Dementia is often called the long goodbye: a cruel disease that robs those affected of the dignity and independence they once had. The Alzheimer’s Society in the UK defines dementia as an illness with symptoms including memory loss, and difficulties with thinking, problem-solving or language. It is a broad umbrella term used to describe a range of progressive neurological disorders.
The disease is caused when the brain is damaged, for example, by strokes. The specific symptoms that someone with dementia will experience depend on the parts of the brain that are damaged and the underlying causes of the dementia.
A person with dementia will suffer from a list of cognitive symptoms, such as problems with thinking and memory. The patients often have difficulties with day-to-day memory and cognition: recalling events, concentrating, planning or organising, making decisions, solving problems, or carrying out a sequence of tasks, like cooking a meal. Patients may also face problems with language, such as struggling to find the right word for something or follow a conversation. Visuospatial difficulties, including problems with judging distances on stairs, seeing objects in three dimensions and orientation, are common symptoms, as is losing track of the date or becoming confused about where they are.
In addition to these cognitive symptoms, a person with dementia will often experience changes in their mood. They may become frustrated or irritable, withdrawn, anxious, easily upset or unusually sad.
The disease is an isolating experience and can lead to people becoming unrecognisable to their loved ones. Despite its high profile in the media, the disease’s relative prevalence among the general population and its recent popularisation as a topic of Hollywood films, dementia is still not widely understood, and there is no cure.
Medical professionals and other carers, such as social workers and support staff, are still struggling to come up with the best solutions to the problems the condition presents. One is that dementia mostly affects older people, and the mental symptoms soon manifest physically. A new programme hopes to change this by making alterations to patient-care tactics, hopefully producing much-needed improvements in the ways dementia patients live.
NoSH in action
The Dementia Care Unit at St Mary’s Hospital in London is trialling a new scheme, providing five small meals throughout the day instead of three larger meals. It may sound like an innocuous change to the lives of the patients, but poor nutrition is experienced by many patients with dementia who find it difficult to keep themselves well nourished and hydrated. Many forget when they last ate and can struggle to eat large meals due to, among other reasons, an inability to stay focused. Many dementia patients are brought to hospital with symptoms of malnutrition because of this.
As a result of the trial, patients were able to keep their weight up while in the ward; weight gain is a key indicator of improvement for elderly patients in hospital. The frequent delivery of smaller meals also encourages more social interactions and helps the patients keep busy, as they have their days broken up into more manageable chunks and have more regular interactions with staff.
The scheme is called the Nutritional Support in Hospital (NoSH) Pathway, and is a 15-month charity-funded project based in the Imperial College Trust hospitals in west London, one of the UK’s biggest – and most overstretched – public-health bodies. The scheme “aims to improve nutrition and hydration in patients with dementia while in hospital using a person-centred approach. People with dementia are high risk for malnutrition and dehydration (up to 50% in the community, 70% in hospital).”
Research has shown that current practices in hospitals are not good for people with dementia. Most patients are elderly and one of the disease’s main effects is weight loss.
“Weight loss in people outside in the community from before they come to hospital shows deterioration in their condition. A low appetite can lead to slower healing and increased chance of pneumonia,” says Joanna James, lead nurse for dementia at Imperial College Healthcare NHS Trust and the driving force behind the project.
“Many of the patients have distress around eating and drinking,” she says, explaining that they require outside-the-box thinking to get them back into the habit of eating. Some may become forgetful or tired and not eat because of this, while some living with dementia revert to childlike states and crave the foods they experienced in their youth – a common phenomenon, according to James.
“We keep a fund on hand to go out and get the foods people crave. Hospital food can be very bland, so we try to give them food that really works their senses and makes them interested in eating.”
Whether this is spicy food, different cuisines or even – rare for a hospital – sweets and sugary food, in cases of severe weight loss, the staff say that any calorie intake is better than nothing.
Simple and sweet
The team has come up with a number of ways to combat the problem of decreased appetite in dementia patients. The five-meals-a-day solution is just one.
“I’m not pretending that what we give them is always healthy,” James explains with a laugh. “In the morning, we give them bento boxes of sweets and biscuits, just to stimulate their interest in food and give them some energy,” she continues.
“Many of the patients are from a generation when drinking water was unsafe as it wasn’t clean, making them hesitant to drink it now – so we offer them squash and fruit juices. This also has the benefit of being coloured. We’ve had patients become distressed because they couldn’t see water in a clear glass.”
Juice and junk food also has the added promise of sugar, giving patients some alertness while also making them thirstier. This naturally makes them want more water, or some other form of sustenance, to quench their thirst.
The entire process of eating and drinking becomes their lives once they are in the hospital, James says, and she and her team are constantly coming up with new ways to get their elderly patients to eat and drink.
“Some wards put on tea parties, with cakes and biscuits,” she says. These parties not only break up the monotony of being in hospital, but also create a happy, social environment for patients, which can have a positive effect on their well-being and weight, too.
Routine and family
It’s not just food that plays a role in the process of learning about dementia and how to treat it.
“The prevalence of dementia has increased greatly over the past 20 years,” James says. “The ageing population, long lives – it all contributes to the increase, and dementia is made up of 100 different conditions. For years, it was ignored and untreated.” Many dementia care specialists are still at the ‘throw it at the wall and see what sticks’ level of defining proper treatment plans because, for generations, society cast dementia as senility and old age rather than recognising it for the disease that it is.
One of the many other things the team does is use appetite-stimulating aromatherapy oils, which help with cognitive stimulation.
“This also helps keep the patient alert while they’re eating,” says James. They play music – sometimes related to the patient’s own life – as well as giving hand massages. This makes the patients more aware of their surroundings, and draws attention to their hands so they might be tempted to pick at the food.
Often, the most effective method, however, is getting the patient’s family – who can gently cajole them into eating and foster a sense of connection – around them.
James and her team are part of a wider cultural shift around the world as growing numbers of people suffer from dementia and healthcare systems struggle to find new ways to work with the disease. In Imperial College Trust units, there are specially adapted emergency-department cubicles for dementia patients, which are coloured differently, and have games and activities to keep them calm.
All of this is indicative of the holistic approach that must be devised from the ground up as a way to properly placate and treat the patient. NoSH’s ideas of prolonged social stimulation and ‘little and often’ could be the way forward for dementia patients. But, at the moment, many are still looking for new ways to combat the symptoms and, with a cure still beyond reach, the focus is on trying to stem the damage caused by the disease.
