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Anger and Forgiveness"Are You There Alone?"10 Good Questions about Life and DeathA Casebook of Ethical Challenges in NeuropsychologyA Companion to BioethicsA Companion to BioethicsA Companion to GenethicsA Companion to GenethicsA Companion to Muslim EthicsA Cooperative SpeciesA Critique of the Moral Defense of VegetarianismA Decent LifeA Delicate BalanceA Fragile LifeA Life for a LifeA Life-Centered Approach to BioethicsA Matter of SecurityA Mirror Is for ReflectionA Mirror Is for ReflectionA Natural History of Human MoralityA Philosophical DiseaseA Practical Guide to Clinical Ethics ConsultingA Question of TrustA Sentimentalist Theory of the MindA Short Stay in SwitzerlandA Tapestry of ValuesA Very Bad WizardA World Without ValuesAction and ResponsibilityAction Theory, Rationality and CompulsionActs of ConscienceAddiction and ResponsibilityAddiction NeuroethicsAdvance Directives in Mental HealthAfter HarmAftermathAgainst AutonomyAgainst BioethicsAgainst HealthAgainst MarriageAgainst 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Controversies in Values and ScienceCutting to the CoreCyborg CitizenDamaged IdentitiesDeaf Identities in the MakingDeath Is That Man Taking NamesDebating ProcreationDebating Same-Sex MarriageDecision Making, Personhood and DementiaDecoding the Ethics CodeDefining DifferenceDefining Right and Wrong in Brain ScienceDefining the Beginning and End of LifeDelusions of GenderDementiaDemocracy in What State?Demons of the Modern WorldDescriptions and PrescriptionsDesert and VirtueDesire, Practical Reason, and the GoodDestructive Trends in Mental HealthDeveloping the VirtuesDid My Neurons Make Me Do It?Difference and IdentityDigital HemlockDigital SoulDignityDignityDisability BioethicsDisability, Difference, DiscriminationDiscrimination against the Mentally IllDisordered Personalities and CrimeDisorders of VolitionDisorientation and Moral LifeDivided Minds and Successive SelvesDoes Feminism Discriminate against Men?Does Torture Work?Doing HarmDouble Standards in Medical Research in Developing CountriesDown GirlDrugs and JusticeDuty and the BeastDworkin and His CriticsDying in the Twenty-First CenturyEarly WarningEconomics and Youth ViolenceEmbodied RhetoricsEmerging Conceptual, Ethical and Policy Issues in BionanotechnologyEmotional ReasonEmotions in the Moral LifeEmotions in the Moral LifeEmpathyEmpathy and Moral DevelopmentEmpathy and MoralityEmpirical Ethics in PsychiatryEncountering NatureEncountering the Sacred in PsychotherapyEngendering International HealthEnhancing EvolutionEnhancing Human CapacitiesEnoughEros and the GoodErotic InnocenceErotic MoralityEssays on Derek Parfit's On What MattersEssays on Free Will and Moral ResponsibilityEthical Choices in Contemporary MedicineEthical Conflicts in PsychologyEthical Dilemmas in PediatricsEthical Issues in Behavioral ResearchEthical Issues in Dementia CareEthical Issues in Forensic Mental Health ResearchEthical Issues in the New GeneticsEthical LifeEthical Reasoning for Mental Health ProfessionalsEthical TheoryEthical WillsEthically Challenged ProfessionsEthicsEthicsEthicsEthics and AnimalsEthics and ScienceEthics and the A PrioriEthics and the Discovery of the UnconsciousEthics and the Metaphysics of MedicineEthics at the CinemaEthics at the End of LifeEthics Beyond the LimitsEthics Case Book of the American Psychoanalytic AssociationEthics Done RightEthics ExpertiseEthics for EveryoneEthics for PsychologistsEthics for the New MillenniumEthics in CyberspaceEthics in Everyday PlacesEthics in Health CareEthics In Health Services ManagementEthics in Mental Health ResearchEthics in PracticeEthics in PsychiatryEthics in PsychologyEthics in Psychotherapy and CounselingEthics of PsychiatryEthics without OntologyEthics, Culture, and PsychiatryEthics, Sexual Orientation, and Choices about ChildrenEvaluating the Science and Ethics of Research on HumansEvilEvilEvil GenesEvil in Modern ThoughtEvil in Modern ThoughtEvolution, Gender, and RapeEvolutionary Ethics and Contemporary BiologyEvolutionary Psychology and ViolenceEvolved MoralityExperiments in EthicsExploding the Gene MythExploiting ChildhoodFacing Human SufferingFact and ValueFacts and ValuesFaking ItFalse-Memory Creation in Children and AdultsFat ShameFatal FreedomFellow CreaturesFellow-Feeling and the Moral LifeFeminism and Its DiscontentsFeminist Ethics and Social and Political PhilosophyFeminist TheoryFinal ExamFirst Do No HarmFirst, Do No HarmFlashpointFlesh WoundsForced to CareForgivenessForgivenessForgiveness and LoveForgiveness and ReconciliationForgiveness and RetributionForgiveness is Really StrangeFoucault and the Government of DisabilityFoundational Issues in Human Brain MappingFoundations of Forensic Mental Health AssessmentFree WillFree Will And Moral ResponsibilityFree Will and Reactive AttitudesFree Will, Agency, and Meaning in LifeFree?Freedom and ValueFreedom vs. InterventionFriendshipFrom Darwin to HitlerFrom Disgust to HumanityFrom Enlightenment to ReceptivityFrom Morality to Mental HealthFrom Silence to 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Posthuman FutureOut of EdenOut of Its MindOut of the ShadowsOverdosed AmericaOxford Handbook of Psychiatric EthicsOxford Studies in Normative EthicsOxford Studies in Normative Ethics, Volume 7Oxford Textbook of Philosophy of PsychiatryPassionate DeliberationPatient Autonomy and the Ethics of ResponsibilityPC, M.D.Perfecting VirtuePersonal AutonomyPersonal Autonomy in SocietyPersonal Identity and EthicsPersonalities on the PlatePersonhood and Health CarePersons, Humanity, and the Definition of DeathPerspectives On Health And Human RightsPharmaceutical FreedomPharmacracyPharmageddonPhilosophy and This Actual WorldPhilosophy of BiologyPhilosophy of Technology: The Technological ConditionPhysician-Assisted DyingPicturing DisabilityPilgrim at Tinker CreekPlaying God?Playing God?Political EmotionsPornlandPowerful MedicinesPractical Autonomy and BioethicsPractical EthicsPractical Ethics for PsychologistsPractical RulesPragmatic BioethicsPragmatic BioethicsPragmatic NeuroethicsPraise and BlamePreferences and Well-BeingPrimates and PhilosophersPro-Life, Pro-ChoiceProcreation and ParenthoodProfits Before People?Progress in BioethicsProperty in the BodyProzac As a Way of LifeProzac on the CouchPsychiatric Aspects of Justification, Excuse and Mitigation in Anglo-American Criminal Law Psychiatric EthicsPsychiatry and EmpirePsychological Concepts and Biological PsychiatryPsychology and Consumer CulturePsychology and LawPsychotropic Drug Prescriber's Survival GuidePublic Health LawPublic Health Law and EthicsPublic PhilosophyPunishing the Mentally IllPunishmentPursuits of WisdomPutting Morality Back Into PoliticsPutting on VirtueQuality of Life and Human DifferenceRaceRadical HopeRadical VirtuesRape Is RapeRe-creating MedicineRe-Engineering Philosophy for Limited BeingsReason's GriefReasonably ViciousReckoning With HomelessnessReconceiving Medical EthicsRecovery from SchizophreniaRedefining RapeRedesigning HumansReducing the Stigma of Mental IllnessReflections on Ethics and 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Troublesome ChildTechnology and the Good Life?TestimonyText and Materials on International Human RightsThe Moral Psychology of AngerThe Age of CulpabilityThe Age of CulpabilityThe Aims of Higher EducationThe Almost MoonThe Altruistic BrainThe American Psychiatric Publishing Textbook of Forensic PsychiatryThe Animal ManifestoThe Animals' AgendaThe Art of LivingThe Autonomy of MoralityThe Beloved SelfThe Best Things in LifeThe Big FixThe Bioethics ReaderThe Biology and Psychology of Moral AgencyThe Blackwell Guide to Medical EthicsThe Body SilentThe BondThe Book of LifeThe Burden of SympathyThe Cambridge Companion to Virtue EthicsThe Cambridge Companion to Virtue EthicsThe Cambridge Textbook of BioethicsThe Case against Assisted SuicideThe Case Against PerfectionThe Case Against PunishmentThe Case for PerfectionThe Case of Terri SchiavoThe Challenge of Human RightsThe Character GapThe Code for Global EthicsThe Colonization Of Psychic SpaceThe Commercialization of Intimate LifeThe Common 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How Much?Why Some Things Should Not Be for SaleWisdom, Intuition and EthicsWithout ConscienceWomen and Borderline Personality DisorderWomen and MadnessWondergenesWould You Kill the Fat Man?Wrestling with Behavioral GeneticsWriting About PatientsYou Must Be DreamingYour Genetic DestinyYour Inner FishYouth Offending and Youth Justice Yuck!
How We Think About Dementia is a book directed at professionals or people who are familiar with research and medical terminology. The language is fairly technical and likely needs a bit of translation for the layperson/non-professional. There are, however, areas of the book that make sense for any person with even minor experience with dementia or other health conditions. I particularly like Hughes’ focus on compassionate care and the suggestion that dementia be called “acquired diffuse neurocognitive dysfunction” (2014, p. 11). This encompasses the many causes of dementia.
People with dementia require multiple forms of care: “bodily care, psychological [care], emotional [care] and spiritual care” (Hughes, 2014, p. 32). I would include psychosocial care in that list due to the alienation of friendships when a person has dementia. Friends and family members may not know how to interact or react to the changes in memory and behaviors and, thus, keep their distance. This also isolates the caregiver.
All of life has significance, regardless of a person’s abilities or inabilities. Each person has the right to care provided with respect, kindness, and comassion, though it is often not given in that manner. As Hughes states “what might we really want given our changing expectations of life?....the experience of authentic love” (2014, p. 34). In the earliest stage of dementia, it is common to dismiss the symptoms as of little significance. Misplacing keys or losing words – being unable to recall the word needed in a sentence – is a common occurrence as we age and are due to a variety of normal environmental conditions, such as dietary intake, alcohol consumption, exposure to pollutions, and trauma, to name a few. Sadly, many doctors perpetuate the dismissal of symptoms. “This attitude can reasonably be called ageist inasmuch as it denies help to people simply on the basis of their age where they would receive help if they were younger. It may also reflect therapeutic nihilism, that is, the belief that nothing can be done and therefore nothing should be attempted and the person should be encouraged to just accept the facts of life, which in this case are the facts of aging” (Hughes, 2014, p. 39).
Hughes discusses personhood in terms of who the person is before the onset of dementia and that many of the roles we have in life and behaviors continue; a person does not stop being a parent even if they cannot recall they have children, they do not stop being a wife or husband even if they do not recognize their spouse. Those connections follow a person throughout the condition. Further, just because the person no longer communicates in the way he or she previously did, this does not mean his or her thought processes, feelings, understanding of your communication, etcetera, have stopped. Quite the opposite. The brain is still working, just not in the same way as it did before.
Determining capacity is described well in Chapter 6. As much as possible, the person with dementia should be allowed to make their own decisions. It becomes concerning when the person cannot make a reasonable decision based on all of the facts. If they believe they are safe on their own, but in reality are not, this must initiate a review of the person’s capacity. Once the review is done, caregivers or human service organizations may be relied upon for identifying next best steps.
Hughes identifies ethical concerns through the use of case studies. Within these case studies, circumstances are shared that bring to light challenges that may be encountered by caregivers. Not only are the case studies a review of ethical considerations for a person, they also incorporate the considerations of capacity. As discussed in Chapter 6 of the book, it is necessary to give the person input and control of their medical treatment decisions if possible. It is discussed that the decisions made by caregivers (professional or personal/family) should be done in the best interest of the person with dementia. However, this process can take considerable time. The time can be a good thing, meaning the decision is well-reviewed by a team of people. On the other hand, it can be a bad thing, such as when a person’s health is declining and a slow decision process allows further decline.
Towards the end of the book, Hughes writes about the arts and looking for joy along the journey. This does not mean dementia is a joyful process, but there are moments in the journey that can be joyful, and joy can be intentionally created through activities such as artwork and interactions with others. It is these moments that sustain the person with dementia and their loved ones through more difficult times, in my opinion.
I chose to review this book due to my mother’s passing from dementia. While I learned a great deal about dementia through my mother’s dementia journey, I know there is far more to learn, far more to share with others in the hopes of making a difference in the lives of those who will take this journey in the future. Once a caregiver is on the path of providing for a person with dementia, there is little time to do research and seek out support opportunities. This means the professionals must offer the support through human service agencies. A great challenge is often seen in the primary caregiver: the caregiver is unwilling to accept help or share in the caring because he or she knows the habits and expectations of the person with dementia. There is fear that another person won’t do something correctly, causing great upheaval and difficult behaviors in the person with dementia. Even though the caregiver is exhausted and need rest to rejuvenate, he or she cannot give up control. By understanding early on in the journey what opportunities are available and when services can and should be sought, this caregiver burden can be reduced.
It takes a team of services to provide quality care, and by quality I mean meeting a person’s basic needs of safety, shelter, food, activity, regular bathing, regular healthcare, and social interactions. Services, ethical considerations, methods and barriers to care are covered well in the book from a professional perspective. Portions of the book are related to the laws and provisions in England; none-the-less, the majority of the book provides a sense of direction for professionals (medical doctors, psychologists, psychiatric nurses, occupational therapists, etcetera) in caring for a patient with dementia.
© 2015 Lynne Trevisan
Lynne Trevisan, D. C., Assistant Professor, College of Health, Human Services, and Sciences, Ashford University