This week, the United States' Department of Health & Human Services released its Draft Framework for the National Plan to Address Alzheimer's Disease. This is the nation's first comprehensive plan to target Alzheimer's disease and related dementias. Development of this plan is part of the National Alzheimer's Project Act- a long overdue project, in my opinion.
The plan includes the following specific goals:
• Prevent and Effectively Treat Alzheimer's Disease by 2025.
• Optimize Care Quality and Efficiency.
• Expand Patient and Family Support.
• Enhance Public Awareness and Engagement.
• Track Progress and Drive Improvement.
This plan also includes strategies for accomplishing each of these five goals.
Please review this document and post your thoughts here. I will forward on any comments I receive here on to the National Alzheimer's Plan Act. You are also welcome to send any other comments on this plan directly to: NAPA@hhs.gov. Comments will be added monthly for public review to this document: http://aspe.hhs.gov/daltcp/napa/PubCom.shtml
There is also an advisory meeting this coming week in Washington, DC on Tuesday, January 17 from 9:30am to 4:00pm and Wednesday, January 18 from 9:00am to 2:00pm. It will be streamed live here: http://www.hhs.gov/live.
Many of you have directly been affected by this disease, and your insight and knowledge is very important. I strongly encourage you to take the opportunity to review and comment on this draft of the National Plan to Address Alzheimer's Disease. Let your voice be heard.
Back in 1961 president John F. Kennedy made a commitment of going to the moon. Then in 1969 NASA accomplish that goal, so if you do the math it only took about 8 years. Why does the government feel it would take only13 years to find a cure for Alzheimers? The drug industry have tried for years.in finding a cure. Meanwhile, the skilled nursing homes are being filled with dementia/Alzheimers victims in different stages that either end up dying of malnutrition or pneumonia. The disease is rapidly growing out of control as we are living longer.I fear the time to address this problem has already passed.
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Its up to us as the americans who are caregivers for those afflicted to get involved with the council and help drive their progress so that it wont take 13 more years.i arranged care for my mom who has severe alzheimers and traveled to Washington to be involved with the councils first meeting.im on a limited budget.We can make this happen-We must!thankyou carla danesi glorias daughter “remember gloria,gloria lives”
In an effort to help people with Alzheimer’s and their families the government should help financially by adding to medicare a provision to help pay for care givers, The cost of care is outragious. In the beginning some care and then 24/7. Nursing home options are just as expensive and take the quality of life away from individuals with dementia. When there is no money left and medicaid is the only option left the government intervenes. Then the Alzheimer’s person has to have all their caregiver’s changed to an approved medicaid agency. This change alone is frightening for the family and changes the relationships built up over years with private caregivers. My mother has had Alzheimer’s for 9 years so far. Benefits from the VA have not been forthcoming for almost a year and seem almost unreachable. More documentation, more waiting and never an answer as to when her aide and attendance benefits will start or if she will ever even receive it. My father was a VET from World War II. I call the VA every 2 weeks and get no where. More documentation -the application was filed last Febuary and now almost a year later they are asking for more information/ medical information faxed 3 weeks ago and now they want financial documentation. It seems that they are waiting for my mom to die. Advocate all the time and get no where.
Besides the research that needs more money for this disease, medicare and other insurance companies need to support care in the home 24/7. My 83 year old mother can not do it for my dad who is 84. We have needed in home care for that past 2.5 years. We have been fortunate to afford the care so far but it isn’t going to last. I do NOT want to put my father in a nursing home that still does not know how to care for Alzheimer or any other dementia patient.
Changes in the healthcae system to prepare and regulate whether or not they are in fact providing best practices for these patients is important. Without government interventions, families struggle inordinately financially, emotionally, and physically. The caregiving will kill my mom before anything else. Unless I quit my job to help, I can only do the weekends. Isn’t it cheaper to keep him at home than place him?? Looks that way to me. Thanks, Kathy
To prevent Alzheimer’s disease, let’s consider how people in countries with little Alzheimer’s disease live (differences in diet? stress? sleep? environment? other differeces from us?)
Let’s assure funding for any reasonable research proposal that could help prevent or delay Alzheimer’s. The federal deficit is no excuse for skimping on this urgent need. The deficit will be far greater if we don’t prevent or delay Alzheimer’s disease.
I will echo what others have said in regard to the need to fund home caregiving through a medicare provision. The cost of hiring someone from outside for even one day a week is prohibitively expensive for many families. It’s far less expensive to society overall for Alzheimer’s patients to remain in their homes and this fact should be reflected in financial relief to their primary caregivers. Until a cure is found, this financial need will become even more acute in our aging population.
I know it fantastically difficult for all of us to STOP, turn around, see the person with dementia as OUR teacher and learn what changes we have to make in ourselves to promote well-being in our lives.
Seeing our loved one as a SICK PATIENT compounds the agony.
How many more trillions of dollars will poured into the monster money eating pharmaceutical industry? (Are you watching our financial decline?)
The variety of behavioural challenges is the MAJOR problem.
Doctors, nurses and the medical model is for SICK people, not people who are challenging us and our own mental strength 24/7.
It is not really surprising to explain the difficult behaviour around people where dementia is being experienced.
Acute fear, panic, confusion, irrational actions are telling us to LEARN the art of conducting situations in a light creative style. When the lessons are mastered, the progression of dementia is about how well YOU are developing into a wise and kindly person through using your new skills.
Thank you for your comments. I’ve forwarded these on to the National Alzheimer’s Project Act (NAPA). I will continue to send any additional comments received to NAPA.
If you know of someone who could add to these thoughts or who has experience or insight on Alzheimer’s, please send them the information about this plan and ask them to consider adding a comment. It is so important that we take the opportunity to share our thoughts on such a critically important plan.
As a dementia consultant I applaud the forward movements of our government in this “war” against Alzheimer’s. As a daughter who watched her father succumb, and as a professional weeping with families I counsel, I ache at the snail’s pace of any help in this war. This is a war in which sweat, tears of frustration and deprivation of a normal life often seem to be the only weapons a family caregiver has against an unseen enemy that resides in the brain of a loved one.
As an author, a speaker and a dementia trainer of staff in facilities, I know just how much many of those staff don’t know about how to interact properly with elders with dementia, and it breaks my heart to see the money getting funneled into the pockets of the corporations or wealthy individuals running many of those homes instead of much-needed staff dementia training. That being said, I also know that even when staff receive training, unless the management reinforces and models the training, the staff will revert back to what they used to do. So, training of those people in management is also a critical piece of a successful move toward better care in facilities.
We all need specific tools with which to work, and in this war, tools are few and far between, especially for family caregivers. Information is a required tool and thankfully, About.com is helping on that front.
Let us hope the government will assist those of us possessing tools to help those who need it most.
After reading the document I am pleased so much interest given to finding a cure. However I would like more emphasis on reasearch on finding better ways to help those expreiencing AZ problems now. We have waited a long time finding a cure and during the continued wait please spend more money, research & engergy helping us now.
My specific request is for research to help couples, both are a patient and a caregiver. Skilled people to assist us the with flustration [social & psycological] would help us continue in our home and not cost us or government to care for us in a more expensive setting. After a extensive search I find no specific help for COUPLES both having MCI. I think our medical & government should do better by us.
We have 80 staff who are coached in small groups to manage the daily challenges whilst they are living -in with families who are experiencing dementia. Our visiting carers undergo the same coaching.
Families are invited to attend coaching groups.
It is the DAILY 24/7 domain where NEW, simple skills need to be learned which fit the UNIQUE circumstances of the family dynamic.
Our experience is that cosmetic generalised approaches can frequently create even more erratic responses.
The results are proof that we have found a method to empower the family, including the person with dementia to live a more well being life.
We are based near Oxford UK and would be glad to share.