Handbook on Ageing with Disability


I: Framing the Ageing with Disability ExperienceUnderstanding Ageing with DisabilityFoundational Concepts of Ageing with DisabilityHow is the Ageing with Disability Population Defined?How Big is the Ageing with Disability Population?Why is Ageing with Disability a New Phenomenon?How is Ageing with Disability Different Than Ageing Into Disability?How Do Social Models of Disability Apply to Persons Ageing with Disability?How Do Theories of Ageing Apply to Persons with Early and Mid-Life Disability Onset?What is the Status of Scholarship Related to Ageing with Disability?Why is it Important to Bridge the Fields of Ageing and Disability?ConclusionReferencesRethinking the Concept of Successful Ageing: A Disability Studies ApproachIntroductionSuccessful AgeingDisability Policies and the Normalisation PrincipleThe Scandinavian Model of Successful AgeingA Different Kind of Successful AgeingBeing Enabled to Engage in Activities that Require a High Level of FunctioningThe Challenge of DementiaConclusionReferencesAgeing with Lifelong Disability: Individual Meanings and Experiences Over TimeIntroductionLife Course PerspectiveLife Course Perspective on Ageing Avith Lifelong DisabilityLife StoriesLife Story Research with Adults with Lifelong DisabilityIndividual Meanings and Experiences of Disability over TimeConclusionReferencesIntegrating Critical Disability Studies and Critical Gerontology to Explore the Complexities of Ageing with DisabilitiesIntroductionWhat is Critical Gerontology?What is Critical Disability Studies?The Parallel Paths of Critical Gerontology and Critical Disability Studies‘As We Get Older, We Get Poorer’: Corbett O’Toole’s StoryIntegrating Critical Gerontology and Critical Disability StudiesNeoliberal Capitalism and Political EconomyAgeism, Ableism, and Compulsory SystemsCommodificationConclusionReferencesSocial and Environmental Determinants of the Health of People with DisabilitiesIntroductionBackground: Social and Environmental Determinants of HealthGrowing Up With a DisabilityThe Living Conditions of Working Age Adults with a Disability: Poverty and Low Socio-economic PositionEmploymentHousing ConditionsExposure to ViolenceDiscriminationConclusionFuture Research PrioritiesExpand the range of social determinants and settings studiedIncrease Our Understanding of Vulnerability/ResilienceIncrease Our Understanding of IntersectionalityImplications for Policy and PracticeReferencesReducing the Shared Burden of Chronic Conditions Among Persons Ageing with Disability and Older Adults in the United States Through Bridging Ageing and DisabilityChanging Demographics of Ageing and DisabilityClarifying Understanding of Ageing with Disability and Chronic ConditionsAge-Related Chronic ConditionsMultiple Chronic ConditionsUnderstanding the Nexus of Ageing and DisabilityThe Shared Burden of Chronic ConditionsThe Growing Demand for More Evidence-Based Practices (EBP) to Promote Health and Reduce the Shared Burden of Chronic Conditions in the U.S.Closing the EBP Needs and Supply Gap by Bridging Ageing and Disability Research and PracticeConclusion - Reducing the Shared Burden of Chronic ConditionsReferencesSegmenting Ageing and Disability Policy: Ethical ConcernsIntroduction: Ageing and DisabilityStandard Policy ApproachThe Deep Consilience of Ageing and DisabilityThe standard policy approach: ethical concernsThe Ethical Requirements of Good Social PolicyEthically Adverse Impacts of the Standard ApproachConclusionReferencesII: Diverse Experiences of Ageing with DisabilityUnderstanding the Experience of Growing Older with Cerebral PalsyIntroductionOverview of Cerebral PalsyAgeing with Disability (Congenital or Early-Onset)Methods of Recruitment, Data Collection, and Analysis at a GlanceTheoretical PerspectiveDefying the Odds: Growing Up and Growing Older with Cerebral PalsyThe ‘defying the odds’ NarrativeGrowing up with Cerebral PalsyThe Appearance of the Disordered BodyLabelling the Disordered BodyThe Normalisation of Physical ImpairmentStruggling to Fit InGrowing Older with Cerebral PalsyMaking a Place for Themselves in the WorldLiving on Their OwnDisruptions in Self-Regulation of the Disordered BodyAbandonment of the Ageing Disordered BodyInterpretationImplications for Rehabilitation PracticeNotesReferencesAcknowledgementsAgeing with Deaf blindnessIntroductionBackground LiteratureA Hidden Population Challenging the Congenital: Acquired DivideMultiple Changes, Constant AdjustmentUnmet Needs and the Misrecognition of DeafblindnessNext Steps and New DirectionsReferencesAcknowledgmentAgeing, Serious Mental Illness, and Perceptions of Self Over the Life CourseIntroductionLater Life and Serious Mental IilnesssCognitive FactorsMorbidity and MortalitySocial DisabilityThe Impact of Policies on IndividualsMental Health Recovery and Positive OutcomesTreatment FactorsSocial FactorsNarrative UnderstandingStigma: A Modifiable, Disabling FactorThe Necessity of Social InclusionHousingWorkThe Healing Potential of Social RelationshipsPeer supportConclusionReferencesAgeing and Brain Injury Long Term Outcomes in AdultsIntroductionTBI What Is It?Long-term Effects of TBINeuroendocrine DisturbancesReproductive Hormones and HealthNeurological OutcomesMusculoskeletal ChangesMild TBIChronic Traumatic EncephalopathyKey IssuesSex DifferencesTBI as a Chronic ConditionCommunity IntegrationTraumatic Brain Injury Guidelines and RehabilitationCaregivers and TBIConclusionReferencesAgeing with Multiple SclerosisIntroductionBrief Overview of MSExperiences and Challenges of Ageing with MSMobility and FallsNeed for AssistanceWorries about InstitutionalisationSupports and Strategies for Ageing-in-placeTangible SupportsMaintaining Purpose, Participation, and Quality of LifeActively Engaging in Health Promoting BehavioursConclusionReferencesAgeing when Being AutisticThe Case of a 73-Year-Old Autistic WomanAgeing When Being AutisticGeneral Well-being/OutcomesASC CharacteristicsPhysical and Mental HealthBrain and CognitionConclusionNotesReferencesIII: Forwarding Social InclusionCommunity Participation and Engagement for Persons Ageing with Physical DisabilityIntroductionUnderstanding Changes in Community Participation Among PAwPDThe Role of Personal Factors and Health in Community ParticipationThe Role of Environmental Factors in Community ParticipationThe Role of Supports and Services in Community ParticipationConclusionReferencesDesign for One is Design for All: The Past, Present, and Future of Universal Design as a Strategy for Ageing-in-Place with DisabilityIntroduction: Environment, Ageing, and DisabilityFrom Design for One to Design for All and Back Again: The Evolution of Universal Design to Support Ageing-in-Place Avith DisabilityDesign for One: Specialised Design for Ageing OR DisabilityAssistive TechnologyAccessible DesignBenefits of Specialised DesignLimitations of Specialised DesignDesign for All: Universal Design for Ageing and DisabilityPrinciples of Universal DesignBenefits ofUDLimitations ofUDDesign for One: Ability-Based Design for People Ageing with DisabilityBenefits ofABDLimitations of ABDDesign for One is Design for all: The Future of Design for Ageing-in-Place with DisabilityPost-Script: The Past, Present and Future of Universal Design for Ageing-in-Place with DisabilityNoteReferencesSupport for Decision-Making as People Age With a Cognitive ImpairmentIntroductionPrior ResearchBackground Literature and InquiriesSome TaxonomiesIndividual Rights and Relational AutonomyKey IssuesSupported Decision-making Law Reform Is Just a Start?Delivering Meaningful Support for Decision-making Is ChallengingSupport for Decision-making in Dementia Care is Especially ChallengingConclusionReferencesInternalised Ageism and the User Gaze in Eldercare: Identifying New Horizons of Possibilities Through the use of a Disability LensIntroductionA Framework for Analysing Support for Older PeopleDataExperiences of Nursing Homes: Internal ComparisonsLiving at HomeHome Care Recipients: Frustrated, but not DissatisfiedPersonal Assistance in Comparison with EldercareDiscussion: Challenging the Internalised Ageism among Care UsersReferencesCreating Age and Disability Friendly Communities to Support Healthy and Meaningful AgeingGrowing Importance of an Inclusive Social Planning for Older People with a Lifelong DisabilityPrerequisites for an Integrated Inclusive Social Planning for Old Age: Guidelines to Assure the Cooperation of Funding Authorities and Service ProvidersResponsible Lead Management Role of the MunicipalityShared Principles of an Inclusive PlanningAreas of Integrated Social Planning for Older People with and without a DisabilityScope of PlanningPlanning AreasStrategic Elements and a Process Model for Integrated Social PlanningStrategic Planning ElementsPlanning ProcessDesigning ParticipationKey IssuesConclusionNoteReferencesIV: Intellectual Disability as a Case ExampleThe Emergence of Ageing with Long-Term Disability PopulationsIntroductionThe Health and Ageing EraCaregivingDementiaWork and RetirementEnd of LifeCrossing SystemsConclusionReferencesHealth and Wellness Among Persons Ageing with Intellectual DisabilityIntroductionAgeing and HealthSocial Determinants of HealthA Social Determinants of Health FrameworkSocial Determinants of Health for Older Adults with an Intellectual DisabilityIreland: A Case StudyLiving CircumstancesRelationships and Social SupportCommunity EngagementSocial Determinants Associated with Self/Proxy Rated HealthKey IssuesDiscussionConclusionNotesReferencesRetirement for People with Intellectual Disability: Policy, Pitfalls, and Promising PracticesIntroductionMainstream Approaches to RetirementRetiring from a Distinctive and Disadvantaged PositionPerspectives of Older People with Intellectual Disabilities about RetirementExperiences of Retirement of Older People with Intellectual DisabilitiesPushed Towards RetirementEngagement and Participation in RetirementService Models to Support RetirementModels for Retirement Services and Outcomes SoughtIndividualised Approaches to Support in RetirementProgress on Policy and Laying the Foundations for Retirement into the FutureLast WordsReferencesFamily Caregiving for Adults Ageing with Intellectual and Developmental DisabilitiesIntroductionIssues for Family CaregiversFinancial OutcomesHealth and Social OutcomesFamily Caregiving in Later LifeCompound CaregivingReciprocity and MeaningNon-Traditional CaregiversSupports for Long-Term Caregivers Unmet Formal Service and Supports NeedsRecognition of Family Support NeedsConclusionReferencesAcknowledgmentsAgeing with Intellectual Disability In Sweden: Participation and Self DeterminationIntroductionOlder Adults with Intellectual Disability in SwedenCurrent ResearchParticipation and Self-DeterminationOlder Adult Perspectives of Ageing and ParticipationStaff and Managers’ Perspectives Concerning Ageing and ParticipationThe Importance of Housing for Participation and Self-DeterminationParticipation and Self-Determination: The Importance of InteractionSelf-DeterminationPaternalismSelf-Determination between the ExtremesConclusionNoteReferencesTowards Untangling the Ageing Riddle in People with Intellectual Disabilities: An Overview of Research on Frailty and Its ConsequencesFrailty as a Measure of Ageing in the General PopulationFrailty as a Measure of Ageing in People with Intellectual DisabilitiesIs It Feasible to Measure Frailty in Older People with ID and How Frail Are People with ID Compared to People from the General Population?Does Frailty Predict Deterioration of Health and Independence?Which Characteristics Are Associated with Frailty?Reflection: Understanding the Mechanisms of Frailty in People with IDRecommendations for Research and Clinical PracticeConclusionReferencesHow to Avoid Early Frailty in People with Intellectual Disabilities?IntroductionWhy Research on Frailty?Development of a Knowledge BaseFrailty and Intellectual DisabilityA Pyramid of Accumulating Health ProblemsGenetic Factors, Syndromes, Congenital Motor and Sensory DisabilitiesPsychotropic Drug UseMissed DiagnosesChronically Disturbed Circadian Rest-Activity RhythmUnhealthy Lifestyle, Low FitnessDiabetes and Cardiovascular DiseaseDepression and Anxiety, Life EventsMultimorbidity and PolypharmacyMultimorbidityPolypharmacySo, How to Avoid or Postpone Frailty?ReferencesDementia Care for Persons Ageing with Intellectual Disability: Developing Non-Pharmacological Strategies for SupportOverviewDiscussion of LiteratureJimLucyStudy ImplicationsKey IssuesConclusionReferencesEnd-of-Life Care for Adults With Intellectual DisabilitiesIntroductionCase ExampleBroad OverviewTransparency and Planning for End-of-Life CareHealthcare Decision Making at the End of LifeHealthcare at the End of LifeHospice Care at the End of LifeCommunity Agency Residence Care at the End of LifeKey IssuesConclusionResearchPolicyPracticeReferencesV: Policies to Support Persons Ageing with DisabilityResponding to Changing Workforce Realities: One Profession’s ExperienceIntroductionStaffing Intellectual Disability ServicesChanging DemographicsPolicyRe-tasking a ProfessionPerson-Centeredness and Person-Centred PlanningSupporting Individuals with an Intellectual Disability’s Health, Well-Being, and Social CareDeveloping Nursing Capacity, Capability, and Professional LeadershipImproving the Experience and Outcomes for Individuals with an Intellectual DisabilityChallenge in Providing ServiceConclusionReferencesAgeing in Place in Group Homes: An Australian ContextIntroductionPeople Ageing with Intellectual Disabilities in Group HomesAged Care and Disability Policies to Support Ageing in PlaceComplexity of Ageing in Place in Group HomesThe NDIS Promising Policy and Emerging IssuesRealities of Purchasing Additional Support to Age in PlaceMaking a Decision to Transition from Disability to Aged CarePotential Impact of Pressures on Disability Service Providers from Individualised FundingConclusionNoteReferencesSupport, Service Policies, and Programs For Persons Ageing with Disabilities in KoreaIntroductionThe Concept of People Ageing with DisabilitiesIncome, Health, and Changes to One-Person Households for Persons Ageing with DisabilitiesKey IssuesSeparate Policies for People with Disabilities and Older Adults and Difficulties in Linking Policies: A Focus on Long-Term CareAbsence of Community ServicesAbsence of Various Residential Service ModelsDiscussionLink between Policies for Disabilities and Older AdultsPersonal Assistance Services and Long-Term Care InsuranceA Community service model for active ageingCommunity Service Development for People Ageing with DisabilitiesProviding Various Residential Services within the CommunityConclusionReferencesTrends in Integrating Long-Term Services and Supports in the United StatesIntroductionSegmentation of Ageing and Disability LTSSLong-term Services and Supports in the U.S.The Shift from Institutional to Home and Community-Based CareProgram Integration Initiatives that Hold Promise for Persons Ageing with DisabilityAgeing and Disability Resource CentersMoney Follows the Person (MFP) & Nursing Home Transition ProgramsLifespan Respite Care Program (LRCP)Alzheimer’s Disease Programs Initiative (ADPI)From Integrated LTSS to Inclusive CommunitiesNotesReferencesAccess to Assistive Technology in CanadaIntroductionUniversality of Assistive TechnologyLegislative and Policy Context Relevant to Ageing, Disability, and Assistive Technology AccessHealth SystemsSocial CareDisability-Related Legislation and PolicyAssistive Technology-Related Legislation and PolicyEnhancing Equitable Access to Assistive TechnologyOverview of Assistive Technology SystemAccess Issues for Seniors and Persons with DisabilitiesBridging Ageing and Disability to Enhance Equitable Access to Assistive TechnologyKey IssuesConclusionNotesReferencesAgeing with Disability: Using Financial Mechanisms to Facilitate Intersectoral CollaborationIntroductionWhat Do We KnoAV About Using Financing Mechanisms to Facilitate Intersectoral Collaboration?Earmarked FundingDelegated FinancingJoint BudgetingUsing Economic Arguments to Strengthen the Case for Enhanced Intersectoral WorkingOvercoming Barriers and Seizing the OpportunityConclusionReferencesEnabling a Good Old Age for People Ageing with Disability: Reflections on ProgressHow Far Have We ComeEmerging and Growing Sub-Groups of People Ageing with DisabilitiesThe Research Landscape and Where to Next?References
 
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