Margaret Hawksley finds it hard to remember the name of her youngest grandson. “If he was standing in front of me, I’d know,” she tells me.
Margaret, 77, a former biology teacher, was recently diagnosed with early-stage dementia. Her husband James started to notice something was wrong a while ago when she became forgetful.
He said: “Scans hadn’t given any indication and it got to the stage where we were signed off by doctors. There was no evidence of change and nothing further we could be offered. Not long after that I began to think there was a deterioration and we re-started the process of being referred.
“That’s when a CT scan confirmed the diagnosis.”
Margaret told me how the condition has affected her: “I can start cooking, walk out the kitchen and completely forget what I was doing. I am better in the morning and my memory gets worse as the day goes on.”
James said: “The lead-up to going away and sorting out clothes is a pain. We will decide what we are taking and sort it all out and then Margaret will forget she’s done it and start again. Anything that creates stress will affect her ability to remember things.”
When they told friends and acquaintances about Margaret’s dementia they fail to appreciate the severity: “The common reaction when you tell them she forgets things is ‘Don’t we all’,” said James.
The couple were speaking to the ‘Tiser at a dementia question and answer session held at Midway Day Hospital in Ilkeston, by Derbyshire Healthcare NHS Foundation Trust.
People with dementia, and their carers, were invited to ask questions to a panel of professionals, including consultant psychiatrist, Dr Ed Komocki, who addressed a number of concerns that were raised. For example, whether the condition can fluctuate from day-to-day.
He said: “Dementia can have different degrees of fluctuations, depending on how a person feels. If they are ill with a cold their memory will not function as well as if they were feeling well. Vascular dementia in particular sees sufferers get worse at night.”
Dr Komocki described dementia as ‘a person not being able to do stuff that they previously took for granted’. He said: “All of the stuff that we take for granted, that happens naturally, doesn’t happen anymore (such as eating), that’s what the nature of dementia is, a gradual deterioration of the stuff a person takes for granted, an inability to put your life in order as you normally would have done.
“If you think that someone has started to have memory problems then go to your GP. If it could be dementia it is then referred on to us and an assessment is done. There are certain types we can provide treatment for and others we can help with.
“We will look into a person’s history, carry out psychological tests and brain scans.
“Brain shrinkage can be an indicator. If a scan comes back clear it doesn’t rule out dementia.”
One audience member asked if hallucinations were also a factor. Dr Komocki told them that with Alzheimer’s 20 per cent of people will have hallucinations at some point during the illness where they will start to hear or see things that other people can’t hear.
He said: “There is one form where people have huge and vivid hallucinations, where they can open a newspaper and little unicorns start jumping on their lap.”
In terms of dealing with the condition, routine is important. Occupational therapist Helen Brockbank said: “We suggest a communication book so if a person can’t remember who has visited and what they have done, all the information is in one place.
“It helps if everything is written in one place. White boards are helpful with precise simple instructions. One woman used to unplug all her electrical items before she went to bed. When she got dementia she started unplugging the fridge and freezer so the therapists started putting tape on them with a note telling her it was the fridge and not to unplug it, but she would still rip the tape off.”
The next question and answer session will be held on April 16 at 6.30pm.
For more information, call 0115 9071440.