As Graham’s disease progressed, I noticed his confusion in public places increasing and I became aware that there are so many things I take for granted in my everyday function in the community.
I walk up to the counter, tell the young lady all the complicated details of my fussy coffee, scan my card, and go and wait in the designated area. I’ve just used a multitude of decision-oriented skills without batting an eyelid. What happens when a tall, fit-looking 64-year-old man walks up to the counter and hesitates as he begins the process of working out what it is he wants and then concluding, “What are all the things that I need to tell this person so that I’ll finish up with the right drink in my hand?” It’s a busy coffee shop! There are more people waiting … the barista gets impatient … you get the picture.
Something that gradually became more and more important in our world as Graham’s cognitive skills began to slide was the need for some level of acceptance and understanding by the community around us. For those who were part of our immediate circle – family, close friends, our church community, a regular service provider such as our local swimming centre – the fact that they were aware of Graham’s illness led them to treat him at least with some patience, an attempt at understanding and even with compassion. This is hopefully the experience of many people living with dementia and it’s the least we can do to try to make their journey more comfortable.
However, in the wider community – with the checkout assistant at the supermarket, the cashier in the service station, the people rushing around the shopping centre, the bank teller and, yes, the busy barista – there is often an experience which causes confusion and embarrassment.
Public toilets, whether in a building, restaurant or railway station, are another source of difficulty. We love to walk into a pristine white environment when we go to use the facilities, don’t we? It makes the restroom feel clean. However, if you have cognitive impairment … and all those cubicle doors are white … and the walls are white … and the exit door is white, many of us can testify to waiting for someone who gets “lost” in these restrooms.
These days we all take it for granted that there will be ramps and walking aids for people who have an obvious need for physical support in manoeuvring around public areas. But dementia is hidden. So what about the growing number of people living in the community who don’t have a “visible” disability but who are just as functionally affected by their illness as the person in a wheelchair or with other obvious mobility or physical challenges.
Over four years have passed since Graham went into the nursing home which was his final residence. In those four years, I’m really encouraged to see that there has been a groundswell, largely driven by people living with dementia and their carers, which has brought about a growing awareness that there is a need to do something to make community living easier for those living with dementia. Through this groundswell, the dementia-friendly communities philosophy has continued to expand, having seen so much success in the pilot communities where it has been trialled and established, such as Kiama and Port Macquarie in NSW, Beechworth in Victoria and Bribie Island in Queensland, to name a few.
The Dementia Australia definition puts it in a nutshell: “A dementia–friendly community is a place where people living with dementia are supported to live a high quality of life with meaning, purpose and value.”
I have a lovely memory of an incident in our local village which could have been such a very negative experience for Graham, but because the service officer recognised and treated Graham as a person, we came away smiling. The time came when I was finally able to convince Graham to hand in his Driver Licence, as he had stopped driving six months earlier. At the RTA window, I quickly explained the situation to the officer before Graham moved up close enough to hear.
The officer brightly called Graham over and proceeded to congratulate him that he would be getting an ID card and, what’s more, he would get a significant refund from the unused portion of his five-year licence. She then asked about our registration and pensions and celebrated with him the additional part refund we would get on our car registration. In other words, she was able to empathise with Graham’s difficult decision to stop driving and turn the process into something positive, treating him with respect and dignity. This was a great relief to me as a carer, as I had expected to have a difficult time with walking Graham through this process. Because the officer was able to put a positive face on the experience, we left with Graham being much less stressed than he would have been in a busy, hurried and businesslike encounter.
St George Bank recently launched their dementia friendly policy across Australia, acknowledging the fact that people living with dementia often struggle in managing their banking needs. I was enthralled to see the dedication and enthusiasm surrounding this move to come alongside their customers who need a little extra help and understanding.
So who needs friends? We all do!
These past 18 months, I’ve been honoured to be a member of a consumer advisory group which has collaborated on a project centred on Dementia Friendly Communities. Working with Dementia Australia, the dementia-friendly communities educational hub was launched in September. View here.
This website contains a wealth of information and suggestions for creating a dementia-friendly environment for community and social groups, health professionals, individuals and businesses/organisations. There are lots of resources aimed at equipping us to make our local communities more accessible for those living with dementia, so they can continue to experience life as fully as they want to. Anyone can go to the website and become a dementia friend. It costs nothing!
I’m really feeling encouraged, because if we all spend a little time learning about how we can enhance the community life of our neighbour who is living with dementia, our communities will become more vibrant and alive and empowering for them.