The challenge of dementia - developing care structures for the future

According to Benjamin Gompertz's (1779-1865) law, a person's age increases linearly. However, the probability of developing a chronic illness, needing care or developing dementia increases exponentially over the course of life [Gompertz, 1825]. In our aging society, dealing with chronic illnesses, need for care and dementia plays a crucial role in managing the aging process in the population. The establishment of new or conversion of existing care structures, the further training of medical and non-medical specialist staff as well as the targeted coordination and inclusion of informal assistance is urgently required in order to be able to adequately care for the increasing number of older people with dementia.

>> In Germany, over 1 million people currently suffer from a form of dementia, with the majority (around two thirds) suffering from what is known as Alzheimer's dementia. Information on the annual rate of new cases varies in the literature. In general, it is assumed that there are around 200,000 to 250,000 new cases per year [Alzheimer Europe, 2007]. As a rule of thumb, the risk of new illnesses is very low under the age of 65. According to international estimates, the annual risk of new disease increases from approximately 0.4 % in 65 to 69 year olds to over 10 % in the very old [Bickel, 2000; Bickel, 2005; Alzheimer Europe, 2007]. Demographic developments with the resulting double aging of the population are therefore significantly increasing the problem. As people are getting older and too few children are being born, the age structure of the population is also changing. While the number of people over 60 will increase by around 10 million by 2050, the number of 20 to 60 year olds will decrease by around 16 million over the same period [Federal Statistical Office, 2006]. The existing care structures for dementia patients in outpatient settings will probably no longer be sufficient. Although around 65 % to 85 % of all patients with advanced dementia are institutionalized during the last phase of their lives and around two thirds of all nursing home residents in Germany have a diagnosis of dementia, up to 60 % of all dementia patients are cared for at home [Schneekloth and von Törne, 2007 ]. Due to the high stress and demands of dementia care, the caring relatives, usually children or spouses, also have a higher morbidity than the average in the population. Due to social and demographic developments (higher divorce rates, childlessness, mobility requirements at work), the need for professional help will increase if people suffering from dementia are to receive adequate long-term care in their familiar surroundings. What makes matters worse is that the majority of dementia sufferers are over 65 years old. In this group there is a high level of multimorbidity on average in the population. For example, one in three people over 75 suffers from up to five - mostly chronic - illnesses.
Care structures for people with dementia
Germany - status quo
In the care of people with dementia, there is a need for optimization in many areas of diagnostics and therapy [Arlt et al., 2008; Dörner, 2008; Nesseler, 2008]. In particular, a lack of knowledge of care structures, a feeling of shame on the part of those affected and fear on the part of the doctor of losing or injuring a long-standing patient mean that, on the one hand, relatives are not adequately informed about the diagnosis and its implications as well as possible therapy and help offers, On the other hand, however, the necessary differential diagnostics and pharmacotherapy are not carried out [Dörner, 2008; Gräßel et al., 2009; Kaduszkiewicz et al., 2009; Quinn et al., 2009]. The lack of integration of the various service providers, cost and service providers involved in the care of people with dementia, as well as those involved in civic engagement, means that non-pharmacological therapy offers are often not known to all providers and therefore patients and their relatives are not informed about them. Although these therapy offers have been scientifically proven to be effective and can make an important contribution, for example, to maintaining everyday skills and thus remaining in the home environment. Deficits in therapy according to scientifically proven recommendations mean that not all patients receive appropriate drug therapy. On the other hand, however, sometimes unsuitable tests are carried out repeatedly, while, for example, psychiatric and neurological comorbidities in these patients are often not recognized. This leads to hospital admissions that could have been avoided through adequate and early diagnosis and therapy. An important problem in the care of patients with dementia is the support of caring relatives. The excessive demands of the home care situation and the lack of knowledge about support offers such as self-help groups, low-threshold offers such as dementia cafés (§45a-d SGB XI), leisure activities, day and night care or non-pharmacological interventions often cause caring relatives to become exhausted towards depression.
In order to optimize supply structures, a large number of projects are currently being carried out in Germany. Examples include the dementia service centers in North Rhine-Westphalia [KLDS-NRW, 2009] and the dementia lighthouse projects funded by the Federal Ministry of Health [BMG, 2008]. There have also been a number of extensive reforms in the past to improve the framework conditions for innovative care concepts. Paragraphs 140 ad SGB V and 192 b SGB XI provide the possibility of integrated care and thus the networking of various actors involved in the care of chronically ill people. Particularly noteworthy is the 2008 care reform, in which the newly created § 7a SGB , care or support needs exist. This includes the systematic recording of the need for help, taking into account the MDK report, the creation of an individual care plan, the initiation of the necessary measures, including their approval, and the monitoring and, if necessary, adjustment of the care plan. The care advice should take place in care support centers (Section 92c SGB XI), which have been successively set up in almost all federal states since July 1, 2008. In addition to serving as a contact point close to home for all questions relating to the topic of care, the care bases are primarily responsible for recording and networking all available help and support offers and identifying gaps in care and working towards eliminating them.
In summary, it can be stated that the framework conditions for the further development of the care landscape have been created in Germany, particularly through the 2008 nursing care reform. It is now important to take advantage of these opportunities and to network all those involved in the care of dementia patients close to home and to design care pathways that can be flexibly applied to the individual needs and requirements of those affected.
Goals of medical care
older people with dementia
When optimizing care structures for patients with dementia, improving or maintaining the health-related quality of life of patients and relatives is a priority. The aim should be for patients to be able to stay in their familiar surroundings for as long as possible. This requires suitable outpatient care structures that avoid hospital stays, maintain independence for as long as possible, delay institutionalization and the need for care, and protect the health of caring relatives as much as possible. This requires improving integration and coordination of care. For example, integrating geriatric rehabilitation into outpatient care can delay the need for care for people with dementia and promote the maintenance of independence [Vollmar et al., 2008]. In addition, however, it is necessary to set up new care structures that go beyond the coordination and integration of existing medical and nursing services and take the following factors into account:
• Dementia patients usually suffer from more than one
Disease (multimorbidity)
• The disease can take a long time course
• It almost always occurs in the last stages of life
Need for care
• Caring relatives need special support
and relief
Care structures for people with dementia in Germany - epidemiological and social developments require requirements
future developments
The urgency of taking these factors into account when setting up new care structures arises from epidemiological facts and the changing social conditions: in 2050, around 2.3 million people will probably live with dementia in Germany. At the same time, the “classic” care structures that are supported by families will decrease. This shifts a significant portion of the costs to nursing care insurance. The Federal Statistical Office's medical cost calculation for 2002 already shows around 5.6 billion euros for dementia. The lion's share of around 3.6 billion euros goes to inpatient and day-care care. The unpaid care costs of caring relatives are not taken into account here. If one assumes that around 60 % of all dementia patients are cared for at home and that this number will shift to the detriment of inpatient care due to structural changes in the population, but at the same time the prevalence of dementia will increase due to the aging of the population It is possible to estimate the importance of establishing outpatient care structures that enable care in a familiar family environment for as long as possible. The long-standing family doctor plays a key role in such concepts. In addition to the trusting doctor-patient relationship that has been built up over the years, the coordination of all actors and all necessary treatment processes from prevention to diagnostics, therapy and rehabilitation can be well anchored in primary care. In comparison to already established care structures for chronically ill people, such as disease management programs, the structures for caring for people with dementia should be designed differently for several reasons: (1) Due to the emerging shortage of doctors, the care costs will not be able to be afforded by the doctor alone. (2) The special support needs of relatives require additional and differently designed care structures than medical care. (3) Delaying the need for care and maintaining health-related quality of life are of great importance. (4) Existing structures are usually designed to care for patients with a defined diagnosis and are often only very limited in their suitability for the care of patients with dementia. In addition, the problem of multimorbidity is not adequately taken into account in existing structures, such as the DMPs.
It is already becoming apparent that the problems mentioned in the outpatient care of dementia patients can only be solved in the long term through a new division of tasks between the medical and nursing professions and through improved interprofessional cooperation. The current usual distribution of roles and activities in outpatient care is geared towards the role of the doctor as the central decision-making position. This results in a lack of flexibility to respond appropriately to the problems caused by aging, multimorbidity and dementia. The Council of Experts also points this out in its 2007 annual report on the topic of “Development of cooperation between health professionals as a contribution to efficient and effective health care” and recommends a multi-professional outpatient team for “the transfer of the principles of the chronic care model to improve outpatient care Germany and the increased use of non-medical health professionals for advisory, educational, organizational and preventive tasks” [SVR, 2007; SVR, 2009]. According to the recommendations of the National Association of Statutory Health Insurance Funds, the nursing advisors, who since January 1st of this year have had to carry out case clarification and management for all applicants and recipients of nursing care insurance benefits, should, in addition to a non-medical basic professional qualification, undertake further training modules in the areas of nursing specialist knowledge, Have gone through case management and law [GKV-Spitzenverband 2008]. Consequently, this complies with the described requirements of the Council of Experts.
Care for people with dementia
multi-professional outpatient team –
the guided care model as a further development
the chronic care model
A team of researchers at Johns Hopkins University led by Chad Boult developed the Guided Care Model (GC) based on the Chronic Care Model and other effective interventions. The resulting model was adapted to the general practice area. The effectiveness and cost-effectiveness of GC has now been proven [Wolff et al., 2009; Leff et al., 2009; Boyd et al., 2007]. What is special about GC is the implementation of care structures for multimorbid older patients at risk, regardless of a specific diagnosis and taking medical and functional outcomes into account. Around 8 % patients cared for in GC suffer from dementia [Sylvia et al., 2008]. Nevertheless, initial evaluations provide evidence of a reduced number of hospital admissions, shorter hospital stays and a lower number of care services in the group of GC patients compared to a control group in a pilot study. These results were confirmed in a cluster randomized study [Leff et al., 2009]. Although patients in the GC group received a higher number of specialist visits, more diagnostics and therapy, the overall costs were lower compared to the control group.
To this end, GC is implementing an interprofessional team approach analogous to the Expert Council's proposal. A specially trained non-medical health professional takes on eight interprofessional and interdisciplinary areas of responsibility in close teamwork with the family doctor (Fig. 1).
She carries out a comprehensive assessment of the patient to be cared for in the home environment, on the basis of which an individual patient care path is developed taking into account evidence-based practice recommendations. This integrates content from the areas of diagnostics, care, therapy and care. In contrast to a patient path, which is primarily aimed at presenting the therapy process, the care path takes into account elements of care such as training of relatives, arranging self-help groups or day care as well as the consideration of functional and nursing aspects on an equal footing with aspects of therapy and diagnostics. All aspects are coordinated with the preferences of the patient and their relatives as well as the family doctor's recommendations for diagnostics, therapy and care and entered into an electronic patient file. From the individualized care path, a patient protocol is created that is understandable for the patient and relatives and is hung in a prominent place in the patient's home. It contains all important health and behavioral information as well as the individual therapy plan. The healthcare professional contacts the patient and their relatives by telephone or in person at least once a month to discuss the therapy and care plan, identify any new problems that have arisen and make any necessary adjustments in consultation with the doctor. In the event of acute problems, hospital stays or requests from the patient or relatives, the care path can be adjusted at short notice. It is important that the results are transferred to both the care pathway and the patient protocol.
In addition, the health professional coordinates and integrates medical and non-medical care and informs patients and relatives, for example, about self-help groups, day care facilities and other supportive measures. The GC approach is proactive. Similar to disease management programs, episodes of care are triggered equally by evidence-based protocols and episodes of illness. Medical and nursing goals such as maintaining functionality are equally important and are measured in the evaluation. For patients whose illness requires strong involvement of relatives, as is the case with dementia patients, GC can be expanded to include the “GC for family and friends” component. In this additional module, which is also carried out by the non-medical health professional, five special interventions for caring relatives are brought together and integrated into the individualized therapy plan:
1. Initial meeting with a personal conversation
2. Training (information) and placement of others
Support offers
3. Continuous coaching
4. Workshop offer
5. Support Group Offer
The initial meeting between carers and the healthcare professional takes place in the home environment after the patient has been assessed. The meeting is prepared by a questionnaire that the relatives receive and return before the meeting. In the questionnaire, the caring relatives are asked to describe the care they provide as well as a description of their expectations for information, training, other support services, etc. Appropriate support offers are also provided through individual information provision. The continuous coaching of the caring relatives includes the availability of the health professional by email and/or telephone during regular working hours as well as the opportunity to talk before and after health-relevant events such as a hospital admission or a change in therapy. The offer to take part in a workshop and a self-help group is open to all caring relatives. While the support group offered by the health professional takes place once a month and is moderated by the health professional, the workshop takes place as a 90-minute group session over 6 weeks. Initial evaluations lead to the conclusion that the additional module “family and friends” had a moderately positive influence on both the feeling of stress and the occurrence of depression among caring relatives [Wolff et al., 2009].
GC was not developed for patients with dementia, but for multimorbid risk patients with chronic diseases. Through this and the systematic implementation of scientifically proven effective interventions, the special requirements placed on outpatient care structures for people with dementia can be met to a high degree. Multimorbidity is taken into account by creating an individualized care pathway that contains evidence-based recommendations for all disease entities of the individual patient. In contrast to the traditional patient path, in addition to diagnostics and therapy, a care component for patients and relatives is also part of the patient path. Continuous care from health professionals ensures continuity even during long periods of illness. Integration and coordination of medical, nursing and non-medical services as well as the training and information of patients and relatives are comparable to extended case management.
Conclusion and outlook
Caring for people with dementia will be the biggest challenge of the next decade. The German healthcare system is facing an unprecedented task that it cannot cope with without the involvement of all stakeholders in the healthcare system. Above all, it is important to combine all efforts to focus on the disease in health services research and to implement the results of the research into everyday care.
However, the associated discussion about the redistribution of roles, competencies and tasks between the professions should not be conducted under the aspect of “delegation vs. substitution”. Rather, the basic idea of diversification and “enhancement” should be in the foreground. In the spirit of the Advisory Council, this means, on the one hand, the creation of pooled competencies and, on the other hand, the filling of new tasks in care management by appropriately more qualified non-medical health professionals.
Through the legal right to case clarification and management, as well as the establishment of care bases, the framework conditions have been created in Germany to develop sustainable structures that meet the requirements for the care of dementia patients. However, close cooperation with the medical sector is not only mandatory for success, but it also represents one of the major challenges that nursing advice will have to face in the next few years. Here, care centers in particular have a duty to create appropriate conditions to ensure adequate care for people with dementia. Adapting elements of the American guided care model to Germany could provide important assistance. <<