LBDA Research Centers of Excellence

One of the most exciting things we learned at the 2019 LBD Conference was that the LBDA has started a program called Research Centers of Excellence (RCOEs). We see this as a huge step towards providing care partners, their loved ones and their health care teams the service and information that Jim had in mind when he and four other LBD caregiver founded the LBDA in 2003.

When Jim and When Jim and I married two years later, the LBDA was still a totally volunteer organization, with headquarters in our home, a post office box in a college town a few miles away, a small website managed by Jim-- and so many boxes of brochures that they served as a base for the bed in our spare room.

Since then it has blossomed into a national organization with 14 full time staff in Atlanta GA, over a hundred support groups, a huge information-filled website and volunteers throughout the nation. It was then and is still dedicated to

• raising awareness of LBD
• advancing the diagnosis of LBD
• promoting scientific advances
• supporting people with LBD, their families and caregivers

The LBDA's present mission statement reflects all of that: "Through outreach, education and research, we support those afflicted by Lewy body dementias."

However, some not fully resolved issues are still present. One that we hear care partners ask about regularly is "How do we find a Lewy-savvy doctor?" The answer to that isn't always easy: "Ask other members in your support group." has been one of the best, but if you don't have a support group, then what?

Another issue is the need for more research. Although the government has alloted much more money to research for dementias besides Alzheimer's, too many clinical trials fail, not because they didn't pan out, because not enough  subjects are willing to volunteer.

A third issues remains the need for better and more information. We still hear many care partners who struggle to learn more about this baffling disease. Even when they find a Lewy-savvy doctor, they may not find the educational support they need, because doctors tend to focus on the disease rather than the patient or the family.

The LBDA's Research Centers of Excellence (RCOEs) address all of these issues. The people who established the RCOEs had two goals:

• establish a trial-ready network.
• increase access to high quality clinical care over the course of LBD.

As the RCOEs were developed, a third goal was added, thus meeting all three goals in LBDA's original mission statement:

• to offer caregiver and community support and education.

RCOEs address both the future, via their research module, and the present, via their clinical treatment module and their community support module. Promoting research, accurate diagnoses and supporting those living with LBD all take equal billing. It all works together.

While Alzheimer's research has grown in recent years, funding for research for other dementias has only now begun to be available. This is very positive, but a major problem remains. Many clinical trials fail, not because the theory proved wrong, but because of a lack of subjects willing to volunteer. Now, with funds available for more LBD research, the need for willing subjects is greater than ever. By offering high quality--and knowledgeable--clinical care, RCOEs develop a pool of patients from which to draw subjects for these clinical trials. 

The RCOEs answer the issue of finding not only a Lewy-savvy doctor, but a whole Lewy-savvy team. You can go to any of the 33 and growing RCOEs in the nation and expect to find Lewy-savvy doctors and staff. That's because to be an RCOE, a clinic must provide ongoing training for their professional staff to keep them up-to-date. There is also a RCOE goal to define standards of care for management throughout the course of the disorder. This means that you will likely get the same good care in any RCOE and that eventually, these standards will spread throughout the medical community.

 As for caregiver and community support, The LBDA has done a great job sponsoring support groups and providing education. However, there are still gaps, still a need for more support and better information. To qualify for RCOE status, a clinic must sponsor a LBD caregiver support group and offer regular community education about LBD. If there is a RCOE in your area, you can count on finding a support group as well as classes to help you and others in your community learn more about how to deal with this often baffling disorder. Be sure to take advantage of these educational offerings.

Thus a RCOE offers Lewy-savvy doctors with ongoing training that can educate not only these doctors but all health care professionals in the community who are interested. It offers ongoing support for patients and their care partners. And finally, it is a source of education for the whole community. To find out if there is one close to you, click here.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

2019 ILBDC: Caregiver Empowerment, Pt. 4

By the time you've been a care partner for even a few months, you've gained a pool of valuable information and insights. Such on-the-job training is every bit as valuable as a college education in its own way. It can be very rewarding to pass this hard-earned education on. We all feel better when we can give and share.

Caregiving isn't any different. True, you give a lot to your loved one, but sharing your attention and experience with other caregivers and with the community at large can be extremely rewarding. Some of the many ways you can do this are to:

• Share LBDA materials with all of your healthcare providers
• Raise awareness about LBD among your personal network or in your community at large.
• Be a listening ear to other caregivers in both online and local support groups.

Many care partners continue volunteering and teaching about LBD long after their loved one has passed on. Jim is in his 16th year after Annie passed away. The group facilitator of our local support group is in her 4th post care partner year. Angela's father passed away a while back (I'm not sure when.) I could go on, but you get the idea. Your work with LBD doesn't have to stop when your caregiving job ends. You can keep on being involved as long as you want to. But only if you want to. Some care partners don't and that' OK too.

In summary, a caregiver has many hats: Bookkeeper, housekeeper, chauffer, personal shopper, social secretary, medical care coordinator, and more. Often these jobs are new and not all that comfortable. Your loved one may have been the one responsible financial record keeping and probably for their own medical care. But now these jobs are yours, along with others such as educator and advocate. How do you do it all? How do you do it all and still have time for you? Anglea says you are more likely to be able to make this happen if you:

• Preparing in advance
• Using outside resources
• Developing your skills
• Taking care of yourself and
• Leveraging your experiences.

Each the above four pillars of caregiving empowerment are covered more thoroughly in this and the previous 3 blogs. If you utilize them, you will find your path smoother, you will be more relaxed and your loved one will be more content.

About Angela Taylor. Angela followed Jim as the LBDA board president. When her term was over, she joined their staff and is now their Director of Programs. A member of the sandwich generation, Angela was also a wife and mother while caring for her father who had LBD.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

2019 ILBDC: Caregiver Empowerment, Pt.3

This is the third in a series called The Four Pillars of Caregiver Empowerment, presented at the 2019 International LBD Conference in Las Vegas by Angela Taylor. The first pillar was about thinking ahead. The second was about using your resources and developing your skills. This week's blog is about a subject that many care partners neglect to do, caring for yourself. Yet, it is probably the most important task you have. YOU are your most important caregiving tool, and your loved one's most needed person.

Start by considering your obligations. Besides being a care partner, what else is there? Do you have a spouse or children that need your attention too? Do you have a regular job, or volunteering responsibilities? And what about your house? Who does the housekeeping, cooking, gardening, etc., etc.? Write it all down. Don't worry about whether you can do it all right now. For now, you just need to see what it is that you feel responsible for.

Make room for you. Now make up FOUR (4) to-do lists as follows:

• For me to do. On it write down all the things you normally do, or think you should be doing. (Warning: This list is likely going to be far too long! Far more than you can do each day. Don't worry. You can shorten it later.)
• For others to do: Start out by writing down all the jobs that others already do. Are there any crossovers? For example, does your daughter shop for you sometimes? Now go back to your "for me" list and find more jobs that others could do. Don't worry about who. Just make a list of things others could do for you, like vacuuming the floor or doing the dishes or shopping or...well, you get the idea. Don't forget to add "sitting with loved one while I go play." This is the list you refer to when someone asks you if they can help. You can even print some out and hand one to the asker, with a "Thanks so much. Here are some ideas."
• For me to do for myself. Write down all you can think of. This may take more effort because you aren't used to thinking about this--and because you are afraid there won't be time and so why plan on it? Don't worry. Just write them down. Now when you have some time--like when someone offers to sit with your loved one or do your dishes, you can refer to YOUR list and find an activity that will refresh you. Don't forget to add "naps!"
• Not to do at all. Look over your "for me" list again. What is there that just really doesn't have to be done? Be ruthless. Cut out all you can! And cut down too. Instead of washing dishes after every meal, consider every day, or even less often, for example.

Join the LBD community. As the disease progresses, you will find that you have less in common with old friends, and even family. But with fellow caregivers, especially fellow LBD caregivers, you will find empathetic ears, a safe place to vent and practical caregiving tips. You may also find new friends.

Manage your own health. This could be a whole single blog in itself--but I doubt there is much here you haven't heard. Nevertheless, how much of it do you do? It is all important. Remember if you don't maintain your physical and emotional health, your body is likely to rebel and you won't have any choice--you will be the one being cared for and who knows what will happen to your loved one.

Work to eat healthy, have regular physical exercise, get enough sleep and fluids, make time for socializing and more for just being quiet, and finally see your doctor when you need to and re-fill your prescriptions.

Next week's blog will be the final one in this series.

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.

2019 ILBD: Caregiver Empowerment, Pt. 2

Last week, we started a series about Angela Taylor's Four Pillars of Caregiver Empowerment. This week we move on to her Pillar 2. You, personally, have a lot more resources than you may be aware of.

You are the expert. As the care partner of someone living with LBD, you become the expert. That's true even if you weren't that close before you became their caregiver. When I became my much older sister's caregiver, I knew very little about her. We'd actually never even lived in the same town, let alone the same house. But before long, I was an expert on her needs. I had to be to do my job well. You get to know how they relate to family. You know their level of education and as time goes on, you learn what they can understand and what they can't. What they can do and can no longer do. You know their hobbies and interests, those activities that can help them still feel like the person they used to be. You know their personal preferences and idiosyncrasies, those little things that can make life miserable or happy.

Try empathy first. However, as the disease progresses and your loved one's ability to communicate diminishes, understanding their wants and needs can often be frustrating. Step back and think about what you might want if you were feeling and thinking the things your loved one is. What's going on? Are they frustrated by things they can't do anymore. Speak to the underlying feeling. Are they experiencing hallucinations or delusions? Empathy will put you in their reality, where you can relate with them rather than expecting them to relate with you in your reality--a set up for disaster! Are they confused or anxious? Try empathy laced with patience, to help them calm down. Are they depressed or apathetic? Both are LBD symptoms, all of which get worse with stress and better with relaxation.

Be realistic. Schedules, routines and rituals are a caregiver's best friends. They help your loved one feel more in control of their life. But when you set them up, take into consideration how much longer everything takes now, and how much more energy it takes as well. Be alert for tiredness and low energy levels and curtail activities if necessary. Adequate sleep is extremely important. As time goes on a person living with LBD will sleep more and more. This is normal. But so are night time wakings because their time clock doesn't work well anymore. Do your best to keep these minimal--mainly for your own need for sleep, but be realistic about their presence. It may make more sense to have someone stay at least some nights every week so you can get some sleep. Finally, as the disease progresses, personal hygiene will become less and less important to your loved one. Insist on enough to keep him acceptable and safe and let the rest go.

Find community resources.If you are fortunate, you have family members who can help you. But even then, you need to know about the resources that are available in your community. The list is long and you should start researching these well before you need them. Remember it is much easier to make informed decisions if you aren't in crisis! Check out the following: home care assistance, respite care, legal and financial services, geriatric care managers, government agencies, adult day programs and long term care choices.

Finally, don't forget about the LBDA Research Centers of Excellence. Visit www.lbda.reoe to see if there is one in your area. If so, do take advantage of what they offer:

• Experts in clinical management of LBD. You can always find a Lewy-savvy doctor here with the latest information because the centers also provide LBD education to their health professionals.
• Support groups and community education for you and the community.
• Opportunities to participate in research, which can be a gratifying experience.

Next week's blog will be Pillar3: Care for Yourself. This is a subject we talk about often, but never too often, given its importance!

For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff

Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.