Alzheimer's Association
55
"Up" is the number of experts who agree that the nonprofit has had the most impact in the
field. "Down" is the number of experts who disagree that the nonprofit has had the most impact in field.
Tags:
alzheimer's, services, care, research, support, dementia, brain health, caregivers, memory loss, awareness
Summary
Stories
Expert Reviews
Leadership
From the Nonprofit
Leadership
Harry Johns.
Harry Johns became president and chief executive officer of the Alzheimer's Association in September 2005. Since his arrival the Alzheimer's Association has built new momentum toward creating its Vision of a World Without Alzheimer's® through a number of innovative tactics: the first nationwide campaign to increase understanding and awareness about Alzheimer's disease; an emphasis on accelerated progress in treatment via…
See full bio.
Financial Data
Overhead Ratio:
26.48%
Total Revenue:
$219,439,581
From the Nonprofit
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Jan 20, 2012 |
The Alzheimer’s Association is the world’s leading voluntary health organization in Alzheimer’s care, support and research. Founded in 1980 by a group of family caregivers, the Association includes the national office in Chicago, the public policy office in Washington, D.C.,…
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Contact Info
Story:
Sandy has lived with Alzheimer’s for three years. This is her story: “I am 57 and was diagnosed in 2004 with early-onset Alzheimer's disease. I was a bank manager and was very active in my community and church. One afternoon, I left work and did not know how to get home. This was the start of a "downhill no return" into the Alzheimer's world. I am now in my world, a world of confusion, fatigue, and most days, in severe pain.
I know there are days that I am more confused than others, and there are some days I am more agitated than others. I used to be this very independent, overachiever. And now, I am this very dependent underachiever, which causes me much frustration. Where things used to be very easy for me, all things now I find very complicated – even the easiest task. My eyesight is unpredictable, so that leaves me with little reading time. But when I can read, I enjoy reading my Bible and spending time with God. I love it when my husband tells me it is time to go to church. There I find peace (even though sometimes it can be chaotic). I now have a part-time caregiver, and she has been a lifesaver for me. She gets me out of the house, and I try to with my time with her help others. I go to a support group meeting near my home, which has been very helpful. I am hoping there will be a support group for early-onset Alzheimer's disease coming to my area very soon, and I am looking forward to it. I have a husband of 38 years that is very supportive, even though I know I put lots of pressure on him. He tells me he can handle it, and I love him even more. We have a 5th wheel camper, and we love traveling when we can. He is still employed, but we travel to the mountains and to a local lake where we can fish for crappie, which we both love to do. We own a pontoon boat due to me and my disorientation; I can fish from it much better. We love spending time with our grandchildren. We have three (two boys, one little girl and another due in September). We have two daughters who are a great support to us, but we try not to put too much pressure on them because they have their husbands, work and children. I have autonomic neuropathy and peripheral neuropathy, which gives me much leg and arm pain. This complicates things, but I am a fighter. I have much determination, so I keep on fighting and keep on going. God is good, and he will always remain on his throne. There is where I find my peace and draw my strength. I never have what people call normal days, but each day is a day in its own and I thank God for every day. He gives me as someone else stated (which I can't remember who), "I am thankful for this day God has granted me on this side of the soil." Another one of my favorite's is, "This is the day that the Lord has made. Let us be glad and rejoice in it."
Expert Reviews of Alzheimer's Association
Evidence of Impact Summary:
The Alzheimer's Association has successfully brought Alzheimer's disease to the public consciousness and has provided meaningful services that have supported those with the disease as well as their families. This organization has been a trusted national leader on the issue and has offered helpful services to other agencies working in this field.See expert comments.
Organization Strengths Summary:
Experts have noted that this organization's major strengths are its effective outreach and marketing operations, its collaborative work with experts in the field and other local organizations, and its high visibility among the public.See expert comments.
Areas for Improvement Summary:
The areas in which the Alzheimer's Association can improve are in its internal organizational structure, the way in which it communicates with the public, and in the partnerships it seeks out.See expert comments.
Expert Comments: Evidence of Impact
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Wide Array of Important Services |
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I see their impact as two-fold: 1. The Alzheimer's Association advocates for adequate care and the search for a cure for the disease; and 2. there are a lot of families across the country that would be absolutely lost without the support and information provided by the Alzheimer's Association, both nationally and at the local affiliate level. | ||
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They are good at providing respite, caregiver support, and leading advocacy. | ||
Successful Advocacy Efforts |
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In terms of their advocacy, they have had an influence on federal funding for research and have increased support for services from federal agencies for Alzheimer's disease care, direct funding of research, and public education. | ||
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They do cutting edge research and advocacy. They have great marketing tools and messaging, and they put a public face on Alzheimer's disease. | ||
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They have provided successful advocacy for a national plan for Alzheimer's research. | ||
Great Responsiveness |
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It has been able to change to respond to research, new on the ground knowledge, and listen to the families and those living with the disease. | ||
Good Collaboration with Other Organizations in the Sector |
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The Alzheimer's Foundation of America maximizes funds spent on program services and minimizes administrative services. I lead an Alzheimer's Caregivers Support Group, and the Alzheimer's Foundation offers a toll-free helpline with counseling by licensed social workers, educational materials and helps fund professional education and training that I have taken advantage of. | ||
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They have been successful in partnering with the local chapter for education and training. | ||
Skilled at Raising Awareness |
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There are many serious illnesses and challenges that people face when they get older, but they have managed to bring national attention to a particularly horrible disease. | ||
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This organization has raised the public recognition of mental illness in general and Alzheimer's specifically. It has taken a "dirty family secret" and given it status as a credible health condition with signs, symptoms and, treatments. | ||
A Strong National Leader |
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They are the leading organization related to Alzheimer's disease. | ||
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This association is the go-to source for current information about Alzheimer's disease, research and clinical drug trials, prevalence rates, and funding opportunities. | ||
Excellent Educational Materials & Support |
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They provide excellent educational materials at the national level and excellent support to individuals and training excellence at the state and regional levels. | ||
Strong Advocacy Organization |
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They are a strong advocacy organization that offers training to local citizens to become better advocates. They support early diagnosis research and treatment. Key leaders who are now being appointed to serve on NAPA. | ||
Great Advocacy & Research |
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They have great education and outreach. I love their support of research. | ||
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Alzheimer's is a key under-addressed issue for the aging population. More resources are needed in this field to make people aware of and engaged in the issue are key to success. They have an outstanding leadership in advocacy and research. | ||
High Visibility |
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They are a leader in driving issues for older people. | ||
Helpful to Family Caregivers |
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Their information and resources provided for caregivers make a huge contribution to families struggling to care for loved ones, i.e., local and online support groups. They are excellent advocates for research and new treatment strategies on national and state levels. They have strong public awareness and education programs. | ||
Expert Comments: Organization Strengths
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Foundation Professionals (F)
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Researchers and Faculty (R)
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Nonprofit Senior Staff (N)
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Other (consultants, journalists, policy makers) (O)
Connections to Experts and Local Partners |
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Their information-sharing with partner organizations is a strength of theirs. | ||
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Their strengths include their cope, profile, and connections with the research community. | ||
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The organization is well-run and provides support to chapter sites throughout each state. They also publish a well-respected and peer-reviewed journal. | ||
Effective Outreach and Marketing |
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They have strong marketing and advocacy outreach. | ||
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The strength of this organization is the marketing they do so the issues are known in the community. They also utilize many volunteers that help support the organization, as well as excellent professional staff who are knowledgeable. | ||
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They have been effective in reaching out to the public, co-hosting a lecture with national speakers, and fundraising to contribute to research on a national level. | ||
High Visibility |
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They have been working hard to keep this sometimes frightening issue at center stage. | ||
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They have established high recognition and give support to caregivers, as well as for older adults with dementia. | ||
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Because of their visibility, everybody has heard of Alzheimer's disease. Most medical communities have provisions or therapies specific to Alzheimer's. | ||
Great Leadership |
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Their leadership and marketing seemed to have propelled them to the next level. | ||
Strong Operations and Organization |
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Their regional offices, fundraising, and care consultation model are their main strengths. | ||
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They excel because of their leadership, research and strategic planning. | ||
Expert Comments: Areas for Improvement
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Foundation Professionals (F)
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Researchers and Faculty (R)
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Nonprofit Senior Staff (N)
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Other (consultants, journalists, policy makers) (O)
Greater Internal Cohesion |
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The coordination with local and state Alzheimer’s Association units could be stronger. | ||
Greater Diversity of Outreach |
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They should increase outreach to families of limited means and multicultural groups. They can also increase the dollars raised for direct service -- care consultation and habilitation. | ||
Better Communication with the Public |
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The Foundation could improve the communication to the public. Often the staff is so busy, messages are not answered on a timely basis. | ||
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There have been times when emails to the national chapter have not been responded to. | ||
More Partnerships |
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I think their partnership models could improve. They might consider partnering with other organizations within the field of aging to maximize their impact, especially in a challenging economy like this one. | ||
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Organizational leadership could put more emphasis on building collaborations with professionals. They choose one provider, who is saturated, at the exclusion of others. Few women are in leadership positions. | ||
More Funding |
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They should have additional funding for caregiver support and respite programs. | ||
Increased Scope of Issues |
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Advocacy and education efforts could expand the focus to other related types of mental illness. | ||
Focus on Alzheimer Sector |
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They do not play with others. They have abandoned the sector. They need to come back to taking a leadership role. | ||
Make Inclusion/Diversity More Central |
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I think they appear fairly conservative and could make inclusion/diversity a more central mandate. | ||
More Advertising |
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They provide good services but more people need to know about them. | ||
More Focus on Vulnerable, Frail, Older Adults |
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The Alzheimer's Association seems to be another powerful group. They do not seem to participate consistently with the Leadership Council of Aging Orgs or to form partnerships as well as when Brenda Sulick was their Director of Federal Advocacy. Also, I was on the Hill a few months ago and heard from a high-level Hill staffer that they did not emphasize protection of Medicaid in their advocacy day. I believe they should advocate more forcefully for the most vulnerable, frail older adults - those on Medicaid who are living in nursing homes or receiving LTSS in their homes. | ||
Emphasis on Advertising |
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Their advertising leads to belief that they are beneficial. | ||
Leadership
Harry Johns
President and CEO
President and CEO
From the Nonprofit
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Jan 20, 2012 |
The Alzheimer’s Association is the world’s leading voluntary health organization in Alzheimer’s care, support and research. Founded in 1980 by a group of family caregivers, the Association includes the national office in Chicago, the public policy office in Washington, D.C., and chapters in communities across the country.
Alzheimer’s disease is both a global and national epidemic. Worldwide, more than 35 million people are living with the disease. In the United States alone, an estimated 5.4 million people have Alzheimer’s, and nearly 15 million are serving as their caregivers. Alzheimer’s is the only cause of death among the top 10 in the United States without a way to prevent, cure or even slow its progression. The Alzheimer’s Association strives to address this epidemic by providing information, education and support for millions of individuals, caregivers and medical professionals who face dementia every day. We provide care and support across the country. • Our 24/7 Helpline (1.800.272.3900) offers free support and information on a variety of topics, including treatments and clinical trials, care strategies, and legal, financial and housing decisions. • Our award-winning website at www.alz.org is a rich resource that helps inform and educate. • Medic Alert® + Alzheimer’s Association Safe Return® is a 24-hour nationwide emergency response service for individuals with Alzheimer’s or related dementia that wander or who have a medical emergency. • The Alzheimer’s Association Green-Field Library, the nation’s largest devoted to Alzheimer’s disease and related dementias, provides reference and research services accessible virtually. • Our local chapters host thousands of support groups and educational sessions in communities nationwide. We advance research into methods of prevention, treatment and ultimately, a cure. • The Alzheimer’s Association is the largest nonprofit funder of Alzheimer’s disease research. Through our International Research Grant Program, we have committed more than $292 million to 2,000 best-of-field grant proposals since 1982. • The Alzheimer's Association International Conference (AAIC) is the world's largest conference of its kind, bringing together researchers from around the world to report and discuss groundbreaking research and information. • We lead the World-Wide Alzheimer’s Disease Neuroimaging Initiative (WW-ADNI) a global consortium of international investigators working to predict and monitor the onset and progression of Alzheimer’s. We advocate for the needs and rights of people facing Alzheimer’s. • Through our efforts, we have helped pass landmark legislation such as the National Alzheimer’s Project Act, mandating a coordinated national plan to address Alzheimer’s disease. When approved, the plan should accelerate the development of treatments, focus and coordinate federal efforts, and improve early diagnosis and care coordination. • We call for an increased commitment to increased research funding from the federal government. Currently, for every $2.80 that Medicare and Medicaid spend caring for someone with Alzheimer’s, the federal government invests only $.01 on Alzheimer’s research. • We demand better access to diagnosis and care planning. Unfortunately, most people with Alzheimer’s disease and other dementias have not been diagnosed, preventing them from accessing the best treatments and planning for the future. Join the cause. Visit us at alz.org. • Connect with a local chapter and participate in a support group, attend one of our educational workshops or volunteer within your community. • Advocate for those affected by Alzheimer’s and urge legislators make the disease a national priority. • Participate in Walk to End Alzheimer’sTM, the nation’s largest event to raise awareness and funds for Alzheimer’s care, support and research. • Donate to advance vital research and further care and support programs. |


