First paper: Alzheimer, Still Alice
Alzheimer has been described as one of the major causes of dementia,which is decline in thinking and loss of memory. At the same time,the disease affects and individual’s abilities to reason normally,often causing problems and posing as risks to themselves and thosearound them. Despite the fact that there has been research conductedinto studying the disease and characterizing it, not all mysteriessurrounding it have been unearthed. In the present day, the diseaseaffects hundreds of thousands of people in the United States alone.This has called for increased awareness campaigns to help synthesizethe public about its nature, as the first move towards helping thiseffected and affected. One such awareness effort is the novel StillAlice, which is about a professor known as Alice Howland, who isdiagnosed with the disease at 50 years. The movie shows her familyand friend’s struggles to cope with her mental decline throughoutthe stage. This paper looks at the signs and progression ofAlzheimer’s disease and connects the medical information toparticular scenes in the novel Still Alice.
This is the most indicative of signs of the disease. Memory loss is avery common sign in patients suffering from Alzheimer’s and mostlydetected in the early stages (Mace & Rabins, 2011). The patientsoften forget even the most recently learnt information. At the sametime, the patients can forget other important things such a dates andwords, and often may find themselves asking the same informationrepeatedly. However, Mace & Rabins (20100) say that this memoryloss is not permanent, as the patients may find themselvesremembering the things they forgot after a short while. In StillAlice, there is a perfect example of memory lapse in the lecturehall scene. Alice is giving a lecture in a hall, and all is well upto the moment she wants to elaborate her point (Genova, 2009). Whileat it, she forgets the name “lexicon”. She brushes off theincident, however, at the back of her mind she notices thatsomething is quite wrong. She only remembers the word much later.
Issueswith completing familiar tasks
Spalletta et al. (2010) say that during the late stages of the onsetof the disease, the patients find themselves being unable to completetasks they often do. For instance, the patients may find it difficultto park a car, fill up a bucket of water or even cook a simple meal.On the other hand, Alice soon developed difficulty in answering herphone calls, and spelling questions from the students correctly.Another passage that shows this symptom in Alice is when she iscompelled by her doctor to give a speech about the disease at aconference (Genova, 2009). Normally, Alice was very good at givinglectures and speeches, and needed little or no help from gadgets oranyone. However, in this particular incident, Alice uses ahighlighter to keep her on track and avoid repeating things that shehad already gone through.
Losingtrack of where one is going
Patients show this symptom in the early stage of the disease,however, it is noticeable in the middle stage (Spalletta et al.,2010). Further, they explain why this happens. When someone is askedto give directions, or go to a certain place, it is required that heor she concentrate on the task and pay enough attention to do itcorrectly. However, one of the first casualties of the disease is theattention system. Even before memory loss, the patients’ brainschange due to dementia. At the same time, getting to a certain placeneeds that the person is able to connect a series of steps anddetails to complete the direction, which usually lacks in people withAlzheimer as scenes in the novel illustrate. Two scenes portray thissign in Alice. First, she gets lost at one moment when she issearching for the bathroom in her own house. In another scene, Alicegets lost in the college compound when she is on her routine run(Genova, 2009).
Research indicates that the neurological pathways that guide peopleto remembering things is quite complex (Borroni, Costanzi &Padovani, 2010). Such, human beings have to hold on to the images ofthe last place where they saw on object as the guide to locating it.However, people suffering from dementia often find it difficult totrace where they placed objects, and may end up never retrievingthem. This is because their neurological pathways have beendestroyed, making it difficult for them to remember details from thepast. In other instances, people with dementia may be suspicious ofother people, often thinking that they are trying to steal thingsfrom them. This compels them to hide objects, and in doing so, theymay end up forgetting where they hid them. In the novel, Alice oncemisplaced her phone, and was unable to locate it, not until herhusband helped her find it after a whole month (Genova, 2009).
Some of the symptoms of depression caused by the disease are apathy,social withdrawal, isolation and impaired thinking (Borroni et al.,2010). Borroni et al. (2010) assert that apathy affects almost 70%where they suffer from functional impairment i.e. a sense thatnothing matters. Depressed people have a dysfunctional frontalsystems thus, brain damage or impairment, which leads to emotionalfatigue. This fatigue leads to social withdrawal, apathy, andimpaired thinking. In this regards, depressed Alzheimer’s patientsare easily frustrated or disturbed, have increased feeling ofhopelessness, thoughts of suicide, loss of interest in normalactivities, decreased appetite, and presence of physical symptomssuch as headache and pain. However, it is difficult for the patientsto articulate their sorrows, given the cognitive impairment that isexperienced. Regardless, the patients are often guilty and hopelessof their situation, strong signs of depression. Genova describes oneincident where Alice was frustrated. “Alice nearly lost her mind.Much to her maddening frustration, she recognized her owncontribution to this problem” (Genova, 2009, p. 173). Given thatthere is no single test for detecting depression, diagnosis oftenrequires a critical assessment of the patient’s condition byexperienced practitioners. At the same time, it has to be kept inmind that some medications’ side effects may produce the sameresults. Alice gets depressed and has suicidal thoughts, as sheprepares herself to terminate her life if she finds that she is nolonger able to answer some questions in the future (Genova, 2009).
Withdrawalfrom work or social activities
The patient often fails to perform well in their work and otheractivities or hobbies that they previously enjoyed. According toSpalleta et al. (2010), the patients avoid being social and changetheir characteristics, mainly because they are embarrassed of howpoor they get to be in terms of socialization. At times, it istypical of the patients to feel weary of their works and familyobligations. This may lead to loss of employment. Alice is fired fromher place of work, as she fails to deliver, due to lack of theability to focus in the lectures. This may be mixed with suicidalthoughts. At one point, on the verge of losing her job, Alice gotsuicidal thoughts. “She’d rather die than tell him…she wantedto kill herself” (Genova, 2009, p.991). This further pushed heraway from those close to her.
Spalleta et al. (2010) say that the rate of worsening of thecondition varies from patient to patient. At the same time, differenttypes of dementias have different rates of progression. Some of thefactors that influence the rate of progression are a person’s age,genres and general health conditions. For example, people who developthe disease before they attain 65 year have a faster progression, andthose with poorly controlled chronic diseases such as heartconditions and diabetes are much likely to deteriorate faster.However, research by Borroni et al. (2010) indicates that there arecertain interventions for slowing down the rate of progression. Otherpersonal interventions such as regular exercise and a general healthylifestyle too have positive effects for the patients. A healthylifestyle means avoiding smoke and reducing the intake of alcohol,and at the same time, visiting a physician for regular checkups.
The disease begins with development of minor changes in the patient’sgeneral behavior. The signs on this stage may be so mid that they canbe confused for other attributes such as fatigue or stress (Braak etal, 2011)). One of the most prominent symptoms in this stage ismemory loss. At the same time, in this stage, the patients may findthemselves mislaying objects in the house or office, poor judgmentand general confusion of time and events. The patients may alsobecome slow in grasping new information and skills, despite the factthat they may actually be bright. Lose of the right words for aconversation is common with this stage. During the late stages of thedisease, the patient may show anxiety and mild depression. Theybecome irritable because they experience distress in doing simpletasks, which they were used to doing. For Alice, her first stage waswhen she could not find the right word to use in the lecture (Genova,2009). It may take up to months or few years to develop the nextstage.
During this stage, the symptoms from the previous stage become morepronounced. Braak et al (2011) says that the patients often need helpto accomplish day-to-day tasks. In the novel, Alice was in themoderate stage when she began having difficulty answering her phoneand spelling questions correctly (Genova, 2009). During this stage,she also found herself losing things and needing support from herhusband to locate them. There are also major behavioral changesduring this stage, as the patients may look very confused to thepoint that they do not recognize family members. Alice, when at thisstage, was not able to recognize her daughter when she visited thehospital to see her newborn grandchildren.
This is the final stage, before the patient finally dies. At thisstage, the patients need extra help performing even the easiest oftasks, and nurses are assigned to help them (Braak et al, 2011). Lossof memory becomes very pronounced during this stage, and the patientscan barely recognize objects and people. The only form of memory isbrief flashes of recognition, which may not be of much help. Thepatients become very weak, and they are at most times bed-ridden. Thebrain damage at his stage is so extensive that the patients may finddifficulty eating, loss of control over their bladder and loss ofspeech. The patients also get easily irritable, and may shout or eventhrow objects to those giving them nursing care. The angry outburstsare facilitated by lack of coordination to perform small actions,such as picking up an object. Despite the fact that the patients inthis stage have little understanding of speech, Braak et al. (2011)say that recognizing those around them is very difficult, or still,impossible. Towards the end of the novel, Alice has reached thisstage, and her family members are taking care of her on her bed.
Borroni, B., Costanzi, C., &Padovani, A. (2010). Genetic susceptibility to behavioral andpsychological symptoms in Alzheimer disease. CurrentAlzheimer Research, 7(2),158-164.
Braak, H., Thal, D. R.,Ghebremedhin, E., & Del Tredici, K. (2011). Stages of thepathologic process in Alzheimer disease: age categories from 1 to 100years. Journalof Neuropathology & Experimental Neurology, 70(11),960-969.
Genova, L. (2009). StillAlice. New York, NY:Gallery Books.
Mace, N. L., & Rabins, P. V.(2011). The36-hour day: A family guide to caring for people who have Alzheimerdisease, related dementias, and memory loss.JHU Press.
Spalletta, G., Musicco, M.,Padovani, A., Perri, R., Fadda, L., Canonico, V., & Rozzini, L.(2010). Neuropsychiatric symptoms and syndromes in a large cohort ofnewly diagnosed, untreated patients with Alzheimer disease. TheAmerican Journal of Geriatric Psychiatry, 18(11),1026-1035.
Second paper: Connections
In the present day America, millions of people are suffering fromAlzheimer’s. At the same time, several fold millions more areclosely related to one or more people suffering from the disease.Therefore, one of the best ways of coping with the disease andmanaging its negative effects on persons and family is learning howto take care of the patients. Several efforts have been put intorevolutionizing the way that the patients are handled and taken careof. Joanne Koenig Coste, in her book, Learning to SpeakAlzheimer’s, provides a practical approach to the mentalprotection of the relatives and nurses providing support to thepatients. In the book, she procedurally describes how to enhancerelationships with the patients and providing care for them in themost effective manner. On the other hand, Elizabeth Cohen, in hernovel The House on Beartown Road: A Memoir of Learning andForgetting, gives an account of a lady taking care of a smallchild who is in the stage of learning new things in the world, andher father, a patient who is gradually forgetting things. This paperpresents connections between the experiences of Elizabeth’s familyand the information presented by Koenig Coste.
Thetenets of habilitation
Coste speaks about a number of tenets of rehabilitation for thepatients. In her book, she describes how the caregivers can use thetenets of habilitation to make easy the work of taking care of thepatients. The first tenet is making the physical environment work. The author says that there are specific ways in which the caregiveralters the environment to improve the quality of life of both thepatient and the care-giver (Coste, 2003, p. 61). He says that thecaregiver has to ensure that they pay close attention to the thingsthat the patient sees. This helps the latter to guide the patientthrough senses such as touch and smell. By doing this, the caregiveris able to understand the patient’s feelings. Additionally, Costeasserts that this helps the family members of the patient tounderstand the world that the patient is living in, and understand anumber of difficult experiences that they are going through. Theseexperiences include gazing into the mirror and not being able tounderstand the person who is looking back at you, being asked to takea seat while you cannot see one and hearing a number of voices thatseem to distract one’s inner peace (Coste, 2003, p.62). While doingthis, the patient is able to consider a number of perceptions as seenby the patient, hence, being able to predict their feelings andactions.
Cohendescribes how the disease has distorted her father’s world. Shesays “…Time, place, people and events all blur and dissemble forhim” (Cohen, 2007, p.4). Given his condition, Cohen describes howher father often gets easily agitated and confused, even at theslightest provocation. Her father is slowly getting used to the factthat he is losing his memory, and feels like it is some kind of“curse”. This means that Cohen has to put herself in her father’sshoes, and understand that the memory loss can be frustrating, andthat it is normal for anyone to react in the way that he does. Bydoing this, Cohen is in line with Coste’s first tenet, that ofunderstanding the patient’s environment and being able to cope upwith the events. By putting herself in her father’s world’sperception, Cohen gets to understand that he needs those around himto understand his feelings and actions. By doing this, both thecaregiver and the patient are able to create a connection, whichhelps Cohen take care of her ailing father.
Oneof the greatest fears of the family members of the disease’ victimsis fear of ending communications with their loved ones. However,Coste, in his second tenet, reassures readers that communication isstill possible, regardless the stage of the patient’s condition(Coste, 2003, p.77). However, there are also a number of side-effectsof the failure by the patients to communicate effectively. The lackof consistent communication with the family members and caregiversalways leads to emotional outbursts, which are facilitated byfrustrations. Given this, Coste advises that the caregivers have tobe in a position to look out for emotions and qualities that arebeing repressed, but get ready to burst at any moment. He furtherexplains, “imagine the anguish of having your ability to talk withloved ones, chat with friends, and exchange greetings with strangersslowly taken away from you” (Coste, 2003, p.78). By this, Costedescribes the anguish of the patients. However, by explaining how hissecond tenet works, Coste re-assures the family members andcaregivers that communication is not totally lost, and there aresolutions to this challenge. He explains that communication is beyondwords, and that words are only part of the communication process.
Cohendescribes how her father was losing speech, and finding it hard tocommunicate with those close to him. She says, “His own speech ispared down now, skeletal, like he has become, moreover, eloquent. Hehimself has begun to speak in poetry.” (Cohen, 2007, p.54).However, Cohen finds solace in the way the way that her father islosing speech. Her father is slowly learning to substitute words,when she cannot find the exact words that he wants to use in aconversation. Just as Coste explains, this is a reassurance for thefamily members of the patients that communication is not all donewith when the patients begin developing related difficulties. Laterin the novel, Cohen says that her father was able to speak to herwith clarity, and even address her by her name. This reflects Coste’ssecond tenet, that communication is not all lost.
Costenotes that the family and friends of the patients have to focus onwhatever skills that remain in the patients (Coste, 2003, p.85).According to him, those close to the patient need not to focus onwhat the patient has lost, instead, focus on supporting the skillsthat they still have left in them. This helps the patients tocompensate any lost abilities and go on with their day-to-dayactivities. One of the skills identified is bathing. According toCoste, a number of problems may crop up when the patient faces theshower. These include perceiving the shower as a first-time ordeal,loss of control when removing clothes fear for the sound of runningwater (Coste, 2003, p.88). As such, the caregiver has to maximizeefforts to instill confidence in the patient, as a way of comfortingthem and helping them cope on well. There are possibilities that thepatients may find it joy in their remaining skills, hence, feel lessdepressed.
Cohen,like all other family members of the patients, was worried about hisdeclining skills. For instance, she says that she feared for hisdeclining driving skills (Cohen, 2007, p.11). This fear made it worsefor his father, who kept on insisting that his driving skills werejust fine. However, with time, he became aware of his situation, andhad to finally give up the wheel. At the same time, Cohen says thatshe became suspicious that his father was losing his cherishedreading skills (Cohen, 2007, p.207). Another important skill that herfather lost was golf playing, which he was very good at when incollege. However, Cohen decided to maximize on her father’sremaining skills. Her father would occasionally pick up an instrumentand perform a duet (Cohen, 2007, p.55). By playing and singing to hisgrandchild and daughter, they were able to laugh together and createa memory. As Coste explains, by brushing off the lost skills andconcentrating on the remaining ones, both the patient and the familyare able to come together and have happy times.
Coste’sbook thus has a number of important tips for patients and families ofthe affected. The tenets describe how the patients can be taken careof in ways that improve their physical and mental wellness. At thesame time, the descriptions have demonstrated that not all is lostwith patients of the disease. Cohen’s novel is a practicalapplication of the tenets described in Coste’s book. Byunderstanding the patient’s condition and taking time to understandhim, her family is brought together in times of sorrow, and they areable to lead a better life.
Cohen, E. (2007). The family on Beartown Road: A memoir of loveand courage. New York, NY: random House Publishing Group.
Coste, J. K. (2003). Learningto speak Alzheimer`s: A groundbreaking approach for everyone dealingwith the disease.Boston: Houghton Mifflin.
Third paper: Website resources
The Alzheimer Association is a non-profit voluntary healthorganization whose aim is to provide support and medical care topatients of the Alzheimer’s disease. The association wasincorporated in 1980, and has been in operation since then, withthree major objectives. The first one is to do away with the diseaseby investing in research. Secondly, the association aims to providemodern health care for the patients and moral b& technicalsupport to the family members of the ill. Thirdly, the association,through promoting brain health, aims to reduce the risk of dementia.The association offers a number of programs and services to thepatients and family members, and has since inception helped improvethe living conditions of more than a million affected people. One ofthe most important resource provided by the association is researcharticles and other publications, which provide important informationthat can be used by the patients and caregivers. This paper reviews anumber of important resources, which can be helpful to the familymembers of the patients.
The website provides this resource for the purposes of helping thefamilies of the patients to look up for books which have importantinformation regarding the disease (alz.org, 2015 A). There are anumber of books that are written by professionals and practitioners,which contains information about almost every important aspect of thedisease and caregiving. Some of the books are audio resources, andhelp the users to cover more chapters in a little time. While some ofthe books are available for free downloading, others need membersubscription and are available through loans from the Association.The users can search for the books using titles through the website’sonline catalogue. Additionally, the website provides guidelines forborrowing the books. The books cover a variety of topics, such afamily caregiving, stages of senior care, understanding the patient’sbehaviors and decision making, amongst many others.
The website provides this video resource to help families of thepatients give better care (alz.org, 2015 B). The videos are producedwith the advice of some of the best practitioners in the field, withthe aim of simplifying the methods and procedures of providinghealthcare to the patients. The videos are available for downloadingfrom the website’s catalogue, while hard copies are available atthe main library. Some of the videos use real-life stories to tellthe experiences of the families. Some of the information documentedincludes giving personalized care to patients at different stages andsafety concerns.
This resource identifies a number of solutions for finding andproviding care in the home (alz.org, 2015 C). The materials areavailable for loan from the Association’s library, while there isan additional option for downloading and purchasing. The in-home careresource has a number of publications by professionals, which cover anumber of the topics on dementia and how it is handled in the homesetting. At the same time, the in-home care resource guides thefamily members on how to adjust the home environment to suit thepatients’ conditions and a skill-building program to help thefamilies assist the patients in the day-to-day activities. There arealso a number of texts that cover home-based care topics such as homehealth aides and choosing the best home care providers.
Nursing home decisions
This is a new resource on the website. It contains a number ofmaterials, which helps the family members in the day-to-daydecision-making process in nursing home placement (alz.org, 2015 D).Similarly, the materials are available at the Association’slibrary, while there are additional options for downloading andpurchasing. The materials help the family members in making importantdecisions such as choosing the health care providers to attend totheir ill, how they can get involved in care home, for instance,creating a relationship between the nurses and them, and how they canassist their loved ones to get used to living in the nursing homes.Some technical decisions are also covered, such as planning andscheduling for the services, and paying for the same.
Openaccess journal articles
Reading research articles and other literature about the disease isone of the best ways of understanding its nature, and how to handleit. Open access is the practice of offering free access to researcharticles over the internet platform. The Alzheimer association’swebsite has this useful resource to help family members of thepatients. The association offers free medical literature in areassuch as general care and family relationships with the affected(alz.org, 2015 E). The family members can use this resource to locatefree information regarding their patient’s condition, differentkinds of medicines and remedies to help improve their health and toincrease their general knowledge of the disease. To make the resourcemore useful and user friendly, the website provides tips and hintsfor accessing the open access services and refining researches tonarrow down to the information that they wish to obtain more easily.
This is also another newly developed resource available in theassociation’s website. The audio resources provide the families ofthe patients with information for giving care and supporting theirloved ones (alz.org, 2015 F). Some of the main materials provided inthis resource are free online courses for various topics on thedisease. These include audio recordings for the basics, such asmemory loss, detection of risk factors and their causes andpatient-caregiver relations. Additionally, there are recordings thatguide the families on how to provide support to patient with otherproblems such as physical disability. The resource also has a link toradio stations that play specific music that is chosen by the user,to help provide a serene environment to the patients. The users mayregister or subscribe to the radio stations, and use theprofessionally selected music while taking care of their loved ones.
According to the website, most families are always on the look forinformation assistive technology to use with people with memory loss(alz.org, 2015 G). Given this, through the assistive technologyresource, they identify a number of materials that can guide thefamily members through identification of the assistive technology.One of the materials identified is the intelligence assistivetechnology applications to dementia care, which guides the familymembers through the current abilities of the existing technology, itslimitations and the future possibilities. The resource also helps thefamily members to identify products that they can use to help thepatients suffering from severe memory loss at home, the availabilityand viability of this assistive technology.
This is also a new resource on the organization’s website.According ot them, this resource helps families which are looking foractivity materials to engage persons with dementia and interact withthem (alz.org, 2015, H). The materials available through thisresource can be obtained by loan from the association’s library,downloaded or purchased. Most of the materials provide informationabout the activities that the families can engage patients who arebetween the early and moderate stages. The material describes anumber of activities that the patients can be engaged in to helpimprove their mental health, physical wellness and interaction. Thereare additional specialized materials for patients suffering fromother complications such as physical impureness, and so on. Theactivities described help the family members and the patients tobuild stronger relationships and strengthen their family bonds, aswell as coping with challenges that come with the complications.
In many families, there is delegation of duties to those responsiblefor taking care of the patients. The website recognizes that thefamilies are often looking for important internet material to helpthose responsible for the patients to improve their caregiving skills(alz.org, 2015 I). This resource lists links that provide theinformation for the caregivers, and each site has a unique andfocused approach to the current, practical and expert advice. Some ofthe websites are the Alzheimer’s Association Publications, whichprovide access to consumer and professional material published by theassociation, Living with Azheimer, a website that providesinformation to caregivers on how to adapt to daily routines and ElderCare Online, which has guidelines for taking care of elderlypatients.
Impacton the family
This is also a new resource on the website. Some of the most commoneffects of the disease on family members are well known, however,there is still need to know more about some complicated impacts offamily, which may have not been sufficiently covered by literature.This resource has links and full texts to aid family members inpersonal research on the issue (alz.org, 2015 J). Some of theimportant information covered is the grief among family members ofthe patients with advanced dementia and experiences of the spouses ofpatients with mild cognitive impairment. At the same time, giventhat, there are some familiar complications that may come along withthe progression of the disease, this resource provides material thatcan help the family members maintain a close relationship with theailing members, and hold the family together.
This resource is a special tool that is published by theassociation’s experts, under the recommendations of researchfindings (alz.org, 2015 K). The resource is to help the familymembers to assess the patient’s dementia and determination of theapproaches to be taken to help them around. The resource, which isavailable in a number of resources, is important when it comes tohelping the patient one-on-one to improve their memory andcommunication. The published recommendations have been used for awhile now, and the positive feedback indicates that the resource isof major significance to the families.
The Association’s website provides a link to the Alzheimer’sAssociation International Conference (alz.org, 2015 K). Thisconference is the world’s leading forum for dementia research. Thefamily members can gain from the conference’ provision of knowledgeabout dementia and its development. Researchers, who have served inthe field of advanced dementia research for several years, developthe content that is provided at the conference. The conference helpsthe family members to deliberate on the best approaches for care,prevention and treatment of other complications that may come alongwith the disease. Moreover, the family members are provided with aplatform for interaction through the conference, which helps them tocome together and share about their experiences.
This is perhaps one of the resources with the most direct impact onthe families of the patients with the disease. The association has ahelp line at 1.80.275.3900, which is a 24/7 toll free call center forproviding reliable and first-hand information to those in need ofassistance (alz.org, 2015 K). Family members can use this toll-freeline to make calls in case of emergencies or to ask for generalinformation regarding the disease. Give that it is on any time of theday or night, the number come in handy when it comes to asking foremergency assistance. At the same time, there are dedicatedspecialists who can give support information about a number ofaspects in home nursing for the patients, such as safety precautionsand trauma recovery.
Financial and legal matters
According to the association, putting financial and legal plans inplace allows the family members to take care of the wishes anddecision of the ill (alz.org, 2015 K). At the same time, this helpsthe family members to work through complex issues that are involvedwith the long term care of the patients. The association provides thefamily members with this important resource, which helps them toprepare themselves in time and to avoid any financial problems thatthey may face as the patients, worsen. The patients are advised onhow to save for the patient’s treatments, how to take care ofhome-based care finances and how to prepare for emergency medicalconditions that may come up. This resource is particularly useful forfamilies that may have financial problems or are not in a position totake care of every financial aspect taking care of Alzheimer’spatients.
It is no doubt that the Alzheimer’s Association is one of the bestin dealing with the disease and its dynamics. The association takescare of all aspects of the disease, including home-based care andwell-being of the affected families. Ranging from books, audioresources, websites, publications, researches, conferences toactivities, amongst many others, the association’s sources providedin their website come in handy for the families of the patients. Itis up to the family members to study the website and choose the bestresources, which they can use to improve their loved ones’condition and maintain a positive relationship with them. At the sametime, the resources can be customized to help the family members copealong with various challenges that they face whilst taking care ofthe ill. While some of the resources have been running on the websitefor quite a while now, the professionals and experts affiliated tothe association are now and again reviewing the dynamics anddeveloping more resources to help the families of the affected.
alz.org. (2015 K). Professionals and researchers. Retrieved on24 June, 2015 from:http://www.alz.org/professionals_and_researchers_14899.asp
alz.org. (2015 E). Open access journals. Retrieved on 24 June,2015 from:http://www.alz.org/library/downloads/OpenAccessJournals_RL2012.pdf
alz.org. (2015 G). Assistive technology. Retrieved on 24 June,2015 from:http://www.alz.org/library/downloads/search_assistivetechnology.pdf
alz.org. (2015 A). Family caregiver books. Retrieved on 24June, 2015 from:http://www.alz.org/library/downloads/search_caregivingbooks.pdf
alz.org. (2015 D). Nursing home decisions. Retrieved on 24June, 2015 from:http://www.alz.org/library/downloads/search_nursinghomedecisions.pdf
alz.org. (2015 B). Family caregiver videos. Retrieved on 24June, 2015 from:http://www.alz.org/library/downloads/search_caregivingvideos.pdf
alz.org. (2015 C). Help homecare. Retrieved on 24 June, 2015from: http://www.alz.org/library/downloads/search_helphomecare.pdf
alz.org. (2015 F). Audio resources. Retrieved on 24 June, 2015from http://www.alz.org/library/downloads/search_audioresources.pdf
alz.org. (2015 H). Activities. Retrieved on 24 June, 2015from: http://www.alz.org/library/downloads/search_activities.pdf
alz.org. (2015 I). Family caregivers. Retrieved on 24 June,2015 from:http://www.alz.org/library/downloads/IncrediblyusefulwebsitesFamilyCaregivers.pdf
alz.org. (2015 J). Impact on family. Retrieved on 24 June,2015 from: http://www.alz.org/library/downloads/jumpstarter_impact_on_the_family.pdf
Fourth paper: Reflection
While conducting the research, I came across a number of sources thathad very useful information about the disease. However, I found somebits information more useful than other information. First, I learntabout the seriousness of the disease and the number of people thatare affected by the disease. I found out that dementia is more commonthan I previously thought, affecting up to millions of people acrossthe world, and hundreds of thousands in America alone. At the sametime, I learnt that people are more likely to develop thecomplication as they age, there are very little young people affectedby the disease. Additionally, I learnt that about 5 in every 100people develop dementia by around age 65, and that by age 80, about20 in every 100 people have some form of dementia.
Atthe same time, I also learnt that dementia sometimes might affectyoung people, although this is very rare. People who develop dementiabelow 65 years are often describe as “younger people with dementia”by health professionals. However, there are other terms that are usedto describe these patients, such as “working-age dementia” andyoung-onset dementia”. However, at the same time, I learnt that thesymptoms of the disease in the young people are the same as those inthe old people. In the United States alone, there are tens ofthousands of people classified under this. I also learnt about anumber of variations of the disease. I was interested in two majortypes, which are vascular dementia and dementia with lewy bodies, asthese are the two most commonly described ones.
Ialso found information about tips for communicating with a personwith the disease very useful. This is because many people, or atleast non-professionals, do not naturally know how to communicatewith the people living with dementia. However, it is possible tolearn how to communicate with the patients, as it only involvestaking time to understand the complication and the personsthemselves. I also learnt that good communication skills enhanceone’s ability to handle difficult situations, which may lead to theworsening of the patients’ condition. As such, there are a numberof things that I learnt from conducting the research, as pertains tocommunication skills.
First,there is need for the caregiver to set a positive mood forinteraction. This is because a person’s attitude and body languagehelp convey feelings and though snore effectively. I learn thisinformation by reading novels such as Still Alice and Learning toSpeak Alzheimer’s. Secondly, some sources taught me that there isneed to get the patient’s attention. This is by limitingdistractions and noises that may disrupt the communication process.Thirdly, I learnt from authors from different novels speaking aboutAlzheimer’s disease that when communicating with the patients, onehas to keep in mind that they are no longer in the normal mentalstatus that they were in, and as such, one has to ask simple andanswerable questions to make the patients feel comfortableconversing. This information was useful for the purposes of takingcare of patients whose communication skills may have been eroded bythe disease.
It is quite challenging to pick out the least useful information thatI obtained from this study. However, I rate the value of informationin terms of what I had already learnt and how helpful the informationcould be at my level of knowledge. As such, some of the sources thatprovided the most basic information, which I had already knowledgeof, were quite unhelpful. For instance, I had already learnt that thepatients get to forget things that they have learnt. Additionally, Icame across information that showed that the patients find it hard tolearn new things, and that they may from time to time forget, wherethey had put their things. At the same time, some sources providedinformation that the family members should not think that there isanything wrong with the patients. This kind of information is part ofthe basics that are introduced in the early stages of the course, andas such, was not as useful as the rest of information when it came tothe research.
Atthe same time, I came across some other information, which was tooadvanced or complicated for a student of my level. This includedresearch articles that looked into the medical aspects of the brain’sdevelopment as the disease progresses. Doctors and research expertswho go deep into the issue, often conducting high profile researchersand documenting their findings in professional publications andmedical books, compile this information. There is no doubt that thisinformation is very useful in the field, however, in the scope of myresearch studies, its complexity and detail were of little use.Regardless, the information may be useful as I advance my studies, asthe details are important in characterizing the physicalmanifestations of the disease.
I came across a number of books, which I would straight awayrecommend to the patient and family members of the affected. Perhapsthe most important of these books is Still Alice by LisaGenova. The book is a novel about a professor who is diagnosed withthe disease at 50 years, and how the disease progresses as she learnsto cope with it. The book has also been adapted into a movie, whichwas highly successful. The patients and family members alike get tounderstand how to deal with the disease, how to get used to changingenvironment and relationship, and how the patients may be taken careof in the best way possible. I also highly recommend critics ashighly accurate and useful have described this book as it.
Iwould also recommend the book Learning to Speak Alzheimer’sby Joane Koenig Coste. The author divides the book into sections,which can be useful to both the patient and the family members. Forinstance, one of the most interesting part of the book is the fivetenets of habilitation, which describe how the family members maytake care of their loved one by using the author’s recommendationsand guidelines. At the same time, the book uses real life experiencesfrom people who have been taking care of their loved ones from thepast, and how successful the methods they employed have been.
The final book that I would recommend from my research is the Houseon Beartown by Elizabeth Cohen. This book narrates the story of awoman living with her child and ailing father. While she is busyteaching her small child new things, she is taking care of her fatherwho is gradually forgetting what he knew from the past. The book is astrong emotional and technical peace, which can be used by the familymembers of the affected to improve their mutual relationships and atthe same time, guide them through the hard times they areexperiencing.
I plan to take my studies to the next level, learn more about thedisease, the patients and family members. As such, the things that Ihave learnt in this course’ research will be useful to me in anumber of ways, for instance, I will be able to handle any troublingbehavior from the patients who I may come across. This is becausesome of the greatest challenges with caring for the patients withmemory lapse is that their general personality and behavior becomesunpredictable. The patients get easily irritated, and some may bedangerous to both themselves and those around them. However, what Ihave learnt from the research papers, books and novels in this studywould help me meet the challenges by being creative, flexible andpatient.
At the same time, the information learnt from his study would help meadvise others on how to take care of their patients. This is becauseI take this learning opportunity as a chance of getting to understandthe disease’ dynamics and challenges, and as such, places me on agood position to advise others on how to conduct themselves whiletaking care of patients. At the same time, the novels have opened meup to the experiences of many people across the world, and as such, Iwill use the information to help others suffering by being effectedand affected by the disease in the future.