What health professionals should know about dementia

After being diagnosed with Alzheimer's, former nurse Ann Johnson has made it her mission to educate healthcare professionals on the realities of living with the illness
Dementia awareness campaigner Ann Johnson
Ann Johnson has been awarded an honorary doctorate for her campaigning for dementia sufferers and services to healthcare. PR

"I trained as a nurse in 1970 and dementia wasn't talked about much then. I would have wanted to know what causes patients distress." Forty years after qualifying, Ann Johnson is now travelling the country to speak to healthcare professionals about dementia and how it affects patients on a daily basis.

She is well qualified to speak on the issue; as well as working in the NHS as a nurse for several years, she is a former lecturer in nursing at the University of Manchester. She also has dementia herself.

Earlier this year the prime minister launched his national Challenge on Dementia which hopes to challenge "widespread fear, stigma and misunderstanding surrounding dementia".

Johnson explains: "Increased awareness is needed in the healthcare sector too. Even in the profession there is a lot of fear of dementia. Those working in the NHS know their own area that they work in well, but they might not recognise when they are treating someone with dementia. They may not know how to communicate effectively if they do not recognise the signs."

Diagnosed at 52, Ann Johnson is now 58. She witnessed her father suffer from Alzheimer's for seven years before he passed away. Since her own diagnosis she has travelled the country to educate and inform future health professionals and others what it is like to live with the condition.

She explains: "Speaking about dementia gives me purpose. Three things help: friends, keeping faith, and talking about dementia to help raise awareness."

Knowing about dementia is different to understanding fully the daily realities of living with the condition, Johnson says. She describes what it is like to have dementia: "People may not always see my problem. But it is there. I find it hard to work out which way things go. I can see things, I just can't always work them out.

"I find it hard to get washed and dressed in the morning. People don't realise this, but using taps is hard for someone with dementia; some push, some turn, and it can be difficult to work out what to do with them."

There are small things which can make a big difference, and Johnson maintains a steady routine to help navigate through the difficulties that arise as a consequence of the condition. She uses a dictaphone every evening to remind herself of things that she needs to remember when she wakes up the next morning. It also helps to eliminate small things that cause frustration, such as buying train tickets. Routine is important, and Johnson says that good timekeeping and reassurance from others keeps her calm too.

"Small things which I find hard cause me to become intolerant", Johnson explains. "Things like opening a bottle. But I don't notice that it is causing me stress. I wish that people would tell me when they see me getting frustrated, that would really help."

Other things that people should look out for include spatial awareness, and tasks like flushing the toilet, which can prove difficult. If a patient has dementia, food and water will also not be touched. "If a meal is put in front of them, sometimes it is hard for them to know what to do with it. It is then taken away without them eating it, despite being hungry," says Johnson.

A significant step is sometimes just for healthcare professionals to recognise when a patient has dementia. Johnson says to ask patients open-ended questions, and not just yes/no ones to gauge whether someone might have dementia: "Look for recognition in their eyes, and not blankness."

"People can also ask themselves a series of questions about their patient to understand their cognitive ability and understanding: are they getting washed?; Can they remember what you've told them?; Do they know where they are and who is looking after them?" Lists can also be vital to help people with dementia establish things and work their way through a daily routine.

"These all sound simple, but you would be amazed at how healthcare professionals sometimes underestimate the difference these things can make. Things like: being patient, speaking slowly (you say this to people, and they react by shouting); only asking one question at a time; giving us time to think things through; being precise and giving us exact information to help us get things done."

But most of all? "Get to know the patient so you will be able to know when they are disorientated. And if it is someone who you know, love them for who they are – support and patience are not to be underestimated at all.

Johnson adds: "I want people to realise that dementia is just a word. I don't want people to be scared of it or us. Campaigning for people with dementia gives me purpose for life. I need to get rid of the stigma attached to 'dementia'. Diagnosis is not the end of life and people need to keep living."

Earlier this month, Ann Johnson was awarded an honorary doctorate from the University of Bolton for her campaigning for dementia sufferers and her services to healthcare.
