Tag: LBD

The Benefits of Participating in LBD Research

Enrolling in an LBD research study requires some time and effort, but the benefits can be considerable – particularly for those who have been diagnosed with Lewy body dementia. If you are considering participation in an LBD study, here are some key advantages of your involvement:

You are in complete control

Medical professionals involved in clinical research – that is, a study involving people – have a duty to protect the rights, safety, and welfare of the study volunteers. Study participants have the right to withdraw from a study at any time and for any reason. As a study volunteer, your continued participation is always up to you.

You could be compensated

Every clinical research study is unique, but certain LBD studies pay volunteers to participate. In such cases, study participants and care partners could be paid for their time and travel expenses.

Get access to new treatments

Currently, there are no FDA-approved treatments for any symptoms of dementia with Lewy bodies (DLB). This is why finding new LBD treatments is the number one priority for LBD clinical research. Depending on the purpose of the study, you may receive access to experimental treatments.

Take an active role in your healthcare

Being a part of a clinical trial could provide you with more regularly monitored visits and routine clinical services, which could result in a better standard of care. By simply participating in a clinical trial, you take a more active role in your healthcare. You may gain a greater understanding of the disease or a greater sense of purpose, as taking responsibility for your health can be empowering.

During an LBD clinical trial, you will have access to highly trained physicians and research staff who are extremely familiar with LBD. Depending on the trial, you may also receive a range of diagnostic tests, medical exams, and lab work. Such tests offer an effective way to check up on your health. They may even uncover other health issues which would benefit from treatment, such as high blood pressure, Type II diabetes, or other common conditions.

Advance medical science for future generations

We currently know very little about LBD, which makes LBD research so essential. Clinical studies, like those conducted at the LBDA’s Research Centers of Excellence (RCOE), are focused on advancing our understanding of LBD in several ways.

Some researchers are trying to identify differences in the brain between LBD, Alzheimer’s disease, and Parkinson’s disease. Other researchers are trying to uncover genetic and environmental risk factors that could contribute to LBD. Still others are trying to identify LBD “biomarkers” – measurable biological changes in the body – that can indicate the presence of LBD, or can be used to indirectly measure whether someone might respond to a new treatment or not.

By participating in an LBD research study, you will be helping medical science move forward to solve such LBD mysteries. You will be helping researchers find more effective LBD treatments and possibly even ways to cure or prevent the disorder. Ultimately, you will be contributing to a healthier society for future generations – possibly even your own children and grandchildren.

Fight LBD by finding a purpose that helps others

At the LBDA, we have seen how people living with LBD enjoy an empowered outlook on life, in finding a new purpose that helps others. Enrolling in any LBD study certainly qualifies! It is the sort of generous act that would help others and could ultimately help yourself.

Finding Support that is Actually Supportive

Support is something that may promote certain interests, uphold, defend, assist, help, pay the cost of, serve as the foundation of, and keep something going. And, when one is facing difficult moments, we often find that we need all different kinds of support.

Support can be difficult to identify and difficult to ask for. Modern society is built a bit on the strength of the individual, “sucking it up”, staying busy, and often handling the hard times behind closed doors. The majority of what is seen on social media can make it even more difficult because we generally see the positive highlights of the lives of those around us. This can make it harder to share moments where we feel more vulnerable, weak, or wounded.

But, breaking out of the mindset of doing the difficult alone can be vital when support could be most helpful. It can be beneficial to take a few minutes to organize your thoughts around what is needed and list them according to priority.

If there is a diagnosis of Lewy body dementia with yourself or your loved one, here are a few ideas of assessing what types of support would be most supportive.

  • What do you need to know and understand to make the most informed decisions about this condition?
  • What hands-on help would make life more manageable or reduce risks such as helping with the lawn or driving to the grocery store?
  • What care supports are currently needed now and what may be needed in the future?
  • Who may be helpful to connect with to feel heard and understood?
  • What can bring joy and engagement to your life now – even if modifications must be made?
  • What could you delegate or share with those around you who want to help but may need to be given certain tasks?
  • What have you learned that you can share with others to advocate or increase awareness for your situation and for the situations of others on this journey?

Once you have your thoughts together, it is important develop an active plan to connect, discuss, ask questions, and advocate for what is now identified as needed support. Understand the needs will change so embrace flexibility.  Once you have clarity, it is easier to seek what is needed and be clear when asking instead of waiting for it to come to us.

The Importance of Fall Prevention

According to the CDC, falls remain the leading cause of injury in older adults – with over 36 million reported falls each year and 1 out of every 5 of those falls leading to serious injury.

The symptoms associated with Lewy body dementia can increase fall risk – such as blood pressure changes, dizziness, vision changes, and general issues with movement.

It is important to speak to medical providers to see what can be done to lower risk – including medication changes, the use of medical devices such as walkers, and other recommendations such as physical or occupational therapies.

Another simple way to lessen risk is to do a quick assessment of one’s home setting to make sure that it is as safe as possible to prevent or reduce falls or injury from falling.

Tips may include removing items from stairs, installing proper lighting, removing throw rugs, and using non-slip surfaces as necessary. The CDC offers a wonderful checklist of basic items that can be helpful called “Check for Safety: A Home Fall Prevention Checklist for Older Adults.”

We have provided the checklist to assist you in being proactive. https://www.cdc.gov/steadi/pdf/STEADI-Brochure-CheckForSafety-508.pdf

Not all falls can be prevented – however, it is important to reduce the risk of falling and injury from falls as much as possible.

Learn more fall prevention tips in the link, https://www.lbda.org/news-you-can-use-fall-prevention-tips