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Tag Archives: Lived Experience
Experiences of the Challenges Faced by People Living With Dementia in the UK (Alzheimer’s Society)
Summary The following report covers results from the latest Alzheimer’s Society’s survey of the views and experiences of 966 people with dementia, 500 unpaid carers and 2,356 adults aged 16-75 in the United Kingdom. The stark costs of the “dementia tax” are exposed. … Continue reading →
Posted in Alzheimer's Society, Charitable Bodies, Community Care, For Carers (mostly), For Doctors (mostly), For Nurses and Therapists (mostly), For Researchers (mostly), For Social Workers (mostly), In the News, Management of Condition, Mental Health, Models of Dementia Care, National, Person-Centred Care, Quick Insights, Standards, Statistics, UK, Universal Interest
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Tagged Adult Social Care, Adult Social Care Funding, Adult Social Care in England, Adult Social Care Services, Ageing and Dementia, Ageing and Society, Ageing Policy in the UK, Ageing Population, Alzheimer's Society’s Fix Dementia Care Campaign, Annual Survey of Hours and Earnings, Barker Commission, Care Costs: Cap and Means Test, Care Funding, Care Home Costs, Care Home Fees, Care Tax (So-Called Dementia Tax), Carers, Carers’ Health and Wellbeing, Caring and Family Finances, Commission on the Future of Health and Social Care in England (Barker Commission), Cost of Social Care for Older People, Council-Funded Services, Dementia Care: Dementia Tax (Estimated), Dementia Care: NHS Care, Dementia Care: Paid For By Councils, Dementia Care: Paid For By Individual, Dementia Programme Board, Dementia Statements, Dementia Tax, Dementia Tax (Alzheimer's Society), Dimensions of Inequity, Eligibility for Care, Fees for Accommodation, Financial Assessment, Financial Constraints, Financial Context, Financial Issues, Financial Planning, Fix Dementia Care Campaign, Health and Social Care Services, Home and Community Care Services, Home Care, Home Care Services, Home Care Shortfall, Inequity, Ipsos Mori, Ipsos MORI i-Omnibus Survey, Jeremy Hughes CBE: Chief Executive of the Alzheimer’s Society, Lived Experience, Means Test, Modelling the Costs of Dementia, National Dementia Declaration, Office for National Statistics, Paying for Care, Paying for Care and Support, Paying for Long-Term Care, Poverty, Self-Funders, Self-Funding, Social Care Crisis, State Funded Social Care, Sustainability, Turning Up the Volume (Alzheimer’s Society), United Against Dementia (Re-Branding of Alzheimer’s Society), United Against Dementia Campaign, Voices of People With Dementia
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Quality Checkers: Efforts to Reduce Learning Disabilities-Related Barriers to Accessing NHS Services (NHS England)
Summary The NHS Quality Checkers Programme will involve people with learning disabilities helping to inspect their local NHS services and offer advice on how these can be re-designed to better meet their needs (and the needs of other patients). Tools … Continue reading →
Posted in Acute Hospitals, Charitable Bodies, Commissioning, Community Care, Enhancing the Healing Environment, For Carers (mostly), For Doctors (mostly), For Nurses and Therapists (mostly), For Researchers (mostly), For Social Workers (mostly), Integrated Care, National, NHS, NHS Employers, NHS England, Non-Pharmacological Treatments, Person-Centred Care, Quick Insights, Standards, UK, Universal Interest
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Tagged Abusive Institutions, Acute Hospitals, Always Event Interventions, Always Events (Learning Disabilities), Association of Quality Checkers, Barriers and Facilitators to Participation, Barriers to Engagement, Barriers to Integration, Barriers to Involvement, Barriers to Joined-Up Care, Barriers to Speaking Out About Poor Care, Barriers to Support, Building the Right Support, Building the Right Support: National Implementation Plan to Close Inpatient Facilities, Building the Right Support: National Implementation Plan to Develop Community Services, Care of Vulnerable Adults, Centre of Disability Studies: University of Leeds, CHANGE, Claira Ferreira: Commissioning Lead for Learning Disability at NHS Nene and Corby Clinical Commissioning Groups, Community Services, Community-Based Care, Community-Based Services, Community-Based Support, Consumer Experiences of Health and Social Care, Dentistry, Dr Paul Lelliott: Deputy Chief Inspector of Hospitals (CQC Lead for Mental Health), EBCD: Experience-Based Co-Design, Embedding Patient Experience in Service Delivery, Embedding Patient Experience in Service Design, Emergency Departments, Employing People in the NHS With Learning Disabilities, Employing People With Learning Disabilities, End-User Experience, Experience Based Design, Experience-Based Co-Design (EBCD), Experts by Experience, Eye Care and Vision, Eyes and Vision, Gavin Barr: Quality Checker at Sunderland People First, Health Inequalities, Health Inequalities and Premature Mortality for People With Learning Disabilities, Health Inequalities in England, LD Always Events, Learning Disabilities (LD) Always Events, Learning Disabilities Employment Programme, Learning Disabilities-Friendly Environments, Learning Disabilities-Friendly Environments: Acute Hospitals, Learning Disabilities-Friendly Environments: Community Services, Learning Disabilities-Friendly Environments: Dentistry, Learning Disabilities-Friendly Environments: Emergency Departments, Learning Disabilities-Friendly Environments: Learning Disability Services, Learning Disabilities-Friendly Environments: Mental Health Services, Learning Disabilities-Friendly Environments: Primary Care (GPs), Learning Disabilities-Related Barriers to Accessing NHS Services, Learning Disabilities: Improving Health Outcomes, Learning Disabilities: Monitoring Service Quality, Learning Disabilities: NHS England Initiatives, Learning Disabilities: Regulation and Inspection, Learning Disability (LD) Transforming Care Programme, Learning Disability Employment, Learning Disability Experience Based Co-Design, Learning Disability Services, Learning Disability Week, Learning Disability Week (2016), Lived Experience, Mazars Report into Southern Health NHSFT, Mental Health Services, NHS England Quality Checkers Programme, NHS England's Learning Disabilities Employment Programme, NHS General Ophthalmic Services (GOS), NHS Learning Disability Employment Programme, Overcoming Barriers, Patient Experience, Patients’ Right to Challenge, People With Learning Disabilities, Primary Care (GPs), Protecting Vulnerable People, Quality Checkers, Quality Checks, Quality Improvement, Scott Durairaj: NHS England’s Experience of Care Lead for Mental Health and Learning Disabilities, SeeAbility, SeeAbility’s Eye Care and Vision Charter, SeeAbility’s Functional Vision Assessment Tool, Suzie Fothergill: Skills for People; Newcastle upon Tyne and Chairperson at Association of Quality Checkers, Transforming Care for People with Learning Disabilities, University of Leeds, Vulnerable Groups, Vulnerable Older People
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Suppose I Lose It: An Update by Joan Bakewell (BBC Radio 4)
Summary Joan Bakewell, today on BBC Radio 4, explored the subject of dementia, how dementia affects people and their families, the importance of early diagnosis, various aspects of person-centered care, the services available post-diagnosis, and the importance of dementia-friendly communities. … Continue reading →
Posted in Acute Hospitals, Alzheimer's Society, Antipsychotics, Charitable Bodies, Commissioning, Community Care, Diagnosis, For Carers (mostly), For Doctors (mostly), For Nurses and Therapists (mostly), For Social Workers (mostly), In the News, Integrated Care, Management of Condition, Mental Health, Models of Dementia Care, National, Non-Pharmacological Treatments, Patient Care Pathway, Patient Information, Person-Centred Care, Personalisation, Practical Advice, Quick Insights, Standards, UK, Universal Interest
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Tagged Advance Care Planning, Advance Planning, Advance Statements and Decisions, Advice and Information, Age-Friendly Cities, Age-Friendly Communities, Age-Friendly Environments, Age-Related Memory Loss, Alternatives to Medication for Agitation, Awareness and Understanding, BBC Radio 4, BBC Radio Four, Carer's Experience of Dementia, Challenge on Dementia, Cognitive Exercises, Cognitive Stimulation, Cognitive Stimulation Therapy (CST), Communication and Information, Coping with Memory Loss, Crawley Dementia Action Alliance, Crawley Dementia Alliance, Crawley Forward Thinking, Creating Dementia Friendly Environments, Creating Dementia Friendly Hospitals, Dementia and Age-Friendly Neighbourhoods, Dementia Awareness, Dementia Care in Acute District General Hospitals, Dementia Care in Acute General Hospitals, Dementia Care in General Hospitals, Dementia Diagnosis, Dementia Diagnosis and Care in England, Dementia Experiences, Dementia Friends, Dementia Friends Programme, Dementia Sufferers, Dementia Sufferers (Alzheimer's Society), Dementia-Friendly Cities, Dementia-Friendly Communities, Dementia-Friendly Environments, Dementia-Friendly Hospitals, Dementia-Friendly Information, Dementia-Friendly Organisations, Diagnosis, Diagnosis and Assessment, Diagnosis and Referral, Diagnosis and Support, Early Diagnosis, Family and Caregiver Experiences, Family and Carers, Family Carers, Forgetfulness, G8 Dementia Summit, Improving Patient Experience, Information About Services, Information and Advice Services, Information and Support for Patients and Carers, Joan Bakewell (BBC Radio 4, Lasting Power of Attorney (LPA), Lived Experience, Living Well After Diagnosis, Living Well with Dementia, Memory Aids, Memory and Support Services, Memory Assessment Services, Memory Clinics, Memory Lapses, Memory Loss, Memory Problems, Mild Memory Problems, Moderate Exercise, Occupational Therapy, Older Carers, Physical Care in Dementia, Physical Exercise, Post-Diagnosis Support, Post-Diagnostic Dementia Support, Post-Diagnostic Support, Power of Attorney, Prime Minister's Challenge on Dementia, Professor Rowan Harwood, Professor Sube Banerjee, Prunella Scales, Recovery Rehabilitation and Reablement (RRR), Reducing Stigma, Rehabilitation in Dementia, Staying Healthy for Longer, Staying Independent, Stigma of Dementia, Stigma-Free Environments, Sube Banerjee: Centre for Dementia Studies at Brighton and Sussex Medical School, Suppose I Lose It: Joan Bakewell, Timely Diagnosis, Timothy West
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Exploration of Dementia Carers’ Lived Experience (BBC News / ARUK)
Summary Alzheimer’s Research UK commissioned Opinion Leader to investigate all aspects of the impact of caring for a relative with dementia. “Opinion Leader worked with families to produce a rich description of individual experiences, by conducting a series of four … Continue reading →
Posted in Alzheimer’s Research UK, BBC News, Charitable Bodies, Community Care, For Carers (mostly), For Nurses and Therapists (mostly), For Researchers (mostly), For Social Workers (mostly), In the News, Management of Condition, Mental Health, Models of Dementia Care, Person-Centred Care, Quick Insights, Statistics, UK
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Tagged Ageing and Dementia, Ageing and Society, Ageing Population, Alzheimer's Research UK, Alzheimer’s Research UK (ARUK), ARUK: Alzheimer’s Research UK, Awareness, Awareness and Understanding, Balancing Work With Caring, BBC Health News, Behavioural and Psychological Symptoms of Dementia (BPSD), Behavioural Symptoms, BPSD: Behavioral and Psychological Symptoms of Dementia, Burden of Alzheimer’s Disease, Burden of Dementia (Statistics), Burden on Caregivers, Caregiver Assessments, Caregiver Burden, Caregiver Distress, Caregiver Support, Caregivers, Caregiving (Carers), Carer Awareness, Carer Experience, Carer Fatigue, Carer Isolation, Carer Satisfaction, Carer Support, Carer Support Services, Carer's Experience of Dementia, Carer's Needs, Carer’s Needs Assessment, Carer’s Perspective, Carers, Carers and Families, Carers Direct, Carers for People with Dementia, Carers’ Health and Wellbeing, Caring for Carers, Caring: Hidden Costs, Caring: Impact on Personal Goals, Caring: Psychological Health of Carers, Changing Behaviours, Dementia Awareness, Dementia in the Family (ARUK Report), Differential Impact of Dementia (Gender-Related), Disease Burden, Disproportionate Burden of Dementia on Women, Disproportionate Impact of Dementia on Women, Ethnographic Analysis, Ethnographic Approaches, Ethnographic Research, Experiences, Family and Caregiver Experiences, Family Caregivers, Family Carers, Health and Wellbeing of Adult Carers, Impact of Caring on Ability to Work, Impact of Caring on Carers, Informal Caregiving, Informal Carers, Informal Workforce, Information and Support for Carers, Lived Experience, Mental and Physical Health, Opinion Leader, Personal Experience of Dementia, Positive Care Experiences, Prevalence of Dementia, Prevalence of Unpaid Care, Raising the Profile of Carers, Social Isolation, Support for Carers, Unexpected Positives in Caring, Unpaid Caregivers (Carers), Unpaid Carers, Valuing Carers, Views of Informal Carers, Working and Caring, Working Carers
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SCIE’s Video Simulation of the Dementia Experience (SCIE)
Summary A new film is available online from the Social Care Institute for Excellence (SCIE) via SCIE’s Dementia Gateway. It offers an attempt to simulate the subjective experience of how it feels to live with dementia, thereby allowing viewers to … Continue reading →
Posted in Acute Hospitals, Community Care, For Carers (mostly), For Doctors (mostly), For Nurses and Therapists (mostly), For Social Workers (mostly), Management of Condition, Mental Health, Models of Dementia Care, National, Patient Information, Person-Centred Care, Personalisation, Practical Advice, Quick Insights, SCIE, UK, Universal Interest
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Tagged Care Managers, Care Staff, Carers, Community Nurses, Compassionate Care, Culture of Compassionate Care, Delivering Dignity, Dementia Experiences, Dementia Friends, Dementia Gateway, Dementia-Friendly Care Homes, Dementia-Friendly Cities, Dementia-Friendly Communities, Dementia-Friendly Employers, Dementia-Friendly Hospitals, Dementia-Friendly Neighbourhoods, Dementia-Friendly Organisations, Dementia-Friendly Workplaces, Dignity, Dignity and Respect, Dignity in Dementia, Empathic Curiosity, Empathy, Empathy and Understanding, Empathy Training, Employers, Experiences, Experiences of the Transition to Dementia, Families, Friends, Lived Experience, Managers, Neighbours, Nursing Staff, Occupational Therapists, Patient Experiences, People Who Use Services, People With Dementia, Registered Managers, SCIE Dementia Gateway, Service Providers, Social Care Institute for Excellence (SCIE), Social Care Institute of Excellence: Dementia Gateway, Social Workers, Societal Empathy, Staff Training, Trainers, Training and Education, Training for Carers, Video Simulation of the Dementia Experience (SCIE), Workforce Training
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Realising the Value Programme (NHS England / Dementia / Australian Journal of Dementia Care)
Summary The NHS Five Year Forward View requires more support for people with long term conditions, enabling them to manage their own health. The NHS England “Realising the Value Programme” is about putting such plans into action. “NHS England is … Continue reading →
Posted in Acute Hospitals, Charitable Bodies, Commissioning, Community Care, For Carers (mostly), For Doctors (mostly), For Nurses and Therapists (mostly), For Researchers (mostly), For Social Workers (mostly), Health Foundation, In the News, Integrated Care, Local Interest, Management of Condition, National, NHS, NHS England, Non-Pharmacological Treatments, Patient Care Pathway, Person-Centred Care, Personalisation, Quick Insights, Standards, UK, Universal Interest
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Tagged 5YFV: NHS Five Year Forward View, Active and Healthy Ageing, Advice and Information, Advice and Support, AJDC: Australian Journal of Dementia Care, Alzheimer’s Australia, Alzheimer’s Australia Consumer Dementia Research Network, Alzheimer’s Australia Dementia, Alzheimer’s Australia Dementia Language Guidelines, Alzheimer’s Society of Ireland, Anu Singh: NHS England’s Director of Patient & Public Voice and Insight, Asset-Based Approaches to Health and Wellbeing, Australia, Australian Dementia Advisory Committee, Australian Journal of Dementia Care, Autonomy and Choice, Barriers and Facilitators to Participation, Barriers to Engagement, Barriers to Integration, Barriers to Involvement, Barriers to Joined-Up Care, Barriers to Older People Accessing Help and Support, Behavioural Insights Team, Caregiver Support, Carer Support, Carer Support Services, Challenges of Reconfiguration, Chronic and Severe Illness, Chronic Care, Co-Commissioning, Co-Production, Coalition for Collaborative Care, Collaboration, Collaborative Care, Commissioning for Maximum Value, Commissioning for Outcomes, Commissioning for Transformation, Commissioning for Value, Commissioning on Grounds of Quality and User Involvement, Community and Voluntary Sector, Community Empowerment, Community Engagement, Community Health Services, Community Service Volunteers (CSV), cottish Dementia Working Group, Deconstructing the Language of Dementia, Dementia Advocacy and Support Network International (DASNI), Dementia Alliance International, Dementia Friendly Language, Dementia-Friendly Communities, Dementia-Friendly Resources, Dementia-Friendly Resources: Dementia Language Guidelines, Dignity4Disability in South Australia, Discrimination and Stereotyping, Empowering Patients, Empowerment and Dementia, Encouraging Healthy Behaviour, Encouraging Innovation, Engagement, European Dementia Working Group, Giles Wilmore: Director for Patient and Public Voice and Information at NHS England, Group-Based Activities to Support Health and Wellbeing, Health and Wellbeing, Health Coaching, Health Policy Charities, Healthy Ageing, Healthy Behaviours, Healthy Lifestyles, Healthy Living, Help at Home, Increasing Wellbeing, Information and Advice, Informed Choice, Integrated Care and Support, Integrated Care Services, Integrated Commissioning, Integrated Personal Commissioning Programme, Integrated Services, Integration of Health and Social Care, Integration of Health and Social Care for Older People, Interventions to Increase Patient Activation, Kate Swaffer: Chair of Dementia Alliance International, Labelling, Language (Terminology), Language of Dementia, Lifestyle, Lifestyle Factors, Lifestyle Tools, Lived Experience, Local Commissioning, Local Context, Local Empowerment, Local Flexibility, Local Leadership, Long-Term Condition Assessment, Long-Term Conditions, Long-Term Conditions (LTCs), National Association for Voluntary and Community Action (NAVCA), National Endowment for Science Technology and the Arts (NESTA), National Voices, NAVCA, NAVCA (National Association for Voluntary and Community Action), NESTA, NESTA: National Endowment for Science Technology and the Arts, Newcastle University, NHS England's Realising the Value Programme, NHS England’s Realising the Value Programme for Patient and Community Empowerment (NHS England)., NHS Five Year Forward View, Participatory Decision-Making, Patient Activation, Patient and Community Empowerment, Patient and Public Voice, Patient Choice, Patient Empowerment, Patient Empowerment Movement, Patient Engagement, Patient Engagement Strategies, Patient Experience, Patient Involvement, Peer Support, Prescribed Disengagement, Prescribed DisengagementTM (Kate Swaffer), Preventative Care, Prevention, Preventive Care, Preventive Services, Problem Prevention, Public Agency and Community Empowerment Strategies (PACES), Public Health, Questioning BPSD, Realising the Value, Realising the Value Programme, Reducing Stigma, Regional Voices, Self Management of Chronic Disease, Self-Administration, Self-Care, Self-Determination, Self-Directed Services, Self-Directed Support, Self-Efficacy, Self-Help, Self-Management Education, Self-Management in Chronic Illness, Service User Involvement, Staying Healthy for Longer, Stereotyping, Stigma and Discrimination, Stigma of Dementia, Stigma-Free Environments, Strategies for Informing Educating and Involving Patients, Support for People with Complex Needs, Support to Care Home Residents, Supporting Carers, Supporting Healthy Lifestyles, Supporting Patients to Leave Hospital, Supporting People to Manage Their Health, Supporting Self-Care, Transforming Participation in Health and Care, University of Wollongong, Voluntary and Community Sector (VCS), Voluntary Sector, Voluntary Sector and Ageing, Voluntary Voices
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Emerging Leaders In Dementia: Communiqué for the First WHO Ministerial Conference on Global Action Against Dementia (World Dementia Council)
Summary A group of “young leaders in dementia” will take part in the First Global Ministerial Conference on Global Action Against Dementia, which is to be hosted by the World Health Organisation (WHO) in Geneva on March 16th – 17th … Continue reading →
Posted in Acute Hospitals, Assistive Technology, Charitable Bodies, Commissioning, Community Care, Department of Health, Diagnosis, For Carers (mostly), For Doctors (mostly), For Nurses and Therapists (mostly), For Researchers (mostly), For Social Workers (mostly), In the News, Integrated Care, International, Management of Condition, Mental Health, Models of Dementia Care, Patient Care Pathway, Person-Centred Care, Pharmacological Treatments, Quick Insights, Standards, UK, Universal Interest, World Health Organization (WHO)
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Tagged Ageing and Dementia, Ageing and Society, Ageing Population, American Association for the Advancement of Sciences, Awareness Raising, Burden of Dementia, Care Standards, Care Standards in Hospitals, Carer Experience, Carer's Experience of Dementia, Carers’ Experiences of the Dementia Journey, Center for Public Engagement with Science and Technology (the American Association for the Advancement of Sciences), Challenge on Dementia (David Cameron), Collaboration, Collaborative Projects, Cross Sector Working, Cross-Sector Partnerships, Dementia Challenge, Dementia Diagnosis, Dementia Grand Challenge Proposal (WDC or G7 Sponsorship for Jumpstarting Radical Breakthroughs in Prevention Cure and Care of Dementia)), Dementia Narrative (Qualitative Research), Dementia Research, Dementia-Friendly Communities, Dementia-Friendly Design, Dementia-Friendly Products, Disease Modifying Treatment by 2025 (Aim), Disease-Modifying Therapies, Disease-Modifying Therapies for Dementia, Disproportionate Burden of Dementia on Women, Drug Discovery Programmes, Drug Identification, Drug Regulation, Drug-Development Pipeline, Emerging Leaders In Dementia (aka Young Leaders in Dementia), Experiences, First Global Ministerial Conference on Global Action Against Dementia, First WHO Ministerial Conference on Global Action Against Dementia, G7 Countries, G7 Dementia Summit, G7 Global Dementia Summit, G8 Dementia Summit, G8 Dementia Summit: Global Action Against Dementia, GAAD: Global Action Against Dementia, Global Action Against Dementia, Global Action Against Dementia (GAAD), Global Dementia Framework, Global Ministerial Conference on Global Action Against Dementia (WHO), Global Outlook, Global Toolbox for Dementia Research (Proposal), Government Research Funding, Group of 7 (G7), Home Care Standards, Intergenerational Cohesion, Intergenerational Mingling, Intergenerational Relations, Intergenerational Solidarity, Intergenerational Work, International Collaborations, International Dementia-Friendly Symbol (Proposal), International Programmes, Interventions: Outcomes and Cost Savings, Knowledge Translation, Leadership, Lived Experience, London, Mobile Technology, Multi-Generational Approaches, Multisectoral Collaboration, OECD, One-Stop Shops, Organisation for Economic Co-operation and Development (OECD), Organisation for Economic Co-operation and Development (OECD) Countries, Ottawa, Outcomes and Monitoring, Outcomes Benchmarking, Partnership, Partnership and Collaboration, Partnership Working, Patient Experience, Personal Experience of Dementia, Prevalence of Dementia, Prevention, Prevention Programmes, Prime Minister’s Dementia Challenge, Purple Angel Logo, Quality of Care, Quality of Care and Support, Quality of Care for People With Dementia, Reducing Stigma, Research and Development, Research and Innovation, Research Commitment, Research Funding, Science and Innovation Network (SIN), Service User Experience, Social Care Standards, Stigma, Stigma of Dementia, Stigma-Free Environments, Tokyo, UK Science and Innovation Network, UK Science and Innovation Network (SIN), Voluntary and SME Sectors, Washington DC, Working With Professionals From Other Sectors, World Health Organisation (WHO), World Health Organisation (WHO) Regional Office for Europe, Young Leaders in Dementia (#YLDementia), Young Leaders in Dementia (Canada Japan USA Europe), Young Leaders in Dementia Group
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