Resources

Living With Alzheimer’s and Dementia

Living with Dementia: Resources for Living Well: Information and resources that enables those newly diagnosed with dementia and their families to have the necessary information to live well and help prepare for the road ahead. Everything is collected in one place, so your search for current and reliable information is easy.

By Us For Us Guides: The By Us For Us Guides are a series of guides created by a group of talented and passionate persons with dementia. The guides are designed to equip persons with dementia with the necessary tools to enhance their well being and manage daily challenges. What makes these guides particularly useful is that they are created By persons with dementia For persons with dementia. Download a poster for details about each of the booklets and ordering information.

Breaking the Silence — Giving Voice to Persons Living with Dementia: A DVD that highlights the importance of hearing the voices of persons living with Alzheimer Disease and related dementias. It features three persons with early-stage dementia who share their “lived” experiences of dementia by describing their issues, concerns, hopes, coping strategies and experiences since being diagnosed with dementia.

Alzheimer’s from the Inside Out: Richard Taylor, PhD, “suffered from the symptoms of” Alzheimer’s disease. His gift of amazing communication skills — both written and verbal — allows us a glimpse into what it is like to live with Alzheimer’s. Richard Taylor inspired people to live to their potential, no matter what. His book is a “must read” and can be purchased on Amazon. From his web site, you can subscribe to his monthly newsletter, full of inspiration and helpful information.

I’m Still Here: I’m Still Here is a powerful, research-based play that presents a realistic portrayal of the experience of dementia from the perspectives of those living with dementia and their families. In English and French.

A Changing Melody: “A Changing Melody” is a one-day conference with active participation by people with dementia, developed by MAREP in true partnership with people with dementia. Take note that this is not just another caregivers conference! If you are a person with dementia or a care partner of a person with dementia, you will want to attend “A Changing Melody.” You will leave feeling empowered and inspired and with a new set of friends as well. Professionals who are service providers to people with dementia will never view dementia the same way again; one activity director stood up at the 2008 conference in Toronto and said “I will have to rethink my entire job!”

Memory People: This closed Facebook group is a source of support for caregivers and people with dementia and of information and resources. This is an extremely active group! The best way to find it is to search for it on Facebook. Associated groups include Memory People Resources.

Love, Loss and Laughter: Seeing Alzheimer’s Differently: Internationally renowned photographer Cathy Greenblat presents a web-based version of her travelling photography exhibit of people around the world living with dementia, complete with written and audio commentary. The book was published in March 2012.

Dementia Alliance International (DAI): DAI is a non-profit group of people with dementia from all around the world that seek to represent, support, and educate others living with the disease. DAI provides a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life. Through an exciting collaboration with Alzheimer’s Disease International, Dementia Alliance International is now the peak body globally for people with dementia.

DASNI – Dementia Advocacy and Support Network International: An internet-based support network by and for people with dementia. By sharing their hopes and concerns, and participating in dementia-related activities, DASNI empowers people with dementia to actively participate in their own care and treatment. DASNI supports a more accepting, more hopeful view of living with dementia. Click on the member blogs list for links to the blogs of people around the world who are living with dementia.

Learning About Dementia From People Who Have Dementia

Dementia-Friendly Vision Expanded: Michael Ellenbogen, an advocate living with younger onset Alzheimer’s disease, has gathered extensive information on Dementia-Friendly Communities and compiled it into this report.

Dementia Symptom Perspective: This online newsletter is a compilation of recent writings by people with dementia. Put together by Truthful Loving Kindness, herself a person dealing with symptoms of dementia, it is a well-researched and organized work.

This Is My Voice (and other videos produced by To Whom I May Concern): This Is My Voice is a candid, online conversation among five people with dementia from across the USA and UK. Responding to the question, “What is it like to live with dementia?,” this group of strangers soon become friends as they find common ground through stories they share. You will be moved by their courage, their insight, and their humor. This Is My Voice gives a face and a voice to early onset dementia and provides an educational experience that changes hearts and minds.

Norm McNamara:Norm lives in the UK and has been diagnosed with Lewy Body disease. You can find him on Facebook and LinkedIn. Norm has two books: Me and My Alzheimer’s and More Than Words: Poems by an Alzheimer’s Sufferer.

Susan Parish: Susan lives in Canada. She writes every so often on her blog, and her words give her followers a unique glimpse into her life.

Christine Bryden: Christine hails from Australia and was diagnosed with Alzheimer’s disease in 1995 at age 46. Christine was the keynote speaker at the 2011 ADI conference in Toronto. She has written a couple of books about her experiences.

Joseph Potocny: Joe’s blog gives an in depth, almost daily, view of life with Frontotemporal dementia.

Rick Phelps: (This link goes to Lori La Bey’s blog. This page includes a letter from Rick, talking about himself and how to access Memory People on Facebook) Rick hails from Ohio and has early onset Alzheimer’s disease. Rick is very active bringing awareness to dementia and “memory impairment” (love it!) through the Facebook group Memory People, and through daily videos that can be seen via the Memory People group or on YouTube (go to www.youtube.com and search for “Rick Phelps”). Memory People is a closed group on Facebook where people with dementia and their supporters can — in private — share their experiences, their successes, their frustrations and their joy.

Kris Bakowski: Here was what Kris says about herself on her blog: I was diagnosed with Early On Set Alzheimer’s when I was 46 years old. I am now 54 and working in Advocacy to help fight this disease. I speak on a local and national level about dealing with Alzheimer’s while living it. Hopefully, my perspective can and will help others.

Kate Swaffer: Kate is an international advocate and blogs about living with dementia. Her blog is “committed to meaningful dialogue with a wide range of stakeholders about the critical issues impacting a person living with a diagnosis of dementia and their families and close friends.”

Paul D. Newman: If you click on Paul’s name, you will display the web page for his book A Cruel Twist of Fate. Paul says in the book summary: On August 19, 2009 I was diagnosed with early onset Alzheimer’s disease at the age of 51. This is my story. Instead of wallowing in bitterness and anxiety, I decided to document the journey I am in the midst of taking through the world of this mind wrenching disease.

Dementia Alliance International (DAI): DAI’s website has a weekly blog written for the most part by people with dementia.

Caregiver Resources

AlzLive.com: A free, daily, digital lifestyle and news platform designed specifically for the unpaid family caregivers of Alzheimer’s and dementia patients in the United States and Canada.

Leeza’s Care Connection: An educational and empowerment resource for people recently diagnosed with dementia, and their caregivers. Leeza Gibbons is the founder.

Dementia Specialist Consulting: Judy Berry provides seniors and their families & professional caregivers with assistance in achieving a continued independent living style, when possible, or help with transitions, and provide expert assistance with navigating the current fragmented healthcare system.

The Alzheimer’s Reading Room: Started by Bob DeMarco who was primary caregiver for his mother Dotty, this is a premier resource on the Internet for the most up-to-date information about dementia, with a particular emphasis on communicating with the person with dementia.

Alzheimer’s and Dementia Weekly: A weekly web-based newsletter with many articles and resources. You can subscribe and have it sent directly to your inbox.

Alzheimer’s Speaks: Lori La Bey writes and speaks about her experiences caring for her mother and brings in experts from around the world. You can listen to her interview interesting experts and people with dementia on her Internet radio show.

About Alzheimer’s and Dementia

Alzheimer’s Society of Canada: The local chapters are invaluable to both people with dementia and family caregivers. They provide many resources and workshops for caregivers and to those who have found out they have Alzheimer’s. While programs and services vary from province to province and chapter to chapter, look for the First Link program and also Minds in Motion.

Alzheimer’s Association: The Alzheimer’s Association provides a 24-hour help hotline to answer your questions, and local chapters provide many resources. A visit to your local chapter is a good first step if you discover that a loved one has Alzheimer’s or any form of dementia.

Murray Alzheimer Research and Education Program:MAREP is a major division of the Research Institute for Aging (RIA) in the Faculty of Applied Health Sciences, University of Waterloo, Waterloo, Ontario, Canada, and is located in the Lyle Hallman Institute for Health Promotion. MAREP’s mandate is to B.E.N.E.F.I.T. and enhance the lives of all those experiencing dementia.

Approaches to Care

A Spark of Life: Based in Australia, this approach helps to improve memory, language, communication, social interactions and behaviour.

Eden Alternative: Founded by Dr. William Thomas, this philosophy nourishes the spirit as well as the body, fights loneliness and boredom, provides people with dementia with opportunities to give as well as receive and with opportunities to continue growing through meaningful activity.

Pioneer Network: The centre of “person-centred care.”