Dementia Advocate reflects on MCI diagnosis, its impact and the future

In a blog post based on a speech delivered at our recent Parliamentary Friends of Dementia event in Canberra, Dementia Advocate Kevyn Morris discusses the road to an MCI diagnosis, its impact, and improvements he would like to see made to the health care system in the future.

What if you couldn’t remember how you got here? Do you know the person next to you? Are you sure? For many, this is an everyday occurrence. 

All through our lives we have spectacular years that stand out in our memories. Your first job, car, girlfriend, getting married or the birth of a child. 2015 was one of those memorable years for me.

By then, I was in my mid-fifties, our children had all left home and were well on their ways with their lives. We had reached that time in our lives where we were supposed to enjoy ourselves. We had turned our hands successfully to designing and producing handmade Tasmanian Huon Pine furniture and art, with our works being sold throughout the world. By then, my wife Lee-Anne and I had moved to Wodonga in order to establish a mainland outlet for our pieces, as we had been successful in Tasmania.

For some time, even before we had left Tasmania, what started out as every now and then, was the kids more often saying, “But dad, we told you!” It was slow, barely noticeable, but then Lee-Anne began to notice an increase in the number of things I wouldn’t remember. She tried to get our doctor in Tasmania to listen, but I was too young to have memory issues at my age. I was 55. Maybe it was just as that old joke said ... women can multi-task, where men can do only one thing at a time ... but we do it very well! The joke ended around July – August of that year for us.

What started with me not remembering a few things, ended when I couldn’t remember how to use a piece of equipment I had used for more than a decade. However, tell someone you forget things and the response is, “Oh you look alright ... oh I do that all the time!”

To get some medical people to acknowledge there is an issue can be a hard road. We hadn’t had much luck with the two GPs, the Endocrinologist or the psychologist we had seen in Tasmania. Now I would get cranky and snap at Lee-Anne and the kids when I couldn’t remember things, like the name of an item or equipment, or even conversations with people on the phone. When Lee-Anne’s mum was in hospital, her dad rang me and I only remembered to tell her three days later. But worse for me was that I would have trouble finding words in my mind or losing my train of thought in a conversation.  

Luckily our doctor listened to Lee-Anne when she dragged me into his surgery one day. She said that there was something wrong with me and we need to find out what, “otherwise I’ll choke him”. It still took nearly three months to even get an appointment with the public mental health unit in Albury. Wodonga doesn’t have its own like many country towns that don’t have the wide array of health services and professionals that are taken for granted in the cities. The worry of not knowing, with all kinds of things running through my mind, was made worse after an appointment with the neuro-psychologist due to a lack of information or support.

For those who don’t have a cognitive impairment, tasks that most of you would find simple and easy, someone with a cognitive impairment will find difficult, confusing and sometimes completely overwhelming. Over time I have learned that living with this condition doesn’t mean the end of who you are.

I can’t say how or if an early diagnosis and support would have changed things for us, but I have five suggestions I think will make things easier for others.

  1. A maximum wait time of no more than 30 days for initial testing and diagnosis. 
  2. An introductory package containing information on support, equipment, service providers and government services, should be handed to the person with the diagnosis and their family, so it takes away the uncertainty of what to do.
  3. Immediate access to counselling and support services after a confirmed diagnosis.
  4. For government requirements to be simplified and streamlined. I get an email that’s got nine or ten paragraphs, and by the time I get into the fourth line, I don’t want to read any more. 
  5. For staff to be fully trained to not only assist people, but have patience with those that are living with these conditions and to help the family to ease transition. Because you go from being Kevyn to Kevyn with MCI, Kevyn with dementia or Kevyn with Alzheimer’s disease.  

There are thousands of people throughout Australia who have a cognitive impairment such as MCI, dementia or Alzheimer’s disease. In most cases, cognitive impairments are generally not genetic and are not handed down through the family. However, there are exceptions to the rule. What these conditions don’t do is pick and choose the patient. They care not for your education or your social status or where you live. They do not discriminate, the changes can be subtle, or so fast you won’t realise it.

Therefore, it is imperative that groups such as Dementia Australia and Dementia Alliance International are fully funded. It is imperative that the organisations receive guaranteed, ongoing support. This will allow them to continue to research, provide counselling, assistance and support for those who need it.

No matter how hard I try, I can’t make you see or understand. I can’t teach you what it means to have a cognitive Impairment. One day, you may wake up and find you are me. Only then will you understand, but by then it is too late.