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Blogs Written By People Living With Dementia

BLOG AUTHOR
Sharing My Life with Lewy Body Dementia Jim Whitworth – USA
Living with Dementia Symptoms Truthful Loving Kindness – USA
Creating Life with Words: Inspiration, Love and Truth Kate Swaffer – Australia
Which Me Am I Today Wendy Mitchell – UK
My Thoughts on Dementia Harry Urban – USA
Early Onset Atypical Alzheimer’s John Sandblom – USA
Living Well with Lewy Body Dementia, COPD and Osteoarthritis Ken Clasper – Australia
Living Well with Dementia John Quinn – Australia
My Journey with Alzheimer’s Susan Parish – Canada
Living with Alzheimer’s Joe Potocny
The Diminishing Window Mitch Evich – USA
WithAlzmyheart Brian Kursonis – USA

Blogs Written By Others About Dementia

BLOG AUTHOR
Alzheimer’s Blog, Mayo Clinic Angela Lunda
Alzheimer’s Speaks Blog Lori LaBey
D4Dementia Beth Britton
Dealing with Dementia Kay Bransford
Dementia Action Alliance USA Different bloggers each month
Dementia Diaries: Journey with Dementia Deborah Shouse
Lifelong Metamorphoses Carolyn Cook
Living in the Shadows of Alzheimers Sheri Zschocker
Memories From My Life Pat White
The Alzheimer’s Spouse Joan Gershman
The Dementia Centre University of Stirling

Books Written By People Living With Dementia

BOOK TITLE AUTHOR YEAR
Coming Out of the Shadows: Why I am a Dementia Advocate Christine Bryden 2016
Nothing About Us Without Us: 20 Years of Dementia Advocacy Christine Bryden 2015
Before I Forget: How I Survived a Diagnosis of Younger-Onset Dementia Christine Bryden 2015
Who Will I be When I Die? Christine Bryden 2012
Dancing with Dementia: My Story of Living Positively with Dementia Christine Bryden 2005
What the Hell Happened to My Brain?: Living Beyond Dementia Kate Swaffer 2016
Alzheimer’s from the Inside Out Richard Taylor 2015
People with Dementia Speak Out Lucy Whitman (Ed) 2015
Don’t Bury Me…It Ain’t Over Yet Charles Schneider 2006
Losing My Mind: An Intimate Look at Life with Alzheimer’s Thomas DeBaggio 2003
When It Gets Dark: An Enlightened Reflection on Life with Alzheimer’s Thomas DeBaggio 2007
From the Corner Office to Alzheimer’s Michael Ellenbogen 2012
My Journey into Alzheimer’s Disease Robert Davis 1989
Through the Wilderness of Alzheimer’s: A Guide to Two Voices Robert and Anne Simpson 1999
Just Love Me: My Life Turned Upside-Down by Alzheimer’s Jeanne Lee 2003
Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer’s Diane Friel McGowin 1994
On Pluto: Inside the Mind of Alzheimer’s Greg O’Brien 2014
Dementia & Sensory Challenges – an online booklet at http://www.sdwg.org.uk/wp-content/uploads/2016/sensory-leaflet.pdf Agnes Houston 2016
By Us For Us – series of guides Murray Alzheimer Research and Education Program

Books Written By Others About Dementia

GENERAL BOOKS ABOUT DEMENTIA – TITLES AUTHOR YEAR
A Curious Kind of Widow: Loving a Man with Advanced Alzheimer’s Disease Ann Davidson 2015
A Dignified Life Virginia Bell, David Troxel 2012
Aging Together Susan and John McFadden 2014
Alzheimer’s: A Beautiful Spirit Celebrated Linn Possell 2012
Contented Dementia Oliver James 2010
Creating Moments of Joy Jolene Brackley 2008
Dancing with Rose: Finding Life in the Land of Alzheimer’s Lauren Kessie 2006
Dementia Beyond Drugs G. Allen Power 2011
Dementia Beyond Disease G. Allen Power 2014
Don’t Rain on My Parade: Living a Full Life with Alzheimer’s and Dementia Richard Fenker 2016
Hiding the Stranger in the Mirror Cameron Camp, PhD 2012
I Still Enjoy a Good Laugh: A Guide for the Journey Through Alzheimer’s Disease Sharon Gregoire 2009
I’m Still Here: A Breakthrough Approach to Understanding Someone Living with Alzheimer’s John Zeisel, PhD 2009
In My World: Short Stories About Familiar People and Places Laura Bowley 2016
Learning to Speak Alzheimer’s Joanne Koenig Coste, Robert Butler 2004
Lewy Body Dementia: Causes, Tests and Treatment Options Adam Wainwright, MA, Erick Stevenson, MD, and Deanna Miller, RN 2012
Living Your Best with Early-Stage Alzheimer’s Lisa Snyder, LICSW 2010
Love, Loss and Laughter: Seeing Alzheimer’s Differently Cathy Greenblat 2012
Loving Someone Who has Dementia Pauline Boss 2011
Mayo Clinic Guide to Alzheimer’s Disease Ronald Peterson, MD, PhD 2009
Measure of the Heart: A Father’s Alzheimer’s, a Daughter’s Return Mary Ellen Geist 2008
Moving a Relative with Memory Loss Laurie White, Beth Spencer 2006
No More Words: A Journal of My Mother, Anne Morrow Lindbergh Reeve Lindbergh 2002
Person-Centred Dementia Care: Making Services Better Dawn Brooker 2007
Remembering the Music, Forgetting the Words: Travels with Mom in the Land of Dementia Kate Whouley 2011
Sexuality and Dementia: Compassionate and Practical Strategies for Dealing with Unexpected or Inappropriate Behaviors Douglas Wornell, MD 2013
Singing Solo JacLynn Herron 2011
Speaking Our Minds: Personal Reflections from Individuals with Alzheimer’s Lisa Snyder, LICSW 2009
Still Alice Lisa Genova 2014
Take Your Oxygen First Leeza Gibbons, James Haysman, and Rosemary Laird, MD 2009
Talking to Alzheimer’s Claudia Strass 2002
Tangles: A Story About Alzheimer’s, My Mother and Me Sarah Leavitt 2012
The Alzheimer’s Action Plan: The Experts’ Guide to the Best Diagnosis and Treatment for Memory Problems P. Murali Doraiswamy, Lisa Gwyther 2008
The Alzheimer’s Catastrophe Cynthia Janus 2016
The Enduring Self in People with Alzheimer’s: Getting to the Heart of Individualized Care Sam Fazio 2008
The Thousand Mile Stare Gary Reiswig 2010
Voices of Alzheimer’s – The Healing Companion: Stories for Courage, Comfort and Strength David Shenk (ed) 2007
What if It’s Not Alzheimer’s: A Caregiver’s Guide to Dementia Lisa and Gary Radin 2014
You Say Goodbye and We Say Hello: The Montessori Method for Positive Dementia Care Tom and Karen Brenner 2012
BOOKS ABOUT CAREGIVING – TITLES AUTHOR YEAR
A Caregiver’s Guide to Lewy Body Dementia Helen Buell Whitworth and Jim Whitworth 2010
A Dignified Life: The Best Friends’ Approach to Alzheimer’s Care – A Guide for Care Partners Virginia Bell, David Troxel 2012
A Pocket Guide for the Alzheimer’s Caregiver Daniel Potts, MD & Ellen Woodward Potts 2011
Alzheimer’s A to Z: Secrets to Successful Caregiving Jytte Lokvig, John Becker 2004
Alzheimer’s Early Stages: First Steps for Family, Friends and Caregivers Dan Kuhn, David A. Bennett 2013
Coach Broyle’s Playbook for Alzheimer’s Caregivers Frank Broyles 2006
Let’s Talk Dementia: A Caregiver’s Guide Carol Howell 2015
Sometimes Ya Gotta Laugh: Caregiving, Laughter, Stress and Alzheimer’s Disease Karen Stobbe 2004
The Comfort of Home: The Complete Guide for Caregivers Maria Meyer & Paula Derr 2007
The Mindful Caregiver: Finding Ease in the Caregiving Journey Nancy Kriseman, LCSW 2014
Visiting Mom – An Unexpected Gift: A Guide for Visiting Elders with Alzheimer’s Sherry Bell, PhD 2000
When Caring Takes Courage: A Compassionate, Interactive Guide for Alzheimer’s and Dementia Caregivers Mara Botonis 2014
SPECIAL TOPIC BOOKS ABOUT DEMENTIA – TITLES AUTHOR YEAR
Connecting in the Land of Dementia: Creative Activities to Explore Together Deborah Shouse 2016
Dementia Arts: Celebrating Creativity in Elder Care Gary Glazner 2014
Do This, Remembering Me: The Spiritual Care of Those with Alzheimer’s and Dementia Colette Bachand-Wood 2016
Spirituality and Personhood in Dementia Albert Jewell, Editor 2011

Books Written About Dementia for Children

BOOK TITLE AUTHOR YEAR
What’s Happening to Grandpa? Maria Shriver 2004
Remember, Grandma? Laura Langston 2004
Remember Me? Te Acuerdas de Me? Sue Glass 2002
A Heart Full of GEMS Linn Possell, Teepa Snow 2015
Always My Grandpa: A Story for Children About Alzheimer’s Disease Linda Scacco 2005
My Little Grandmother Often Forgets Reeve Lindbergh 2007
Still My Grandma Veronique Van Den, Abeele and Claude Dubois 2007
Striped Shirts and Flowered Pants Barbara Schnurbush 2007
The Graduation of Jake Moon Barbara Park 2002
The Last Best Days of Summer Valerie Hobbs 2014
The Memory Box Mary Bahr, David Cunningham 1992
Wordsworth Dances the Waltz Frances Kakugawa 2007

Research/Cure

SITE AFFILIATION
Alzheimer’s & Dementia Patient & Caregiver Powered Research Network Collaboration among Mayo Clinic, University of Florida, UsAgainstAlzheimer’s, and the Brain Health Registry at the University of California-San Francisco

Facebook Pages

FACEBOOK PAGE AUTHOR
https://www.facebook.com/TheBrianLeBlanc Brian LeBlanc
https://www.facebook.com/Memory-People-126017237474382/ Memory People Organization
https://www.facebook.com/YoungOnsetDementiaSupportGroup Young Onset Dementia Support Group
https://www.facebook.com/teepa.snow.9 Teepa Snow
https://www.facebook.com/BobDeMarco Bob DeMarco – “The Alzheimer’s Reading Room”
https://www.facebook.com/LBDlivingbeyonddiagnosis/ Robert Bowles – “Lewy Body Dementia: Living Beyond Diagnosis”

Reports, Papers & Other Publications

TITLE PUBLISHED BY
A Compendium of Essays: New Perspectives and Approaches to Understanding Dementia and Stigma International Longevity Centre in collaboration with the Medical Research Council, Alzheimer’s Research UK and the Alzheimer’s Society
“Alzheimer’s Patient Navigation Model” The Global Council on Alzheimer’s Disease (GCAD)
At Home with Dementia: A Manual for People with Dementia and Their Carers NSW Family & Community Services/Ageing, Disability & Home Care (Australia)
By Us For Us Series of Guides Murray Alzheimer Research and Education Program, University of Waterloo (Canada)
Coping with Early Stages of Dementia Dementia Services Information and Development Centre
Dementia: A Public Health Priority Alzheimer’s Disease International & the World Health Organization
Dementia Care: The Quality Chasm Dementia Action Alliance
Dementia Priorities Identified from a National Survey Dementia Action Alliance and the University of Buffalo’s Institute for Person-Centered Care
Dementia, Rights, and the Society Model of Disability Mental Health Foundation (UK)
Developing a National User Movement of People with Dementia: Learning From the Dementia Engagement and Empowerment Project (DEEP) Joseph Rowntree Foundation (UK)
“Disrupting Alzheimer’s: The Opportunities for Technology in Alzheimer’s Disease” The Global Council on Alzheimer’s Disease (GCAD)
“Disrupting Alzheimer’s: The Opportunities for Technology in Alzheimer’s Disease” Webinar The Global Council on Alzheimer’s Disease (GCAD)
Evaluation of the Bradford Dementia Friendly Communities Programme Joseph Rowntree Foundation (UK)
How to Lead Collective Impact Working Groups FSG
Living with Dementia: Changing the Status Quo Dementia Action Alliance
Memory Café Toolkit Jewish Family and Children Services of Boston
New Perspectives and Approaches to Understanding Dementia and Stigma Alzheimer’s Society (UK) and Alzheimer’s Research UK
Palliative Care for People with Dementia CaringKindNYC
The Dialectics of Dementia Social Care Workforce Research Unit, King’s College London
The Human Rights of People Living with Dementia: From Rhetoric to Reality Dementia Alliance International
Supporting and Accommodating People with Dementia at Professional Conferences and Other Events Dementia Alliance International
Words Matter: See ME Not My Dementia Dementia Action Alliance
World Alzheimer Report 2016: Improving Healthcare for People Living with Dementia Alzheimer’s Disease International

Research Sites

WEBSITE WEBSITE URL
Alzheimer’s Association Research Center www.alz.org/research
Duke University Bryan Alzheimer’s Disease Research Center https://adrc.mc.duke.edu/
Fisher Center for Alzheimer’s Research www.alzinfo.org/research
Mayo Clinic Alzheimer’s Disease Research Center www.mayo.edu/research/centers-programs/alzheimers-disease-research-center
University of CA/Davis Alzheimer’s Disease Research Center www.ucdmc.ucdavis.edu/alzheimers
UCSF Memory and Aging Center http://memory.ucsf.edu/
Washington University Alzheimer’s Disease Research Center www.alzheimer.wustl.edu

Videos and Films About Dementia

VIDEO TITLE PRODUCED BY
Videos
Person-Centered Matters Dementia Action Alliance – USA
Be With Me Today” – Richard Taylor sharing his perspective on what it is like to have Alzheimer’s disease Have a Good Life Media available from Health Professions Press
I’m Still Richard” with Richard Taylor Have a Good Life Media
A New Voice: Living Well with Dementia” – Mary Beth Wigthon, newly diagnosed with dementia, sets out to learn about dementia Murray Alzheimer Research and Education Program
Living Well with Dementia Partnership in Dementia Care Alliance
About Dementia Teepa Snow – Positive Approach to Care
Words Matter The Dementia Engagement & Empowerment Project
Make a Point About Young Onset Dementia Young Dementia UK
Dementia Brain Tour Alzheimer’s Society UK
Dementia Can Be More Than Memory Agnes Houston, Scottish Dementia Working Group
Caring for Someone with Alzheimer’s Animation created by GCAD
Dementia and Sensory Challenges Life Changes Trust
Travelling Safely with Dementia Scottish Dementia Working Group
Love Lives Here – Silverado Corinne Maunder & Cathy Greenblat
I Remember Better When I Paint” – 2009 French Connection Films & Hilgos Foundation
Journey by Heart: Caring for Loved Ones with Dementia” – 2007 d-Facto Film Studio
There is a Bridge” – 2007 Michael Verde, Memory Bridge
Dementia from the Inside Social Care Institute for Excellence
Window of Opportunity: What You Can Do in Your Community Joseph Rowntree Foundation
Getting Along Innovations in Dementia
Care Ecosystem & New Technology in Clinical Care UCSF Memory and Aging Center
Care Ecosystem:Navigating Patients and Families Through Stages of Care UCSF Memory and Aging Center
Films
Website of films about dementia, “Living with Alzheimer’s Film Project Founded by David Shenk
Alive Inside” – 2014 Dan Cohen, Music & Memory
I’ll Be There for You: Providing Person-Centered Dementia Care Terra Nova Films -training film
More Than Words: Successful Ways to Care & Communicate with Persons Who Have Dementia Terra Nova Films -training film
Bob, I’m Really Busy: The Impact of Impersonal Care on the Well-Being of Persons Living with Dementia Terra Nova Films -training film
Beyond Laughter & Tears-A Journey of Hope Avanir  – The PBA Film Project
“Living with Dementia: To Change Your Mind About People Whose Minds Have Changed” Terra Nova Films

Websites with Helpful Dementia Information

WEBSITE WEBSITE URL
ACT on Alzheimer’s www.actonalz.org
Alzheimer’s Australia (Australia) www.fightdementia.org.au
Alzheimer’s Canada (Canada) www.alzheimer.ca
Alzheimer’s & Dementia-Global Resources https://alz.org/global/
Alzheimer’s Disease International www.laz.co.uk
Alzheimer’s Foundation of America www.alzfdn.org/
Alzhiemer’s Online – University of FL
(online support for care partners)
www.alzonline.phhp.ufl.edu
Alzheimer’s Reading Room www.alzheimersreadingroom.com
Alzheimer’s Society (UK) www.alzheimers.org.uk
Alzheimer’s Speaks Online Radio Program http://www.blogtalkradio.com/alzheimersspeaks
AlzTalk – Fisher Center for Alzheimer’s Research and Foundation www.alzinfo.org/alztalk
Call Alert Center (for Caregivers) https://callalertcenter.com/caregiver
Dementia Action Alliance UK (UK) www.dementiaaction.org.uk
Dementia Action Alliance USA www.daanow.org
Dementia Alliance International www.dementiaallianceinternational.org
Dementia Diaries (UK) www.dementiadiaries.org/uk
Dementia Enabling Environments www.enablingenvironments.com.au
Dementia Friends (UK) www.dementiafriends.org.uk
Dementia Mentors www.dementiamentors.org
Dementia Services Development Centre (Scotland) www.dementia.stir.ac.uk
Forget Me Not Online Support Group www.sites.google.com/site/forgetmenotgroup
Glorious Opportunity www.gloriousopportunity.org
I’m Still Here Foundation www.imstillhere.org
Innovations in Dementia (UK) www.innovationsindementia.org.uk
Lenzyhouse Ministry, Inc. www.lenzyhouse.org
Lewy Body Dementia Association www.lbda.org
Life Changes Trust (Scotland) www.lifechangestrust.org.uk/people-affected-by-dementia
Memory Bridge www.memorybridge.org
Memory Café USA Directory www.memorycafedirectory.com
Memory Care Café www.memorycarecafe.org
Mick Carmody www.carmodym59.com
Mindset Centre for Living with Dementia (Canada) www.mindsetmemory.com
Murray Alzheimer Research and Education Program (Canada) www.waterloo.ca/murray-alzheimer-research-and-education-program
Partnerships in Dementia Care Alliance (Canada) www.uwaterloo.ca/partnerships-in-dementia-care
Scottish Dementia Working Group (Scotland) www.sdwg.org.uk
Teepa Snow www.teepasnow.com
The Alzheimer Society of Ireland – Living With Dementia www.alzheimer.ie/living-with-dementia
The Association for Frontotemporal Degeneration www.theaftd.org
The Dementia Engagement and Empowerment Project (UK) www.dementiavoices.org.uk
The Purple Elephant (Canada) www.thepurpleelephant.org
Unforgettable – online marketplace for dementia and memory loss products www.unforgettable.org
ARTS & MUSIC RELATED
Alzheimer’s Poetry Project (poetry) www.alzpoetry.com
Arts4Dementia (arts) www.arts4dementia.org.uk
Arts for Dementia www.artsfordementia.com
Creative Dementia Arts Network  (England & Wales) www.creativedementia.org
Dementia & Imagination (arts) www.dementiaandimagination.org.uk/art-and-dementia
Dementia Arts [includes the Institute for Dementia Education and Arts] www.dementiaarts.com
Meet Me at MoMA (art) www.moma.org
Music & Memory (music) www.musicandmemory.org
TimeSlips (story telling) www.timeslips.org
The Society for the Arts in Dementia Care www.cecd-society.org
To Whom I May Concern (theater program) www.towhomimayconcern.info

 

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