If you saw Medway resident Wayne Eaton on an organised walk you might put him down as one of the leaders. Strong, fit, outgoing. Maybe ex-army. He has that kind of authority about him. What you don’t know – couldn’t possibly guess – is that he’s walking because the other kinds of action and adventure he used to love are now closed to him. At 61, he is living with two different types of dementia. “A bit of Alzheimer disease and a bit of vascular dementia thrown in,” he says with a determined grin.
A former IT and business teacher, he suffered a major heart attack in 2004 and began what he colourfully calls “My journey into dementialand”.
“After seven years of varying levels of testing I was finally diagnosed in 2015 as having mixed dementia. This left me in a very different world and one that I often fail in.
“I was obviously rather disturbed by the diagnosis but was advised that despite no longer being able to drive – walking and cycling would be of tremendous benefit in slowing the inevitable progression of the Alzheimer’s. Nothing changes the vascular dementia but staying fit, as we all know, helps the vascular system in general.”
At first, Wayne’s adept brain was hiding issues from him and automatically dropping coping strategies in place. “But slowly it became too much and I was noticing changes, feeling inconsistencies in my daily life and capabilities. I forgot little things, imagined conversations, got lost in mind and body.
“I could not really it explain it then or now, but I wasn’t comfortable in my own body, didn’t seem to fit my own life. My personality and character changes eventually caused monster problems to work, home and family life.”
This was before his diagnosis and he spent many years being told by health professionals that he was simply suffering from stress. The discovery that there was a physical reason for the escalating disruption he was experiencing came, in some ways, as a relief.
“Since accepting I needed help and letting others be more involved with my life, things have been better and better with good advice and support. My days are now generally filled with action and adventure: health walks, social groups, peer groups, pressure groups, meetings, outings, cinema, restaurants, shows, holidays, dementia awareness talks, even the odd film and radio work. All of this is backed up by having a collection of brilliant people, friends, professionals all around me that keep me functioning and active.
“After no longer driving I used to get enjoyment from my cycling and walking but nowadays that has reduced to just walking. My road awareness is now so poor that I am a danger to myself and others. A major vascular episode last September has left me with a habit of just walking out into the road if I hear the pelican crossing sound. Makes no difference whether I want to cross or not. I just hear it and go! So riding my bike would be suicidal. It has also made me so anxious at the roadside that I often do not cross even when it could be safe to do so and I need a little coaxing. There is no way of predicting which mode I will be in on any particular day – it just needs to be monitored at the time.
“My coping strategy for this is to tell those on the walking groups that they have my permission to physically stop me from walking out into the road.”
As with all those affected by dementia, Wayne’s symptoms are unique to him. Trivial things in the “real world” as he calls it, can be magnified and distorted by his condition. “My senses as well as my common sense can be greatly messed with: bright lights dazzle, loud sound distorts, quiet sound does not register, crowds can cause anxiety, rapid movement confuses the visuals, signs can be difficult to read, familiar places can suddenly look different and create the impression of being lost. It’s a big deal to even go out of the house sometimes.
“So to put in the effort of attending a health walk is proof that they are a great personal satisfaction to me. Walks are viewed by those of us with dementia as fun, lively, healthy, an adventure, social, safe, controlled, well-organised, inspiring, reliable, varied, affordable, convenient, well-paced and apart from our bus passes one of the most valuable things that can be done for us.
“I get fantastic support when on the walks because I am very open about my condition. They have often helped me safely cross roads when I do not even register traffic or occasionally that this is, indeed, a road. They stop me from getting lost by unobtrusively leading me and help me avoid situations that would cause me concern if out on my own. The social side is also a major aspect of its benefits. It brings about challenge in setting and dealing with new people. I can practise my communication skills but also help with awareness of dementia and hopefully reduce other peoples’ fears.
“The walks often give me a reason to get up and get out in the morning rather than hiding.”
Wayne’s experience is a powerful reason behind the joint venture between The Kent Ramblers and Carers’ Support organisations in the county to offer walks once a month to carers and those they care for who may, amongst many other conditions, be affected by dementia. The project “Stepping Out”, backed by Sport England, has already visited Folkestone, Ashford, Tenterden and has five more walks lined up in Sheppey, Faversham, Deal, Thanet and part of the North Downs Way.
The walks are specifically designed to be accessible, social, relaxed, varied, enjoying the spectacular Kentish scenery as well as the valuable exercise. To give those dealing with complex issues of care and health the opportunity to “get up and get out” is the driving force of the campaign.
“I am trying to learn about dementia,” said Wayne, “trying to learn how to live with it. But it is very tough to pin down the moving target which is now my world.
“As it worse and my grip on it loosens, my ways of coping will break down and I will need more of your awareness, caring, understanding and, hopefully, forgiveness.
“So the dementia will get the better me in the end but I will not go without a fight.”
Wayne Eaton was talking as part of his Dementia Training work with Dementia Inspired. Find out more at dementiainspired.co.uk