I am preparing for my trip to Washington DC, and I am requesting your help. Please log onto the home page - www.thealzheimerspouse.com, and read today's blog. Use this thread to post a short response - your #1 priority for Alzheimer's Legislation. Long personal stories and ideas can be posted under the existing topic - The Alzheimer's Patient Loses Again. Keeping the short one - the #1 one here in this thread will help me tremendously in sorting through everything. Thank you.
I have 2 needs. Affordable Daycare for my husband or at least help paying for it. I am paying now more than 1/2 of our income for him to attend. I am using savings to supplement. He goes to Daycare 5 days a week because I burned out after 14 years of this hell.
Also,need good and affordable respite for a real time out. Thanks, Joan , for carrying our messages . My prayers go with you.
Allow the Caregiver to do the most important job in the world by not allowing them to go bankrupt! Someone needs to legislate that caring for someone you love should not ruin you financially.
It's too late for this to help us, but more help for people with early-onset dementia would be my wish. My husband finally hit the magic age of 60, and is now eligible for some help with this "old people's disease" that he's had for years. Before that, even the social worker at the Alzheimer's Association could not find any help for us at all, just because of his age.
Waiving the two-year wait for medicare would be a huge help with this. Before that, we kept COBRA as long as we could--at a cost comparable to having an additional mortgage--and meanwhile, DH was enemployed because of dementia. This one thing just about wiped us out financially.
I double ditto what GuitarGuy says. Greater share of cost should come from the government programs we have paid into all these years. MEDICARE and SOCIAL SECURITY! We shouldn't have to pay into them our entire working lives only to be told we have to sell off and spend everything before those programs seriously help. We pay into them, half a century or more, only to be treated like we are begging for welfare when the time comes we need them.
We need more accessable day care and long term care. If the VA had not come to our rescue, my husband would have no where to go for long term care. Financially, we can either divorce and try for medicaid (but you all know about the look back) or stay together and become bankrupt. Instead of giving these CEO's more money for $12,000 toilets in their office suites, how about helping those people who actually paid taxes and social security and will not live long enough to collect social security!! A little dignity and respect would go a long way. Thanks Joang for being our spokesperson. Good luck.
I just got off the phone with someone who works with NY state, AARP and who handles long term care insurance. I filled out a form from NY state to get more info on what NY state can offer as far as long term care is concerned. Of course I know that once you have AD you cannot get long term care insurance. But I thought, there may have been some changes and so I took the call. This person kept trying to give me Long Term Care Insurance and I said "I Don't Need Long Term Care, but my wife sure does"! All I got on the other end of the line was silence, which is what I have been getting from society at large since my wife got the DX last year.
You know, I'm just stupid, I thought Medicare was supposed to take care of us should we become unable to care for ourselves. Obviously not. When I first discovered the world of AD I was in shock for a number of reasons. One of things I didn't understand was, why do I need to get a lawyer? When I realized what I needed a lawyer for, and the entire state of care and treatment for AD I said to myself, well that's it, we're screwed! Tell them that in Washington! Maybe you will find someone who will listen and isn't afraid to do something. I doubt it. As I've said before, my wife and I are in a row boat, with no paddle, there is a storm, and I find that the world is flat and we are heading straight for the edge. And you know, if that is the way it is going to be for the rest of my life, fine, somehow I will handle it. And those who could have helped and didn't, well let me say, I'll have a lot to say to them when we meet in hell!
Yeah you guessed it, I am VERY ANGRY, this whole thing smells rotten and I have no, NONE, zero confidence that Washington will do a god damn thing!
1. Early Diagnosis and good medication; 2. More available help in their care so they can stay home longer if that is applicable; 3. More help on the financial side as the disease can wipe out not only the person with the disease financially but also the spouse for their future.
Medicare and insurance coverage for the cost of supervision or help with activities of daily living due to illness. Caregivers should be able to get help with day care, home health care aides, or the cost of long term care in a facility. Medicare will pay for a wheelchair for people who can't walk but not for the help needed by people who can't think.
I agree with pamsc: Long term care HELP thru Medicare, to allow us to send them to day care or have home health people come in on a regular basis, with co-pays but not full payment coming from the home caregivers.
And more help (medicare waver, research) for the EOADs.
Extra incentives for the caregiver to be able to keep their loved one at home without going into fiancial ruin.
affordable insurance programs thru a govt program for the caregiver spouse who cares for inhome AD victim and who is not eligible yet for medicare themselves. finding individual insurance that is affordable is almost impossible if you have any medical issues your self.
waivers of soc sec/medicare waiting periods of afflicted AD victims and less redtape to get them qualified. divvi
Allow the Caregiver to do the most important job in the world by not allowing them to go bankrupt! Someone needs to legislate that caring for someone you love should not ruin you financially.
The US Government may consider as legal precedent, part 1 of the 25th article of the Universal Declaration of Human Rights:
Article 25.
* (1) Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.
We desperately need Long Term Care benefits added to Medicare coverage.
Allow Veterans who served during wartime, (within the stated dates) to receive Long Term Care Benefits, regardless of income. They served! - and most retirement income will not support the spouse and LONG TERM CARE expenses.
REPEAT: LONG TERM CARE BENEFITS, PLEASE!........... As expenses go up, so do Memory Care facility monthly fees.
I would like the whole group of leaders (gov., Med., Ins., Social Security, Medicare, etc) somehow educated on the huge impact that Alzheimer's has on families. The spouces, children and even parents of those involved with AD need to be recognized for the extreme dedication to a loved one of any major disease in the country. It is not only financial but also involves major stress, physical deteriation, illness, and of course the real possibility of their own disability and even death.
I suppose my #1 priority would be first and foremost UNDERSTANDING of the disease and what a caregiver as well as the affected LO has to go thru. #2 that this disease doesn't just strike old people! And that with younger and younger diagnosis there are more and more issues. Such as the ones stated by others.
I guess I am of the thinking that all things can't be fixed by money, And that there is so many other issues that need financial help that I could only dream that they have enough to go around to fix all the health issues in our country. So that's why I think understanding is foremost for me. Rk
OPP"S/Edited/Added They need to get a handle on Pharmaceutical Company's and their medication charges. It's appalling what they get away with. OK so I have more than one priority, sorry Joan!
I agree with all the concerns about more research, education, early diagnosis and long term care. These are all very important and need to be addressed. But if you want to pass legislation then simply add an amendment to the US Constitution:
XXVIII Section 1: The right of the people to adequate health care shall not be denied.
Section 2: The Congress shall have power to enforce this article by appropriate legislation
There done!
I would also love to repeal Amendment XV1, but I don't think I'd have much luck!
The VA is overwhelmed -between the young vets from Iraq, Afghanistan, etc and the aging baby-boomers. They have to set limits on income qualifications.
What is needed is better medicaid and medicare. Years ago they said it was cheaper to keep people at home vs nursing homes and they were going to encourage that with home health aides, day care, etc. Well, that is happening but the government should help more with the cost. They should be thankful they are being kept at home vs the expensive nursing homes.
So what we need is a priority on medicaid and medicare encouraging AND paying (at least of portion) for home aids and day care. As they say - heath care has gotten so expensive and out of hand, they need to encourage this and help keep the cost down. Part of healthcare cost is to control the nursing home cost. Even foster homes are just as outrageously expensive.
My #1 priority would be help with long term care so the surviving spouse is not left destitute. As I look at the present situation I can see that, not only will we have to spend all our retirement money (what's left after the stock market crash) for care of my wife, but we run a serious risk of losing the family home and land - property left by previous generations for the benefit of the entire family, not just spent on one individual.
My #1 is a composite. Any and all Dementias be recognized as MEDICAL conditions in the same manner as Diabetes, Parkinsons, etc. and afforded the same levels of coverage, and that long-term and in-home coverage be readily available, within "reasonable"(defined) guidelines that will not bankrupt the surviving spouse. These to be implimented through Social Security, Social Security Disability, Medicare, Medicaid and the Veteran's Administration in a timely manner after Diagnosis is presented--no extended waiting period.
All the paper work bull-- to piece together coverage and care while being the caregiver is insane. Streamlining it to get the coverage in place would be a Godsend, freeing us to set up and do the care.
The one thing is that Medicare and Medicaid should have to help the care givers. Besides all the emotional stress of seeing your LO die a little more each day, there are all the expenses that we have to somehow take care off. How much do the lawmakers think Adult diapers and pull ups cost? How often we have to buy them and all the other cost. Like detergent and electricity because we cannot leave the house dark, we have to use the washer and dryer almost 24/7 just to keep the sheets and their clothes clean.We could use home health care and the list goes on and on.
I think adding long term care benefits to Medicare would be wonderful, but realistically, it's not politically feasible since the funding situation is already problematic without that coverage. My suggestion would be for the government to pay salaries to caregivers of dementia patients. Then we would have additional resources to pay for day care, bring help into the home, assisted living/nursing home care, and the other myriad expenses we face in dealing with our LO's illness.
I would like somehow to impress upon the lawmakers that we have the proverbial immovable object (the current state of our medical system) colliding with the unstoppable force (Alz epidemic). The system in general just doesn't have time to mess with it as it takes too long to figure out the problem and there is nothing they can do about it. I am fairly certain there was NO thought put into how ALZ issues would fit into HIPPA rules when they were enacted and that is just one of many challenges presented by the system. Secondly, how our country can provide the unfettered aid to illegal aliens AND countries all over the world while we have people here in our country running themselves into the ground trying to survive caring for a loved one with ALZ is absolutely beyond me. Good luck Joan, thx for the effort. Thenneck
I have to agree with Jan K ... dementia is bad enough, without getting turned away everywhere you look because you're young. That's purely ridiculous. Age discrimination. Our younger members need MORE help, not less.
Once the EOAD people have equal access, then as Charlotte said, a priority on medicaid and medicare encouraging and helping to pay for home aids and day care. It just plain makes financial sense ... one of the very few ways to actually save the Government money.
The California Alzheimer's Association just published a report on the economic impact of AD and related dementias, now and within the next 20 years. It is eye-opening reading.
Joan: I Would be glad to help you and carry any of the EOAD requests. There are so many needs and too few ears to listen. Any help I can give you or we can do together to get the word out for your readers let me know. I agree that at least this year, we both have a better idea of what to expect and hopefully get more responce.
Thank you. Last count I got was about 12-15 of us from Florida going to DC, so we can spread out and cover more ground. I'll give you a call next week. Please check the "sticky" discussion - "Use this discussion to contact each other". Kelly 5000 wants to get in touch with you.
Hey everyone - from the website - it's me, Tony, Trish and her husband Bob, and Nancy Howe and her husband, Dave (The Evil Fog author) who are going to DC. Did I leave anyone out?
One thing that hasn't been mentioned: part of the reason that nursing home (and doctor and meds) costs are so high is the amount that all of these entities have to pay on protection from being sued if something goes wrong. As ANY medical protection is being considered, there should also be SOME protection for those in the medical protection from FRIVOLOUS or non-involved lawsuits. This is not to say that I don't recognize the need to make REAL malpractice suits available. But our society believes there should be an answer for everything, and everyone should be held accountable, there are no accidents and no accidental happenings. And that makes it difficult and expensive for the entire medical profession and for the government to pay.
briegull - you are correct. We are a sue happy society. There is no personal responsibility anymore. Every year there is a list of the top 10 worst lawsuit decisions - they are unbelievable. I laugh at smokers and their families who sue. I remember when the surgeon general came out with the warning. I have know since then the dangers. We use to put my mom's cig out every time we walked by. We would take her new carton, open each pack and draw circles half-way down (remember when they said only smoke half and it would be safer?); we also fed many cigs to the goat who loved them (minus the filter).
Article in the paper yesterday about the 9/11 victims who elected NOT to be part of the federal settlement (which gave survivors >1mil.). They are suing everyone from United Airlines on down. And apparently going to make more than the people who were part of the settlement, though that's not too clear.
Next week, I am going to print this discussion and list all of the priorities. It will be part of what every legislator hears from me. Names will be excluded - even screen names - for privacy sake.
Joan thank you so much. #1. Make sure the Alzheimer patient is not left out when it comes to qualifying Health care, Alzheimer is a Physical condition. The brain is injured, how much more physical can you get.
#2. Make sure the spouse of a NH patient does not have to be placed in poverty in order to get help. One spouse should not have to spend down their life savings just because the other spouse becomes so dependent that it takes a NH for the care. Some things are too hard for anyone to do.
One thing I would like to add is to lower(or delete) the minimum age for enrollment in clinical trials. It's a shame that someone like Tony's wife could not participate because she was to young.
Thanks for all of your comments. Bob and I will do our best to pass them on to our represenatives.
trish, I don't think Congress has anything whatsoever to do with the age requirements for clinical trials. Each pharmaceutical company or research institute running a trial decides which patients to target.
And it would perhaps not be a good thing to change the age requirements, although I realize many families struggling with EOAD would be very unhappy with me for saying that. The problem is, it's already very difficult to evaluate drug efficacy, due to the many variables involved -- gender, stage, genetic background/heritage, diet, other medications, other health problems, and on and on. If you start stretching the age limits to younger and younger people, you're quite likely to get patients who have been misdiagnosed, on top of the age and other health issues/medicines variables.
First off thanks for all of the great information you bring to this board. I always enjoy reading your posts.
I respectively disagree with your some of your concerns. Years ago the minimum age requirements for AD studies was 60. Thank GOD many studies have lowered that requirement to 50. Novaris currently has one where the minimum age is 40. It is estimated that 1% (50,000) of people diagnosed with AD have the familial genetic mutation. These mutations were used in transgenetic mice models to develop many drugs in todays studies. To exclude those with eFad based on age is very unfair. Some studies are having challenges recruiting older patients due to health issues and the lack of caregivers willing to accompany them for the duration of the trial.
I should not be contributing to this - because I am far from knowing what is or is not true. But what comes to my mind is that Trish refers specifically to Alzheimer's Disease... I have learned so much on this site about the many, many differnt kinds of dimentia (FTD, and the like).. I wonder how Research Doctors would know what they were looking for initially. My husband went through all the tests, and then - they defined HIS diagnosis. Could we be talking about two different things here... Research and Trials - which would folow the DX?
I wish I knew how to express the above more intelligently. I know our specialist (who is a renown, highly respected physician in the Alzheimer's across the country,..) identified the familial genetic mutation in DH's DNA, however she urged his children not to be tested at this time. If their tests were positive, and it got into the wrong hands, it could affect careers and insurance eligibility.
Actually, you are helping to build my case for me, Trish. People with sporadic AD -- the vast majority of AD patients -- don't have the eFAD mutations. Right now, the only genetic component that we know about for sporadic AD is the APOE4 risk factor. That allele doesn't even cause AD per se, and yet patients who carry that allele may respond differently to investigational drugs than patients who don't.
If you bring patients with eFAD into a clinical trial, then we have to start wondering what impact those mutations might have on response to the drug, as well. Those mutations aren't just risk factors, they are known to cause dementia. And the last time I looked, there were something like 144 known mutations that can cause eFAD, and researchers believe there may be many more.
We may eventually discover that at least some of these actually cause entirely different disorders.
And Nancy is, I think, getting at what I was implying ... the rate at which FTD is being diagnosed is skyrocketing. FTD now accounts for far more of the dementia in younger patients than AD. It is still extremely difficult to differentiate among the different types of FTD and between FTD and AD, yet the underlying pathologies are markedly different. If the pharmaceutical companies open up the trials to younger patients, they are very likely to end up inadvertently including a lot of FTD patients, and the FTD patients are very likely to respond differently to the drugs than AD patients.
When analyzing the data from a trial, they have to use ALL of the data in determining whether a drug has met its goals -- that is, the drug has to be beneficial on average, for all patients in the trial. The drugs are not approved if a few of the patients here and there are helped. So if the pharmaceutical company uses too much of a mix of different patients with different genetic makeups, they are setting themselves up to fail, even if the drug might indeed help some subset of dementia patients.
So they have to define a subset that they believe will be helped, and limit the clinical trial to that subset. Now, they can do genetic profiling, and include sporadic AD patients with and without APOE4; and then analyze the results from APOE4 carriers and noncarriers separately. And including both types of patients in a trial may often be economically feasible. But to try to include enough patients with each of several other, eFAD mutations, so that there are a sufficient number of patients with each that the results will be statistically significant ... that starts to get very, very expensive. And since each different eFAD mutation is so rare, it's also very unlikely that they'd get enough patients enrolled, anyway.
I understand your frustration and anger, but it's not a matter of being unfair or age discrimination ... it's a matter of trying to design clinical trials so they can succeed if the drug is indeed beneficial to some subset of dementia patients.
Many (most? all?) of the drugs that were developed using transgenic mice are failing in clinical trials. Maybe those drugs should be tested with eFAD patients -- they might find that the drugs are efficacious in eFAD patients even when they fail with sporadic AD patients.
Today's (Wednesday, March 18, 2009) Blog explains the Alzheimer's Association's lobbying priority list, and how your issues can be included (by me as a delegate). There is a lot of information in the blog. I invite you to read it, and post more ideas and comments here.
(Joan, can you make that link open in a new window or tab?) The lobbying association goals are worth reading. They are in very fine print. Remember that you can enlarge the text on a web page by either command + or Ctrl + when you're looking at a page.
I listed the The Alzheimer's Association Lobbying goals as part of the blog (at the end) in big blue print. I listed the ASG mission statement in the middle of the blog in bold black print. My "linking" skills are as you see them, until I get my expert assistant on board (after my trip), but I never knew about your "Ctrl+" suggestion. For those who cannot read the print on the ASG web page, I would suggest following your suggestion. Thank you.