Understanding Dementia: A Growing Concern

CHAPTER 01: INTRODUCTION

Dementia is a chronic and progressive syndrome which results in the deterioration of cognitive function. The cognitive functions affected include; memory, thought process, comprehension, ability to perform arithmetic, language, capacity to learn and judgement or ability to make decisions (Manthorpe et.al,2009). This cognitive impairment is sometimes accompanied with loss of emotional control, a deterioration of social behavior and loss of motivation but interestingly consciousness is maintained in dementia patients (Adams, 2008). The effects of dementia on cognitive abilities and social behavior are normally severe enough to affect the day to day functionality of an individual. The main group in the population affected by dementia is old people although the younger population can also be affected. Persons below 65 years of age account for about 9% of dementia case (WHO, 2018). It is however not part of the normal aging process. According to the World Health organization there are currently 50 million people suffering from dementia in the world. There are also over 10 million new cases of this syndrome every year and an estimated 82 million persons living with dementia by 2030 and 152 million by 2050. The estimated high rise is due to an increase in the number of people suffering from dementia in low and middle income countries (WHO,2018)In the UK an estimated 700000 people are currently living with dementia this number is expected to escalate to 1.71 million by 2051. This syndrome is a major cause of disability among the aged worldwide leading to an increased dependency among this group of the population. It is not only a toll on the persons affected but also to the persons involved in the care of these persons and their families. It poses physical, psychological, social and economic impacts on the families and caregivers of the patients. The cost of dementia to the society is at an estimated 818 million US dollars, and this accounts for about 1% of the world’s total gross domestic product. An estimated £17 billion is currently used in the UK annually to care for late onset dementia. Due lack of understanding and awareness on dementia, there is a lot of stigmatization and many barriers encountered during its diagnosis and care. It is therefore fundamental that an awareness of the syndrome, its signs and symptoms, types, treatment and care, risk factors, causes and prevention (Camicioli, 2013).

Causes of dementia

This syndrome is caused by a loss of nerve cell and nerve connections in the brain.

1.1 TYPES OF DEMENTIA

1.11 Alzheimer’s disease

This contributes 60-70% of the cases of dementia disease. It is thus the most common form of dementia. Alzheimer’s disease commonly abbreviated as AD is the most prevalent type of dementia. It is a progressive disorder causing degeneration and death brain cells. It was first described in 1907 (Albert et.al 2011). This was done by German physician and psychiatrist Alois Alzheimer who observed a patient who had developed an earlier than usual case of dementia. Following the death of the patient he then went ahead and carried out pathological studies on her brain. This disease is now the 6th leading cause of death in the USA and is slowly becoming a global concern as more and more new cases are reported. It is estimated that by 2020 the prevalence of the disease will have increased to 41.25 million (This figure includes both the early stages and late stages) (McKhann et.al, 2011). There is however no known cure for this disease despite the availability of several drugs which seem to be able to slow down the progression. It is characterized by the presence of neurofibrillary tau tangles and plaques of beta amyloid protein in the brain. These plagues are thought to damage neurons and the fibers connecting them. The Apoliprotein E4 gene has been identified as a possible candidate in increasing the risk of Alzheimer’s disease. Since genetic factors are involved there is a possible passage of this disease from parents to their children (Camicioli, 2013) People in the late stages of this disease require highly specialized care almost equivalent to those in a nursing home. This kind of care is very expensive (McKhann et.al, 2011). It is in this respect that we need to spend time to review the disease looking at its causes, symptoms, pathology, and ways of diagnosis, therapeutic treatment and drug targeting for this disease (Albert et.al 2011).

The progression and symptoms of Alzheimer’s disease

This disease which mainly manifests itself in severe forms in old age has its onset several years earlier. It progresses from mild cognitive impairment which takes a duration of about seven years, during which the disease is in the medial temporal lobe. It then moves to mild Alzheimer’s which takes a duration of 2 years. During this time the Panetal and Lateral temporal lobes are affected. It then moves to moderate Alzheimer’s where the disease now affects the frontal lobe. This also takes two years. The last stage is severe Alzheimer’s. This is stage when the disease spreads to the occipital lobe. (Bateman et.al, 2017) As the disease progresses over the years the following symptoms are associated with it. Its key symptom is a persistent and constantly worsening memory loss. This may involve frequent misplacement of items, inability to remember recent events, inability to acquire and retain new information, gradual loss of ability to perform routine tasks such as paying rent eating and bathing. The patient loses body coordination thus loosing balance. They are unable to recognize familiar people and objects such as forgetting names and appearances of family members and searching out for things that are directly in front of them (Musiek et.al 2015). The disease is also characterized by personality and behavioral changes which include mood swings, being irritable and aggressive, social withdrawal, wandering, failure to trust others, delusions and depression. These symptoms render a person unable to function at home and in the work place as they are unable to think, reason, multitask, remember important things or make decisions. There are five known pathological hallmarks of Alzheimer’s disease. These are extracellular Peptide Amyloid Beta (Aβ) deposits sometimes referred to as Amyloid plague, acetylcholine deficiency, and intracellular aggregates of filamentous tau protein known as neurofibrillary tangles, neuroinflammation, and glutamate excitotoxicity.

Vascular dementia

This is a type of dementia resulting when blood vessels in the brain are destroyed. Such damage in blood vessels can result into strokes or damage to the fibers present in the white matter of the brain. Persons suffering from this form of dementia have difficulties in solving problems, focusing, and organization and generally tend to think more slowly than they used to. Its prevalence is second only to that of Alzheimer’s disease (Ebert, 2019).

Lewy body dementia

This is a progressive type of dementia which involves the formation of balloon like clumps which are abnormal the brain. These clumps are protenous in nature. The clumps that characterize Lewis bodies are also found to occur in persons with other types of dementia like Alzheimer’s and Parkinson’s disease. Its signs and symptoms hallucinations sleep walking and sleep talking, inability to coordinate body parts to control motion, experiencing tremors and lack of focus or inability to pay attention (Fortinsky, 2008).

Frontotemporal dementia

Frontotemporal dementia is a type of dementia where there is a breakdown of the nerve cells and the corresponding connections affecting mainly the frontal and temporal lobes of a person’s brain thus affecting the personality of an individual. It causes a change in the behavior and even language of the individual. Other cognitive functions also affected are the ability to think, to make decisions and to coordinate motion (Camicioli, 2013).

Alcohol related dementia

Chronic alcoholism has been linked to dementia. A prominent loss of white matter affecting the prefrontal cortex, cerebellum and corpus callosum has been reported in studies involving neuroimaging and neuropathology. The frontal lobes of alcoholics show high susceptibility to injury. They and also characterized by reduced density and volume of neurons and a corresponding shrinking of the neurons. A hypothesis which postulates that the cause of alcohol related dementia is due to the toxicity of neurons suggests that glutamate excitotoxicity, disruption of neurogenesis and stress resulting from oxidation which are the direct effects of chronic exposure to alcohol use causes loss of neurons. Chronic alcoholics are particularly high risks of developing thiamine deficiency since alcohol has a direct compromise on thiamine metabolism. This deficiency exposes an individual to Wernicke's encephalopathy (WE). This is neurological disorder whose characteristics are clinical trial, dysfunction of the cerebrum, modified mental state and hemorrhagic lesions (Manthorpe et.al,).

Mixed dementia

Research has indicated that most types of dementia do not occur in isolation. In most cases they occur as a combination of several of them. These findings have also been confirmed by autopsy studies. Further research is still underway to determine the signs and symptoms of the mixed forms of dementia (Adams, 2008).

Parkinson's disease

There is a type of Parkinson’s disease known as Parkinson’s disease dementia and many people with Parkinson's disease eventually develop dementia symptoms (Parkinson's disease dementia) (McKhann et.al, 2011).

1.2 Treatment and care

Parkinson's disease dementia has no cure neither has there been found any preventive measure. Currently, various methods are under investigation through various clinical tests. Nevertheless, the victims of dementia and their families can receive support and care from the society just to improve their lives. The following are primary goals for dementia care: Early diagnosis in order to promote early and optimal management, Optimizing physical health, cognition, activity, and well-being, Identifying and treating accompanying physical illness, Detecting and treating challenging behavioral and psychological symptoms, providing information and long-term support to careers (Adams, 2008).

Some of the Dementia-like conditions and symptoms can be reversed and these include:

Infections and immune disorders; symptoms of this disease can come out of fever or other side effects from one's body in an attempt to fight off an infection. It can be caused also by sclerosis and other conditions caused by the body's immune system in attacking the nerve cells. The Endocrine abnormalities and metabolic complications are; the victims of thyroid disorders, low blood sugar (hypoglycemia), too little or too much of sodium. Calcium or issues of absorbing vitamin B-12 can cause dementia-like signs and symptoms and thus leading to change in personalities (Brooker, 2003).

Nutritional shortcomings; lack of enough liquids (dehydration), insufficient of thiamin (vitamin B-1), this is common among people with chronic alcoholism, and lack of enough vitamins B-6, and B-12 in your diet can cause dementia-like symptoms. Copper and vitamin E deficiencies also can cause dementia symptoms.

Side effects of medications; when one takes medications, its reactions with the body and various interactions with different medications may lead to dementia-like symptoms. Hematomas subdural; when there is bleeding between the surfaces and covering of the brain, something very common in elderly people when they fall, it can lead to symptoms like of dementia (Camicioli, 2013).

Poisoning; dementia-like symptoms can also arise due to much exposure and inhalation of heavy metals such as lead, and pesticides. Recreational drug and heavy alcohol usage are some of the causes, and this can be solved with treatment.

Brain tumors; dementia can rarely be as a result of damaged caused by a tumor in the brain. Anoxia; also known as hypoxia, is a condition that occurs when tissue organs lack enough oxygen. The condition can occur due to a severe sleep apneas, heart attack, asthma or carbon monoxide poisoning.

Normal- pressure hydrocephalous; this is a condition that is caused by enlarged ventricles inside the brain, it can results in difficulties in walking, urinary problems and loss of memory (Kitwood & Bredin, 1992).

1.3 Risks factors of dementia

Some of the risk factors of dementia include age which cannot be altered, together with others can be can't be controlled such as;

Age; while aging catches up with one, it comes with lots of risk factors of dementia, however, it can also affect young people and not only an issue of aging only (Kitwood & Bredin, 1992).

Family background; if one comes from a family that has a history of infections of dementia; it can be a risk factor that is uncontrollable. Many with such histories from their families are exposed to high risks of developing dementia. There exist tests that anyone can undergo to check whether one contains genetic mutations that can pose such risks (Manthorpe et.al,).

Down syndrome; during middle age periods, a number of people living with Down syndrome develop the early onset of Alzheimer’s disease.

Some of the risk factors of dementia that can be altered include;

Diet and exercise; a recent research have shown that people who don't go for exercises, increase their risk of developing dementia. There has not been found any special diet that reduces risks of developing dementia. It has been indicated by research that greater incidences of people who develop dementia are those who involve themselves in unhealthy ways of eating. Incomparable to Mediterranean lifestyle, those who eat a diet that is rich in produce, whole grains, nuts, and seeds have a low risk in developing dementia (Fossey et.al, 2006).

Cardiovascular risk factors; this results from high blood pressure (hypertension), high cholesterol, building of fats in one's artery walls(atherosclerosis) and obesity. Individuals with all these problems are posed to greater risks of developing with dementia (Adams, 2008).

Heavy alcohol consumption rate; high alcohol consumption poses higher risks of developing dementia. Studies have revealed that moderate intake of alcohol might provide a protective to this but the outcome is still not dependable. The relation between moderate intake of alcohol and the risks of developing dementia isn't well understood yet.

Depression is also uncontrollable risks factor of dementia; though this isn't well understood, depressions at late life periods come with greater risks of dementia development.

Diabetes; people living with diabetes are exposed to greater risks of dementia, especially if the controlled measures of the same is poor (Brooker, 2003).

Smoking; high rates of smoking have high risks factors of developing dementia, and diseases that occur in the blood vessels or vascular diseases are at the front stage in causing dementia.

Sleep apnea; people with snoring problems, and those with episodes of frequently breathing problems while asleep, have reversible memory loss and are in the high risk of developing dementia.

Low levels of vitamin and nutritional deficiencies are also the cause of dementia problems; lack of vitamin D, vitamin D, vitamin B-6, and vitamin B-12 and foliate poses great risks of dementia development (McKhann et.al, 2011).

CHAPTER 02: LITERATURE REVIEW

The effects of dementia are immense; it can bring many complications to the body systems leading to its inability to function probably. Some of its effects to be body system include; Victims of dementia suffer from poor nutrition, this because they reduce or stop eating completely, and thus affecting their nutritional intake. Chewing and swallowing become a great challenge for this kind of people. The challenge of swallowing leads to an increase in the risks of choking, and aspiration of food into the respiratory systems such as lungs. This ultimately causes blocking in the breathing systems and hence causing pneumonia (Kitwood & Bredin, 1992). The gradual development of dementia makes one unable to perform self-care tasks; which include; dressing, bathing, brushing teeth and hair, one becomes completely dependent on matters such as using toilets and accurately taking his/her medications independently. Dementia possesses a great challenge in personal safety. The victims of dementia are not able to drive, cook or walk alone. Doing this may a big risk for their lives. The last stage and ultimate end of victims of dementia is death. Often from the infection, one can go to a coma and end up in the grave.

2.1 Prevention of dementia

There has not been found a clear or sure way to prevent dementia, but several steps exist that one can take to help solve the situation. Still more scientific research is needed to be done, but as this in waiting one can take the following steps to help solve the situation at the moment; There's no sure way to prevent dementia, but there are steps you can take that might help. More research is needed, but it might be beneficial to do the following: The onset of dementia and its effect can be reduced while one can engage in activities that will keep his/her mind busy. Such activities which are mentally stimulating include; reading, solving puzzles, playing chess games, playing word games, cards and casinos and training your memory will help in a great deal in delaying such effects (Adams, 2008). Social interactions and relationships, physically active and participating in both physical and social activities contribute a lot in delaying the effects and development of dementia and decrease its symptoms. Every individual who may desire to reduce or delay the effects of this contagious disease is therefore advised to exercise weekly, aiming for 150 minutes doing exercise per week. Joining playing clubs such as footballs, basketball or training with athletes is one of the good ways of delaying the effects. The recent studies on the major cause of dementia have shown that smokers are in great danger of developing dementia-like effects, especially smokers of middle age and beyond have a great risk rate of developing the infection. Blood vessel (vascular) conditions also rise due to active smoking. It is therefore advised that for one to reduce these effects quitting smoking can help in a great deal, and will at the end improve one's health conditions. People with low levels of vitamin D in their blood, just as more studies reveal that there are in likelihood of developing Alzheimer's disease, together with other forms of dementia. Through taking of certain foods, supplements and sun exposure one can be able to get vitamin D which can reduce the dangers. However, before these recommendations are given out to such patients more studies are still needed. Nevertheless, everyone is advised to partake of more vitamin D foods. B-complex vitamin and vitamin C while considered can still be a good option also to take them. One is also required to manage the cardiovascular risks factors of developing dementia. Shortcomings like high blood pressure, high cholesterol, diabetes, and high body mass index (BMI) should be treated. Higher risk of developing some types of dementia can be caused by high blood pressure. Therefore a lot of scientific research is required to investigate whether (Camicioli, 2013) Constant medical checks and paying a visit to the doctor is another way of reducing the effects of dementia. If you experience hearing loss, depression or anxiety is a call for one to visit the doctor as soon as possible (McKhann et.al, 2011). Try to maintain a healthy lifestyle and check your diet. Partaking of healthy foods is important for a number of reasons. Mediterranean diet which is rich in fruits, vegetables, whole grains, and omega 3 fatty acids, which are mostly found in certain fish and nuts is a good recommendation. This diet promotes health and reduces the risk of one developing dementia. This type of diet helps to improve cardiovascular health, and this is a wide perspective helps in reducing the risk of developing dementia. Eating fatty fish such as salmon for three times in a week, adding a handful of ground nuts, mostly almonds and walnuts daily can be of great benefit (Fossey et.al, 2006). It's a great danger for one not to get quality sleep; for lack of quality sleep is a risk factor for dementia development. Practicing good sleeping hygiene, and having a talk with your doctor if snoring is a problem to you, or at times when sleeping one develops problems of breathing and even not breathing completely will be of great benefit (Adams, 2008).

2.2 Diagnosis of dementia

Developments of noninvasive computed tomography of the brain and rise of magnetic resonance imagining (MRI) technology, there has been a great improvement in understanding the vascular diseases. This is a wide perspective has brought evidence on a wide spectrum of ischemic changes and unlikely findings in apparent cognitively normal aged persons (Manthorpe et.al, 2009). This has further perplexed researchers and clinicians alike. With its rise as a unique tool, MRI is coupled with shreds of evidence in related diagnostic technologies, at the moment diagnosis of dementia is integrative and it uses a variety of diagnostic tools to merge neuroimaging and immune histopathology analysis to find out the major contributions of various types of neuropathology mechanisms, this include; vascular factors, in dementia. Testing of the disease and its type can be a very challenging exercise. People living with dementia have cognitive impairments and lose their ability to take on their daily duties, such as partaking of their medication, paying house bills and driving safely. The doctor must first recognize the pattern development of the loss of skills and functions and determine what the victim can still be able to do, in order for them to diagnose the causes of dementia. In the recent past, biomarkers have become mostly available in making a more accurate diagnosis of Alzheimer's disease (McKhann et.al, 2011). One should inform the doctor to review his/her medical history, find out the symptoms and take on a physical examination to find out whether there is any recent development of the disease. The doctor can ask anyone who is close to the patient about their symptoms, and this may prove to be a really helpful thing. One single test can never give a clear report on the diagnosis of dementia, therefore doctors at most times can run a number of tests that can be of help in pinpointing the actual problem (Manthorpe et.al,).

2.21Cognitive and neuropsychological tests

In most cases, doctors take time in evaluating ones thinking (cognitive) functions. This is done by providing a good number of tests that helps in measuring thinking skills, such as memory, orientation, reasoning capacity and judgment, language skills, attention rate and among others provides a better chance for doctors to conduct the exercise effectively (Adams, 2008).

2.22Neurological evaluation

This is where the doctors examine your memory, language, visual perception, attention, problem-solving skills, movements, senses, balance, reflexes and other areas in order to find out whether one possesses a danger in dementia development .(Kitwood & Bredin, 1992).

2.23Brain Scans

Computed tomography (CT) and magnetic resonance imagining (MRI) technology, can be used in taking brain scans to check evidence of whether one is developing stroke or bleeding, brain tumors or maybe have signs of hydrocephalus. PET scans can be used to show patterns of brain activity and if someone has the amyloid protein, this is a hallmark of Alzheimer’s disease, which has been deposited in the brain (Manthorpe et.al,).

2.24Laboratory tests

The simple blood test can be used to detect underlying physical problems, which may lead to problems in brain functions. The deficiencies which can be indicated by blood tests are the deficiency of vitamin 12 or underactive thyroid glands. At times the spinal fluid can be tested to check the infection, inflammation or markers of some degenerative diseases (Adams, 2008).

2.24Psychiatric evaluation

Mental health professionals can determine if depression or any other mental health conditions is a major contributing factor to your symptoms (Fossey et.al, 2006).

2.3 Disorders linked to dementia

Huntington's disease

Appearing much earlier in life at around ages 30-40 this disease also affects cognitive function and involves a decline in an individual’s capacity to think. It is however caused by mutations ia a particular gene which results in deterioration of nerve cells in the spinal cord and brain.

Traumatic brain injury (TBI)

Traumatic brain injury is a repeated injury or a onetime adverse physical impact on the brain. This can be the result of an accident or injury to the brain during sporting activities such boxing, bike riding and football. This condition causes symptoms such as loss of memory, speech impairment and behavioral changes which depend on the affected part of the brain.

Creutzfeldt-Jakob disease

This is an inheritable disease with no known cause. The cause is however thought to be deposition of prions which are a set of proteins that have been found to be infectious. This disease shows signs in people above the age of 60 years and is very deadly. It has dementia like symptoms.

2.4 Care of persons with dementia

During their stay in hospitals patients suffering from dementia are in most cases subject to mandatory dependency and unfamiliar environments and as a result are prone to emotional distress and loss of functionality (Manthorpe et.al, 2007). A more person centered care has been found to be inevitable for such patients. Person centered care is a philosophy of care which suggests that care for an individual should be based on the needs of the individual as assed through interpersonal relationships other than processes and the need to organize staff. This approach is specifically indispensable for persons living with dementia as the disease does not progress linearly in all the patients (Chenoweth et.al, 2009). Persons suffering from dementia also need love, a feeling of attachment though they almost all the time feel as though they are in a strange place, inclusion in the events of normal life, an occupation and identity since consciousness is retained by dementia patients they are aware of who they are and this identity should be maintained (Kitwood & Bredin, 1992). The person centered care focuses on providing special psychosocial interventions, reducing the obtrusive nature of the care provided and removing any physical restraints which have been put on the patients. In the personalized care environments more emphasis is put on the well- being of the person with dementia as opposed to custodial care (Prince, 2004). The patient’s strengths choices and values are respected and honored. The care environments are designed to value the personalities and meet the needs of the patients. The persons who give care for dementia patients are also respected. Every patient in person centered care environment is treated as a unique individual with their own unique needs. In a person centered care, the care givers look at the world from the points of view of the patients in order to understand their behavior and communication (Fossey et.al, 2006). This also helps them to understand the perceived realities of the patient. Creating social relationships is also important in the idea of person centered care of dementia patients. The indicators that care givers are valued in person centered care systems include providing clear vision to the employees, availability of systems which support staff development, creating mechanisms for quality improvement and providing physical and social environments which are supportive and make all the employees feel included (Kitwood & Bredin, 1992) Individualized care is indicated by learning the life stories of the individuals, allowing the patients to use personal belongings, an accommodation of the preferences, a review of the strengths and needs of the patients and unique routines of the individuals. The indicators of viewing life in the perspective of the patient are empathizing with the patient, defending the patient’s behavior, communicating well with them, taking care of their physical environment and being able to assess their health condition. Building relationships can be indicated by being warm to the patients for instance avoiding criticizing them, validating their feelings, speaking to them in a friendly manner and providing assistance when need be (Brooker, 2003)

Nursing Home Reform Act (OBRA ‘87). OBRA ’87 of 1987 indicate some important elements of person centered care (Brooker, 2003). It states that each person should receive the care which is necessary and services which are needed to attain and maintain the greatest achievable physical, psychological and mental well-being. This is in accordance with the compressive assessment and plan of care. Models like Wellspring, Eden Alternative and Greenhouse otherwise referred to as Small House which were instituted during culture change movements have implemented some components of person centered care (Kitwood & Bredin, 1992). Among these the Eden Alternative pioneered by Bill Thomas is one of the best models of person centered care. This model sought to eliminate the three most common injustices experienced by persons in the nursing homes. These are persons experiencing extreme loneliness, persons experiencing utter boredom and the helplessness of the persons. By seeking to address these plaques persons living with dementia can lead better quality lives. The Eden Alternative sought to transform the physical environments of the nursing care institutions to achieve a more home-like environment (Fossey et.al, 2006). To achieve this animals and plants could be included in these homes. The Green House also referred to as Small House focuses on providing quality life for those who live in nursing homes by providing a transformation of the physical environment. It focuses in changing the configurations of staff and emphasizes the need of providing companionship to patients of dementia and not just a focus in therapeutic circumstances. This model emphasizes on the need for family to stand with these patients and fully participate in their care (Kitwood & Bredin, 1992). It also states that the care delivered must take into consideration the preferences and values of the patients, their family members and caregivers and promotes self-management. A variety of tools to be in place to assess person-centered care practices which are currently being used in nursing homes. In a review of tools that have been published for use in measuring person centered care of persons with dementia, Edvardsson and Innes (2010). The comparison of the tools was based on conceptual influences, applicability, intended use, credibility perspectives studied and psychometric properties. One tool assessed was Dementia Care Mapping (DCM) this was because this particular tool was specific to dementia. Each tool explicitly focused on measuring the forms of person-centered care based on the way the patients, staff family members and caregivers perceived it (Kitwood & Bredin, 1992). Further research on how reliable, applicable and valid these tools are in assessing person centered care system. These tools for assessing the practices currently being used to assess person centered care were not developed for dementia care cases but are relevant because they focus on interpersonal relationships, an understanding of the patient and allowing the patient to be self-reliant which are issues central to and characterize dementia care(Brooker, 2003). Specific to long-term settings of care, DCM can be used as an observational tool. It uses four coding frames which are predetermined and aim at making the person observing to view the word from the view point of persons living with dementia. The Coding frames used in DCMs are the following; mood enhancers which is a six item scale, behavior categories of behavior which is a twenty three item scale, a seventeen item scale of personal enhancers and another seventeen item scale of personal detractions(Brooker, 2003). Items are rated on A 2-point scale ranging between “detracting” and “highly detracting” for PD and “enhancing” and “highly enhancing” for PE are used to rate the items. A systematic process of development of items was used to develop DCM. The Staff PC-PAL contains 62 items which includes five areas that reflect person-centeredness in assisting patients in living (Fossey et.al, 2006). These are workplace practices which account for 23 items social connectedness accounting for 16 items, eight items for individualized care and services, eight items for atmosphere and 7 items for caregiver-resident relationships

In addition, the Advancing Excellence in America’s Nursing Home Campaign developed a Person-Centered Care Tracking Tool consisting of seven steps to success. The steps include (1) explore goal, (2) monitor and sustain, (3) engage, (4) create improvement, (5) examine process, (6) identify baseline, and (7) celebrate success. This tool includes forms, spreadsheets and links to resources. To help gather data in order to make changes, and celebrate success. Lastly, Burke, developed the Person-Centered Environment and Care Assessment Tool (PCECAT) which could be used to assess and thus improve residential care standards using person-centered principles, while at the same time meeting Australian care guidelines for older adults (Kitwood & Bredin, 1992). The development included a review of existing assessment instruments and further aligning them with person-centered principles and Australian dementia care quality standards—management systems, safe systems ,staffing and organizational development, , resident lifestyle, health and personal care and physical environment,. The tool successfully moved from concept to development and testing, proving to be valid and reliable. The tool is specific to Australian care standards but can be adapted for use in other countries. As shown, a variety of tools are currently available to measure person-centered care practices but more research (Brooker, 2003) and consistency is needed. It is important that tools continue to be developed and tested so we can consistently measure the outcomes associated with person. Person centers care has proved very beneficial as demonstrated by various studies. These studies have found that the results of person centered care are measurable. These benefits are as follows; there has been an improvement in the quality of life of persons suffering from dementia, they have indicated a decrease in their levels of agitation, they have shown improved patterns of sleep, they patients have also indicated high esteem levels. Life has that been made better for both staff and persons with dementia who live in these person centered places

2.5 Advantages of person-centered care for patients suffering from dementia

Positive results have been linked with the development of person centered care systems for persons suffering from dementia. These have been identified in various studies and found to be measurable. The positive achievement are the improvement in the quality of life of persons living with dementia, an improvement in the self-esteem of those living with dementia, a display of decreased levels of agitation and improved patterns of sleep. Person centered care systems have been shown to generally improve working conditions and thus act as a motivating factor for the persons involved in caring for dementia patients and staff.

2.6 Specialist care units for Dementia

Generally most dementia patients can be taken care of in the community within nursing homes or their own homes. There is however some of them who need specialized care. These are those who are under continuous distress. Dementia patients in specialized care units are those who experience mental health issues which are acute in nature of those with physical needs that can only be addressed under such care. The services in these units are offered by mental health staff who are qualified to do this either in a psychiatric hospital in in separate units dedicated for this purpose. The dementia patients only stay in these units for short periods of time until they gain stability to be able to live in community based care environments. These units function to improve the quality of care, the experiences of the dementia patients and the outcomes of care given to the dementia patients and their caregivers (Hughes et.al, 2005)

2.7 Specialist nurses and careers

Patients suffering from dementia have longer hospital stays and require more nursing resources as compared to their counterparts. They are more prone to suffer adverse conditions such as dehydration and malnutrition and are more frequently readmitted. Shortcomings have also been reported in clinical and interpersonal care despite the good quality of person centered care. All these factors make it necessary to have specialist nurses and carers. Nursing care greatly improves the quality of care received by dementia patients (Koopmans et.al 2010). The nurses need to be trained in order to equip them with the necessary skills and knowledge to enable them effectively care for dementia patients (Chang et.al, 2009). The use of specialist nurses is not novel to dementia care since it has been applied before for other terminal illnesses such as cancer with considerable success. These specialist nurses are to work together with community service providers, psychiatrist and other health professionals to ensure greater benefits are achieved. The persons that characterize these groups should be opinion leaders in order to be able to gain access to senior members of the nursing fraternity. The roles of the specialist nurses should be clearly outlined to ensure effectiveness (Traynor et.al, 2011)

2.8 Ethical approach to care

Ethics is the question of what is morally right especially in a seemingly ambiguous situations where the line between wrong and right is thin. Person caring for people with dementia often find themselves in such situations (Manthorpe et.al, 2007). There is therefore a need to set up an ethical framework which provides general values on which ethical judgement can be based. A frame work proposed by a report on dementia has six components. The first component is a case based approach to making ethical decisions. Here the relevant facts are identified and interpreted then appropriate ethical values are applied to the facts. A comparison is then made to other ethical situations to find out whether there as any similarities and differences between the current decisions and those made in the past. Component two is belief about dementia and it states that the cause of dementia is a brain disorder and that this condition can cause harm to an individual. Component three states that persons with dementia can still live a quality life throught the cause of their illness (Chenoweth et.al, 2009). Component four states that both the interests of the patients with dementia as well as the persons who care for them should be considered. This discourages partiality where only the interests of those with dementia are taken into account. These are because persons with dementia also have self-interests and values which they consider important to them. Component five indicates that ethical decisions should be made in accordance with solidarity, acknowledging the fact that persons with dementia are also citizens with rights and that every person has a role to play in support of persons living with dementia. Component six states that the person with dementia remains valued the same way he was before the disease and all through the cause of their lives. This is despite the fact that the disease causes cognitive and sometimes behavioral differences (Prince, 2004).

2.9 Care planning for persons with dementia

Care planning is an essential element of in the bid to deliver good care for dementia patients, their family members and persons involved in caring for them. Every person living with requires a personal care plan. These personalized care plans should be merged with support plans. A care plan is a clearly written plan which explains the type of care being received by a patient, future plans for contingency and arrangements which are in place for the purpose of review (Mansell & Bseadle, 2004). The care plan should be made available and should be easily accessed by the patient. If need be it must be written in a language that the patient can understand in the current mental state. This may involve looking for services such as advocacy and translation or a presentation of information in form of pictures, audios or easy to read materials. The needs and wishes of the patient must be taken into consideration when formulating a care plan (Dowling et.al, 2006). Staff training on the code of practice in accordance with the mental capacity act should also be conducted. Care plans should be instituted as soon as a diagnosis has taken place. The care plans are then supposed to be reviewed frequently in order to respond to the needs of the person who has been diagnosed with dementia. The reviews are conducted with the patients suffering from dementia, their families and caregivers in attendance. Dates for reviews are set when the plan is set (Fazio et.al, 2018). The frequency of review should be as frequent as possible with an annual review being the minimum. For care plans to be reliable there is need for competent staff, which is achieved through staff training. Information Assurance contracts can be used to ensure the continuity of care planning and to assess its quality. Care plans are completed by a primary care staff with the dementia patient or a family member or a caregiver in attendance in case of the inability of the patient to offer the needed information (Brooker, 2003). The initial personalized care plan can be developed by a dementia advisor or any other persons appropriately trained to do that work. The plan is formulated in the presence of the patient to ensure the patient owns it and that it takes into account the needs and interests of the patient as much as possible. The key elements of a dementia care plan are: a review of diagnosis, a review of the support given to cares, a review of the patient’s medication, a risk evaluation, enquiry on new symptoms, treatments and support, individuality and advanced care planning. A review of the diagnosis consists of a determination of whether the diagnosis that was given was correct and how the person involved understands that diagnosis. The persons caring for dementia patients need to perform a cares assessment and may sometimes be in need of a carers plan. They must be provided with all the necessary information to ensure that they can provide an effective care to these people. These persons should be provided with information in order to allow them join and participate in research involving people living with dementia. Medical reviews help to stop the usage of drugs which are have either become unnecessary or which may have been found to further increase the decline in cognitive function. Reviews on nutrition may be provided by specialists in such areas giving the patient an opportunity to try new things. Medical reviews also provide a room for holistic review of the persons health identifying any other services and conditions that the patient may be in need of or is likely suffer from respectively. For the good of the patient any new symptoms must be assessed and properly dealt with.

2.10 Dementia care pathway

A care pathway in dementia defines the process of care received by a patient suffering dementia from the day they go to hospital and are diagnosed with symptoms of the disease which may include memory losses, inability to make judgments over time and problems of undesirable social behaviors (Hertogh, 2006). This pathway defines what happens from this stage all the way to the end of life of the person with dementia. There are various care pathways in place depending on the organization delivering dementia care. The dementia care pathways are however based on three key principles (Van der Steen, et.al, 2017).These principles are raising awareness about dementia and educating the public to have the correct understanding of what dementia is, it encourages persons to obtain an early diagnosis and seek for support early after they have been diagnosed and lastly it encourages patients living with dementia to have a positive life during the remaining part of their lives. There are requirements which a dementia pathway must meet, although different stages of dementia may require different levels of support and care (Speechy et.al, 2018). The care pathway should be available to every individual who is diagnosed with dementia without any biases such as age and background. The care pathway must acknowledge the individual’s abilities, accord the respect due to them and allow them to retain their individuality. It should encourage the patient suffering from dementia to remain as independent as possible, retain their reliance on themselves and nurture the strengths. The care pathway should be person centered as much as possible so as to care of the needs of every individual to ensure they are living a quality life (Samsi & Manthorpe, 2014). The persons living with dementia and those who give care to them should be able to understand the care plan, it thus must be written in a language that can be understood by them. It must allow for inclusivity so that other people are given a chance to participate in caring for those living with dementia. Since dementia is a progressive condition it is important to consider the care one needs during the later stages of the disease (Watson et.al, 2006). The patients of dementia lose their recollection of the past events but have intact awareness of their feelings. Family members of persons living with dementia should consider the impact of transferring them to nursing homes. In most cases such movement’s disrupt and confuse these patients (Woodset.al, 2003).

2.11 Assessment of dementia friendly environments in nursing homes

Research has found that cognitive decline has an effect on an individual’s way of perceiving their environment and also impacts their spatial orientation. Such persons may have difficulty finding their way around a place well known to them (Kitwood & Bredin, 1992). This has a negative impact on their psychology and leads to confusion and sometimes agitation. Physical environments can thus impact on the on the spatial orientation of patients with dementia. Favorable design of a nursing home can also act to promote sleep and remove disruptive behavior in patients with dementia (Manthorpe et.al, 2007). The designs that can be effective in these homes include the provision of a quiet environment, use of colors to demark different rooms, use of simple configurations in building and having signs such as using images to differentiate between rest rooms. A provision for natural lighting should be made and a good natural view created from their dwellings. It is advisable that the care setting be of a domestic size and character incorporating designs such as an en-suite bathroom and toilet and private bedrooms (Brooker, 2003). Design gardens and pathways can also be incorporated as an immediate environment of the nursing home. These include the planting of suitable plants using raised flower beds and suitable designs of pathways. The design of a nursing home should provide room for ordinary activities. It should have furniture suitable for the aged, there should be different rooms designated for different uses. The safety features in the nursing homes should not be obtrusive. Persons living with dementia often lack appetite or may not just remember that they need to eat. The kitchen and dining area can thus be designed in a manner that will stimulate appetite. The layout could be appealing and scents of nice foods added to stimulate appetite. The lighting of the rooms should be adequate to facilitate wayfinding. Assistive technologies can be used by patients in nursing homes to help them maintain their independence for longer periods of time.

2.12 Mental health teams

Patients suffering from dementia experience more positive improvement when at their homes or when in nursing homes than when they are hospitalized. The patients however need to provide with support and specialist services while in their homes (Challis et.al, 2002). This support and care can be provided by mental health teams. These mental health teams are constituted of psychiatrists who have vast experience, community psychiatric nurses (CPNs), psychologist, occupational therapists administration staff, social workers and mental health support workers. The mental health teams work in close collaboration with social workers, volunteers and regulators (Goldberg et.al, 2013). They work together with the families and caregivers of the patients to facilitate the following services GP surgeries, community hospitals and outpatient clinics. The community mental health teams have achieved considerable success as it has led to a reduction in deaths as a result of suicide and suspicious circumstances. Patients have indicated higher degrees of satisfaction with the services offered to them. It is thus important to note that community mental health teams is not inferior to standard care and can therefore be an effective approach to caring for patients suffering from dementia (Adams, 1998)

CHAPTER 03: Research Design

The research will be spilt into two phases:

Research Method: Closed ended questions focusing on dementia- friendly settings within the Nursing Home. Both staff working in Nursing homes and Dementia patients will be interviewed

Extraction of Evidence: Evaluate the information collected to formulate results from the findings.

3.1 Aims

This research project will identify the effectiveness of dementia-friendly environments within the Nursing Home. The outcome will aim to identify dementia- friendly settings and how to achieve this. The data collected will do used with Nursing Home facilities to ensure new findings will be implemented and recommended to achieve a dementia- friendly setting.

3.2 Objectives

Research objectives will aim to define dementia friendly in a Nursing home setting. Emerging themes will cover the following:

Background information

Responsiveness

Accessible

Awareness

Valuing people living with dementia

The range of interventions included the in the research:

Assessments

Care Plans

Care Pathway

Involving Carers

Mental Health Teams

Specialist nurses and carers

Person- centred care

The research will support changes in:

Deskilling

Staff motivation

Staff turnover

Policies and procedures

Training

Continued professional development

Understanding and communication

Role and responsibility

Relevant and personal experience

Leadership

Share Ethos

3.3 Methodology

The method used in this research to collect data is through the use of questionnaires. This method was chosen due to its convenience since it requires less time and leads to the collection of high quality information. The questionnaires were designed in such a way that they were simple and avoided the use complex jargon since some of the people targeted included person with dementia which have a reduced cognitive ability. The questionnaire was structured in a way that it started with simple less personal and general questions. As the questions proceeded they became more sensitive. The questionnaire was a closed questionnaire this implies it required just a yes or no answer. This was so that there could be ease in response and to facilitate qualitative analysis. The questionnaire was short since the use of long questionnaires was found to be inappropriate as it reduced the willingness of individuals to answer. The ethical issues that were put into consideration were to ensure that all information given by the participants such as their names were treated as confidential. This also promoted the openness of the participants. The participants were also first asked if they consented to fill the questionnaire before they were administered. Another ethical consideration put in place was that the participants were allowed to withdraw their consent for filling in the questionnaire at any stage of the interview process. A pilot study with 10 participants was conducted to ensure that the questions are relevant to the test population in accordance with their level of sensitivity, language, length and language used. The questions were to be semi- structured and were to take place in face to face interview with the permission of the staff and dementia patients. The interviews were to clarify interpretations of dementia- friendly healthcare. All staff involved will discuss their experiences in for improving dementia care and service. The analysis of the questionnaires was achieved by calculating the tallies and then calculating the percentages of the Yes and No answers of the questions. Comparative analysis was carried to determine how compliant with DSDC.

3.4 Results

10 interviews comprising of staff members were successfully conducted and the questionnaires duly filled in. The staff members comprised of the different levels of authority within the same institution. Therefore, the result varied depending with the level of experience, specialization and expertise of each staff member. There were 3 senior staff members whose views were at an advanced level thus providing a deeper insight to the researcher towards realizing the various intricacies of providing dementia friendly environments. Two of the staff members displayed to a certain degree pessimism towards achieving the goal of a dementia friendly environment and specialized care. The explanation given was that, unlike other diseases, dementia patients will usually have different responses to different mechanisms of care given to them. Therefore, nurses are more likely to be frustrated if a method that has worked for two consecutive cases of dementia, fail on the third patient hence necessitating a revision of mechanisms. At least four (4) interviewees were general and low level staff members hence having a basic understanding of dementia and its various associated diseases. These interviewees showed a lack of deep understanding of the various associate dementia diseases. However, since in their line of work they are meant to give routine attendance to patients in the Nursing home, they appeared to understand each patient’s need although from an objective view. For example they would not understand particularly the form of Dementia the patient is suffering from but they had created rapport with the patient to know what exactly they want done to them. Therefore, the conclusion shows that in essence dementia friendly environment was a possible success. However, the flip side of these routine checks and care is that they did not provide development towards treatment of the patient. The lack of understanding the specific disease meant that the staff members attended to the patients only to the extent of fulfilling the patient’s desires but not exploring other ways to improve their medication and treatment. The effect of this is that the measurement of success of personalized treatment could not be weighed in terms of development but in terms of maintaining a status quo.

The last category was of junior and learner staff members. These comprised of community volunteers, persons on commuted sentences and probation. The results indicated a certain lack of understanding the needs of dementia patients. The result indicates that without close supervision, these staff members were likely to have a negative impact on a patient if not supervised by a trained officer. Although, the intention to provide personalized environment was imminent in their thinking it was a subjective approach of what ought to be done and not an objective approach of understanding the particular needs of each dementia patient. Interviews on the patients themselves were not successful. It would appear that the need to create a personalized environment required having to take a lot of time with each specific patient so as to achieve quality answers. All staff members interviewed expressed concern that personalized environment for dementia patients was unlikely to be largely successful in Nursing home set ups due to financial constraints. Each patient required investment in time and as there were many patients but limited staff, this would create a vacuum in other operations of the centre. Again as the success of this methodology is still in the testing stage, there has been little investment by the financiers to specifically achieve this goal by employing more stuff and training staff members on creation of dementia friendly environment. Hence most of the skills are passed on through apprenticeship.

3.5 Outcome

The extraction of evidence suggested that members of staff in nursing homes for the care of dementia are aware of what constitutes dementia friendly environments and the importance and positive impacts that result from the implementation of such an environment on the quality of life of persons living with dementia. Particularly, the staff understood that almost every old aged person will show improvement in health if they feel as if their needs are addressed in accordance with their wishes and not that they are subjected to what is right in the mind of the attendant. The biggest concern was that, whereas there is will, the cost of implementation is too high. The cost does not only arise from the pecuniary point of view but also the need of enough, willing and trained man power. Each patient would require constant attendance by the same person so as to create that needed rapport and friendly environment. This would mean a lot of time invested into an individual hence it may result to backlog of duties. Moreover, there is a risk of frustration, as highlighted by the senior interviewees. Due to the trial and error method that is involved in creating such an environment, the staff might be disillusioned by the large percentage of failure experienced. In deed since most friendly practices are passed through apprenticeship, the trainees or successors of the practices tend to lack the basic understanding of the various operations that preceded the success of a certain practice. For example if a patient wants flowers they would probably want the flowers to be given by a specific individual or made to believe that it is a certain individual whom they love, that sent for the flowers. If such information is not passed on correctly, then the effect would be to deliver a perishable product post mortem.

Therefore, this suggests that staff dealing with dementia patients require expertise knowledge in creating a dementia friendly environment to improve care standards. Therefore, it could be that in the near future, dementia centers would have to train specialists to specifically handle these kinds of patients to the exclusion of other roles. This would go a long way to ensure that frustrations are contained as the specialist understands their role clearly and will do anything within their power to achieve the best result possible.

Staff Outcomes:

These findings were able to test and refine the staff’s definition of dementia friendly environments and consider methods of improvement.

Staff members are only able to address dementia patients in relation to their own person- centred approach and care plan depending on their knowledge of dementia care and the values and preferences of the patients.

Staff members are successfully able to understand the importance and priority of a dementia patient

Staff are heavily influenced by senior members of staff, whether they are specialised in dementia care or not

Staff members are able to recognise the importance of the ability to work in a team when dealing with dementia patients suffering from dementia.

Staff members are more open to seeking further guidance and advice when dealing with patient’s suffering from dementia.

Staff members regard dementia as a disease that requires attention and personalised care but however do not demean the persons suffering from dementia because of the condition in which they currently are. They believe these people deserve a lot of respect despite their cognitive impairments.

Staff members are more committed to care for dementia patients that other conditions.

Staff members recognises dementia care as skilled work that requires a specialised skill set and training and that also required support for themselves.

Staff members recognise that the family members of a person and the community can play crucial roles in ensuring the patients with dementia live quality lives.

CHAPTER 04: ACTION PLAN & RECOMMENDATIONS

From the finding the following action plan and suggestions can be implemented or discussed:

Robust Dementia education

All staff members of the nursing home ought to be trained in a course of dementia as a disease. They need to acquire the requisite basic and bare minimum understanding of the do’s and don’ts when handling dementia patients. This would mean having frequent and random internal refresher courses. It would be advisable that the nursing homes nurture some of their staff to become specialists in handling dementia patients. As some staff members might not be having experience in dementia, the experienced ones should engage their colleagues in training them through group works and supervisions as if in an attachment kind of set up. Additional constant CPD and training are necessary to keep all staff up to date with the emerging trends and issues in deigning dementia friendly nursing homes. This would also help train the local staff on the associate dementia diseases that have not been experienced in the centre by introducing guest trainers who are expert in such other areas.

Specialized staff that creates motivation and emotional intelligence

Nursing homes should consider hiring a few members of staff who are specialised dementia staff. This allows other staff to draw guidance and information from them when need be. Moreover, the presence of specialists creates motivation for other less experienced and semi-skilled staff. The display of easiness of work by specialists would make the staff feel motivated to perform a similar act without much struggle hence avoiding the frustrations. Further, the staff would also learn emotional intelligence an important psychological skill that would help them understand the patient’s emotional distress without it being a hindrance to them delivering a quality service to the patient.

Creation of Care plans and code of conduct

The centre should also create a reporting mechanism on the progress of each personalized treatment administered. This would help to reconcile the various stages and methodologies applied and thus create a general plan informed by the trends of each patient. It must, however, be reviewed regularly in order to ensure the most current needs of the patients suffering from dementia are met. From the care plans, the nursing homes should also create a code of conduct for every care taker to ensure that this method is kept alive even if initially there may be more failures than success due to the lack of proper expertise.

State financial input

As it may economically distressing for relatives of dementia patients considering that healthcare covers may not be available to such long term and unpredictable diseases. The State and federal governments will have to inject more into the nursing homes. This means that the success of the dementia friendly environment must be campaigned for so that it can get enough publicity. Again as it may be impossible to finance every nursing home, the State ought to create dementia centres that specially deal with dementia patients only to the exclusion of others. This would help in creating the necessary infrastructure for such centres.

Inclusion of family members

Whereas the relatives may be financially unable to pay for dementia friendly care, the centres should train them on the skills of handling their disabled relatives in a manner they can always care for them at home. Most of these patients at old age are attached to some of their children, relatives or friends within their community. Such close kins should be called upon and shown the easiness in caring for their loved ones without interfering with their daily chores and activities.

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