Status and future of dementia care

Dementia diseases present new challenges to societies in industrialized and emerging countries. Dementia is a clinical syndrome consisting of a memory impairment and other cognitive performance disorders. Dementia thus attacks the fundamental roots of social participation, which are based on autonomy and the ability to communicate. Dementia is not an inevitable consequence of aging. Over 80 % of 80-year-olds do not suffer from dementia.
The media treatment of dementia at all levels, 53 detailed cinema and television films alone, mostly in recent years (Segers 2007), as well as its cover presence in many print media (e.g. cover of the August issue of “Focus”), has affected the older population in terms of the risk of dementia, its symptoms and in particular the fact that increasing memory loss is not normal with age. The name Alzheimer, the most common form of dementia, is now the best-known doctor's name worldwide.

>> Brain changes that increase with age are the driving force behind memory impairment. These brain changes can be divided into degenerative and vascular changes. Delaying the development of these changes by 5 years would halve the incidence of dementia. This would prevent the foreseeable doubling of the prevalence of dementia in Germany in the next 20 years. Studies on the prophylaxis of dementia through behavioral measures such as dietary changes or physical and mental activity are currently being carried out on a smaller scale. For example, in an Australian study, seniors were able to perform better cognitively when they did moderate running training. However, the extent to which these minimal cognitive differences can postpone the diagnosis of dementia could not be shown in this study (Lautenschläger et al., 2008). Overall, however, the behavioral risks for dementia appear to be significantly lower than, for example, for diabetes mellitus.
Evidence for postponing dementia exists for consistent hypertension treatment, blood lipid-lowering drugs (statins) and some painkillers (non-steroidal anti-inflammatory drugs, NSAIDs) (Förstl et al., 2009, Hüll et al., 2006). However, evidence of a protective effect from prospective studies is lacking. The Federal Ministry of Education and Research (BMBF) is currently funding studies on statins in the clinical studies funding program and NSAIDs in the degenerative dementia competence network funding program. Clinical studies in this regard are very complex due to the large number of participants required and the observation over several years.
Cohort studies on risk factors for dementia have been carried out in other European countries and, to a lesser extent, in Germany. In connection with the founding of the German Center for Neurodegenerative Diseases (DZNE) in the Helmholtz Society, considerations are also being given to integrating dementia-specific questions into the Helmholz cohort studies in Germany. With largely correlative data available from observational studies in other European countries, further knowledge growth will come especially from intervention studies. While patent-protected pharmacological interventions are being tested by companies, the financing of clinical studies on prophylaxis with non-drug interventions or off-patent medications appears to be particularly worthy of support from public funds.
Dementia diagnoses are only being made
documented in the 3rd year of illness
Age is a major risk factor for dementia, with an exponential increase in risk. Three out of a hundred healthy 80-year-olds develop dementia every subsequent year of life; by the age of 90, over half of all people are affected (Qiu et al., 2009). While these data come from epidemiological field studies and show a high degree of agreement between European countries, Canada and the USA, the validity of the health insurance company's diagnostic data must be viewed critically. According to German health insurance data, the incidence rates for a dementia diagnosis are approximately 30 % below the incidence rates from field studies for mild dementia. In other words, the incidence curve of documented dementia diagnoses has moved forward from the epidemiologically safe incidence rate by 3 years towards an older age (www.rostockerzentrum.de/publikationen/rz_diskussionpapier_24.pdf). Reasons for a late diagnosis can lie on the part of the person affected, their family or even the treating doctor, who may incorrectly judge a memory disorder in old age to be normal or avoid the topic due to the stigma (see 3.2.1. www.degam.de/ typo/uploads/media/LL-12_Langfassung_gekuerzt.pdf). These reasons may also contribute to a reduced incidence of dementia diagnoses compared to field studies, especially in the very old (see Fig. 1).
Stigmatization delays diagnosis
As with other illnesses with psychological symptoms, there is a high degree of self- and external stigmatization in dementia. In the 2001 World Health Report, Gro Harlem Brundtland, Director General of the WHO, noted the social exclusion of people with brain disorders: “Many of us still shy away from those affected or ignore them, as if we lack the courage to accept them understand and take care of them.” (www.who.int/mental_health/media/en/790.pdf).
Attitudes towards people with dementia were recorded among general practitioners and specialists in Germany. Negative attitudes were often found among doctors who perceived themselves as not very competent in dealing with people with dementia (Kaduszkiewicz et al., 2008). A study in Belgium showed that only 68 % of doctors always communicate a diagnosis of dementia to the person affected, with younger doctors more often communicating diagnoses, emphasizing the right to information on the part of the person affected. Cultural aspects also became clear in this study, as the rate of diagnosis notifications by Flemish-speaking doctors is significantly higher than by French-speaking doctors (Tarek et al., 2009). The reluctance to openly carry out dementia diagnosis can also be found in Great Britain. It is estimated that half of all dementia diagnoses are not diagnosed there, even though the family doctors who provide care see clear signs. The reasons given are the stigmatization of people with dementia and the insufficient financial support for care and treatment (Iliffe et al., 2009).
Recognizing these deficits, Kaduszkiewicz and van den Bussche's group conducted training for general practitioners and nursing staff (Kaduszkiewicz et al., 2009). While a general positive change in attitude was observed among doctors and nursing staff after the training, there was no increase in doctors' willingness to openly discuss a dementia diagnosis with those affected (Kaduszkiewicz 2009). While many illnesses that lead to the need for care are often diagnosed during an inpatient hospital stay, inpatient admission for dementia diagnosis is usually unnecessary. At the same time, the time for discussions about health problems is decreasing in both inpatient and outpatient medical care settings. Although there were 3.8 million hospital admissions in 2007 for people over 75 years of age, dementia is rarely diagnosed or coded in this context, even though the reason for admission, e.g. a fall or a state of confusion, is often related to existing dementia (www.destatis.de /jetspeed/portal/cms/Sites/destatis/Internet/DE/Presse/pk/2008/Krankenhaeuser/begleitheft__krankenhaeuser,property=file.pdf). According to estimates by the Federal Statistical Office, in 2020 the proportion of patients over eighty years old among the total number of patients in a hospital will be over 19 % (Figure 2). This means that dementia diseases are likely to come to the fore as important comorbidities in the inpatient area.
In contrast to other chronic progressive diseases, the diagnosis of dementia is often followed by withdrawal from medical care. Due to the perceived problem of communicating the diagnosis in many countries, a special program was developed in Canada to provide care and information to relatives by nurses immediately after the diagnosis was made (Ducharme et al., 2009). It is unclear what professionalization or training is needed in this area of early psychosocial care or which funding providers could refinance it. Various providers have set up advice centers for people with dementia and their relatives and self-help groups are increasingly being set up with the help of the German Alzheimer Society (www.deutsche-alzheimer.de/index.php?id=42&plz=2). Various studies indicate that early professional psychosocial support can reduce the rate of nursing home admissions (Mittelman et al., 2006).
It remains to be seen whether the inclusion of dementia in the list of diagnoses relevant to morbidity risk adjustment will change the frequency of medical reports of this diagnosis. Just as a late inclusion of a dementia diagnosis in the list of diagnoses transmitted by health insurance companies, a strong tendency to use non-specific dementia diagnoses (F03, dementia syndrome not specified) can also be observed (www.rostockerzentrum.de/publikationen/rz_diskussionpapier_24.pdf).
This reluctance has to do with diagnostic uncertainties in the general medical field, especially in early dementia syndromes. Especially in the case of serious illnesses, a one-off diagnostic clarification should be carried out at a high guideline level, in which a high level of diagnostic certainty in the stage of mild dementia can usually be achieved without the use of expensive or stressful examination methods (positron emission tomography, cerebrospinal fluid examination). Diagnostic costs when using anamnesis, clinical examination, neuropsychological testing, limited laboratory values and computer tomography are in the range of around 500 euros, and when using magnetic resonance imaging they are 740 euros. Given the fundamental prognostic significance of a dementia diagnosis, which corresponds to the significance of a cancer diagnosis due to the predictably increasing limitations, the effort does not appear excessive. With around 200,000 new diagnoses per year in Germany and around 6,000 established psychiatric specialists,
trie/Neurologie/Nervenheilkunde (Statistics from the German Medical Association, www.baek.de/downloads/Stat08Table08.pdf) the regular involvement of a specialist also seems possible, although there are different access options in rural regions.
If the diagnosis is usually made in the first few years of the disease's progression, it will also take place at a time when those affected can seek out these examination options alone or accompanied by their relatives. Due to inadequate diagnostics, many immobile and severely demented nursing home residents are currently faced with the question of whether the burden of further diagnostics (ambulance transport and possibly sedation for a computer tomography of the head) makes sense. Since dementia develops over several years, with consistent early diagnosis, these unsatisfactory situations should no longer occur in the near future. In the United States, a reduction in the time from onset of dementia symptoms to diagnosis from 3 years to 1 year was observed; a trend that is also noticeable in Germany (Knopman et al., 2000).

Procedures and structures
for early detection are available
Numerous training courses have provided doctors with the latest knowledge about dementia and possible short tests. At the doctor level, a sensible division of labor can currently be observed, particularly in urban areas. General practitioners and family doctors often suspect dementia (F03) and use referral channels to neurologists in order to use the global diagnostic term dementia to narrow down the diagnosis to the main subtypes, Alzheimer's dementia (F00, approx. 60 %), Alzheimer's dementia with vascular components ( F00.2, approx. 15 %), vascular dementia (F01, approx. 15 %), frontotemporal and rare degenerative dementias (F02, approx. 10 %). This division of labor makes sense because larger neuropsychological and clinical examinations as well as imaging are required for the differential diagnosis of the cause of dementia. Innovative offers are, for example, developed by the AOK Baden-Württemberg in cooperation with the Freiburg University Hospital and made available to its insured persons. Facilities such as the Freiburg Memory Outpatient Clinic allow comprehensive diagnostics, treatment and care planning within one visit through combined access to psychiatric, neurological, neuropsychological, internal medicine and socio-medical knowledge (www.aok.de/bawue/rd/129025.htm).
In summary, it can be stated that there is already a standard procedure in clinical practice that can be implemented across the board to diagnose dementia with high sensitivity and specificity in the first year of memory loss.
The instruments for early diagnostics have grown significantly in recent years and have been well evaluated. So, for example, For example, the AgeCoDe study supported by the BMBF provides extensive standard values for Germany for the neuropsychological test battery most commonly used in dementia centers and specialist practices (Luck et al., 2009). By including a cerebrospinal fluid examination (cerebrospinal fluid puncture) or positron emission tomography (PET, examination of the metabolism with glucose or with a contrast agent for deposits typical of Alzheimer's), a reliable diagnosis is in principle possible even in the lead-up to the onset of dementia with few symptoms.

The therapy of dementia diseases
is currently still unsatisfactory
Previously approved anti-dementia drugs affect the neurotransmitters and have a moderate benefit, which is overtaken by the progression of the dementia after a few months (www.iqwig.de/download/A05-19A_Final Report_Cholinesterasehemmer_bei_Alzheimer_Demenz.pdf).
Limiting therapy to 6 months is a misunderstood but often practiced approach. Even if after 6 months the patient appears as impaired as when therapy began, this must still be seen as a success if the disease progresses. In Germany, around 23 % of sick people insured by statutory health insurance are currently receiving therapy with an approved anti-dementia drug (Insight Health 2008). An early diagnosis and a more open approach to communicating the diagnosis to those affected and their relatives will probably result in a higher demand for prescription anti-dementia medications. With around 1 million people with Alzheimer's dementia and daily therapy costs between 3 and 4 euros, expenditures of around 1.2 billion euros per year would be conceivable, a sixfold increase in the current expenditure on these medications. From November 2010, the first patents for approved anti-dementia drugs will expire, so that from this point onwards, reduced-price generics for anti-dementia drugs can be expected.
However, the effectiveness of the therapies in the borderline areas of mild cognitive impairment/incipient dementia as well as in the stage of severe dementia must be viewed with skepticism. Studies in cases of mild cognitive impairment have shown no evidence that the use of currently available anti-dementia drugs makes sense even in cases of mild memory impairment (Raschetti et al., 2007).
In contrast to diagnostic procedures, no new therapeutic principle has been developed to approval in the last ten years. Inhibitors of the aggregation (Alzhemed®) and the synthesis (Flurizan®) of the Aß peptide typical for Alzheimer's disease failed in large confirmatory studies with well over a thousand participants. Of the more than 70 studies conducted worldwide on Alzheimer's dementia, Dimebon, a chance development of a drug previously approved in Russia, as well as active and passive vaccination approaches against the Aß peptide are most likely to be approved in the next few years. However, the results of confirmatory studies are still pending.

Domestic care is changing due to the changes
Household structure at risk.
Furthermore, it is mainly spouses, daughters and daughters-in-law who are involved in the home care of dementia patients. While in 1996 only 21 % of the caring relatives were male, this proportion increased to 40 % in 2008 (Brodaty et al., 2009). Married men with dementia are still most likely to be cared for at home. The increase in single households due to widowhood and separation as well as the loss of children as caring relatives due to geographical separation or childlessness will limit the availability of possible caring relatives in the coming years. It remains to be seen whether alternative forms of living (non-relative multi-generational houses, shared apartments) provide appropriate informal social and care support in old age. The additions to the Nursing Care Insurance Act to include additional services for dementia patients living at home can only have a limited supportive effect. The effects and sustainability of civic engagement, e.g. B. in the spirit of the dementia-friendly community campaign supported by the Robert Bosch Foundation remains to be seen (http://www.aktion-demenz.de).
If care at home is initially possible for mild dementia, then as the dementia progresses, aggressive behavior and incontinence in particular are risk factors for admission to a nursing home (Luppa et al., 2008). More than half of all people newly admitted to a nursing home already suffer from significant dementia upon admission. While older people have access to specialist medical care as an alternative to primary care if their mobility is good, specialist care in nursing homes is often not available after loss of mobility. Psychotropic drugs are among the most common medications used in nursing homes, with prescriptions often being carried out by primary care physicians. The high rate of sedating psychotropic drugs in dementia patients (approx. 30% of all nursing home residents with dementia) has once again stimulated discussion of the professional supervision of the use of psychiatric drugs in dementia patients with the publication of the GEK drug report in 2009 (www.gek.de/x-medien/ files/magazine/GEK-Arzneimittel-Report-2009.pdf). An alternative to the use of sedating medication could also be an environment design and continuous supervision of a nursing home area for dementia patients by a psychiatrist, a psychiatric institute outpatient clinic or a geriatric center. A professionally appropriate treatment of people with dementia and its complications such as states of confusion or aggressive behavioral changes is urgently needed to avoid acute hospital admissions, as an acute change in environment usually provokes an increase in symptoms. Psychiatric departments are sometimes stretched beyond the limits of their capacity due to the inpatient admission of these patients, who can no longer be treated on an outpatient basis in acute acute cases. Improved specialist outpatient treatment as well as the establishment of combined geriatric psychiatric and somatic wards to care for dementia patients who become suspicious during inpatient stays appear to be urgently needed. Corresponding concepts are being discussed, for example, as part of the further development of the Baden-Württemberg state geriatrics concept. The task of the geriatric focuses and centers within the framework of this concept must be to avoid the need for acute transfers from the home area or somatic hospital area to geriatric psychiatric inpatient facilities through early recognition and treatment of a derailing dementia.
The care of dementia patients will be a challenge in the next few years, particularly on three levels: 1) the development of an effective therapy that slows down the progression of the disease, 2) the care to remain in the home environment and 3) the avoidance of symptom-provoking inpatient admissions a derailing dementia symptoms. <<