Dementia Action Alliance

Initial diagnosis and testing.  Learning about the latest treatments and medications.  Finding a local neurologist or support group.  Exploring home health, respite care and residential services in your area.  Planning financially for the cost of care.

If you are a person living with dementia or a care partner for someone living with dementia, it’s highly likely that some or all of the above questions (and many more) were on your “to-research” list at some point.

In this day and age the information super highway is chock full of articles, websites and reference materials in dizzying number address all of these aspects of dementia care and more.

What isn’t available (yet), is the answer to the following questions from the people that matter most (you):

  • What information would be most helpful for you?
  • What is the most comfortable and convenient method of accessing the information you want (on-line, in person)?
  • What are your priorities in terms of the type of resources you believe are needed.

Dementia Action AllianceThe non-profit Dementia Action Alliance (D.A.A.) is committed to helping people live fully with dementia and supporting those who care for them. We are a volunteer coalition engaged in changing our nation’s understanding of and attitudes about dementia through serving as a trusted source for education, conversations, and advocacy.

I joined The Dementia Action Alliance for two reasons.  The first thing I loved about them, is that while others are necessarily focused on spending their time and resources looking for a cure (don’t worry, I volunteer for them too!), the D.A.A. is all about helping people living with the disease right now.   Today.  This matters to me because the person I loved with Alzheimer’s/dementia passed away before many of the initiatives in progress could come to fruition.

The second thing I liked about this organization is that they aren’t directing people impacted by dementia; instead, they want their priorities to be determined by them.  The D.A.A. seeks your input in learning more about what you need and want as you navigate the unique path that is your journey through dementia.

The D.A.A. received a grant from the Harvey Picker Center of Innovation & Applied Research in Long-Term Care to gather feedback from people living in the United States with dementia as well as family and friend care partners, on their priorities and preferences for accessing and utilizing information resources.  This collective feedback will be used to determine how best to make resource materials about living well with dementia available for people across the country.

Now is the time to raise your voice.  We need you to tell us what would help you most.

Please complete our short 10 minute on-line survey regarding your priorities & preferences for information and resources about dementia care and services. The survey needs to be completed no later than June 26, 2015.             ​

CLICK ON THE SURVEY LINK THAT APPLIES TO YOU:

PERSON LIVING WITH DEMENTIA IN THE U.S.

FAMILY OR FRIEND CARE PARTNER  IN THE U.S.

All information will be kept confidential and only used to collectively inform the organizations charges with administering the resources that would be most meaningful to you.    Findings from the survey will be provided to policymakers, healthcare practitioners, service providers and organizations and will be posted on.    Findings from the survey will be provided to policymakers, healthcare practitioners, service providers and organizations and will be posted on http://daanow.org/survey/

One Comment

  1. Damian Murphy

    so encouraged to read of your survey. you are right to flag up how often the agenda of people with dementia and their families is not matched by those delivering services. I recently dared to question the extent to which a community mental health team for older people responded to the change in relationship dynamic that so often catches people out. I was taken aback by the defensive nature of their response, despite the project I presented to them. As I am neither US based nor have a relative receiving care in the US I cannot participate in your work but am happy to share this piece of work I have recently carried out. The short film of the ‘Getting Along’ programme can be found at https://www.youtube.com/watch?t=291&v=gEe9NbCq2Pg
    Many thanks and best wishes Damian Murphy.

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