A UK-Based International Center of Expertise Improves the Lives of People with Dementia in Innovative and Practical Ways
The theme of the December 2013 G8 meeting in London, England, was dementia. Anyone who is interested in health, workforce, and finance issues for the aging population of the planet should have listened. In developed countries like the UK, dementia costs more than cancer, heart disease, and stroke combined. This was estimated at £23 billion in 2011. Although people argue about the exact figures, it is highly likely that cases of dementia will double in the next 20 years. In developing countries, this will increase even faster. One problem may be that we are spending more than we need to because we are focusing wrongly on medical solutions when the problem is largely nonmedical.
The Dementia Services Development Centre (DSDC) at the University of Stirling is at the heart of a worldwide movement to improve services for people with dementia. Because of a reduction in the relative population of younger people in some countries, there is anxiety about whether or not there will be enough health and social care workers to care for the increasing number of individuals with dementia. By the time I am 90, as a female, I will have a 50 percent chance of having dementia. How will I be looked after? Although there are children and working-age adults with dementia, the majority of those affected are old or very old women.
Scientists may find a cure in the meantime, but because the changes in the brain that cause dementia are long term, I may still not escape it. Finding a cure for Alzheimer’s won’t help those with vascular dementia, Lewy Body dementia, alcohol-related brain damage, or any number of underlying conditions with different causes and mechanisms. If future services try to use the current hospital and home-based models of care, we will run out of beds and people to look after the patients in those beds. Epidemiologists may have slightly overestimated the prevalence, and public health measures may be slightly reducing some of the risk factors by controlling smoking and managing some diseases that predispose to dementia. But the picture is still gloomy.
So where is the good news? Research shows that much of the disability in people with dementia is actually caused by other people and environmental issues. Dementia impairments include memory loss and difficulty in learning and understanding things. We know that the impairments of dementia do not build up at the same rate as the underlying disease processes. You may find brain damage in people who had no symptoms, and quite severe symptoms in people with mild damage.
At the DSDC, we help people learn about what can be done to reduce symptoms, even though we probably cannot yet affect the speed of the damage to brain tissue. Many of these nonmedical responses can be put into action by families and individuals, thus delaying the need for care. Care workers can also use them to maintain a person’s strength and independence. This saves money while also enhancing the lives of those affected.
The things that can reduce symptoms of dementia include keeping up with exercise and social activity. Nutrition and hydration are also crucial. In later life, we all need to be aware of the value of keeping good health through managing other conditions such as diabetes, depression, blood pressure, and obesity. Advice and support for family caregivers on how to provide personal support for the person with dementia is at the heart of our work.
Most famously at the DSDC, we focus on the effect of design of the environment. Hospital environments are particularly harmful for people with dementia. In acute hospital settings, patients with dementia are sometimes sedated to deal with their stressed behavior, and they may miss out on eating and drinking as they sleep through meal times. Often there is no one to talk to and nothing to do during the long days in the hospital. Research shows that patients with dementia often refuse pain relief, even when they clearly could use some. All of these factors make patients with dementia vulnerable to depression and delirium while they are in a hospital. The net effect is that an expensive modern intervention, which is intended to help, actually causes more harm and makes dementia symptoms worse. In the UK, it is not unusual for an acute hospital episode for a person with dementia to stretch out longer than expected, and to end with the loss of their home and admission to an institution. However, some of this is avoidable.
A good example of this is the effect of light. In some cases, getting the light right in the environment can make more difference than medication in dementia. First, all older people have yellowing of the cornea of the eye that restricts vision. They need light at much higher levels to see the same as younger people. If you cannot easily remember where things are, it helps if you can see where they are. Remembering, then, is not quite so crucial. Second, sleep is affected by diurnal rhythms in the body that, in turn, are affected by the hormone melatonin. If the production of this hormone is disrupted, it can cause nocturnal wakefulness. People who are already confused get up in the night and may wander into danger—or at the very least frighten and worry their household. Melatonin is naturally produced in the body as a result of light falling on the retina of the eye. In older people, daylight exposure needs to be increased because of the thickening of the cornea that reduces the efficacy of light. If you can expose a person with dementia to daylight, particularly in the early part of the day, you can help reduce nocturnal disturbances. Simple design changes or changes in routine can thus make a significant difference to two important dementia symptoms. Currently, not many health or social care professionals make recommendations about lighting or daylight exposure to family caregivers or people with dementia. Exposure to daylight is often impossible in hospitals.
Information about dementia-friendly design is freely available from DSDC through their website at: http://dementia.stir.ac.uk/design/virtual-environments. Checklists are available to help anyone introduce design ideas that will reduce stress for a person with dementia and help them overcome the difficulties associated with the condition. Advice on assistive technology is available to download at: www.dementiashop.co.uk/node/287.
If we are able to keep people at home longer through design, what help and advice will they and their families need to stay well during this time? Research shows that there are a small number of common but occasional hazards that families find hard to manage. These include aggression, wandering, sleeplessness, agitation, and anxiety. For each of these, the DSDC has published 10 non-pharmacological hints based on evidence of what works. Our research shows that health and social care staff are not provided with undergraduate or preregistration education on the practical issues that affect families, even if they do get some academic input into dementia. Families ask, “Why did no one tell us this before?” The answer is because they did not know themselves.
A major challenge is getting health and social care staff to take dementia seriously and make the diagnosis. At the time of writing—even with a national program in England called the Prime Minister’s Challenge, which has been running for more than a year—the number diagnosed has only increased from 42 percent to 45 percent. This means more than half of those affected do not even know what is causing their problems. Diagnosis is the key to getting help, so failure to diagnose is a significant problem. In Scotland and Northern Ireland, the diagnosis rate is closer to 75 percent. This is an indication that, within a very similar health care system, better diagnosis rates can be achieved.
What makes a dementia-friendly community is anything that can prevent unnecessary dependence and stress for a person with dementia and their caregivers. The DSDC works with regions to help them make the necessary and sometimes very personal commitments to making this happen. Whether it is the fire chief or the chief executive of the health system, everyone needs to work together using the research evidence that is available. The DSDC is committed to this work. For more information, go to www.dementia.stir.ac.uk
about the author
Professor June Andrews is director of the Dementia Services Development Centre at the University of Stirling. She was awarded the Chief Nursing Officer’s Award for Lifetime Achievement and received the prestigious Robert Tiffany International Award. She headed the Royal College of Nursing in Scotland and directed the Centre for Change and Innovation within the Scottish government in addition to her career in the National Health Service. She advises health departments and service providers around the world, and is a trustee of the Life Changes Trust, an independent charity disbursing grants totaling £50 million across Scotland. She is also the nonexecutive director of Target, a real estate investment trust.