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Dementia and Person-Centred Care

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Dementia and Person Centred Care

Currently, there are about 45 million people in the world who live with dementia. Dementia is traditionally associated with the older age; therefore, this figure is going to increase exponentially in the nearest future as the population is gradually aging. This medical condition is connected with cognitive impairment and loss of cognitive functions that may be accompanied by physical impairments, yet it may be complicated to diagnose the disease and its particular form. In turn, this issue complicates the process of choosing the care necessary for different patients. On the whole, there are about sixty various conditions that fall under the notion of dementia or dementia-related disease; all of them have their symptoms and require specialized care. People suffering from this condition lose an ability to take care of themselves either partially or fully; consequently, associated increased anxiety, anger, and other negative feelings may result in disruptive and harmful behavior. Besides, dementia is deemed to be a highly individual condition; therefore, each patient needs a customized approach with an account for the medical history, environmental peculiarities, and other specific characteristics. Therefore, various models of dementia care, including palliative, supportive, and person-centered ones have been developed and adopted; each model has some shortcomings and strengths. Currently, based on the guidelines adopted by nursing associations and promoted by organizations focusing on the condition under consideration, it becomes obvious that the person-centered dementia care approach gains popularity. It is rapidly spreading across developed countries of the world. This trend is explained by the evident benefits of the approach that emphasizes the significance of a patient rather than focus entirely on the disease. Thus, the person-centered approach seems to be the most promising model of dementia care as it has proved to be effective and efficient in terms of increasing patients’ quality of life and enhancing their well-being. The current paper aims at providing an overview of dementia as a particular medical condition, as well as discussing in brief the models of dementia care. In particular, it focuses on person-centered care as the most significant and promising care strategy in the prevention of behaviors and aggression. With an account for this objective, the current paper is structured as follows: Introduction, Definition, and Types of Dementia, Models of Dementia Care, Person-Centred Dementia Care in the Prevention of Behaviours and Aggression, Significance of Person-Centred Dementia Care, Conclusion, and Reference List.

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Definition, Symptoms, and Types of Dementia

The notion of dementia covers a broad range of conditions that are connected with an irreversible loss of memory and some cognitive capacities. This impairment results in a decrease relating to the individual’s ability to function emotionally, socially, and physically on the same level as before. Cognitive impairments associated with dementia may affect orientation, memory, language, calculation, comprehension, thinking, judgment, and learning capacity. As a rule, they are accompanied by progressive neurological deterioration. In addition to the aforementioned cognitive symptoms of the disease under consideration, there are some non-cognitive symptoms, including delusion, anxiety, hallucination, euphoria, depression, wandering, eating disorders, apathy, irritability, sleep disorders, disinhibition, and sexual disorders.

Dementia is not a mental illness as some may suppose, but a condition predetermined by physical changes in the brain and neurological deterioration; this fact allows terming it a disease. Common symptoms include a comparatively worsened functioning of an individual as compared to the age peers in terms of cognitive functions, including memory and at least one other domain, as well as a decreased ability to carry out all activities pertaining to daily living and obvious changes in the personality and behavior. Early diagnostics is of utmost importance for managing dementia and ensuring that patients receive proper care and treatment that may be pharmacological, non-pharmacological or the mixture of both. Non-pharmacological interventions may include cognitive training, simulated presence, validation therapy, exercising, multisensory stimulation, and combined therapies. However, patients’ peculiarities have to be considered as these interventions are not suitable for all.

More than 60 conditions falling under the umbrella of the dementia notion are distinguished. According to the part of the brain affected and cognitive functions impaired, they may be roughly subdivided into the following categories: temporoparietal, frontal, and subcortical. Hence, common dementia diseases include Alzheimer’s disease and vascular dementia. Alzheimer’s disease is the most widespread type of dementia accounting for more than 50% of all registered cases. It affects all areas of the brain, resulting in the progressive loss of cognitive functions with memory loss is the primary symptom. There exists another classification of dementia conditions based on the causes of the disease. According to it, there are neurodegenerative diseases that unravel as a progressive loss of synapses and nerve cells, for example, dementia in Parkinson’s disease, primary progressive aphasia, semantic dementia, frontotemporal parkinsonism linked to chromosome 17, Pick’s disease, Lewy body dementia, dementia lacking distinctive histology, corticobasal degeneration, argyrophilic grain disease, Huntington’s disease, and some other rare forms. Dementia can also be caused by infectious diseases such as Human Prion diseases, sporadic Creutzfeldt Jacob disease, fatal familial Insomnia, Gerstmann-Straussler-Scheinker disease, and some other rare conditions. Dementia can result from some metabolic diseases that are treatable as compared to neurological impairments; such diseases include Thyroid disorders, neurodegeneration with brain iron accumulation type I, Tay-Sachs disease, Sandhoff disease, and Gaucher disease. Another group of diseases resulting in dementia include traumatic diseases, for example, repeated head trauma. Finally, toxic diseases and cerebrovascular dementia represent other conditions classified under the umbrella of the general notion. In any case, dementia is an individual disease as each patient tends to display various symptoms that have to be accounted for. Unlike in the case of many other illnesses, if a medical practitioner saw one case of dementia, it means that he/she dealt with only one case rather than learned the disease in general.

Dementia cannot be cured and is termed as a constantly progressive disease, but there is a supposition that it can be prevented in some cases. Thus, there are some risk factors that increase the chances of dementia in the senior age, for instance, age, alcohol use, atherosclerosis, diabetes, genetics, hypertension, and smoking. Moreover, it should be noted that currently, there is a tendency to consider dementia a terminal condition, ‘one which inevitably will lead to death.’ Though many people die not from, with dementia, this condition cannot be cured; in many cases, it does result in the death of patients. Based on different interpretations and views regarding dementia, its causes and symptoms, several models of care have been developed. They are discussed in more detail in the following section of the paper.

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Models of Dementia Care

When one looks at the dementia-related statistics for Australia and the world, in general, it becomes obvious that the number of people having dementia increases with every passing year due to the overall aging of the population. In such a manner, in 2012, in Australia, there were 57,200 people with dementia aged 65-74 and 14,200 aged above 95; the total number was 311,300 patients. These figures are projected to increase to 108,700 and 98,300 respectively in 2050, which would amount to 891,400 in total. It would mean a 186% increase as compared to 2012. Worldwide, this figure will increase even greater due to the aging of the population in developed countries. Therefore, it becomes of utmost significance to design and implement the best dementia care models that would ensure the high-quality life of elderly patients with this condition. In this respect, another approach to the issue should be mentioned. It concerns the idea that ‘having dementia is so bad that it would be preferable to be dead’ taking into account that dementia is anyway regarded as a terminal condition (Nuffield Council on Bioethics 2009, p. 26). However, this view is not extremely popular and widespread as the disease under consideration does not automatically mean that the quality of life has to be negative and depressing for patients.

The above approach is rejected by the other existing dementia care approaches, the most prevalent of which include institutional, supportive, palliative, and person-centered models. The latter model is discussed in detail in the following section while the present section provides a brief overview of the other three models. Institutional care implies that a person with dementia is institutionalized in a specialized facility, for example, a care home or hospice where nurses and doctors can provide a wide range of pharmacological and non-pharmacological services. Although people are usually fed well there, as well as being ‘medicated, kept safe and put in front of the TV’, they ‘wither away’ under this model as their personality is ignored while their disease is the sole focus of specialists. Therefore, this model is the least suitable for care about the patients with the analyzed condition.

Palliative care model functions on the premise that dementia is a terminal condition and that ‘people with dementia have the right to die peacefully, with dignity and in a way that respects their wishes’. Nevertheless, in Australia, only 5% of people who receive palliative care are diagnosed with dementia. It is so since this approach to care is not well-suited to dementia, being originally developed for cancer patients; consequently, the patients with dementia are seen as ‘not dying fast enough’. In turn, supportive care model focuses on living; it is defined as ‘a full mixture of biomedical dementia care, with good quality, person-centered, psychosocial, and spiritual care under the umbrella of holistic palliative care throughout the course of the person’s experience of dementia, from diagnosis until death, and for families and close carers, beyond’. It is an extremely broad model that may be quite complicated for the implementation at every care facility due to a variety of aspects it envisions. Besides, this model is not well-suited for dementia as it may be not possible to determine for sure what support may be needed at the peculiar time; of course, the potentially preferable elements of care can be listed. Due to its complexity, this model may not be feasible for immediate implementation, but dementia care has to be improved as soon as possible; therefore, the person-centered care model is the best choice.

Person-centered Dementia Care in the Prevention of Behaviours and Aggression

The most effective and reasonable dementia care in terms of prevention of behaviors and aggression is the person-centered model. It acknowledges an obvious fact that a person with dementia remains a human being that deserves respect and treatment with dignity, as well as the right to participate in making decisions about their own care. This approach is based on the ‘philosophy of personhood’ developed by Professor Tom Kitwood who also defined and developed such concepts as ‘positive person work’ and ‘malignant social psychology’. The key postulates of his theory are as follows: a person is a social being and needs relationships with other people; personhood is manifested through a particular context; the person needs respect, trust, and recognition for proper maintenance of one’s self.

This model is based on the framework of reference as ‘PERSON-with-dementia rather than person-with-DEMENTIA’. Person-centered care is based on several positive person work practices, including celebration, collaboration, creation, facilitation, giving, holding, negotiation, play, recognition, relaxation, stimulation, and validation. In turn, all manifestations of malignant social psychology have to be avoided as they depersonalize and dehumanize patients with dementia, as well as cause distress and provoke various negative behaviors. These manifestations may be an accusation, disruption, ignoring, infantilization, intimidation, objectification, stigmatization, and others defined by Kitwood as such that negatively impact the well-being and quality of life of people suffering from the condition. Moreover, person-centered care presupposes the co-working of patients and carers in terms of care decision-making. The approach is sometimes regarded as a way of facing ‘the full tragedy of the illness’ and finding ‘hope and sustenance in the quality of the interaction and connection’. Under the approach, patients retain some independence and dignity while the role of medications administered to them is decreased.

Person-centered homes focus on providing all the patients with ‘an individualized plan of care and social and physical environments that support the resident’s abilities, strengths and personal interests’ rather than some ‘generic programs and cookie-cutter activities’. In fact, it has been revealed that the creation of a proper environment is essential for the well-being of people with dementia and the satisfaction of carers with their jobs. The environment has to remind patients of their home, be cozy and convenient, provide access to outdoors, have nature indoors, ensure spiritual engagement, be suitable for social engagement, foster dignity, offer opportunities to meet with family, and ‘enable visual monitoring by staff – via human contact and not through the person being placed in a public area’. Nonetheless, not all care homes comply with these principles of person-centered care, partially because of the lack of person-centered care culture among nurses and carers who still follow the traditional approach. However, some care facilities in Australia pursue the principles of person-centered care in everything they do. For example, UnitingCare Ageing Starrett Lodge may be deemed an exemplary nursing home for patients with dementia. Though there exist some worries that the relative freedom and independence of patients at person-centered care homes may result in a higher rate of injuries due to falls, various empirical researches have proved that the benefits of this approach far outweigh the shortcomings.

In turn, this approach has shown a positive influence on the personnel with increased job satisfaction and lower turnover rate. However, the most significant benefit concerns the improvements in the psychological state of patients who report less boredom and helplessness and display reduced agitation. This issue is important as patients with dementia often get agitated, anxious, and aggressive due to a variety of reasons such as inability to communicate their wishes, express pain, feeling of confusion about surroundings, anger at the loss of memory, and other disruptive behaviors. Under the person-centered approach, nurses do not ignore any displays of emotions but try to come into the world of the person and understand the underlying reasons for the behavior as it is demonstrated in Come into My World videos. This way, behaviors, and aggression are managed in an effective and emphatic way rather than being ignored or merely repressed by medications or restraints.

Significance of Person-Centred Dementia Care

Having studied multiple sources on dementia and analyzed the existing dementia care models, I have personally come to the conclusion that today, person-centered dementia care is the most notable and effective approach to this condition. The matter is that it places a person in the center of all activities and allows both patients and carers to remain humans that care about each other’s dignity. The videos from the series of Come into My World reveal the difference between the traditional institutionalized approach and the person-centered model. For instance, the behavior of the night nurse in Come Feel with Me is shockingly appalling irrespective of the aggressive behavior displayed by a woman with dementia. The nurse should have tried to understand the reason for the patient’s anxious behavior instead of merely restraining her. However, the sad reality is that it is a common practice in many nursing homes where patients are objectified and are not treated as people at all. It is obvious that the person-centered approach is quite demanding for nurses and carers as it is not easy emotionally and physically to meet all the patients’ needs in a caring, patient, and compassionate way, especially if there is an obvious shortage of the personnel. However, these strains should not discourage nurses from trying to do their best in order to comply with all the principles of the person-centered approach as, in that case, communication with patients will be extremely rewarding and will be worth all the efforts and time spent on getting them to know better. The nursing profession is about caring for people in the best possible way; nowadays, this aim can be achieved through compliance with person-centered dementia care. Furthermore, this model has proved to be effective in the prevention of disruptive behaviors and aggression among the patients who feel respected and empowered and have fewer reasons to try to express their needs in such a manner.

Conclusion

Withal, dementia is an extremely individual condition that can manifest through various symptoms, but it is always associated with progressive cognitive deterioration and is considered a terminal condition. However, it does not mean that people with dementia cannot enjoy a high quality of life and feel satisfied and happy despite their condition. The most effective and efficient way of ensuring this quality of life is through the application of person-centered care at all care homes both in Australia and in the world. Of course, there are other care models that show good results in terms of people’s wellbeing, but they still have the person-centered approach at their core. Therefore, the principles of such care have to be promoted among and implemented by nurses and medical practitioners with a view to providing people with dementia with the quality care, respect, and empowerment they deserve and need.

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