Resources

Dementia Associations

Dementia is a Syndrome

It is Caused by Various Health Conditions


Lewy Body Association

The Lewy Body Dementia Association (LBDA) is a 501(c)(3) nonprofit organization dedicated to raising awareness of the Lewy body dementias (LBD), supporting people with LBD, their families and caregivers and promoting scientific advances. The Association's purposes are charitable, educational, and scientific. LBDA was formed by a group of caregivers who met in an online LBD caregiver support group. Discussions about the need of support for LBD caregivers and the lack of public awareness about LBD led to the organization's incorporation. The directors of the LBDA Board are located throughout the United States, and LBDA volunteers are from the United States, Canada, and the United Kingdom. The association consists of a dedicated group of people from all walks of life who understand the struggles of other caregivers due to their personal LBD experiences.


Alzheimer's Foundation of America

The mission of the Alzheimer's Foundation of America (AFA) is "to provide optimal care and services to individuals confronting dementia, and to their caregivers and families-through member organizations dedicated to improving quality of life". The Alzheimer's Foundation of America (AFA) was founded by a consortium of organizations to fill the gap that existed on a national level to assure quality of care and excellence in service to individuals with Alzheimer's disease and related illnesses, and to their caregivers and families.


Alzheimer's Association

The Alzheimer’s Association works on a global, national and local level to enhance care and support for all those affected by Alzheimer’s and other dementias. We are here to help. As the largest non-profit funder of Alzheimer's research, the Association is committed to accelerating progress of new treatments, preventions and ultimately, a cure.  Through our partnerships and funded projects, we have been part of every major research advancement over the past 30 years. 


Association for Frontal Temporal Degeneration

The Association for Frontotemporal Degeneration (AFTD) is a non-profit organization whose mission is to:

  • Promote and fund research into finding the cause, therapies and cures for frontotemporal degeneration
  • Provide information, education and support to persons diagnosed with an FTD disorder, and for their families and caregivers
  • Educate physicians and allied health professionals about frontotemporal degeneration and how to improve patient care
  • Bring about greater public awareness of the nature and prevalence of frontotemporal degeneration and the needs of those who are coping with it
  • Advocate with public officials and promote public and private programs that provide appropriate, affordable and high-quality, long-term health care and social services
  • Facilitate the international exchange of ideas

National Stroke Association

Vascular dementia (VaD) is a common post-stroke complication characterized by the loss of cognitive function or thinking abilities. VaD occurs when brain tissue is damaged because of reduced blood flow to the brain during a stroke or a series of strokes. As a result, the damaged brain tissue makes it difficult for the stroke survivor to process information. This can lead to memory loss, confusion, decreased attention span and problems performing everyday activities. Approximately 20 percent of stroke survivors have cognitive impairments after a stroke; the prevalence of post-stroke VaD is roughly 25 to 30 percent. The rate of VaD has declined in recent decades due to improved acute stroke care. However, the incidence of VaD increases with age, making stroke survivors aged 65 and over at a greater risk.

National Stroke Association’s mission is to reduce the incidence and impact of stroke by developing compelling education and programs focused on prevention, treatment, rehabilitation and support for all impacted by stroke. 


Parkinsons Disease Foundation

Parkinson’s disease is known primarily as a disorder that impairs movement. For some PWPs, however, there are other disabling symptoms of Parkinson’s. Coping with dementia, including difficulties with memory and slowed thinking or communication, is a challenge to PWPs and caregivers alike. Recognizing the signs and designing appropriate coping strategies can enhance a PWPs level of function as well as self-esteem. The Parkinson’s Disease Foundation (PDF) is a leading national presence in Parkinson’s disease research, education and public advocacy. We are working for the nearly one million people in the US who live with Parkinson’s by funding promising scientific research while supporting people living with Parkinson’s through educational programs and services.


Aphasia

The result of a stroke or brain injury, Aphasia affects a person's ability to communicate. It is important to remember that you are still a competent adult, you know what you want to say, you can make your own decisions and you are not deaf. Aphasia usually comes on suddenly but in rare cases it may develop gradually. This is called Primary Progressive Aphasia (PPA).

The National Aphasia Association (NAA) is a non-profit organization founded in 1987 by Martha Taylor Sarno, MA, MD,(hon) as the 1st National organization dedicated to advocating for persons with aphasia and their families. Several of our board members, including the President, are people with Aphasia or family members. Our goal is to provide access to research, education, rehabilitation, therapeutic and advocacy services to individuals with aphasia and their caregivers. The NAA acts as a syndicate of resources, promoting sense of community among individuals and caregivers.


ALS Association

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.Until recently, the damaging processes of ALS were considered specific to the motor system, sparing higher cortical functions associated with thinking, memory, and personality. Frontotemporal dementia is a change in personality and in mental processes. It appears in several degenerative diseases of the nervous system, such as Parkinson’s disease. Researchers are finding that this dementia appears to accompany ALS and may even precede it in some cases.

Leading the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig's Disease and their families to live fuller lives by providing them with compassionate care and support.


American Liver Foundation

Hepatic Encephalopathy, sometimes referred to as portosystemic encephalopathy or PSE, is a condition that causes temporary worsening of brain function in people with advanced liver disease. When your liver is damaged it can no longer remove toxic substances from your blood. These toxins build up and can travel through your body until they reach your brain, causing mental and physical symptoms of HE. The American Liver Foundation provides many resources and support services for people with HE and their family, friends and caregivers. 


Foundation for PSP CBD and related Brain Diseases

Progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple system atrophy (MSA), are little-known but disabling brain diseases, sometimes called atypical Parkinsonian disorders. These rare neurodegenerative diseases are often misdiagnosed as Parkinson's disease, amyotrophic lateral sclerosis (ALS), or Alzheimer’s disease. PSP, CBD and MSA lead to progressive decline, and although symptomatic treatment exists, there is no known cause or cure.

The Foundation for PSP | CBD and Related Brain Diseases, better known as CurePSP, assists patients and their families in their struggle against these debilitating diseases, increases public awareness, educates healthcare professionals, and supports research toward better diagnosis, effective treatments, and eventual cures.


Multiple System Atrophy

Support, education, research and advocacy are important because multiple system atrophy (formerly known as Shy-Drager Syndrome) is so rare (affecting approximately 50,000 Americans) that few patients, prior to diagnosis and few physicians have any knowledge of the disease. Because of the rarity and severity of the disorder, patients, their caregivers and family members can feel isolated and confused about how to deal with the condition. Likewise, the medical profession may have difficulty in dealing with the diagnosis and treatment of this rare illness. People affected by multiple system atrophy need a support system to help them deal with the many issues.


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Positive Approach to Care

Teepa Snow’s philosophy and education is reflective of her life-long journey professionally caring for and personally living with various forms of dementia. This person-centered approach evolved to meet the complex and unique needs of individuals using effective and structured technique. Teepa and her company strive to grow appreciation of differences that will lead to better care and support of those living with changing abilities.