Challenging Assumptions Around Dementia : : User-Led Research and Untold Stories.

• Author: Ashworth, Rosalie.
• TeilnehmendeR: Fyvel, Sue.; Hill, Alyson.; Maddocks, Chris.; Qureshi, Masood.; Ross, David.; Hay, Stuart.; Robertson, Martin.; Gilder, Willy.; Henry, Winnie.
• Place / Publishing House: Cham : : Springer International Publishing AG,, 2023.; ©2023.
• Year of Publication: 2023
• Edition: 1st ed.
• Language: English
• Physical Description: 1 online resource (154 pages)

Table of Contents

Intro -- About the Book -- Contents -- List of Figures -- Chapter 1: Introduction -- Meet the Co-authors -- Let's Write a Book -- Writing Sessions -- Missing Voices -- Emotional Content -- Dementia Statistics Overview -- Chris's Story -- Useful Resources: -- LGBTQ+ Community -- Useful Resources: -- Alzheimer's Society -- Alyson, Sheila, and David's Story -- Useful Resource: -- References -- Chapter 2: 'You Don't Look Like You Have Dementia' -- What Does Dementia at the Different Stages Look Like? -- Fighting for Financial Aid -- Raising Awareness Through a 'dementia card' -- Does It Help if People Know? -- Educating People About Dementia -- MAQ's Story -- MAQ -- Useful Resources: -- Winnie and Wullie's Story -- Winnie -- Useful Resources: -- Willy's Story -- Willy -- Useful Resources: -- References -- Chapter 3: 'How Does Your Dementia Affect You?' -- Understanding the Brain -- Myths About the Brain -- Areas of the Brain -- Myths About Dementia -- Myth 1: 'Dementia Only Affects Older Adults' -- Myth 2: 'There Is Nothing You Can Do to Change Your Risk of Dementia' -- Myth 3: 'Alzheimer's Disease and Dementia Are the Same Thing' -- Alzheimer's Disease -- Lived Experience -- Vascular Dementia -- Lived Experience -- Posterior Cortical Atrophy -- Lived Experience -- Frontotemporal Dementia -- Lived Experience -- Semantic Dementia -- Lived Experience -- Lewy Body Dementia -- Lived Experience -- Diagnosis Experience -- Martin's Story -- Myra and Archie's Story -- Agnes' Story -- Useful Resources: -- References -- Chapter 4: 'I Didn't Know I Was a Carer' -- Working with Paid Carers -- Being Recognised as Experts by Experience -- Sharing Home Space -- Examples of Best Practice in Care -- Planning Ahead -- Jenny and Her Mum's Story -- Useful Resources: -- Fred's Story -- Useful Resources: -- David and Anne's Story -- References.

Chapter 5: What Research Means to Us: NRS Neuroprogressive and Dementia Network -- Getting to Know the Neuroprogressive and Dementia Network -- What Got You into Researching Dementia and Neuroprogressive Conditions? -- Could You Share Your Experiences of Dementia Research Over the Past 10-15 Years? -- Why Is Research Important? -- What Do You Wish People Knew about Research? -- Approaches to Clinical Trials in Dementia -- Lessons from COVID-19 Clinical Trials -- Hear from Research Participants from the Neuroprogressive and Dementia Network -- Spectrum of Research -- Understandings of Research -- Building a Partnership -- Examples of Best Practice in Co-produced Research -- Meet The Smarties -- Dementia Alumni -- Dementia Enquirers -- What We Would Like to See from Research Going Forward -- Stuart &amp -- Eileen's Story -- Sue's Story -- Rosie's Story -- References -- Chapter 6: Final Thoughts -- Question 1 -- Question 2 -- Question 3 -- For People Living with Dementia -- Family Members -- Professionals -- Members of the Public -- Get in Touch -- Embedded Links -- Index.