Whanganui couple Lorraine Nealis and Joe Nealis on their wedding day 60 years ago.
For Whanganui’s Joe Nealis, there are only a few precious hours of the day when his wife Lorraine remembers who he is.
“How can you adjust to that? You live in the moment, that’s basically all it amounts to.
“You can’t change your wife. I know I’ve got the morning and those four or five hours, and then in the afternoon it’s just a matter of coping.”
In 2009, aged 67, Lorraine Nealis suffered a stroke that left her in hospital in a coma.
She fully recovered, but in 2015 Joe began to notice changes in her behaviour.
“Minor things started to happen: the fridge door would be left open or her things would go missing.
“Then she started to slowly deteriorate. A pan was left on the stove and a small fire started in our kitchen. Luckily I was at the neighbour’s and got home just in time.”
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Lorraine was diagnosed with dementia and an unusual pattern in her memory began to reveal itself to Joe.
“From early in the morning ‘til about midday, Lorraine is Lorraine, and she knows who I am and knows me as her husband.
“This sounds strange, but between midday and 1pm her personality changes and she doesn’t recognise me at all and she thinks I’m her father.
“It gets progressively worse until about 6pm and then it starts to ease off again. It’s exactly the same pattern every day but it varies in intensity.”
Joe said the pattern was called sundowning and often his wife would think of herself as being 18 years old and express a desire to return to her childhood home.
To distract Lorraine, Joe takes her for a walk or a drive in the car.
“I try to get her to think of other things and make certain that she concentrates on something else that she wants to think about. It won’t remove the problem, but it might make it go away for a while.”
Joe and Lorraine have been married for 60 years, and in February this year, Joe moved Lorraine into a rest home to help ease the burden of full-time care.
“Before Lorraine had the stroke and developed dementia she was the sweetest thing that you’d ever wish to meet; now her personality changes all the time.
“You have to handle the person very carefully and just try to talk things over between the both of you, or talk your way around things. But you can’t force them to do anything.”
Sundowning or sundown syndrome is a colloquial term, rather than a medical diagnosis, which describes how people who have dementia tend to worsen between 3pm and 7pm as the sun goes down.
The symptoms are often increased confusion, agitated behaviour or even physical aggression.
Psychiatrist of older people Dr Terry Johnson said people with dementia who exhibit sundowning may have changes in their thinking patterns or become paranoid and can experience hallucinations.
“There is less light in the evenings in residential care facilities and homes, which means there are more shadows that can leave room for greater misinterpretation.
“Often there is more noise in the evenings as meals are being prepared and the nursing staff team switches over, or in homes, the television might get turned on.
“For a person with dementia who already has compromised cognition, it can mean they are more likely to develop behavioural difficulties.”
Johnson said research indicated that spending excessively long periods alone or only around immediate family could worsen dementia and associated sundowning.
Johnson estimated around 150,000 to 170,000 people in New Zealand were living with dementia and the rate was increasing as people were living longer.
“Worldwide, it means there are about 55 million people with a diagnosis of dementia.”
Johnson said a key thing for anyone looking after someone with dementia was not to try to argue them out of a belief.
“It is better to get alongside the person and try and empathise with them, and make comments such as, ‘I understand that this is what you believe now’ or ‘We can talk about this later on, but perhaps just now we need to go for a walk in the garden’.
“If you try to argue them out of it, it will make the person more agitated and it will also be extremely frustrating for you, and it can lead to the whole situation escalating unnecessarily.”
Johnson said regular exercise was important to help the person with dementia remain physically active.
“It needs to be exercise designed to fit the person’s ability, such as gentle walks, even using a walker or wheelchair if needed.”
Engaging in hobbies or group activities the person enjoyed most of their lives, such as chess, Scrabble or watching a television programme, could help to increase socialisation.
“These activities keep the person interacting with the real world and reduce the likelihood of them declining into more of a delusional world.”
Johnson said it was common for older people with dementia to oversleep, which could lead to restlessness or agitation.
“Try and keep them awake as much as possible in the daytime.”
Research also showed music therapy was very effective.
“So if the person has a liking for classical music or soft pop, it’s useful to have that playing quietly in the background at key times in their day-to-day life.”
Behavioural psychologist and Auckland University senior lecturer Rebecca Sharp said to prevent carer burnout it was important for people to take regular breaks and to share the responsibility if possible.
“The way that you are interacting with that person has shifted - you are now doing things for that person that you didn’t previously do, and that can be a very hard adjustment, especially for spouses and children who become caregivers.
“Having strategies in place for when behaviour arises that is problematic can make things easier.”
Sharp said it was important to read the behaviour of the person being cared for and offer them choices for their meals and activities.
“We think about behaviours as being purposeful and communicative, so people with dementia are acting or doing things for a reason.
“If somebody is shouting and yelling, you might work out that behaviour is the only tool they have left to have someone come over and speak to them.”
Offering objects or using visuals to help communicate choices to people with dementia could help a person express their preferences.
“You can measure whether they like that thing by how they behave, so do they frown and push it away, or shake their head?”
Sharp said it was useful to create a memory book with clearly labelled photos of loved ones to help with identifying family members.
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