Dementia Diagnosis from the Perspective of a Nurse

Dementia Diagnosis from the Perspective of a Nurse Dementia is today referred to as the pandemic of the 21st century. Since there is no relevant research in our country that would provide more precise data, these figures are estimated from international prevalence studies. Dementia prevalence in the Czech Republic was estimated at 1.39% in 2013 and 1.45% in 2014. In 2014, this diagnosis therefore affected more than 152 thousand residents; estimates for 2020 are around 183 thousand and even 383 thousand cases for 2050 (Mátlová, Mátl, 2015, pp. 10-13).

Dementia is not a normal sign of aging, as many people still believe, but an organic brain disorder characterized, among other things, by impaired cognitive functions. It is accompanied by changes and behavioral disturbances, psychiatric symptomatology, impairment of independence, and serious social and psychological consequences for patients and their families (Holmerová, Jarolímová, 2007, pp. 15). The most common cause of dementia is Alzheimer’s disease (up to 60%), followed by vascular dementia, mixed dementia, Parkinson’s disease, other degenerative brain diseases, and other rare causes (Mátlová, Mátl, 2015, pp. 6).

A mild form of cognitive deficit is called mild cognitive impairment (MCI). In this condition, there is a demonstrable cognitive deficit, but it does not meet the criteria for dementia, which are memory impairment and the presence of at least one additional cognitive impairment (aphasia, apraxia, agnosia, executive dysfunction). The deficit should also affect the patient’s daily life (Hort, Vyhnálek, Bojar, 2005, pp. 324). Usually, but not always, dementia develops from MCI over time, so it can be considered a precursor.

Dementia proceeds in three stages with typical manifestations: 1. Early and mild dementia (dominance especially of memory, concentration, behavioral, and social function impairments; it is necessary to advise the patient in different activities, and supervision may not be continuous). 2. Moderately advanced dementia (manifestations of reduced independence, patient requires frequent or predominant supervision). 3. Advanced dementia (the patient depends on continuous care and help in most self-care activities) (Vaňková, Jarolímová, 2007, pp. 34).

Diagnostic methods include clinical picture, psychiatric, neuropsychiatric and psychological examination, and a range of screening assessment scales and tests. Imaging and laboratory methods are also used, including measurement of special biomarkers.

Why Early Diagnosis Matters

For treatment to be successful, it is very important that the disease is diagnosed on time. However, most patients are diagnosed late or not at all. From the first symptoms to the first specialist visit, many months can pass, and as Holmerová and Jarolímová note, dementia develops over many months to years, and its manifestations are evidence that the brain’s pathological process is no longer able to compensate and the condition further deteriorates—the patient becomes dependent on the surroundings, becomes disoriented, and after a few years dies from complications of associated illnesses (skin infections from pressure ulcers or incontinence of urine and stool, pneumonia from hypomobility or immobility, cachexia from malnutrition, anorexia, falls, delirium, etc.). Thus, early diagnosis means longer life; it enables timely initiation of appropriate treatment that can slow the course of dementia, help maintain the patient’s physical fitness and independence longer, and delay institutionalization.

According to Vyhnálek et al. (2011, pp. 352), pressure for early diagnosis is increasing. Ideally, this should happen before dementia develops or in the stage of mild cognitive impairment, when the patient does not yet have self-care deficits. Their research found that in 2009–2010, specialists first examined patients in the early stage in 45%, in the moderately advanced stage in 41%, and in the late stage in 11% for the first time. The number of patients observed for mild cognitive impairment is even smaller. In other words, more than 50% of patients come to a specialist only with fully developed dementia. The earlier the diagnosis, the more effective the treatment and the longer a good quality of life can be maintained.

There are several causes of late diagnosis. For example, for a typical neurologist or psychiatrist, cognitive disorders may remain a peripheral interest due to the low number of such patients in regular practice (Vyhnálek et al., 2011, pp. 356). A major problem is disinterest or even ignoring possible dementia at the primary care level, i.e., in general practitioners’ offices, where symptoms are often minimized. Patient: “I’m forgetting things.” Doctor: “Me too, so what…” Alternatively, the doctor may assume the patient cannot be helped anyway.

Late diagnosis is also influenced by the patient. As Holmerová and Jarolímová (2007, pp. 30) note, the patient may mask symptoms, deny them, and not want to admit that thinking problems are affecting them. We are very sensitive to psychological illness. If the person decides to visit a specialist, they often mobilize all their strength to “pass” the examination, and not rarely they succeed (to the surprise of family members). Stigma and self-stigma in people with cognitive impairment also play a role—a person does not want to be considered “crazy,” labeled, does not want to be embarrassed, and fears rejection and others’ reactions. Likewise, families often help conceal and hide the relative’s problems, or pretend everything is fine, the opposite of what they should do—name the problem, address it, and be support (Holmerová, Jarolímová, 2007, pp. 30). The reasons are similar to those of the patients themselves; we can add ageism, stereotypes, prejudice, and fear of reduced social status.

The importance of timely diagnosis is also emphasized on its website by Alzheimer Europe (2016). In this way, the patient can understand the changes accompanying dementia, learn more information, and cooperate with the physician in treatment; personal autonomy is therefore preserved for longer. The patient has time to adjust to the illness, prepare mentally and spiritually for the future, and organize their life affairs. They can live through this stage of life and realize what they have always wanted—a trip to an exotic country, an adrenaline experience, a reunion with old friends…

Alzheimer Action Plan

Improving the situation of people with dementia in society should be supported by the expected national strategy that was published in February 2016 titled “National Action Plan for Alzheimer’s Disease and Other Similar Diseases for 2016–2019” (Ministry of Health, 2016). Among the plan’s tasks are, among others: 1. Ensuring timely and accurate diagnosis of dementia syndrome, that is, emphasis on routine screening of older adults within primary care. 2. Ensuring education of informal caregivers and increasing public awareness of the disease (de-stigmatization, removing prejudice, public education). 3. Fostering respect for older adults (anti-ageism). 4. Supporting and developing education for professional caregivers (knowing the diagnosis, understanding patient needs, being able to care correctly, and improving attitudes). At present, several practical accredited educational programs and seminars are being implemented (for example, by the Czech Alzheimer Society), but they are mainly intended for social service workers. Such educational forms are completely absent for healthcare professionals. As the number of patients with dementia in hospital care continues to grow, these programs are all the more needed. This is not only theoretical education and learning facts from textbooks, but learning practical communication skills with clients and their families, responding appropriately in psychologically tense situations during nursing care, and learning to apply person-centered care in practice. 5. Coordinated effort in research and use of available results. In research, the document defines two core support streams: basic biomedical research (supported by the Czech Science Foundation) and applied biomedical research (supported by the Ministry of Health). The task of the plan is to coordinate them and continue supporting both types of research focused on neurodegenerative disorders and to intensify international cooperation. It is therefore a highly needed and useful document. By implementing its goals in practice, the Czech Republic would be placed alongside other advanced European countries. The list of countries that have developed and approved a national strategic plan is published and regularly updated on the Alzheimer Europe website (www.alzheimer-europe.org), where full texts of the documents can also be found.

Role of the Nurse

General nurses can and should also participate in improving care for patients with cognitive disorders. Over the past decades, the role and tasks of nurses have changed significantly. Currently, according to Bártlová (2005, p. 136), the nurse performs roles in the following areas: nursing and caring, expressive, educational, instrumental (technical), counseling (family, public), health promotion and education (prevention), organization and administration, etc. However, it seems that in recent years these activities have narrowed (especially due to staff shortages, managerial demands, and medical technicalization) to nursing procedures, operation of medical equipment, and administration. The expressive role—creating a friendly, pleasant environment and positive social interactions with the patient—is fortunately a matter of course for the vast majority of nurses…

Consultative, preventive, and educational activities seem to have been forgotten. Yet in the field of dementia, the nurse can play an indispensable role. On the basis of their knowledge, they should be able to provide effective advice to patients and family caregivers (not only) about nursing care and to overcome barriers in the form of prejudice, stereotypes, and fear of the unknown. Through their attitudes, speech, and actions, both in private and public life, they should work to remove ageism. They can improve awareness and knowledge about dementia among the general public—in their environment, their family, and at their workplace. It is clear that not every nurse understands cognitive disorders deeply enough or is interested enough to speak about them in an informed way. If they do have such knowledge and skills, they should share them—talk about dementia, remove fear of the unknown, encourage seniors to attend cognitive clinics, intervene with relatives, and so on. In other words, they should de-stigmatize dementia. In prevention, nurses should actively notice initial signs of the disease—mood changes, depressive symptoms, repetition of statements, suggestibility, forgetting names, etc.—and thereby effectively contribute to early diagnosis.

Finally, nurses can significantly improve the situation through their research and scientific activity. This naturally requires sufficient knowledge and appropriate university and specialist education focused on nursing care in geriatrics. In the Czech Republic, the discussed and proposed qualification system for general nurses, based on secondary school study and a one-year add-on (“4+1”), would certainly not lead to the needed level of expertise. Equally important is support from hospital management, which must recognize the value of quality nursing education and make study easier, for example through flexible working hours or study leave, as well as provide appreciation both financially and through respect and recognition.

At the request of the first author of this article, a pilot study “Screening for Hidden Cognitive Deficit” was initiated at the Internal Clinic of the Faculty Hospital Ostrava, whose goals are: 1. To determine the extent and prevalence of hidden cognitive deficit; 2. To assess participants’ willingness to undergo further testing and analyze various demographic data and relationships among them. The research tool is the Montreal Cognitive Test. Included in the study are patients aged 65 and older hospitalized in the Internal Clinic of the Faculty Hospital Ostrava who provide informed consent for participation. Exclusion criteria are patient refusal, obvious cognitive impairment—dementia, and changes in physical or mental condition. The principal investigator is the first author of this contribution, that is, a general nurse, which clearly signals that nurses can actively participate in diagnosing cognitive deficits and provide new knowledge in patients’ benefit. The study is planned for twelve months, and we are also considering collaboration with other hospitals. After data analysis, we are prepared to publish our findings in an impact-factor scientific journal.

Conclusion

The path to a dementia diagnosis is complex and not easy. The diagnostic process faces major barriers: from patients, fear of diagnosis, social exclusion, and self-stigmatization; from families, shame and denial of the problem. Society’s ignorance and prejudice toward dementia, its tabooization, and the tendency to “look away” also have a harmful influence. Neglected primary care worsens the situation further and contributes to dementia being detected very late and inefficiently.

The primary emphasis should be on detecting cognitive deficits in the initial stage or, ideally, before they become manifest. There is a need to introduce and use screening assessments routinely and broadly by general practitioners (the challenge is to ensure their use in hospital practice as well) so that timely specialist evaluation is ensured, which (if diagnosis is confirmed and effective treatment is started) can prolong patient independence, improve the quality of life, and delay the need for institutional care and reliance on family support. To increase seniors’ willingness to undergo cognitive function testing, the chain beginning with stereotypes, followed by prejudice, stigma, discrimination, and ending in social exclusion needs to be broken. Dementia therefore needs to be de-stigmatized. It must be talked about, and the public must understand that denial only worsens the problems and the only proper solution is to act. Health education and awareness are the responsibility of all professional caregivers, not only physicians. The nurse, who is often closest to patients, can contribute to early diagnosis by actively participating in de-stigmatization and understanding of dementia in society. Through active engagement and attentiveness, they can detect early dementia symptoms themselves and inform a physician and, if needed, relatives. For this, one must understand dementia and know how to communicate with both seniors and their families. The national “Alzheimer Action Plan,” approved in February 2016, further highlights the focus on primary care, improved and expanded professional education in dementia, and increased public awareness of dementia. For now it remains a plan; the quality of its implementation in practice and its outcomes can only be evaluated with time, as can its contribution to early dementia diagnosis.

Dementia will occupy experts from many areas of society for many years to come—politicians, physicians, demographers, sociologists, psychologists, caregivers, and others. It will bring enormous economic and social demands and increasing pressure for both quantitative and qualitative development of health and social care. It will be better if nurses also join this struggle: through their work, public education activities, approach to patients, and research as well.

Authors: Mgr. Marcel Koňařík prof. MUDr. Hana Matějovská Kubešová, CSc. Ostravská univerzita v Ostravě, Lékařská fakulta, Ústav ošetřovatelství a porodní asistence List of Bibliographic References

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