Disease, Disorders, Medical Disciplines

Dementia Society of America

We Know You Matter®

aka Dementia Society of America

Doylestown, PA

Mission

EDUCATE and significantly raise awareness within the US/Canada to the spectrum of conditions collectively known as Dementia. PROVIDE relevant local resources, and create meaningful therapeutic moments for those living with Dementia, and their caregivers through non-medical programs that include music, movement, and the arts. RECOGNIZE exemplary Dementia caregiving, support and innovative care solutions. Our global vision: Know Dementia®. Our community commitment: We Know You Matter®.

Ruling Year

2014

Volunteer - President

Mr. Kevin Jameson DrHC

Volunteer - Vice President

Ms. Ann Redfield RN, MSN

Main Address

PO Box 600

Doylestown, PA 18901 USA

Keywords

Alzheimer's, Dementia, Picks, Lewy body, CTE, Frontotemporal, TBI, Traumatic, Brain, Injury, Cognitive, Impairment

EIN

46-3401769

 Number

4940485584

Cause Area (NTEE Code)

Alzheimer's (G83)

Alliance/Advocacy Organizations (E01)

Public, Society Benefit - Multipurpose and Other N.E.C. (W99)

IRS Filing Requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Social Media

Blog

Programs + Results

What we aim to solve New!

In the world today, and the U.S. specifically, there is a tremendous need for basic information regarding Dementia. In addition, individuals and families are looking for local resources to help provide care, services, products and planning. Lastly, we seek to create opportunities and moments of joy for those most in need - those living lives of isolation in nursing homes and other Dementia communities.

Our programs

What are the organization's current programs, how do they measure success, and who do the programs serve?

SOURCE: Self-reported by organization

Know Dementia®

Ginny Gives(TM)

Dementia SMART(R)

Where we workNew!

Our Results

How does this organization measure their results? It's a hard question but an important one. These quantitative program results are self-reported by the organization, illustrating their committment to transparency, learning, and interest in helping the whole sector learn and grow.

SOURCE: Self-reported by organization

Number of new clients within the past 12 months

TOTALS BY YEAR
Population(s) served

Females,

Males,

Families

Related program

Know Dementia®

Context notes

The number of people/families that we are able to provide with valuable Dementia education and/or local resource help.

Charting Impact

Five powerful questions that require reflection about what really matters - results.

SOURCE: Self-reported by organization

What is the organization aiming to accomplish?

What are the organization's key strategies for making this happen?

What are the organization's capabilities for doing this?

How will they know if they are making progress?

What have and haven't they accomplished so far?

The Dementia Society of America is aiming to make the national conversation around Dementia a natural, honest, and inclusive one. We seek to: (1) Empower people, no matter their situation, by helping them to listen, learn, and take action to better the world for themselves or those in their care. (2) Be inclusive of all Dementias, by expanding knowledge and creating a "big tent" community. (3) Provide life-enhancing programs that respect, stimulate and connect to the person within. (4) Recognize and promote exemplary caregiving, and creative and innovative entrepreneurship.

A central component of the Dementia Society of America's strategy is to make Dementia a less-threatening discussion in this country. We do that by employing open and honest dialogue; using positive and uplifting language to the degree possible; spreading messages of hope through action; using social media; having an easy-to-use web presence, and creating accessible awareness campaigns that make it simple to participate and contribute.

An example of our strategy is our annual step-counter campaign (STEP2RAISE) that encourages physical activity and social connection [brain health], and remembrances of those with Dementia in our lives past and present, through walking every day. Our initial goal was to walk across America, an aggressive 6 million steps. However, in 2015, we joined enough motivated "steppers" together, that we far exceeded our goal and achieved a combined 44 million steps, or 22,000 miles. It was an amazing feat! The strategy paid off... we found more supporters in that one event than ever before.

The Dementia Society of America's capabilities for delivering on its promised mission exist in its ability to leverage technology. When we work virtually as volunteers, we utilize state-of-the-art conveniences to connect and manage the day-to-day needs of the organization, and we deploy the power of the Internet to reach thousands, if not tens of thousands of people.

The biggest capability of our organization is a hidden gem: a volunteer-driven commitment across all of the leadership. It all starts at the top. If you want to get something done, and you don't have an endless supply of cash from an oil well, or a rich uncle to fund you, you need personal grit and determination to overcome obstacles, and naysayers. That's exactly what the Dementia Society of America strives to do. Capability, perseverance and the tenacity of leadership is infectious and triumphs over efforts flush with cash but with no burning desire. We have lived with and alongside Dementia, we know who, and how, it affects the lives of millions, we are determined to make a difference... today.

"It's been such a relief to talk with you." "I never really knew what Dementia was, I need to rethink how I talk about it with others." "Thank you, you're making a difference in the lives of our residents- they just beam, ear-to-ear, when they hear their music." "Really appreciate the connection you made for me and my family, I think we're heading in a better direction now."

These expressions of thanks and many many more are how we truly know we're making progress. Yes, we know we placed music and art programs in nursing and assisted-living facilities in 2015/2016 that brought life and light to over a thousand people living with Dementia and their caregivers. Yes, we know that we touched thousands of people through our outreach and STEP2RAISE campaigns. Yes, we know we've helped hundreds, likely thousands second-hand, with local resources and educational materials in 2015 and to date.

But the bottom-line for us is... did we help at least one person with some new knowledge, or some new experience, that transformed their day, today? The answer is almost assuredly "Yes!" everyday.

As the Dementia Society of America's founder's wife entered hospice in 2013, her Dementia had led the both of them through years of struggle and emotional pain, but it also had brought them closer in a way that made clear that life with Dementia was not the end of the road, but the beginning of a fantastic journey- where love conquered fear and knowledge begat calm.

Since those days, when the seeds of the Dementia Society were sown, it has been one advance after another in the development of a real and effective mission-based organization dedicated to the betterment of all in the Dementia community and beyond.

We've been cited in national publications, been asked to speak and represent ourselves at major conferences, and have garnered the respect and collaboration of other nonprofits in the Dementia community. We have, by sheer force of will, created and successfully completed a national awareness campaign that many in our "world" thought was not possible in the time-frame we envisioned. We have stood in the same rooms, and sat at the same tables as the biggest players in the Dementia nonprofit community, and we will continue to be questioners of the status quo and plain-spoken champions for an all-inclusive Dementia conversation.

And despite the accomplishments we've seen, we have not even scratched the surface of the demand for services, programs and support needed by the over 9 million people living with Dementia and the vast numbers more that care for, and about them.

In order to meet the growing demand it's an all-hands-on-deck imperative for each and every organization that benefits the Dementia community. It's a global crisis that must elicit the best in all of us to rise to the occasion and to create the best possible tomorrow's by taking the most meaningful actions today.

External Reviews

Financials

Dementia Society of America

Fiscal year: Jan 01 - Dec 31

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  • Address, phone, website and contact information
  • Forms 990 for 2017, 2016 and 2015
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Operations

The people, governance practices, and partners that make the organization tick.

Need more info?

FREE: Gain immediate access to the following:

  • Address, phone, website and contact information
  • Forms 990 for 2017, 2016 and 2015
A Pro report is also available for this organization for $125.
Click here to see what's included.

Board Leadership Practices

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section, which enables organizations and donors to transparently share information about essential board leadership practices.

SOURCE: Self-reported by organization

BOARD ORIENTATION & EDUCATION

Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?

No

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?

No

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?

Yes

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?

Yes

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?

No