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.