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Dementia: An underestimated problem
The risk of developing dementia in-
creases with age. In 65-to 69-year-
olds, the percentage of dementia
patients in Germany is at about 1.2
percent, in over 90-year-olds it affe-
cts about a third of all people;
© panthermedia.net/Scott Griessel
Dementia is an acquired and global impairment of the higher brain functions, among other things affecting memory and the ability to handle everyday life. Generally, dementia is a progressive disease process. It particularly affects the social and sensory-motor behaviors, speech and the control of emotional reactions. The risk of getting dementia among 80- to 84-year olds is between ten and 17 percent. The older people get, the higher the risk becomes. Among the over 90-year-olds, approximately every third person is affected. Young people only rarely suffer from dementia. Globally more than 35 million people are affected by dementia.
Dementia – is a giant being ignored?
In their World Alzheimer Report 2010, Alzheimer’s Disease International (ADI)1 estimates the worldwide total cost for dementia at 604 billion US dollars, of which 70 percent of these costs arise in North America and Europe. Globally the number of affected people is said to double every 20 years. This means that virtually all countries with high life expectancy are facing entirely new challenges, both in terms of care for dementia patients as well as the associated costs.
If dementia were a company, it would be the largest company in the world with total revenue of 600 billion US dollars, nearly 200 billion USD more than for instance Wal-Mart with 414 billion American dollars, according to ADI. If dementia was a country, it would rank at number 18 in an international comparison, between Turkey and Indonesia.
Although dementia is already a global problem and its numbers should scare politicians as well as other persons in charge, only a few countries are getting ready for the increasing problem in terms of concepts, initiatives or the like.
Experts sound the alarm, not just because of the escalating number of new cases. In many countries, the health care systems are not prepared for caring for so many dementia patients. Experts are lacking in adequate training to provide appropriate support services, since to this day most types of dementia are incurable. The course of the disease however can be slowed down with special therapies.
In addition, dementia doesn’t just affect the patient. Family members and friends are also more or less strongly affected on a personal, emotional, financial and social level. One difficulty that runs across all countries is the lack of awareness – the problem is simply underestimated.
Dementia – a luxury disease?
In its report, the ADI points out that in 2010 just below one percent of the total global costs are attributed to countries with low incomes, yet the disease incidence is at 14 percent. Middle-income countries make up ten percent of the costs with an incidence rate of 40 percent and high-income countries take up 89 percent of the total costs at an incidence rate of 46 percent.
It varies based on the development status of a country as to who incurs the expenses and the health care for dementia patients. In low and middle-income countries it is primarily family members and friends who look after dementia patients. These are also those countries where the number of dementia cases will strongly increase over the next few years, ADI predicts.
The total cost of dementia varies
The cost of dementia patients strongly vary. In low-income countries ADI quantifies the cost per dementia patient at 868 US dollars, in contrast to high-income countries at 32,865 USD. According to current ADI estimates, the total costs will increase 85 percent until 2030.
Nevertheless, many industrial nations are not prepared for this imminent problem. There is a lack of public awareness of this disease. In view of this increasing problem, governments and health care systems of countries should reposition themselves and tackle necessary restructuring and financing concepts. Research also needs more support. Affected persons, their family members, physicians and caregivers should be adequately qualified.
How does politics respond?
The German Ministry of Health (BMG)2 in its directive for dementia has compiled large amounts of information on its Internet page for affected persons, family members and caregivers; starting with the disease pattern and help for everyday chores and home care, statutory benefits, rights and duties of patients and their family members all the way to contact addresses of organizations, support groups and other items.
Within the scope of the "Leuchtturmprojekt Demenz" (Lighthouse Project on Dementia), from 2008 to 2009 the BMG sponsored a total of 29 projects with about 13 million Euros, which are meant to improve the care for people with dementia. Aid was appropriated in four topics; among other ones was the assurance of evidence-based health care.
Since the start of this year, there is the "Zukunftswerkstatt Demenz" (future workshop on dementia), which harks back to the results gathered in the past and is meant to complement them by putting the existing knowledge into practice in routine health care. From the view point of the BMG, the particular need for action ensues in the creation of regional dementia networks as well as in the support for family caregivers of dementia patients.
One of the objectives of the future workshop on dementia is to develop a ”Serial Trial Intervention (STI) “ that’s adapted to Germany. The idea for this originates in the U.S.A. There is a cause for the challenging behavior in dementia patients. Americans have created a type of guidance system with STI that is intended to help caregivers identify the one cause out of many possible causes for challenging behaviors, for example pain, to then be able to specifically respond and eliminate the cause.
In 2010 dementia globally
costs approximately 604 billion
© panthermedia.net/Olaf Kar-
What happens abroad?
Similar programs like the German project future workshop for dementia (“Zukunftswerkstatt Demenz“) can also be found in other countries. The governments of Australia, England, France, Korea, Norway, Scotland and Wales for instance have designed their own national programs with which they want to tackle important steps to effectively confront the increasing problems. Needless to say there are country-specific key aspects.
Over the past ten years, Norway has already started several nationwide initiatives and placed special emphasis on supporting family members of dementia patients. In their current 2015 dementia plan five main strategies have been worked out, among other things the collaboration between experts is meant to be improved, research and development is supposed to be advanced more rapidly and families are meant to be supported. Another focal point is the study of dementia disease in young people.
In the introduction of Scotland’s National Dementia Strategy Paper, public health minister Shona Robison declares dementia and dealing with dementia a national priority. We are not quite there yet in Germany, at least when it comes to the political level. Since 2008 the government advocates a more open dealing with dementia through publications and extensively provides information on the disease and possible treatments.
In August 2008 the Scottish government founded the ”Dementia Clinical Research Network for Scotland“ and has funded research with over one million pounds. It is assisted in this by the “Alzheimer Scotland“ charity which has led to a productive collaboration.
In addition, the Scottish government supports several pilot projects, among them the “Renfrewshire and East Renfrewshire Post-Diagnostic Support Pilot Project.“ Here people with early dementia onset are meant to be counseled and trained to manage their disease, stay integrated in social life despite their disease and look for appropriate solutions for the future on their own.
Korea also uses strong statements and talks about the ”War against Dementia”. There the focal point is in developing awareness for the problem, research and the support of family members. Through 2012, 6000 specialists are scheduled to be trained for dementia. In addition, the creation of a national center for dementia is planned.
The Netherlands have a particularly innovative project for dementia patients and their relatives. In Hogewey, a very special nursing home east of Amsterdam in Weesp, an entire part of town is specifically geared toward the needs of dementia patients, including a bakery and beauty salon. Here, patients can live together with their relatives. Each of the small houses accommodates a maximum of six residents who can do an outing to a Café around the corner without any problems.
In January of 2008, the governments of the US states Iowa and Kentucky have published their own reports on the dementia subject. In it, they don’t just report about the problem of dementia, but an analysis of infrastructures as they relate to the care of dementia patients, the current state of research as well as recommendations and possible strategies for the government are also mapped out in the report. To support family caregivers, among other things it was suggested to introduce a firm budget to the US government.
What can we learn from foreign countries?
With their “International Study and Education Program on Dementia“, the Robert Bosch Stiftung (Robert Bosch Foundation)3 supports physicians, caregivers and other experts during job-shadowing in foreign countries with the objective to get to know innovative projects for improving the care and quality of life of dementia patients and thus gain impulses for the work in Germany.
“It is about looking at the big picture“, says Detlef Rüsing, Healthcare Scientist and Assistant Director of g-plus – Center of International Health Care4, which is in charge of the program of the Robert Bosch Stiftung. “Primarily people who have heard of an innovative idea that is not yet underway in Germany are applying for a job with us.“
“One advantage is that this is not about further education that’s heavily loaded with theory“, according to Professor Elke Donath, Director of the g-plus Center. “For all intents and purposes, participants learn on a model, a kind of learning by doing. They see how an innovative concept is being implemented and that it works. “They can discuss with experts directly on location and ask questions. Of course the concepts can not always be transferred one-to-one. The health care systems in the different countries vary and there are other financing concepts. “But the participants can identify potential barriers beforehand and return with many new ideas and an enormously high level
Dementia patients lose their own
initiative, neglect their former hob-
bies, their personal hygiene and
keeping their home clean;
© panthermedia.net/Meseritsch Herby
Impulses to use in practice
In Scotland for example, the Dementia Services Development Centre (DSDC) wants to raise the awareness of dementia and aside from continuing education opportunities also has several projects where the latest scientific findings in the layout of living spaces for dementia patients are being implemented. To gain corresponding impulses for a scheduled renovation, two co-workers of a German facility visited the Murdoch Building in Scotland, which is geared towards the latest scientific findings in its design.
Back in Germany the gained knowledge was taken into consideration in the new color scheme of the buildings based on the Scottish role model, which was able to be carried over into the German facility without any problems. The nursing staff was already able to notice after a short amount of time, that this new color scheme and ambience design had an affect on the resident’s behavior.
Another participant of the training program job-shadowed at the Birchaven’s Schaefer Care Center in the U.S.A. where people with early-onset dementia reside. This center has an innovative concept where zest for life and sense of self-worth in dementia patients are meant to be boosted by creating encounters between children and senior citizens. While being preoccupied with the children, dementia patients perceived themselves as competent and helpful, while the children at the same time obtained a unique intergenerational learning opportunity in normal day-to-day life. While baking together for instance, one of the regular recurring activities, resident dementia patients experienced that they can once again do things they had done all their lives and visibly felt comfortable in the family type atmosphere and regained a sense of belonging.
But Germany doesn’t need to hide when it comes to an international comparison, Rüsing believes: ”You can also learn abroad how well we actually are doing our job.” We also have exciting concepts. There are individual institutions or nursing homes that do some very innovative work. North Rhine-Westphalia for instance has taken on a leading role in Germany with its dementia state initiative. Yet the differences between facilities and the German federal states are still very large. “What we urgently need is a comprehensive national dementia master plan on the highest level,“ says Rüsing.
The problem cannot wait
”Dementia is the health challenge of the next decades,“ according to Rüsing. “We should openly reflect, sit together and consider what people with dementia need and only after pondering this, how we can fund it.“ Other countries are much farther ahead in terms of research, awareness of the problem and care for dementia patients, says the expert.
Due to demographic changes people are getting older and the number of dementia patients will continue to strongly rise. New concepts and more research are necessary to cope with the upcoming challenges. International collaborations can help in conquering a global problem. All involved parties benefit from a network of institutions within Germany and the active contact to facilities in foreign countries.
It is particularly important to bring the subject of dementia to a wider public, to inform and aside from research to also improve care. Family members and caregivers should be more strongly supported in this case. Otherwise you run the risk of exploding costs making adequate support impossible and innovative projects perhaps being implemented in individual facilities, yet in contrast care in general is rather poor.
(Translated by Elena O'Meara)
1: World Alzheimer Report 2010
2: The German Ministry of Health (BMG)
3: Robert Bosch Foundation
4: g-plus – Center of International Health Care