. We then pitched to an expert judging panel and were one of the five finalists invited to attend the Awards ceremony, hosted by the comedian and broadcaster David Baddiel in London on January 31st.

We were delighted to hear the judges’ endorsement of Mycarematters as a great and simple solution to the important issue of digital and advance care planning. They also commended the different formats available (ie online and offline), meaning there are no technical barriers to people using the solution.

To return to Mycarematters home page click here.

Who is Mycarematters for?

When I first came up with the idea of Mycarematters it was very much with people with dementia in mind, having seen my husband experience some fairly dreadful care through ignorance of the things that mattered to him. However, as the service has evolved and undergone trials it has become clear that we are addressing an issue that effects virtually every person undergoing a stay in hospital. It is likely, after all, that anyone spending time in hospital for whatever reason will have moments when they are unable to express their needs or explain their preferences.

The first person that brought this home to me was a healthcare assistant working on a ward where we were trialling Mycarematters. She showed me her Mycarematters keyfob and explained that she had created a Mycarematters profile because, as a coeliac, she  wanted to be sure she would not be given inappropriate food in the event she found herself in hospital and unable to communicate.

The hospitals conducting those early trials had initially planned to use Mycarematters purely for patients with a dementia diagnosis. They quickly switched to offering it to every patient / their families on the basis that even the most clear-minded and fit person can become confused and anxious in hospital. They may have been admitted with, or develop, a condition like delirium which temporarily prevents them from communicating, and which can increase the likelihood of adverse events such as falls, through ignorance of their mobility needs.

So the quick answer, to the question as to who Mycarematters is for, is everybody! It’s on that list of things we should all do: write a will, appoint a power of attorney, create a Mycarematters profile. You never know what’s round the corner, and how much better to write down your own needs and preferences when you still can, than rely on friends and families’ best guesses at a later date. (You can update it as often as you like, so you’re not setting anything in stone.)

It is free for individuals to create a Mycarematters profile: go to http://www.mycarematters.org for further information and to sign up.

For further information on how to use Mycarematters in your hospital, care home or hospice, please also see http://www.mycarematters.org or email info@mycarematters.org.

When less is more

It’s tempting, isn’t it, when trying to explain something, to keep on using more and more words to get your point across?

We all know how much more difficult it is to say something succinctly than to waffle on. As Blaise Pascal said back in 1657, “I’m sorry I wrote you such a long letter; I didn’t have time to write a short one.”

There are often good reasons for keeping it short, and none more so than in the busy world of healthcare. Families may be asked to provide information about their relative being cared for in hospital, but if the resulting document is pages and pages long the sad reality is that it will rarely get read. Much as the staff want to, they do not have time to sit down and sift out the really important things that will make a difference to the care they deliver.

So when we were developing Mycarematters, keeping it short was an attribute we deliberately retained from the original charts. On those, physical space was the limiting factor but we soon saw how it encouraged people to think carefully and prioritise what was really important. We ask people to do the same when creating a Mycarematters profile online, so that a person’s core needs and preferences can all fit on a single side of A4. In that way, hospital staff will see a snapshot view of the things that matter, and are much more likely to scan their eyes across the printout (or scroll through some brief data online) than rifle through multiple pages.

To return to Mycarematters home page, click here.

Mycarematters is one of nine projects announced for the Essex Challenge Dementia Programme

We’re very proud to have been selected as a finalist for the Essex Challenge Dementia programme. We’re looking forward to working with Essex hospitals, care homes, carers and people living with dementia to further develop Mycarematters in the coming months.

Do you want to create a free Mycarematters profile for yourself, a relative or your care home residents? Click here

Read the full press release from Essex County Council:

Challenge Dementia, the first national search for next generation products, technologies and services that could transform the way people live with dementia in Essex, has reached the next stage with the announcement of nine shortlisted projects.On Wednesday 9 May, a panel of judges, chaired by Professor Alistair Burns, NHS England’s National Clinical Director for Dementia and Older Peoples’ Mental Health met to consider a shortlist of projects from the 71 entries. They have now invited nine finalists to test and develop their ideas in Essex over a six month period.
The finalists’ ideas range from technological solutions using virtual reality, video and AI systems to support the creation of digital stories, the growth of dementia friendly communities both online and in person, to personalised timelines and systems to trigger memories and holistic care solutions.  All of them have at the heart of their idea or solution the desire to enable people living with dementia to remain connected to the people and places around them and to maintain their identity.
Each will receive £5,000 and access to a unique ecosystem of dementia experts from across the community, voluntary, public and private sector as well as people living with dementia.  £100,000 will be awarded to the winner who successfully meets the entry and judging criteria.
Professor Alistair Burns, NHS England’s National Clinical Director for Dementia and Older Peoples’ Mental Health said: “I am delighted to have chaired the panel that shortlisted the nine projects that will progress through to the next phase of the Challenge Dementia Prize.  As a panel we have been impressed by Essex County Councils spearheading of this search for a ‘step change’ in dementia. This prize adds to a strong base of work that will help keep dementia in the spotlight and enable us to better support those living with the condition.  Along with the other judges I was highly impressed by the quality and depth of the entries.  I believe we have chosen a range of ideas that have the best potential to transform the way people live with dementia.  I look forward to hearing how they all progress as we head into the testing phase, and meeting with fellow judges again in November to decide on the winning idea.”

Cabinet Member for Health and Adult Social Care, Cllr John Spence from Essex County Council said:“I am delighted that Essex County Council are at the forefront of this pioneering challenge and have been impressed both by the quality and quantity of entries into the Challenge Dementia Prize.I would like to thank all the judges for taking the day and using their expertise and experience to decide on the nine shortlisted entries.  Having seen the range of ideas and solutions I look forward to hearing how these projects develop during the next six months, knowing that all of them are working hard to improve the lives of those living with dementia.”Further information can be found at the Challenge Dementia webpage  http://challenge-prizes.essex.gov.uk/challenge-dementia/

The shortlisted projects are:

  • The Wayback, The Wayback Team , Hertford
  • Home, EPUT NHS and Accenture Liquid Studio, Essex and London
  • Happy at Home, Active Minds, London
  • Building Creative Communities, University of Essex, Colchester
  • Vivify Me, 11 year old boy, London
  • Remarkable Lives, Remarkable Tech Ltd, Stroud
  • MyCareMatters, My Care Matters Ltd, Horsham
  • Communication without waiting lists, eQuality Time, Luton
  • How Do I?, NFC Helps Me Limited, London

Pioneered by Essex County Council, Challenge Dementia was open to individuals, teams and companies with ideas for ambitious and innovative products, technologies and services that will enable people living with dementia to remain connected to the people and places around them and to maintain their identity.

Mycarematters works in any care setting

We originally designed Mycarematters as a way of reliably sharing a person’s non-medical needs and preferences with hospital staff, wanting to eliminate the delay between admission and collecting the information about what matters to a person, when they can’t communicate those things for themselves.

But of course it works just as well in care homes to ensure everyone interacting with the person is aware of the information they need to deliver person-centred care. There is then the added benefit of a person’s Mycarematters Profile being immediately available in the event the person has to undergo a stay in hospital.

It’s just the same for people being cared for in their own home. It’s ready and waiting for a hospital stay, just in case, but it can also provide visiting carers with a quick introduction of the information they need to provide a more personalised style of care.

A person’s Mycarematters profile can be viewed on any internet linked device but we find that printouts are still the most popular way to display a person’s Profile, and we offer a range of display options to suit all environments: click here for further information…

Wish to create a free Mycarematters profile for yourself, a relative or your care home residents? Click here