Support Resources For Lewy Body Dementia Patients And Caregivers
Lewy body dementia is the second-most common type of progressive dementia after Alzheimer's disease, affecting millions worldwide. It can create a variety of cognitive and emotional challenges for individuals as their brains accumulate abnormal protein deposits known as Lewy bodies, which can disrupt the brain's normal functioning. This condition is often initially mistaken for Alzheimer's disease or Parkinson's disease due to overlapping symptoms.
Living with Lewy Body dementia disease
Living with dementia typically means experiencing daily symptoms that affect memory, movement, and mood. Resources are available to help support those affected by Lewy body dementia, including the individuals themselves and their families or caregivers. Various organizations aim to provide education on the condition and increase the availability of treatment; we’ll explore some of these here.
Understanding Lewy body dementias (LBD) and the role of lewy bodies
Lewy body dementia is a progressive brain disorder. The cause of this type of dementia is not fully understood, but it's known to occur when abnormal protein deposits called Lewy bodies accumulate in brain cells. These deposits interfere with neurotransmitters vital for cognitive function, behavior, and movement.
Challenges of Lewy body dementia diagnosis
The effects of the condition go beyond cognitive symptoms; they also include problems with the autonomic nervous system. Symptoms like visual hallucinations, movement problems similar to those seen with Parkinson's disease, and changes in alertness are common with Lewy body dementia. This unique combination of symptoms and the varying course of the disease set it apart from other forms of dementia.
Some other key symptoms and challenges related to Lewy body dementia may include:
- Rigidity and lack of fluid movement
- Balance problems, potentially leading to falls
- Blood pressure drops upon standing
- Difficulty with bowel and bladder control
- Sleep disorders, including REM sleep behavior disorder
These varied symptoms often overlap with other conditions, such as Parkinson's disease and Alzheimer's, making the diagnosis of Lewy body dementia particularly challenging. Lewy body dementia can be a demanding condition both for those diagnosed and their caregivers.
Resources for those with Lewy body dementia
Looking for support for the challenges of Lewy body dementia can be overwhelming, but there are organizations dedicated to providing information, resources, and support for those affected by it. Below are a few examples.
The Lewy Body Dementia Association: Support for LBD
The Lewy Body Dementia Association (LBDA) is a 501(c)(3) nonprofit organization committed to raising awareness about risk factors, supporting individuals with Lewy body dementia and their caregivers, and promoting research advances. Founded by caregivers, LBDA offers resources such as a helpline, educational materials, and support group directories. The association emphasizes diversity, equity, and inclusion in research and aims to provide quality support and resources for finding clinical care.
The Lewy Body Dementia Resource Center: Diagnosis and support for caregivers
The Lewy Body Dementia Resource Center (LBDRC), a nonprofit organization, supports patients and their families by providing information about the condition, including symptoms and management strategies. Founded by former care partners of patients with Lewy body dementia, the center also offers educational programs and caregiver support groups. Their mission is to raise awareness of the disease among healthcare professionals and the public, advocate for research, and promote early diagnosis to improve quality of life.
Alzheimers.gov: Resources for Lewy body dementias
Alzheimers.gov can be another key resource for understanding dementia, including Lewy body dementia, and they also offer materials to help with the cognitive and behavioral symptoms of this type of condition. On their website, you can find information on dementia care, clinical trials, tips for caregivers, and resources for healthcare professionals.
The National Institute of Neurological Disorders and Stroke (NINDS): Lewy body disease
The National Institute of Neurological Disorders and Stroke (NINDS) focuses on research and education. Their website explains neurological conditions and directs visitors to clinical trials, which might offer new avenues for managing the disease. NINDS supports and performs a wide range of neuroscience research and provides funding for training programs to develop a skilled healthcare workforce. They also work to quickly share scientific discoveries with the public and healthcare professionals.
The Lewy Body Society: Understanding Lewy bodies and dementia
The Lewy Body Society advances research and raises awareness about Lewy body dementia. They support the research community by helping promote their work and running regular funding rounds for grants. Since 2007, they have funded nearly £2.2 million in research. As a member of the Association of Medical Research Charities, their grant process is rigorously overseen by a specialist advisory committee.
The National Institute on Aging
The National Institute on Aging (NIA), part of the National Institutes of Health (NIH), was established in 1974 to improve the health and well-being of older adults. The NIA conducts extensive research on aging, including genetic, biological, clinical, and social aspects, and is the lead federal agency for Alzheimer’s disease and related dementias. They provide valuable resources on Lewy body dementia symptoms, treatment options, and caregiver support to enhance quality of life for those affected. The NIA also supports scientific initiatives and disseminates information to the public and the research community.
Additional resources for caregivers
Caring for someone with Lewy body dementia often involves many challenges that can be physically, emotionally, and mentally taxing. For one, caregivers may face problems related to managing an individual’s changing cognitive abilities, hallucinations or delusions, and unpredictable mood swings. In addition, the need for constant supervision and assistance with daily activities can lead to caregiver burnout.
The Administration for Community Living
The Administration for Community Living (ACL) supports caregivers of individuals with disabilities and of older adults by providing resources and assistance programs. They help caregivers navigate daily tasks, understand service options, and get connected with community-based support. These offerings may help both caregivers and those they care for enjoy better quality of life.
Aging Life Care
Aging Life Care provides resources and support to care managers who assist older adults, including those with Lewy body dementia. Their members are healthcare professionals experienced in addressing the challenges associated with aging and the specific needs of those facing memory loss and cognitive decline. They offer strategies for long-term care planning and day-to-day care.
Caregiver Action Network
Caregiver Action Network supports those caring for loved ones with chronic illnesses, disabilities, or aging-related challenges. They offer education, resources, and advocacy to help caregivers manage their responsibilities and address their needs as well as those of the people they care for.
Seeking support through therapy
Family members and caregivers of those with Lewy body dementia can face many emotional challenges, which is why therapy is often recommended. Speaking with a compassionate therapist may help an individual receive emotional support, process their feelings, and find healthy ways to manage stress. If their caregiving schedule makes attending in-person sessions difficult, they might pursue online care instead.
Online therapy for caregivers' mental health
Studies suggest that online therapy can be effective in assisting caregivers who may be experiencing mental health challenges. Virtual sessions can provide ongoing support regardless of location or physical restrictions, potentially improving coping skills and quality of life for both caregivers and those they care for. Through a platform like BetterHelp, you can get connected with a licensed therapist and meet with them from anywhere you have an internet connection. This flexibility may make therapy easier to participate in for those with caregiving responsibilities and busy schedules.
Takeaway
- Previous Article
- Next Article