Here is the full version of an article printed in the May/June edition of our DEEP News.
Steve Milton writes:
It’s often easy to underestimate the challenges that people with dementia can face.
Many describe the gulf between the calm and competent exterior they can sometimes present to the world, and the hard work that goes on under the bonnet to keep that going.
…..“like a graceful swan with the legs underneath gong like the clappers” as some have described it”
Unfamiliar surroundings present particular problems for people for whom cognitive capacity is at a premium. How to orient oneself, how to navigate without familiar landmarks and faces, especially if a carefully-considered plan is derailed somehow.
By way of illustration, Wayne describes a recent break away from home: https://dementiadiaries.org/entry/21925/its-easy-to-underestimate-how-new-environments-and-routines-can-impact-on-people-with-dementia-as-wayne-explains-in-this-video-diary/
For many with dementia, there are also the challenges that can accompany ageing. Listen to James describing the changes he’s experienced, and some of things he does to work around them. https://dementiadiaries.org/entry/22049/james-reflects-on-the-physical-changes-hes-experienced-and-how-hes-adapted-to-them/
Working around the daily challenges of life that dementia and other conditions can bring is something that dementia diarists talk about a lot. So is finding a balance between doing enough to stay active and build those neural pathways, and not overdoing it.
Jacqui’s diaries are always a wealth of good advice about self-management and communication with people with dementia. In this diary she has some wise words about preserving energy, be it for an electric scooter or for one’s own mind. https://dementiadiaries.org/entry/22043/a-brilliant-diary-from-jacqui-about-energy-management-for-scooters-and-for-minds/
It’s no surprise that Jacqui has been such a valuable part of the team that produced “My Life My Goals” – an absolutely brilliant guide for people with a diagnosis of dementia. It’s full of great advice around finding solutions to the problems that dementia can bring. https://www.alzheimers.org.uk/sites/default/files/2021-09/my-life-my-goals-workbook.pdf
The My Life toolkit is being used in Singapore, home to a member of the team. Jacqui is very keen to carry out some research to see what can be learned from the way it’s being used there, as she explains in this diary: https://dementiadiaries.org/entry/22034/jacqui-is-looking-for-help-to-research-how-my-life-my-goals-is-being-used-in-singapore/
As well as working round problems and self-management, the friendship and inspiration of others people with dementia is a key component of the toolkit for so many of our diarists. Many are members of local DEEP groups, and many are involved in virtual groups, not least our weekly Diarists ZOOM.
Raymond has been looking forward to finally meeting someone who shares his experience of Lewy Body Dementia. In this diary he explains his first meeting with them, and the impact it had upon him. https://dementiadiaries.org/entry/22061/22061/
We’ve featured George’s diaries on many occasions.….and for good reason. The beautiful open spaces that George moves through during his diaries are bought into glorious being in his crystal-clear recordings. They capture every nuance of the changing of the season, of the comings and goings of plants, animals and the elements……and through his diaries we are taken there. In this diary, even the rude interruption of elsewhere cannot disturb the calm. https://dementiadiaries.org/entry/22052/george-captures-the-tranquility-of-nature-is-beautifully-despite-the-rude-interruption-listen-out-for-the-rain-at-the-end/
If you would like to find out more about Dementia Diaries please visit www.dementiadiaries.org
If you are interested in becoming a Dementia Diarist please get in touch with Steve Milton by email Steve@myid.org.uk
