Lewy Body Dementia - Support

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.
Click to visit the LBDA website

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.

SUPPORTS - through the The Lewy Body Dementia Association (LBDA)
Click here to see details about the Maryland in person group

LBDA Lewy Line
LBD families and caregivers can connect directly on a regional basis, through the LBDA Lewy Line, featuring “Lewy Buddies.” “Lewy Buddies" are experienced LBD caregivers who share their time and experience with LBD families by:
Listening compassionately and confidentially to the challenges of LBD families and sharing their own personal experience with LBD
Offering emotional support
Referring families to additional LBDA programs and services as appropriate for their needs

Click here to learn more about the LBDA Lewy Line

LBDA Caregiver Supports
If you’re new to caregiving or experienced with providing for your loved one, we hope you find something here to utilize and inspire.
Click here to view the LBDA Caregiver Supports

LBDA Virtual Support Group
LBDA promotes a range of support groups that mean online, including those for the person with the diagnosis, their caregivers and loved one.
Click here to learn more

ADDITIONAL RESOURCES

Bender JCC Parkinson's Wellness Initiative
Exercise is a critical part of a Parkinson’s Disease (PD) patient’s treatment since it helps with flexibility, posture, and overall movement. Research from Parkinson’s Foundation’s Parkinson’s Outcomes Project has proven that 2.5 hours of exercise per week has a significant difference in the quality of life for those with PD. Regular physical activity is linked to improved mobility and less cognitive decline.
Click here to visit the website

The Parkinson Foundation of the National Capital Area invites caregivers to the Bethesda support group.

Click here to view more details

Online Support Groups (including Parkinson's)
Caregivers who participate in support groups report they feel less stressed and less alone in their experiences providing care for a loved one. Yet not all caregivers can attend in person support groups. Some caregivers (for a range of reasons) are unable to attend local support groups. Fortunately there are other options, these include online support groups.
This format is provided over the internet and offers privacy and the benefits of not leaving home.

Click here to view more details

Sibley Senior Association - Support Groups (including Parkinson's)
Sibley offers a variety of support groups to Senior Association members and to the community.
Support groups are free, ongoing and open to new members. Call the numbers listed for more information and registration.

Click here to read more details

Diverse Support Groups through Iona (including Parkinson's)
Are you a family caregiver who is feeling overwhelmed, or anxious, or sad — or all three? Are you struggling with the mixed emotions that come with aging?
Iona support groups offer a much-needed anchor by providing you a space to connect with others experiencing similar situations. Come vent, share stories, and learn coping strategies.
Facilitated by Iona professionals, our support groups give participants the opportunity to:
Find emotional comfort and moral support
Gain practical advice
Compare notes on resources
Talk honestly and confidentially with others going through the same thing

Click here to read more details

National Institutes on Aging Report
Lewy body dementia (LBD) is a disease associated with abnormal protein deposits called Lewy bodies. These deposits affect chemicals in the brain whose changes, in turn, can lead to problems with thinking, movement, behavior, and mood. Lewy body dementia is one of the most common causes of dementia.Click here to read more

More National Institutes of Health (NIA) information about Lewy Body Dementia
Click here for the NIA LBD introduction
Click here for the NIA LBD "Hope Through Research" 

FREE 50+ Employment Expo Monday May 4, 2020

Annual FREE 50+ Employment Expo - Retool, Recharge, Reinvent. 

This important expo will be held:

Monday, May 4 from 10 a.m. to 2 p.m.

at the Bethesda North Marriott Hotel and Conference Center,

5701 Marinelli Road, North Bethesda, MD. 20852. 

If you are over 50 and looking for employment, you won’t want to miss JCA’s employment expos. At the 50+ Employment Expos, you can:

• network with area employers and community resource organizations
• get a free résumé review
• learn new job-search skills

There are dozens of employers with available jobs and community resources to help with your employment search. 

For more information click here for our Bethesda expo 

Parkinson's Support Group

The Parkinson Foundation of the National Capital Area invites caregivers to the Bethesda support group.

It meets every other Wednesday
10:00 a.m – 11:30 a.m.
St. Mark’s Presbyterian Church,
10701 Old Georgetown Road.

Please contact Marilyn Berger at (240)401-8483 for more information.

For information on PFNCA’s support groups in Bethesda, Sandy Spring, Chevy Chase, Rockville and Silver Spring, please visit www.parkinsonfoundation.org.

LGBTQ+ Considerations for Palliative Care and End-of-Life

Community Education LGBTQ+ Considerations for Palliative Care and End-of-Life Thursday, March 26, 2020 7:00 p.m. - 9:00 p.m. CaringMatters, 518 S. Frederick Ave., Gaithersburg Free of charge, but space is limited. Registration required. Registration This workshop will explore the behavioral health care needs and concerns specific to LGBTQ+ older adults at end-of-life.  Attendees will learn about: Behavioral health care needs and concerns specific to LGBTQ+ older adults at end-of-life Palliative care needs for ALL people: pain management, attention to spiritual needs and emotional well-being Guidance on affirming, welcoming, and appropriate services that focus on the best interest of patients at end-of-life Influence of family, culture, society and religious beliefs on healthcare decisions and outcomes at end-of-life for LGBTQ+ individuals, “families” and care providers Presenter: Chad Wheeler, LICSW, BCD Behavioral Health Specialist Whitman-Walker Health, Washington, D.C. Chad Wheeler, LICSW, BCD is a Behavioral Health Specialist at Whitman-Walker Health. In his role, he connects medical patients to behavioral health services, provides individual and group psychotherapy, offers therapeutic support for patients experiencing crises, and conducts assessments for patients pursuing gender affirming care. He received a Master's Degree in social work from the University of Maryland School of Social Work. He has worked in the field clinically for over 10 years in hospital and medical settings, inpatient/outpatient substance abuse and as a Commissioned Corp Officer for the Federal Government. His clinical areas of expertise include grief and loss, addictions, eating disorders, crisis care and trauma-specific treatment. Upcoming Events: Volunteer Training, March 10, 11, 12 Claiming Joy in the Journey: Moving from Survive to Thrive with Dementia, April 29 Raise Your Glass, May 14 Camp Erin, May 15-17 ‌ ‌ ‌ ‌ Support Us CaringMatters.org 518 S. Frederick Avenue, Gaithersburg, MD 20877 301-869-HOPE (4673) About Us Volunteer Programs Education Staff

CARE para tu billetera!

¡Una tarjeta gratuita sobre la ley   

CARE para tu billetera!
AARP Maryland luchó por la ley CARE de Maryland para apoyar a los cuidadores familiares
cuando sus seres queridos son hospitalizados y durante la transición de regreso al hogar.
Recorta las tarjetas que se encuentran abajo y colócalas en tu billetera y en la de tu ser
querido. Así, ambos tendrán a la mano información importante sobre esta nueva ley cuando.

Haga clic aquí para visitar el sitio web, descargue e imprima la tarjeta de billetera

Your free CARE Act wallet card!

AARP Maryland fought for Maryland’s CARE Act to help family caregivers when their

loved ones go into the hospital and as they transition home. We hope you will cut out
the cards below, and place them in your and your loved one’s wallets. That way,
you’ll both have the important information about this new law available when you
need it most.

Click her to download and print the CARE Act wallet card

A Family Member’s Perspective on Dementia Care

As most of you know, I have been working in the field of dementia for almost 30 years. During that time, I have provided a lot of advice to more families than I can count.

I also have a family member who is living with dementia.

Recently, he was hospitalized and subsequently transferred to a rehab center because of a nasty case of pneumonia. I have spent the last few weeks interacting with the medical system from the “other side.”

I would like to share some of our story with you. In doing so, I hope to accomplish a few things:
It is my hope that the healthcare professionals reading this will identify some areas in which they can improve.
I would like family members to feel more empowered to speak up and ask questions.
I want people living with dementia to be treated better. Is that really so difficult?

I won’t go into every single detail. In fact, overall, my family member received very good medical care. But in some little details, they really fell short.

Mealtime A meal tray was brought three times daily, fully loaded with a variety of food containers. Staff placed it in front of him and promptly left. No one explained what things were, or opened containers, peeled his banana, etc. People living with dementia are easily overwhelmed with meals presented that way. It’s often easier for them if just one thing is offered at a time. In addition, many people with dementia experience visual agnosia, a condition in which a person can see but cannot recognize or interpret visual information, due to a disorder in the parietal lobes. I often observe my family member picking up an object and not recognizing what it was or how to use it.

By taking a moment to describe what’s for dinner, opening a few items, presenting just one bowl, and handing the person the correct utensil, we can start the meal off in a positive, more helpful way.

Choice I observed a number of small, but ultimately irritating things, that I always ask staff with whom I work not to do, such as calling my family member “Honey” and “Buddy” (neither are his name), taking him to activity without asking him if he wants to go, keeping him in a wheelchair for the day even though he can walk, not cleaning his glasses, assigning a “shower day” without asking for his preference, repeatedly asking him what day it is, asking him who I was (he said I was a “good friend”), talking to him as if he was a small child… You get the picture. You have all seen this before.

I have been so lucky to work with person-centered communities that provide extensive dementia training that I simply cringe when these things happen.

All people should be given the choice to direct their care. If they are unable to verbally express their preference, someone should ask their family. We all want to make choices about even the simplest things in our life.

Care Planning
I was a guest at a Care Planning meeting for the very first time. Usually I am the one explaining, asking, and listening to the families – not the other way around. This time, I was told about dementia by a misinformed healthcare professional. This discussion was very trying for me, as we talked about coming home or not coming home, safety, the extensive amount of care at home that would be needed, etc.

I started feeling sad and scared. How are we going to manage all of this? If I, of all people, am feeling this way, how do families without a dementia specialist navigate all of this? Frankly, I wish no one had to deal with this.

To top it off, at the end of the meeting, one of the staff members had the following exchange with my family member (who has advanced dementia).

• Staff: “I don’t want you to transfer by yourself.”
• Him: “What is transfer?”
• Staff: “I don’t want you to go from the wheelchair to the bed, from the wheelchair to the toilet, from the toilet back to the wheelchair, or from the wheelchair to this other chair, by yourself.”
• Him: “What does this have to do with me?”
• Staff: “I don’t want to you get up or move without pushing this button. Do you see this button? You need to call us for help if you need to move from the wheelchair to the bed to the wheelchair to the toilet. We don’t want you to fall, so you need to push this button.”

I was speechless and simply overwhelmed after this exchange. Did she have his best interest at heart? Yes. Was she trying to do well at her job? Of course.

But, he didn’t understand a word she said. It was too much information, presented too fast, and in a confusing way.

We need to remember to break information down into bite-size chunks to make it understandable. We need to write things down, and go slowly step by step. We also need to realize that the person may forget what we said as soon as we leave the room. It’s not their fault, so we can’t get upset if this happens.

Connection and Purpose
My most successful visits to the rehab center thus far have been when I bring my therapy dog Lucy, and when I bring something interesting to do. My family member loves Lucy. Last night, he was sitting at the dining room table waiting for his meal and I showed up with Lucy. He immediately brightened. He might have forgotten my name last week, but he remembered hers. He said to his table mate, “She isn’t just my dog, she is a member of the family.” It was snowing and she was wet. He commented on her damp fur and it gave us a chance to talk about the weather, the fact that I had shoveled the walk, etc. It helped him to make a connection to our regular family life even though he was separate from it for the time being.

One of the best ways to help someone with dementia maintain their sense of personhood is to give them purposeful activity. My family member loves to fix things and work with tools, so I brought over a jar filled with nuts, bolts, and washers, a large tray, and three sorting bowls. I asked him if he would help me out and sort everything. He said to me, “Do you really need help or is this to keep me busy?” I laughed and told him that I really needed the help, that is was important to me the items were neat and tidy. He was thrilled to help. When I returned the next day, the first thing he said to me was, “I finished your project and I will take care of something else if you need me to.”

We all want to be needed! People living with dementia are capable of so many things, we just need to match their interests with their abilities, so they have success.


Thank You
I thank you for taking the time to read my deeply personal newsletter story this month. This thing called dementia is hard for everyone – the healthcare professionals who are trying to help, the families who are trying to cope, and the persons with dementia trying to live. If you know someone experiencing this, give them a hug, smile, or offer of help. It will be appreciated.

Be well,
Jennifer Brush

Share Your Caregiving Experiences - Deadline Feb 7

Share Your Caregiving Experiences 

with the National Caregiving Advisory Council

Comments Due February 7 

In 2018, a multi-year local and national advocacy effort successfully culminated with the passage of the RAISE Family Caregivers Act. The bipartisan and widely supported effort established the national Family Caregiving Advisory Council, which is charged with developing and making recommendations to the Secretary of Health and Human Services about effective strategies to better support the estimated 43.5 million family caregivers in the United States. The Council’s scope is broad, encompassing caregivers of all ages caring for people of all ages, not just the caregivers of older adults who we know are an essential component to helping older adults age with dignity and independence in their homes and communities. The Council is also focused on recommending ways to improve coordination among the federal government agencies that play a role in caregiving.

In April of last year, n4a President Deborah Stone-Walls was appointed to the Family Caregiving Advisory Council, and n4a CEO Sandy Markwood serves as a member of the Council’s faculty. The national panel began their work last summer to explore strategies to promote improvement in federal, state and community systems that support family caregivers. To inform this effort, members of the Council are seeking public input from individuals and agencies about the experiences and challenges of family caregivers and possible solutions to enhance caregiver supports.

How Your Agency and Clients Can Inform the Council’s Work
The Administration for Community Living (ACL), which is the federal entity that is convening the Council, released a Request for Information (RFI) seeking “input from individuals and organizations that capture the breadth of the family caregiving experience.” Aging Network stakeholders and advocates at all levels are an essential voice in this caregiving conversation. We urge your agency, providers and the caregivers they serve to submit comments to the Advisory Council by February 7. Note that this is not a cumbersome process: you do not need to submit a formal letter and the submission is limited in scope. See what we mean.

Take Action Today!
Specifically, the Council is requesting submissions focused on recommendations and solution-focused actions that the Council can take, as well as pressing family caregiving concerns that the council should consider.
Submit Comments from Your Agency and/or Advisory Council! Organizations serving both caregivers and care recipients offer an important perspective about challenges and opportunities for solutions for family caregivers. Specifically, the Council is requesting information addressing issues such as: person and family centered care planning; caregiver assessments; service planning and delivery; care transitions and care coordination; information, education, referral and training needs; effective advance-care planning; caregiver respite options; financial security; and workplace or employment options.

Engage Your Grassroots Network and Community! Encourage your providers, advisory boards and consumers to engage by submitting information about their own caregiving experiences and challenges.n4a will also submit comments to ACL’s Request for Information and will make those comments available when finalized. Thank you for your advocacy on this important issue!


If you have questions or concerns about this Advocacy Alert or n4a’s policy positions, please contact Autumn Campbell at acampbell@n4a.org and Amy Gotwals at agotwals@n4a.org.