Disease, Disorders, Medical Disciplines

Dementia Society of America

We Know You Matter®

Doylestown, PA   |  www.dementiasociety.org

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 info

2014

Volunteer - President

Mr. Kevin Jameson DrHC

Volunteer | Vice President

Ms. Ann Redfield MSN. RN

Main address

PO Box 600

Doylestown, PA 18901 USA

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EIN

46-3401769

Cause area (NTEE code) info

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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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

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

SOURCE: Self-reported by organization

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

Know Dementia®

Dementia & Brain Health Awareness education, campaigns, materials, and web-based resources.

Population(s) Served
Aging, elderly, senior citizens
General/Unspecified

Life-enrichment programs are provided to those typically living within secure Dementia Units (and their caregivers) within nursing homes and assisted living communities. Our programs are oriented towards music, the arts, sensory stimulation, and movement.

Population(s) Served
Aging, elderly, senior citizens
General/Unspecified

Recognition is provided to those acting as caregivers. We also recognize those who have passed away with Dementia through no-cost online memorials for the families.

Population(s) Served
Aging, elderly, senior citizens
General/Unspecified

Recognition is provided to researchers and institutions, as well as to persons or organizations that perform basic to advanced research intended to benefit those in the Dementia community through possible cures and meaningful medical therapies.

Population(s) Served
Aging, elderly, senior citizens

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of new clients within the past 12 months

This metric is no longer tracked.
Totals By Year
Population(s) Served

Females,Males,Families

Related Program

Know Dementia®

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

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

Charting impact

SOURCE: Self-reported by organization

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

What is the organization aiming to accomplish?

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. <br/><br/>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.<br/><br/>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."<br/><br/>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.<br/><br/>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.<br/><br/>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.<br/><br/>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.<br/><br/>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.<br/><br/>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.

Financials

Dementia Society of America
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Operations

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

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.

Dementia Society of America

Board of directors
as of 3/23/2020
SOURCE: Self-reported by organization
Board chair

Mr. Kevin Jameson

Dementia Society of America

Term: 2013 -

Blaine Greenfield

Retired

Ann Redfield

Merck

Lilly Roth

AMM

Jeffrey Moyers

PNC

Kevin Jameson

DSA

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and 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 and 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

Organizational demographics

SOURCE: Self-reported; last updated 01/10/2020

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 01/10/2020

Policies and practices developed in partnership with Equity in the Center, a project that works to shift mindsets, practices, and systems within the social sector to increase racial equity. Learn more

Data
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.

Keywords

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