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Lewy Body Dementia Support Group

How Is Lewy Body Dementia Diagnosed

Lewy Body Dementia Support Group Meeting 03/12/19

Dementia with Lewy bodies is often difficult to diagnose because its early symptoms may resemble those of Alzheimers, Parkinsons disease or psychiatric illness. As a result, it is often misdiagnosed or missed altogether. As additional symptoms appear, it is often easier to make an accurate diagnosis.

The diagnosis of LBD is made on the basis of the symptoms particularly persistent visual hallucinations, fluctuation in cognition with pronounced variations in attention and alertness and the presence of the stiffness and shuffling walk of Parkinson’s.

The presence of supportive features such as postural instability, repeated falls, excessive daytime sleepiness and autonomic dysfunction such as blood pressure variation, constipation, urinary problems, and sweating abnormalities further support a diagnosis of LBD. Examining an individual with suspected LBD includes looking for orthostatic vital signs to investigate autonomic dysfunction.

Since cognitive features are an important aspect of diagnosis, cognitive screening is done using either the Montreal Cognitive Assessment Test or the Mini-Mental State Examination . Evaluation for Parkinsonism includes observation for tremors, assessment of rigidity and gait.

New brain imaging tests can also help. Researchers are studying ways to diagnose LBD more accurately in the living brain. Certain types of neuroimaging PET and SPECT have shown promise in detecting differences between dementia with Lewy bodies and Alzheimers disease.

Are You The Family Caregiver Of Someone Who Has Been Diagnosed With Lewy Body Dementia

Lewy body dementia is a type of progressive dementia that leads to a decline in thinking, reasoning and independent function. This support group is a collaborative effort between the Mary S. Easton Center for Alzheimer’s Research and Care at UCLA and the UCLA Alzheimer’s and Dementia Care Program. It is FREE for family caregivers seeking a supportive environment in which to give and receive emotional and practical support from others who are on the same journey of caring for someone with Lewy body dementia.

Group facilitator: Barbara Hament, LCSW

Please visit our Community Calendar for upcoming events.

Meetings:

What Are The Common Symptoms Of Lewy Body Dementia

This condition impairs thinking, such as memory, executive function , or the ability to understand visual information. People with LBD may have fluctuations in attention or alertness problems with movement including tremors, stiffness, slowness and difficulty walking hallucinations and alterations in sleep and behaviour.

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Lewy Body Dementia Support And Wellness Group For Patients Families And Care Partners

Connect With Us

3 hours ago

LBDA offers many free resources and materials to help provide education and assistance to those with LBD, their loved ones, caregivers, and medical professionals. Download these great resources, and more, on our website today at www.lbda.org/order-lbda-materialsSee MoreSee Less

American Parkinsons Disease Association

Lewy Body Dementia

Key Specs

  • Membership fee: Free
  • Structure: In-person and online support groups, fitness classes
  • Details: Offers a network of local chapters and virtual events, resources created specifically for veterans and first responders, and fitness and dance classes on YouTube and via Zoom.
  • Things to consider: There are minimal fees for some classes.

The American Parkinsons Disease Association provides a variety of support groups and resources for Parkinsons disease patients and their family members and caregivers, everything from a support forum called Smart Patients to an Ask the Doctor section aimed at answering any question or concern you may have.

The APDA offers a nationwide search page to find local, in-person support group meetings for Parkinsons patients and their caregivers. Fitness classes for people with Parkinsons are available nationwide and, although there’s a fee involved, the APDA can help those who need financial assistance.

There are also resources for those with early-onset Parkinsons, veterans with Parkinsons, Spanish speakers, and more.

Also Check: Which Of The Following May Be Protective Against Alzheimer’s Disease

Discuss Lewy Body Dementia Diagnosis With Family

Not all family members may understand or accept LBD at the same time. This can create conflict. Some adult children may deny that their parent has a problem, while others may be supportive. It can take a while to learn new roles and responsibilities.

Family members who visit occasionally may not see the symptoms that primary caregivers see daily and may underestimate or minimize your responsibilities or stress. Professional counselors can help provide guidance on how families can work together to manage LBD.

Although LBD and Alzheimer’s disease are different disorders, they share similar family concerns. For more information, read Helping Family and Friends Understand Alzheimer’s Disease and Helping Children Understand Alzheimer’s Disease.

Before Trying Drug Treatments

Treatment of DLB symptoms with drugs often takes some trial and error to get right. This is because everyone responds differently to medication, and there is not much evidence about what works well.

Drugs for improving movement may worsen mental abilities and can make hallucinations worse. There can also be serious risks for a person with DLB if they are treated with medications known as antipsychotics.

If a person goes into hospital or sees a new doctor, the person or their family should check that medical staff know that the person has DLB . This diagnosis should be clearly recorded in the persons notes.

This is important because people with DLB can have a serious reaction to antipsychotic medication that is usually safe for people with other types of dementia to take.

Drugs for concentration problems

Some drugs can help to manage symptoms for a while. These drugs may help some people with DLB improve their attention and alertness, as well as help with problems such as thinking more slowly. They are:

  • donepezil

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Mccormick Lewy Body/parkinsons Disease Dementia Caregiver Support Group

This group addresses the particular challenges of caring for someone with Lewy Body/Parkinsons Disease dementia, which differs in many ways from the treatment approaches used for the more common types of dementia, such as Alzheimer disease. Professional social workers guide these helpful and supportive discussions that are informed by medical and behavioural experts.

Meetings:

Third Wednesday of each month except July and August.Pre-registration is required to participate. Please register by calling a social worker at 519-439-9336 or e-mailing .

Caring For A Person With Lewy Body Dementia

Lewy Body Dementia LBD Support Group Webinar – 15th May 2020

On this page:

As someone caring for a person with Lewy body dementia , you will take on many different responsibilities over time. You do not have to face these responsibilities alone. Many sources of help are available, from adult day centers and respite care to online and in-person support groups.

Below are some actions you can take to adjust to your new roles, be realistic about your situation, and care for yourself.

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Symptoms And Diagnostic Criteria For Dementia With Lewy Bodies

The symptoms and diagnostic criteria for Dementia with Lewy Bodies are different than those for Parkinsons Disease Dementia . Here we cover DLB.

The source of these criteria is Diagnosis and Management of Dementia with Lewy Bodies: Third Report of the DLB Consortium, McKeith et al, Neurology, December 2005. While only the abstract is free, the full article is available for purchase.

Required Symptoms
  • One of three core features
  • At least one suggestive feature

Many Faces Of Lewy Body Dementia

This January 2007 family conference at the Coral Springs Medical Center in Florida was recorded. The presentations by psychiatrist Dr. Jonathan Stewart and neurologist Dr. Jay Van Gerpen are excellent.

The diagnosis of either disease depends on the symptoms present. There are three classes of diagnosis:

  • Definitive
  • Probable
  • Possible

Because various disorders have been identified and characterized at different times by different researchers, this framework is not universally used to define disorder symptoms and diagnostic criteria.

The two sets of diagnostic criteria are for what we might refer to as pure DLB or pure PDD. In most brain bank studies, those with Lewy Body Dementia also tend to have Alzheimers pathology, vascular pathology, or other co-occurring pathologies. The diagnostic criteria cannot account for mixed dementia, where more than one type of dementia occur simultaneously.

It is technically inaccurate to say that someone has both Parkinsons Disease and Lewy Body Dementia or that someone has Parkinsons Disease with Lewy Bodies. The most common Lewy body disease is Parkinsons Disease. In terms of brain pathology, the key difference between Parkinsons Disease and Dementia with Lewy Bodies / Parkinsons Disease with Dementia is where in the brain the Lewy bodies are to be found. In PD, Lewy bodies are in the brainstem. In DLB or PDD, Lewy bodies are diffuse throughout the cortex or in a transitional stage between the brainstem and the cortex.

Recommended Reading: How To Deal With A Parent Who Has Dementia

Itn Mens Caregiver Support Group Program

ITN seeks to help men build their communication skills to become better caregivers. This is done by learning to share their stories with others, developing abilities to cope, making flexible and realistic plans, and gaining confidence as a caregiver. ITN was created as a step-by-step guide for men to develop a caregiver support group within their own communities.

Centers For Medicare & Medicaid Services

Diagnosis: Lewy Body Dementia, Parkinson

Ask Medicare will help family caregivers access and use valuable healthcare information, services, and resources. This new CMS initiative will feature a one-stop Web page for caregivers, providing easy access to useful information about Medicare and other essential resources to help with family caregiving including links to key partner organizations that assist caregivers and beneficiaries, and will present personal stories from caregivers in the community.

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Educate Others About Lewy Body Dementia

Most people, including many health care professionals, are not familiar with LBD. In particular, emergency room physicians and other hospital workers may not know that people with LBD are extremely sensitive to antipsychotic medications. Caregivers can educate health care professionals and others by:

  • Informing hospital staff of the LBD diagnosis and medication sensitivities, and requesting that the person’s neurologist be consulted before giving any drugs to control behavior problems.
  • Sharing materials with health care professionals who care for the person with LBD. Materials are available from NIH, as well as the Lewy Body Dementia Association and the Lewy Body Dementia Resource Center.
  • Teaching family and friends about LBD so they can better understand your situation.

A New Approach To Lewy Body Dementia Support

In this article, researcher Alison Killen describes a new support group she has established for people living with Lewy body dementia and their families, and why she wants these groups to be available in all areas.

I work as a researcher at Newcastle University and I am also training to be a health psychologist. My particular interest is in long-term health conditions, and how changes people make to the way they behave, can help them feel more able to cope. I work with Professor John-Paul Taylor who runs one of very few specialist clinics for people with Lewy body dementia Working in this clinic sparked my interest in researching the disease.

Those who responded to the survey or were interviewed wanted to meet other people in a similar situation. They wanted to find out about DLB in small groups close to where they lived. They did not feel it was acceptable to be given information about Alzheimers disease or general dementia by health care professionals. They often did not want to attend memory groups or information groups that that covered all types of dementia. They also wanted more people to understand that DLB has many symptoms that people with other types of dementia rarely experience.

I wanted to find out four things:

  • Killen, A., Flynn, D., De BrĂșn, A., OBrien, N., OBrien, J., Thomas, A., McKeith, I. and Taylor, JP. . Support and Information Needs Following a Diagnosis of Dementia with Lewy Bodies. International Psychogeriatrics, DOI: 10.1017/S1041610215001362
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    Alzheimers & Dementia Support Programs

    Our support groups give family caregivers the chance to connect, to compare similar journeys, to share practical advice, and to discuss frustrations, fears and hopes. All support groups are free and open to the public. Groups are currently meeting virtually, unless otherwise noted.

    Every Thursday2:00 pm – 3:30 pm

    All are welcome to attend this weekly group meeting for family and friends of those with Alzheimer’s disease or other memory impairments. This group allows care partners to share practical advice, discuss frustrations and fears, and connect with others on a similar journey.

    For more information, contact Melissa Long by , or at .

    Early Stage Care Partner Support Group

    Second Tuesday2:00 pm to 3:30 pm

    This group is specifically designed for care partners whose loved one has received a recent diagnosis of dementia or is in the early stages of the disease. Get to know other families who are in a similar situation, while also learning caregiving tips and sharing personal concerns and successes.

    For more information, contact Melissa Long by , or at .

    Lewy Body Dementia Caregiver Support Group

    Fourth Tuesdays2:00 pm to 3:30 pm

    Do you have a friend or family member with Lewy Body dementia? Join us for this group to learn more about this specific type of dementia, and share with others who also have loved ones with the disease.

    For more information, contact Melissa Long by , or at .

    First Mondays7:00 pm to 8:30 pm

    For more information, contact Lindsey Vajpeyi by , or at .

    Learn About Lewy Body Dementia

    Lewy Body Dementia: Support (4 of 5) – Mayo Clinic

    Find the best, easy to understand, reliable and useful information about Lewy Body Dementia right here, including the most important information, symptoms, treatments and insights to make the best of a very challenging condition.

    For how common it is, Lewy Body Dementia is almost completely unknown. Those touched by its diagnosis have rarely heard of it beforehand. It is also under-diagnosed, misdiagnosed, and misunderstood: these realities lead to needless, tragic outcomes.

    Many of its disturbing symptoms can appear and then vanish as if they were never there, making the diagnosis of dementia with Lewy Bodies very difficult. This form of dementia has unique, life-threatening risks and requires very careful treatments and medications. However, the information and techniques you need to know most is not overly complex, and is simply presented here, to be easily understood by anyone.

    With knowledge gained from this site, anyone has the potential to make a huge difference in the life of a person with LBD. You can also make your own life much less tumultuous. The newly developed information on this website constantly monitors research, developments and innovations to provide the most up-to-date information.

    Get a broad perspective for those newly diagnosed and get articles on specific, individual topics. Learn where to get help and support and carefully curated collection of online Lewy Body Dementia resources with descriptions.

    Recent and Popular Articles

    Strength to all!

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    About Caregiver Action Network

    Caregiver Action Network is the nations leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers ranging from the parents of children with significant health needs, to the families and friends of wounded soldiers from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimers disease. CAN is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.

    Support After A Diagnosis Of Dementia With Lewy Bodies

    After a diagnosis of DLB, both the person and their carer will need support. There are many ways to help someone to live well with DLB that dont involve drugs. These include information, advice, support, therapies and activities.

    It may help to talk things over with a professional first. This should give everyone the chance to ask questions about the diagnosis and think about the future.

    This could include getting information on planning ahead, where to get help and how to stay well, both physically and mentally.

    The GP, memory service or Alzheimers Society are good places to start for more information on what is available.

    Also Check: What Happens To The Brain When You Have Dementia

    Lewy Body Dementia Association

    Key Specs

    • Membership fee: Most groups are free, some may collect voluntary donations
    • Structure:Online, phone, video conferencing
    • Details: Offers support groups specifically for spouses and has active Facebook support groups.
    • Things to consider: Support groups are not available in all states

    Lewy Body Dementia is a condition involving abnormal protein deposits in the brain called Lewy bodies. These deposits affect brain chemical levels, which may result in abnormal thinking, movement, and behavior, as well as mood disorders.

    Lewy Body Dementia Association offers several types of virtual groups, internet discussion forums, and more. Its offers virtual, meetings for anyone living with LBDeven those who are not yet diagnosed but are seeking information.

    If you’re seeking a combined support group for people diagnosed with Lewy body dementia and their care partners, Living Together with Lewy is another Facebook group that is available. This one aims to help those who are newly diagnosed, people with early symptoms of the condition, and others who are seeking advice around a possible diagnosis.

    LBDA also offers an online support group if you have a spouse with Parkinsons disease dementia or Lewy body dementia : LBD Caring Spouses.

    Southfield Lewy Body Dementia Support Group

    Lewy Body Dementia Brochure

    Facilitated by the Rinne LBD Initiative

    Alzheimers Association Greater Michigan Chapter25200 Telegraph Rd

    A Rinne LBD Initiative group for caregivers and family members of those diagnosed with LBD along with a separate meeting for those who have early diagnosis of LBD meets on the fourth Thursday of each month 2:00-3:30 PM

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