Prof June Andrews, director of the Dementia Services Development Centre (DSDC) at the University of Stirling in Scotland, is in Belfast to launch her book, Dementia: The One-Stop Guide. As we sit talking about the book, her eye takes in someone with dementia among those gathering to hear her speak.
“She’s looking around now and will get up for a wander soon,” says Andrews.
“We already have people looking out for her but it’s best that only one person deals with her face-to-face, to prevent her getting confused.”
This exchange presents just one of the powerful messages of how to make life easier for people with dementia that Andrews writes clearly about in her new book.
“I got both my parents to proofread it: my mother corrected any spelling mistakes and my dad made sure I got rid of any complex language,” she says.
The book has already received widespread attention in the British media, not least because Andrews makes a strong case for avoiding an acute hospital admission for people with dementia.
“The headlines read as if I was attacking the National Health Service, but really my aim is to support families to help their family member with dementia at an emergency department and/or if they are admitted to an acute hospital, because an acute hospital admission often precipitates that person going into a care home.”
Managing care at home
She emphasises the importance of one familiar face, keeping the person hydrated, making sure medicines are taken on time and keeping the person in a warm, quiet place. “Leave your work and be with them, and bring them home from hospital if possible.”
One of the strongest sections of Andrews’s book is the chapter on managing care at home.
“Most people with dementia live at home and half of those who live in their own home live alone. It is perfectly possible for a person with dementia to be happy at home for a long time and to do very well, right to the end of their life,” she writes.
But for this to happen, Andrews stresses there needs to be a careful and consistent approach to keeping the person well at home. She charts what she calls the two tracks that a person with dementia can go on: staying well as long as possible, or going downhill fast.
With good diet, exercise, sleep and correct medication combined with socialising, avoiding hospital, mental stimulation, appropriate design features in their home and stress reduction, they can stay well for years. However, if many of these elements aren’t in place, the person can go downhill fast.
Prof Andrews is a former trade union leader, NHS manager and nurse. As director of the DSDC, Andrews says she feels as if she is spreading an important message about an illness that is little understood. “I’d really like to be the director of the public understanding of dementia. Early diagnosis is important so that people can access help and make the changes recommended in the book.
“If you make the right lifestyle changes, you can delay dementia for as long as possible; and even if you’ve got it, you can delay the day when you lose your home and dignity.”
At the Belfast launch, people speak about how relatives’ health declined so quickly, sometimes moving from coping reasonably well to going into an acute hospital and being sedated to keep them quiet, resulting in immobility and, very quickly, incontinence.
In her book, Andrews clearly distinguishes between what is and isn’t dementia. So, depression, delirium (temporary confusion due to an infection or too much medication) and mild cognitive impairment are not dementia and Alzheimer’s Disease, vascular disease, Lewy body dementia and frontotemporal dementia are some of the many forms of dementia.
The main symptoms of dementia are difficulty remembering things, difficulty working things out, difficulty learning anything new, difficulty coping with physical and sensory impairments due to ageing, illness or an accident, and difficulty finding your way about. In her book, Andrews gives lots of advice about managing disruptive behaviour and how to create a dementia-friendly home. The DSDC’s dementia design school runs international training in good design practice and assistive technology at the Iris Murdoch Building in Stirling.
Andrews says that even with larger numbers of people being diagnosed with dementia, there is still a lack of training among nurses and doctors. “Traditionally, health and social-care workers learned about the neurodegenerative brain condition but didn’t get training in experiences such as ‘she screams during the night’; ‘my father won’t eat’; or ‘my sister doesn’t recognise me any more’. Some doctors don’t know what to say, or say ‘there’s nothing we can do’. They are so wrong about that.”
She is also dubious about the relatively new emphasis on creating dementia-friendly communities.
“I think governments need to focus on diagnosis and post-diagnostic support, using the systems and staff that already exist but may not have dementia education and support. We also need to look at what will make carers stronger and more able, which is the best protection against the institutionalisation of people with dementia.”
With more focus on dementia now, she says many media reports and representations are nonetheless unhelpful. For example, the film Still Alice conveys the idea that dementia is the worst thing that can happen to a person.
“There are lots of illnesses that are more painful and debilitating. I’d hate to have emphysema and be unable to breathe properly, or to have the pain of pancreatic cancer. It is horrible, but an early diagnosis of dementia can allow someone to get on medication, set their affairs in order and give them some time to talk to others about what they want to happen if they lose the capacity to tell them.”
Andrews also says that often the person with dementia “seems to know more than most of us would believe”. She says, “There is a communication problem and that means they often are not expressing themselves in a way we understand. That does not mean that they are not taking things in, and even your non-verbal expressions will have an effect and they will know what you are thinking. At the early stages, it is clear that people are aware. We know that because they go to such lengths to conceal the fact that they think they have a problem. The safest thing is to assume that the person with dementia is more aware than you would ever imagine.”
Dementia: The One-Stop Guide is published by Profile Books
