The Lewy Body Dementia Association (LBDA) is a US nonprofit organization based in Lilburn, Georgia, and "dedicated to raising awareness of the Lewy body dementias (LBD), supporting people with LBD, their families and caregivers and promoting scientific advances". [1]
Through "outreach, education and research", their mission is to support people affected by LBD. [1]
According to a 2014 review, the LBDA provides services that aid society and families with LBD. They provide support and awareness, reduce stress on individuals and families with LBD, and may reduce use of healthcare. They help enable better diagnoses and better understanding of LBD. [2]
A 2013 journal review of treatment of dementia with Lewy bodies suggests that caregivers join support groups including the LBDA for helpful information. [3]
In 2018, the LBDA launched a collaboration of 24 US Research Centers of Excellence, coordinated by Mayo Clinic. [4]
The LBDA developed in 2003 [5] out of an online support group. [1] In 2008, it launched a network of support groups throughout the US. [5]
Dementia is the general name for a decline in cognitive abilities that impacts a person's ability to perform everyday activities. This typically involves problems with memory, thinking, and behavior. Aside from memory impairment and a disruption in thought patterns, the most common symptoms include emotional problems, difficulties with language, and decreased motivation. The symptoms may be described as occurring in a continuum over several stages. Dementia ultimately has a significant effect on the individual, caregivers, and on social relationships in general. A diagnosis of dementia requires the observation of a change from a person's usual mental functioning and a greater cognitive decline than what is caused by normal aging.
Dementia with Lewy bodies (DLB) is a type of dementia characterized by changes in sleep, behavior, cognition, movement, and regulation of automatic bodily functions. Memory loss is not always an early symptom. The disease worsens over time and is usually diagnosed when cognitive impairment interferes with normal daily functioning. Together with Parkinson's disease dementia, DLB is one of the two Lewy body dementias. It is a common form of dementia, but the prevalence is not known accurately and many diagnoses are missed. The disease was first described by Kenji Kosaka in 1976.
Lewy body dementias are two similar and common subtypes of dementia: dementia with Lewy bodies (DLB) and Parkinson's disease dementia (PDD). Both are characterized by changes in thinking, movement, behavior, and mood. The two conditions have similar features and may have similar causes, and are believed to belong on a spectrum of Lewy body disease that includes Parkinson's disease. As of 2014, they were more often misdiagnosed than any other common dementia.
Donepezil, sold under the brand name Aricept among others, is a medication used to treat dementia of the Alzheimer's type. It appears to result in a small benefit in mental function and ability to function. Use, however, has not been shown to change the progression of the disease. Treatment should be stopped if no benefit is seen. It is taken by mouth or via a transdermal patch.
The Alzheimer's Association is a nonprofit voluntary health organization that focuses on Alzheimer's disease care, support and research.
A caregiver, carer or support worker is a paid or unpaid person who helps an individual with activities of daily living. Caregivers who are members of a care recipient's family or social network, and who may have no specific professional training, are often described as informal caregivers. Caregivers most commonly assist with impairments related to old age, disability, a disease, or a mental disorder.
In medicine, a prodrome is an early sign or symptom that often indicates the onset of a disease before more diagnostically specific signs and symptoms develop. It is derived from the Greek word prodromos, meaning "running before". Prodromes may be non-specific symptoms or, in a few instances, may clearly indicate a particular disease, such as the prodromal migraine aura.
As populations age, caring for people with dementia has become more common. Elderly caregiving may consist of formal care and informal care. Formal care involves the services of community and medical partners, while informal care involves the support of family, friends, and local communities. In most mild-to-medium cases of dementia, the caregiver is a spouse or an adult child. Over a period of time, more professional care in the form of nursing and other supportive care may be required medically, whether at home or in a long-term care facility. There is evidence to show that case management can improve care for individuals with dementia and the experience of their caregivers. Furthermore, case management may reduce overall costs and institutional care in the medium term. Millions of people living in the United States take care of a friend or family member with Alzheimer’s disease or a related dementia.
Family caregivers are “relatives, friends, or neighbors who provide assistance related to an underlying physical or mental disability for at-home care delivery and assist in the activities of daily living (ADLs) who are unpaid and have no formal training to provide those services.”
Alzheimer's disease (AD) is a neurodegenerative disease that usually starts slowly and progressively worsens, and is the cause of 60–70% of cases of dementia. The most common early symptom is difficulty in remembering recent events. As the disease advances, symptoms can include problems with language, disorientation, mood swings, loss of motivation, self-neglect, and behavioral issues. As a person's condition declines, they often withdraw from family and society. Gradually, bodily functions are lost, ultimately leading to death. Although the speed of progression can vary, the typical life expectancy following diagnosis is three to nine years.
Sundowning, or sundown syndrome, is a neurological phenomenon associated with increased confusion and restlessness in people with delirium or some form of dementia. It is most commonly associated with Alzheimer's disease but also found in those with other forms of dementia. The term "sundowning" was coined by nurse Lois K. Evans in 1987 due to the timing of the person's increased confusion beginning in the late afternoon and early evening. For people with sundown syndrome, a multitude of behavioral problems begin to occur and are associated with long term adverse outcomes. Sundowning seems to occur more frequently during the middle stages of Alzheimer's disease and mixed dementia and seems to subside with the progression of the person's dementia. People are generally able to understand that this behavioral pattern is abnormal. Research shows that 20–45% of people with Alzheimer's will experience some variation of sundowning confusion. However, despite lack of an official diagnosis of sundown syndrome in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), there is currently a wide range of reported prevalence.
The Alzheimer Society of Canada (ASC) is a Canadian health charity for people living with Alzheimer's disease and other dementias. Active in communities right across Canada, the Society partners with Alzheimer Societies in every Canadian province to offer information, support and education programs for people with dementia, their families and caregivers. The Alzheimer Society of Canada acts as the national voice for the thousands of Canadians living with dementia and advocates on their behalf for positive change. The Society also funds young and established Canadian researchers working to find the causes and a cure through the Alzheimer Society Research Program.
Caregiver syndrome or caregiver stress is a condition that strongly manifests exhaustion, anger, rage, or guilt resulting from unrelieved caring for a chronically ill patient. This condition is not listed in the United States' Diagnostic and Statistical Manual of Mental Disorders, although the term is often used by many healthcare professionals in that country. The equivalent used in many other countries, the ICD-11, does include the condition.
Parkinson's disease (PD), or simply Parkinson's, is a chronic degenerative disorder of the central nervous system that affects both the motor system and non-motor systems. The symptoms usually emerge slowly, and as the disease progresses, non-motor symptoms become more common. Early symptoms are tremor, rigidity, slowness of movement, and difficulty with walking. Problems may also arise with cognition, behaviour, sleep, and sensory systems. Parkinson's disease dementia is common in advanced stages.
Nelotanserin is a drug developed by Arena Pharmaceuticals which acts as an inverse agonist on the serotonin receptor subtype 5-HT2A and was under development for the treatment of insomnia. It was shown to be effective and well tolerated in clinical trials, but development was halted in December 2008 because the substance did not meet the trial's effectiveness endpoints. Research continues on newer analogues which may potentially be more successful.
For patients with Alzheimer's disease, music therapy provides a beneficial interaction between a patient and an individualized musical regimen and has been shown to increase cognition and slow the deterioration of memory loss. Music therapy is a clinical and evidence-based intervention that involves music in some capacity and includes both a participant and a music therapist who have completed an accredited music therapy program.
The Alzheimer's Foundation of America (AFA) is an American nonprofit organization based in New York City whose mission is to provide support, services and education to individuals, families and caregivers affected by Alzheimer's disease and related dementias nationwide, and fund research for better treatment and a cure. AFA unites more than 2,000 member organizations from coast-to-coast that are dedicated to meeting the educational, social, emotional and practical needs of individuals with Alzheimer's disease and related illnesses, and their caregivers and families. Member organizations include grassroots Alzheimer's agencies, senior centers, adult daycare center, home healthcare agencies, long-term care residences, research facilities, and other dementia-related groups. AFA holds Charity Navigator's highest rating of 4 stars.
Parkinson's disease dementia (PDD) is dementia that is associated with Parkinson's disease (PD). Together with dementia with Lewy bodies (DLB), it is one of the Lewy body dementias characterized by abnormal deposits of Lewy bodies in the brain.
The Dementia with Lewy Bodies Consortium is an international multidisciplinary collaboration of researchers interested in the dementia with Lewy bodies. It first convened in Newcastle upon Tyne, England, in October 1995. Between 1995 and 2005, it issued three DLBC Consensus Reports on dementia with Lewy bodies.
Ian G. McKeith is a professor of Old Age Psychiatry at Newcastle University in Newcastle upon Tyne in the North-East of England. He is a Fellow of the Royal Society of Biology and a Fellow of the Academy of Medical Sciences.