Ask the Experts about Alzheimers

Welcome to our weekly Health chat.

Today’s topic is Alzheimer’s. We have two experts here who can answer your questions on everything from research to care.

Patricia Lacey, education director with the Alzheimer’s Association and Christy Jensen of the Center for Excellence in Aging will be here to answer your questions.

Readers: Please submit your questions now! Experts – please introduce yourselves when you’re ready.

Good afternoon. My name is Christine Jensen and I serve as Director of Community and Health Services Research at the Center for Excellence in Aging in Williamsburg. I’m happy to be here to answer your questions.

More than 30,000 people in Southeastern Virginia are diagnosed with Alzheimers. It’s a disease, like cancer, that affects everyone through association — we all know a family who’s dealing with this disease.

Hi Christy. Welcome. Could you tell us what your agency does for those diagnosed with Alzheimers’

Hi, Patricia here, from the Alzheimer’s Association. Remember, you can always call our local, toll-free Helpline at 800.272.3900. The Southeastern Virginia Chapter covers a lot of territory, from Williamsburg down to Suffolk, the Eastern Shore, Franklin on out to South Boston!

Sure. We are a non-profit center located near The College of William & Mary. we have been in existence since 2002….

We offer geriatric assessments for families needing a more definitive diagnosis whether it be related to memory, depression, diabetes, or some other condition. We also offer driving evaluations…

Hi Patricia. Welcome!

I’m particularly proud of the department I ovesee because we conduct, with grant support, aging-related projects that benefit the community and the state. We also offer the opportunity to participate in clinical drug studies and I can share more on that shortly since we are testing a new Alz. drug.

Hi Prue, Christy and readers. Guest poster – are you over 65, qualified for Medicare and or Medicaid?

Individuals 65 and older should be covered through Medicare and can request their primary care doctor or a neurologist evaluate them for memory loss. Our Center offers a sliding scale so that those who have limited resources are charged less and we conduct a comprehensive evaluation.

George, There are 4 primary drugs in use.

And yes, if you are on Medicaid, the assessment should be covered. There are several clinics in our area too that see patients with limited resources.

They are Exelon, Aricept, Namenda and Razadyne

What do these drugs do for Alzheimers patients?

Our Center is conducting clinical trials and we are testing the use of the Exelon patch for those in the more severe stage of Alzheimer’s. Just let me know if you want more information about this study.

I understand that it’s difficult to find Alzheimer’s patients to participate in clinical trials — why is this? Can you tell people what a clinical trial would involve for the patient.

These drugs help the brain produce more of certain compounds that help the brain cells work better…

The drugs are not a cure, simply a treatment to slow the progression of the memory loss.

They do not alter the course of the disease, but may help people function a bit better for a while…

How do they work? What are their side effects? What are their differences?

It’s a bit like putting premium gas in an old car, to make it run a bit better. The car is still not working optimally and will continue to deteriorate. They “juice” up the brain function

Prue, it is challenging to find persons with memory loss to participate in clinical studies. They may not be aware of the opportunities to participate if their physician isn’t aware and then doesn’t make a referral or encourage their involvement…

Readers: We are talking to experts on aging and Alzheimers. Ask your questions now.

We try to educate physicians, particularly neurologists, about our studies so that they can help their patients make an informed choice about whether to participate. We also try to make sure the family caregiver is involved and can consent for their loved one, if needed….

Christy — would these be primary care doctors or neurologists or gerontologists who treat Alzheimers patients?

The current ones are in two categories, three work on enzymes in the cholestinerase family, one works on glucomate regulation…

I always like to tell families by participating in these clinical drug studies they are helping the FDA by contributing to science, by contributing to our understanding of the most effective drugs. And there are financial benefits to being involved as all participants are compensated for time and travel.

Prue – we would like to educate all of these doctors about opportunities for their patients to participate and hopefully receive some benefit.

Katie, that is very correct. In the mean time, the “plaques and tangles” are still forming in the brain.

Thanks, Katie! You could teach a class on Alzheimer’s!

How long would a clinical trial last? What would it require from the patient/caregiver?

Prue – Clinical trials last anywhere from 3-12 months, depending on the requirements of the FDA and the sponsoring pharmaceutical company…

What are the differences between the 4 drugs you mentioned and their side effects?

Guy, Early onset, or what we call younger onset, happens prior to age 65. Depending on the individual, it can be similar to what we call Late onset Alzheimer’s, which is what most people mean when they talk about Alzheimer’s

Participation in trial requires some periodic visits to our center to be managed by the physician and nurse on staff here. They may draw blood or take other samples to verify the drug is doing what it is supposed to be doing. Some studies require the participant to come off of other medications and some allow you to remain on those other medications.

Readers: We have 2 experts on Alzheimers here until 1 p.m. EST to answer your questions about the treatment for Alzheimers and also research and local resources. Ask your questions now.

Early onset Alzheimer’s presents a whole new set of socio-economic problems, particularly with diagnoses in the 30’s, 40’s and 50’s. It adds complexity to the 5.4 million cases we have in the US

Alzheimer’s is diagnosed through process of eliminating other potential causes of the memory loss and related changes…

At the Alzheimer’s Association we have a wealth of educational opportunities to learn more — a lending library, classes, support groups. You can reach us on our local toll-free Helpline at 800.272.3900 or visit us at www.alz.org/seva

The diagnosis, ideally done by a medical provider who is familiar with dementia and the assessment tools, involves a medical exam and a battery of neuropsychological tests to look at memory. We have on staff here a geriatrician, neuropsychologist and nurse that are all involved in the assessment. Then the diagnosis summary is sent back to the referring or primary care physician.

Guy,There is some evidence of a genetic link for some of the younger onset cases that differs from the genetic link for late onset cases.

Mary, we use 10 signs.

1. Memory Changes that disrupt daily life

2. Challenges in planning or solving problems

3. difficulty in performing familiar tasks

4. confusion to time and place

Mary, those we just a few for thought. The entire list is available on our website, with more indepth explanation at www.alz.org/seva

Guy – great catch. Technically, the case he had would be classified as Younger Onset!

Great question about dementia and Alzheimer’s….

The difference between Alzheimer’s and dementia — well, dementia describes a set of symptons, ie Warning Signs (like I started posting)….

When the doc says someone has dementia, he has recognized those signs and knows they are causing a problem with daily living…

The distinction is simply this….dementia is a broad category of syndromes related to memory loss not due to normal aging. Alzheimer’s disease is just one type of dementia with specific areas of the brain affected. There are more than 60 different types of dementia, but Alzheimer’s is the most prevalent.

BUT — he has not diagnosed the disease or condition causing the dementia. There are many diseases that cause dementia, and Alzheimer’s is the most common one…

We are talking to experts on Alzheimers, Christy Jensen of the Center for Excellence in Aging in Williamsburg and Patricia Lacey, director of education for the Southeastern Chapter of the Alzheimers Association. Ask your questions about this disease that affects 30,000 in S.E. Virginia now.

So, All Alzheimer’s is dementia, but not all dementia is Alzheimers! The next most common one is “Vascular dementia” — think high blood pressure, cholesterol, etc! And many many others

We really encourage families to ask the physician if they are told “it’s dementia” to follow-up with “what type of dementia?” as this impacts the treatment…

So, are you saying that diet can affect Alzheimers? Can you answer the guest’s question about foods to avoid or how to reduce the risk?

We have two different kinds of risk factors — ones we can’t change, our age and our genes…

The general rule is foods that are good for your heart are also good for your brain.

Diet is not an element I would have thought of in causing dementia/Alzheimers

The ones we can work on are lifestyle changes — We have all heard this, but not in relation to the brain…

For all your health news, go to www.dailypress.com/health and also read our daily blog, www.dailypress.com/healthnotes.

Eating right – low fat, variety, lots of colorful vegetables and fruits! Antioxidants, the folic acid in many whole grains and the healthy omega fats in many fish, nuts and olive oil.

We also have to watch our “numbers” – blood pressure, blood sugar, weight, cholesterol — can also add to our risk and these have a direct relationship to diet

Every Wednesday we host a health-related Web chat. Tune in at www.dailypress.com every Wednesday at noon — or email your questions in advance and check the archives later.

Exercise to keep the heart and lungs healthy!

And in terms of lifestyle, having a strong social support network seems to benefit the brain.

Another factor is keeping our brain challenged and active! Being social, being involved and having a purpose in life seem to have an impact!

It sounds like the based on the medications your mother in law is on, Melanie, that the doctor does believe it is some form of dementia…

Melanie, I would as for further investigation, perhaps a referral to a center like Christies that does a more thorough investigation. Many Primary Care Physicians do not have all the tools and skills for that kind of specialized diagnosis.

And being asked the same question over and over again, can be very frustrating some maybe we can refer you to some resources and strategies that will make things a little before you…

A little better for you, Melanie…my fingers got ahead of me…

Christy — excellent point. I would like to let our readers know more about available local resources for caretakers and support groups.

It is important to answer your mother-in-law’s questions but I realize that answering the same question multiple times might not do anyone much good. I recommend answering calmly and clearly 2-3 times and then re-direct her to another activity or to a snack…

At the Alzheimer’s Association, we have a number of free family services. A favorite starting point is our Family Orientation class. it takes about 2 hours and gives you a wealth of information, including the scoop on what is available locally…

There are numerous caregiver support groups that meet from Williamsburg down to Virginia Beach and all communities in between. We maintain a list of Williamsburg and Peninsula groups on our website…

Our site is: www.excellenceinaging.org. And the Alzheimer’s Association also lists area support groups. They can be a wonderful source of support, encouragement, and a place for ideas and problem-solving with folks in very similar situations.

The Orientations are held as follows: Norfolk, 2nd Tuesday of the month at 5:30pm or 3rd Wed of the month at 11:00 am…

My understanding is that one of the things that upsets Alzheimers patients is a change in routine. What do you recommend for relief for caregivers?

Family orientations are held in Hampton on the 3rd Tues of each month at 5:30 pm, Williamsburg is by appointment. To register you can call us at 800.272.3900 There is no cost, but you must pre-pregister

Patricia — Thanks for that information. Readers we are talking to Patricia Lacey of the Alzheimers Association and Christy Jensen of the Center for Excellence in Aging in Williamsburg. They can answer your questions on everything from research to resources … until 1 p.m. EST

Ben, Food and diet are contributing factors in the Alzheimer’s risk list. A healthy diet can be of benefit, and an unhealthy one can add risk

What about getting tested as a matter of routine if the drugs work better when started early?

I am not aware of specific foods that are considered to cause Alzheimer’s but again, the advice to reduce fat and salt intake, perhaps getting enough Vitamin B and C are key to a health brain and then staying physically fit.

We also have over 30 support groups in the area. They can be found on our website at www.alz.org/seva

That’s an interesting question about policy. Could you also tell us about recent legislation affecting Alzheimers care.

Guy, once Dr. Alzheimer diagnosed his client, we followed with increasing ability to recognize and label the disease. The majority of cases are Late onset (“regular”) Alz. It was noticed that in individuals who were diagnosed younger, the progression was often different…so it was divided, likely by convention and increasing research data

Prue – in terms of getting tested, there is a good bit of controversy concerning this…some folks wish to know if they are at risk and others not. And will insurance covering the testing? These are questions we still don’t have good answers, too.

So, if you’re not eligible for Medicare or Medicaid, insurance doesn’t cover the testing?

But the Alzheimer’s Association advocates for accurate diagnoses at the most appropriate time so that an early intervention, which may include drugs and behavioral programs, can be introduced.

It depends on the insurance provider. If the PCP makes a referral for a Alzheimer’s assessment, it is likely a least a portion will be covered through private insurance.

Prue, the most recent was the NAPA, the National Alzheimer’s Project Act. This act will provide the mechanism for all the research, legislation, programs and support to be coordinated under one plan. Big Victory for Alzheimer’s Adovcates!

We work with the families who come to our Center for an assessment and we bill insurance when possible and then implement a sliding scale for remaining fees if the patient has limited financial resources.

We know about 4 genes and have for a while. Just last week two papers indicated discovery of 5 more. Now, these genes for the most part are not indicated as “causative” but merely as increased risk factors. A couple of the really rare forms of Alzheimer’s are actually caused by genes.

Readers, we have just a couple more minutes to ask questions from our 2 experts on Alzheimers – Christy Jensen from the Center for Excellence in Aging and Patricia Lacey, director of education for the Alzheimers Association.

Sue-lynn, unless you know you have one of the rare familial types of AD in your family, genetic testing is not recommended at this time. If you do decide to get testing, one, it is expensive and two, see a genetic counselor before you do so.

Find transcripts of this and all previous health Web chats at www.dailypress.com/health

So for Ben’s question. If a parent has Alzheimer’s how much more likely are the children to have it?

Ben, a cure, I am not sure, but there is so much research being done. Check out the research findings on www.alz.org. We think we will eventually have one, but I believe we will find a “disease modifying” treatment before an actual cure.

A child of a parent with Alzheimer’s generally has a greater risk of developing the disease. Patty may have the specific percentages…

In regular onset (late onset, after 65), the risk is 1 in 10 without known connections. The child would have slightly more than that — but it is a reference point. We don’t know how much more likely, but an increased risk.

Michael Bennett, director of the YMCA in Williamsburg and Yorktown emailed me before the chat to let me know about a companion workout program that he’s working with at the Y.

Guy – Now that is the great question!!! NAPA needs funding. We have Alzheimer’s Advocates on a list that whenever something (like funding for legislation or a new legislation)…

The Y trains caregivers and that allows them to work out with their patients. They do it already with some groups. Do you think this would benefit Alzheimers patients or is exercise too difficult ?

Those advocates get an email to either call or click a link and send letters of support — and we get results! If you would like to be an advocate, go to www.alz.org/seva and look at the get involved tab and choose advocacy!!! We’d love to have you onboard!

Yes, Prue, Michael is a wonderful community partner through the YMCA. He has started a companion care exercise program where the care recipient and caregiver can attend the Y for reduced fees. The caregiver will be shown how to use the equipment and then can be there to monitor their loved one while they exercise.

Bennett’s contact number at the Y is 757-229-9622 if anyone is interested in pursuing that opportunity.

It depends on how advanced the disease is in terms of exercising but many individuals in the early to middle stages desire to be mobile and offering them the safe environment of the Y is one wonderful approach.

We also have other community education programs you can attend, as well as special events to show your support and help us realize our vision of a world without Alzheimers…

We are very fortunate to have an Alz. Assoc. Chapter in Norfolk, with a satellite office in Williamsburg that supports the entire Peninsula!

Could you detail when some of your fundraising efforts take place? What people can be doing now?

The Walk to End Alzheimers is a wonderful way to help. The Peninsula walk will be on Saturday, October 22. for more information or to register, go to www.alz.org/walk. The same for our South Hampton Roads walk, which is on Sunday, October 16

I’m sure Patty can promote the Memory Walk coming up this Fall!

Is there any funding built in to the NAPA legislation?

For a walk team and come out to support those with the disease, those we have lost, those we want to prevent the disase for and all who have cared for them. It is a good time and a worthy endeavor! A date is being set for the Walk to End Alzheimers in Williamsburg. Check the website for more details. You can already register for it, just waiting for the date!

What are the major barriers to advances in Alzheimers research? Are the numbers the same in Europe and other parts of the world as in the U.S.?

Readers: We have time for one more question about Alzheimers

Prue, it is always money and participation. The Association has help on finding research studies to participate in, like clinical trials…it is called Trial Match. It takes your particular set of data and matches you with potential trials…

Virginia is preparing to apply for federal funds through the Lifespan Respite Act that may offer some limited funding to family caregivers to support the incredible work they do!

Got to our website, www.alz.org/seva and find Trial Match or call us at 800.272.3900. Even non diagnosed are welcome…we need those too. Christine’s center has trials listed there also, and t hey are definitely local! CEAGH is a very supportive org.

What about in the health-care reform bill? Is there more funding for home-based care?

Prue, Yes, there is a big push in the new patient protection act to set aside more funds for community-based care.

Do we have an answer on life expectancy?

Ben, a lot of things can impact that. The range is 5-20 years, but I have seen more or less. Her general health, when she becomes bedridden, underlying issues, like heart disease, stroke, can change that

Experts: after you have answered Ben’s and Guy’s questions, please give your affiliation and contact information.

Anyone who becomes bedridden adds increased risk of death. And since it is mostly older folks with the disease, other age related conditions can impact survival.

You all have asked wonderful and challenging questions. We really are fortunate to have so many folks who care about persons with Alzheimer’s and their families and are advocating for them all the time.

Readers: To read the transcript of this chat and all previous health chats, go to www.dailypress.com/health and click on the tab, Archived Live Health Chats.

Feel free to contact me, Christine Jensen, here in Williamsburg at the Center for Excellence in Aging at 757-220-4751.

Patricia Lacey, Director of Education and Family Services, Alzheimer’s Association Southeastern Virginia Chapter. 800.272.3900

For all your health news, go to www.dailypress.com/health and follow our daily blog at www.dailypress.com/healthnotes.

Next week’s Wednesday chat is on how to keep skin looking young.

Great questions – thank you all! Hope to see you at the Walks!

Experts: Thank you very much for yout time and expertise. I’m now closing the chat. Bye.

Bye

Thanks for including me!