Resources

People Living With Dementia

Dementia Mentors

If you or a loved one are living with the symptoms of dementia, you will be happy to know there is an excellent source of help and wisdom available online. The creators of this excellent resource have come together from all over the world. These folks are the experts, for they are all dealing with the effects of dementia. But the difference is that these people refer to themselves as “living well” despite their struggles! Their main goal? “To help those who are newly diagnosed and in the early stages of dementia.”

No matter what type of dementia related disease is involved, these mentors are there to lend a virtual hand. They have created a website that is simple and secure. This will connect PLWD to mentors, educational videos, memory cafes and other useful information. You will also want to check out the WRITINGS page to read submissions from PLWD or to contribute a message of your own.


In the Public Eye


Kenneth Capron

Ken Capron is a former CPA, Microsoft Engineer whose career ended 10 years ago when he received a dementia diagnosis. Ken noted that his home, the State of Maine, has significant shortages of geriatric care doctors and home care providers supporting people with dementia. Ken adds, “The most challenging is the issue of raising awareness of the illnesses that make up dementia. The stigma of that word, of getting a dementia-related diagnosis, won’t go away easily. But it is unquestionably a roadblock to early detection and treatment of this category of disease.” With the leadership of Donna Beveridge (another person with a demential diagnosis), they started the first “Memory Cafés” in Maine. The Memory Café is a social gathering of people-patients, caregivers, providers – who have a connection with dementia … and many questions about what is happening, what to expect, what has worked for others and what is next.

Ken is now taking it to the next level. Despite his diagnoses, he is building a solutions-focused organization with advisors from every sector of the Dementia Care community – patients, family members, caregivers, nurses, doctors, elder-care lawyers, media members, technology experts, activities specialists, therapists – every sector. The team behind him is growing and expanding, and they are ready to formalize their nonprofit standing. Pollination Project funds will be used to support MemoryWorks securing its 501c3 status.


Michael Ellenbogen

First diagnosed with Alzheimer’s disease at age 39, Michael Ellenbogen is a leading advocate for the education and eradication of this illness. Many people think Alzheimer’s disease affects just our senior generation, but they are so wrong. They refer to people like Michael as having Young Onset Alzheimer’s Disease (YOAD).

Fox News: Alzheimer's Disease at 39

Radio RMN: Michael Ellenbogen reveals the real story about Alzheimer’s


Sandy Halperin

A Florida activist, Alexander “Sandy” Halperin, DDS, was diagnosed with early-onset Alzheimer’s disease in 2010 at age 60. As a person living with dementia, Sandy has chosen to remain active as an alumni member of the National Early-Stage Advisory Group. He hopes to bring awareness to what he calls “invisible illnesses”. Sandy is compelled to be a part of the discovery of treatments, preventions and cures, as well as de-stigmatizing the diagnosis of dementia. “Partnering with FSU’s College of Medicine has been my best step in enhancing Alzheimer’s research funding”, he said.

CNN.com: SANDY'S STORY A Devastating Diagnosis

Sandy was the keynote speaker at the 2014 Dementia Action Alliance Summit in Washington, DC.  He made an impassioned plea for action and a call to Congress to step up the funding for a cure.

Sandy's Letter to President Obama on Alzheimer's and Other Dementias

FSU Foundation: The Alexander “Sandy” Halperin, DDS, Alzheimer’s Research Fund


Norman McNamara

A resident of Torbay, Devon, UK Norman was diagnosed with dementia at only 50 years of age. Whilst out shopping one day he was rudely spoken to by a shopkeeper and decided to change the way people see dementia and treat others. Norman began by asking his local shop staff to read two pieces of information so that they could better support people with dementia and their carers. He wrote the "Guide to Understanding Dementia" and put that together with "What is Dementia" written by the UK Alzheimer's Society. Two weeks later he returned and, if staff had read, awarded a Purple Angel Logo for their window. He has continued his efforts in creating a global symbol for awareness, hope, and empowerment. 

He is the founder of the UK Dementia Action Alliance

Dementia Documentary Featuring Norman MacNamara


Richard Taylor

Ten years ago, a noted neurologist told Richard Taylor, "You have dementia, probably of the Alzheimer's type". Six years ago, he discovered that thinking, speaking, and writing about what it was like for him to live with this condition had quite unexpectedly brought him a new sense of purpose to his life. Today, he speaks and writes of his experiences living with Alzheimer's from the inside out for two important reasons. First, in the hopes that his presentation will convince folks not living with dementia that folks who are living with dementia are and will always be whole and complete human beings. Still possessing all the needs and wants everyone who does not have dementia possesses. Second, he hopes that his witness will encourage others living with the disabilities associated with dementia to stand up and speak out. After all, if folks living with the symptoms do not speak out, how will anyone really know what it is like live with dementia?

Brilliant Image Productions:  Live Outside the Stigma


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Positive Approach to Care

Teepa Snow’s philosophy and education is reflective of her life-long journey professionally caring for and personally living with various forms of dementia. This person-centered approach evolved to meet the complex and unique needs of individuals using effective and structured technique. Teepa and her company strive to grow appreciation of differences that will lead to better care and support of those living with changing abilities.