Supported self management for people living with dementia
Here’s what I said to a brilliant workshop at National Voices yesterday at the launch of a new project to promote/define supported self management.
So, what about about supported self management for people living with dementia?
Let’s first understand dementia.
Dementia is a collection of symptoms and behaviours resulting from disease of the brain.
The disease is irreversible and decline is continuous though inconsistent, and different for everyone.
Decline can be counteracted in some people through the use of drugs which improve the functioning of the healthy parts of the brain, for a while.
Dementia differs from many medical conditions and diseases in that it can neither be cured, nor its relentless progress stopped. So management is just that…managing life with dementia.
And what is living with dementia?
It’s about parts of your brain ceasing to function properly so you can’t process signals. Signals coming in and signals going out.
Not being able to find words.
Not recognising a face or a place.
Not understanding why someone wants to stick a needle in your arm.
Forgetting why you are in a shop.
Forgetting to take your pills, or eat a meal.
Getting up at three in the morning and taking a radiator off the wall.
Hoovering the floors all day, every day.
Being desperate to be back in the kitchen at 3.45 in the afternoon to make tea and sandwiches for your children who left home thirty years ago.
Leaving the water running in the bath.
Falling over a non existent step which is actually a pattern change in the carpet.
Not seeing the sign for the toilet because you look down not up…
Dementia is being in a world that is different from anyone else’s.
And it’s doing these things on your own. Alone. Often frightened.
Because all these things are frightening.
What then is self-management for a person living with dementia?
Well, sorry, I suggest there is no such thing.
A human being relies totally, entirely and absolutely on their brain to process signals. Observations, smells, sounds, touch…and intentions, desires, choices.
If a part of your brain is dying or dead you cannot do anything about it. You can’t carry out its function. It’s impossible. You can’t self manage it. You can’t make sure you take the right pills, or walk 10,000 steps a day, or even eat and drink regularly, if the parts of the brain that carry out the functions associated with those actions are destroyed.
If you’ve done the dementia friends awareness session, you’ll have a good idea of how many different brain functions and decisions are involved in just making a cup of tea.
So I contend that people should be supported not to manage their dementia but to live as well as is possible with dementia. This is about support. Not self management.
Self management is usually described as being about getting the right information in the right format at the right time, and a shared care plan (please let’s say living plan), and attending courses and peer groups. These are good and useful, and can be effective as long as the patient is “activated” to self manage.
But dementia is different. Information is good but doesn’t per se help you to live well…it helps you understand what is wrong with you. A shared living plan is good, but doesn’t per se help you to live well…it helps you know what you want and need. Peer groups are helpful if you find the group that suits you, where you can talk and listen to people you choose. But dementia peer groups tend to be full of people who are relatively advanced on their journeys. ..and they all have dementia, which you may not want to be surrounded by.
So here are the three things that I suggest will provide support for people living with dementia to live well. You can call this self management if you like. Or you can call it support. Or you can call it great care.
First, people living with dementia need a person they know well to talk to, to help them with difficult things, to accompany them when necessary. On bad days. To hospital appointments. On a day out. One person they trust, who understands them, and knows their individual circumstances and needs, and knows what makes them smile and want to get up in the morning. A dementia support worker, for example, or a key worker, who stays with them throughout their journey.
I don’t mean a family carer. They of course need support too, and peer groups, and activities, and respite, and advice, and a listening ear, such as an admiral nurse.
Second, people living with dementia need the technologies that enable them to continue living independently as long as possible and as long as they want to. Automated third party monitoring for safety, movement activated lighting, electronic pill dispensers, water sensors in the bath and kitchen, easy read and easy use gadgets and telephones. iPads to see and speak to family, friends, peer groups, their support worker, their doctors. Loud, spoken reminder systems.
These things can enable a person to live safely with minimal risk, in their own home and their own memories as long as they want to do so. Note that I say with minimal risk. Please let us choose to take risks. Don’t cocoon us in tea, sympathy and clouds of unknowing.
Third, they need communities which are dementia friendly. Where medical and social care staff behave in ways which recognise the different needs of people whose brains are damaged and who do not present “challenging behaviour” but are merely frightened and disorientated.
Communities where shop keepers, bus drivers, train staff, taxi drivers smile, look at you when speaking, ask if you want any help, speak a little more slowly, and allow you time to collect your thoughts.
Communities where people living with dementia or any other disease are welcomed into activity groups, shops, libraries, just like anyone else, and where people just help each other to enjoy their company.
Communities where dementia is no more than a disease, like cancer, or Crohn’s disease, or diabetes, and where people aren’t frightened of talking about it.
These three elements are keys to continuing to live well with a disease that is going progressively to make living more difficult. They won’t stop the disease. Or cure it.
But they will provide support for a person living with dementia to manage living and to live well.