Dassey - Our Turtle with Wings logoDASN International - Dementia Advocacy and Support Network
A worldwide organization by and for those diagnosed with dementia, working together to improve our quality of life.
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Living with Dementia: Resources for Living Well

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A Changing Melody Toolkit: How to plan a forum for people with dementia and their partners in care

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DASNI website translated in Belarus

DASNI is proud and pleased to announce that author Lisa Genova's book about early-onset Alzheimer's has attracted even greater attention as the movie, Still Alice. Adapted from her book, it has brought actress Julianne Moore a "best actress" Oscar in 2015.

Lisa Genova, long-time DASNI member and author of the New York Times bestselling novel, Still Alice, sought out DASNI in 2004 to learn about what life is like for persons with early onset Alzheimer's. DASNI members feel a parental pride in Still Alice because Genova, who is a neuroscientist, joined DASNI in her words, "to learn as much as I could about what it feels like to live with dementia from people who live with it, rather than from their caregivers or from medical professionals." DASNI was thrilled to find that Genova genuinely listened, really listened, to such an extent that a number of DASNI members think of themselves as "consultants" for her book.

What does it feel like when one is told that one is no longer oneself or when the high level skills one spends a lifetime to achieve evaporate? When people no longer speak to, but now through you, to someone else held responsible for your well-being? Genova addresses these and many other issues in her book.

It is quite a challenge for a writer to convey the thoughts and feelings of a person progressively losing thought and speech. Genova undertakes the challenge by writing Still Alice from Alice's point of view rather than from the point of view of others witnessing her decline. Using her neuroscientist's understanding, her huge compassion, and her ability to make personal relationships with struggling human beings, she makes real the interior lives of people otherwise unknowable to the general public.

Early diagnosis of dementia is essential to allow for maximum quality of life, and it requires the expertise of a neuropsychiatric physician who specializes in dementia. General practitioners may suspect dementia, but they refer a patient to a specialist. Any Alzheimer's Association can refer a person to the best specialists in its area. Assessing for additional conditions that may mimic or exacerbate dementia such as vitamin deficiencies, heart conditions, or sleep apnea should be pursued by family practitioners prepared to treat everything.

DASN International is an internet based support network established to:

  • Promote respect and dignity for persons with dementia
  • Provide a forum for the exchange of  information,
  • Encourage support mechanisms such as local groups, counseling groups and Internet linkages, and
  • Advocate for services for people with dementia
  • Assist people to connect with their local Alzheimer’s Association

Since its founding in 2000, DASNI has evolved as an international group of people with dementia.  Approximately one-third of members have dementia themselves.

DASNI activities currently include an Internet-based support group for people with various dementias and those involved with our well-being. DASNI has an email community. Twice-daily Internet chats in a chat room help ease the isolation of dementia and educates participants about living with their diseases.

The stigma of dementia is very real, very cruel and widespread.  There is also a lack of knowledge about dementias, the impact of new medications, and the support available.  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. We support a more accepting, more hopeful view of living with dementia. We encourage people to improve the quality of their own life by advocating for others. 

DASNI members have made presentations at Alzheimer’s Disease International conferences in Christchurch, New Zealand (2001), Barcelona, Spain (2002) and Santo Domingo, Dominican Republic (2003), Kyoto, Japan (2004), Istanbul Turkey (2005) and Berlin, Germany (2006).  Similar local and national presentations have been made throughout Canada, Australia, New Zealand, Europe, the Middle East, the United Kingdom, the United States and Brazil.

DASNI members have published books, given TV and radio interviews and written many articles on the subject of diagnosis and living with dementia.  Please our website for further information.

For local referrals to support groups and health care providers, and for more detailed information about the diseases that cause dementia, please contact your local Alzheimer’s Association.




Click here for a print version of the above information.

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