A few weeks ago President Obama signed into law a new healthcare reform bill which will expand health insurance coverage for 32 million people who are currently uninsured.  This law will be phased in over the next decade but it offers a lot to help family caregivers both in the short term and the long term.

The benefits of the law fall into two categories – provisions which help the care recipient through Medicare and other public programs and those that help the caregiver through expanded health insurance coverage and better consumer protections.  The biggest advantages to care recipients come through better coverage under the Medicare prescription drug program and through expanded health insurance options for pre-Medicare retirees.

Family caregivers will see their biggest benefits come from the fact that health insurance will begin to be de-coupled from employment starting in 2014.  Many family caregivers face the difficult choice of whether to stay employed and hire professional caregivers to look after their loved ones or to leave their jobs and care for them full time.  This decision is made more difficult by the fact that people who leave their jobs risk losing the health insurance benefits that go with them.  By providing new health coverage options and subsidies to help pay for them, family caregivers will have one less thing to worry about when making these difficult choices.

A new and useful publication to help people plan for long term care was released this week.  The Guide to Legal and Financial Planning Needs of Seniors by Homewatch CareGivers was produced to help educate a growing community of Americans needing long-term care, and more specifically the generation of baby boomers approaching retirement, who are running out of time to get their financial and legal issues in order before needing long-term care themselves.

The baby boomer generation, in many circles, has evolved into ‘the sandwich generation’ by having their income’s and savings accounts tugged at from each end thanks to elder parents needing expensive, long-term care, and college-aged, or adult children still feeding from the trough.

By 2020, baby boomers will swell the senior population from 39 million to 53 million, according to the Centers for Medicare and Medicaid Services (CMS), which means one in six Americans will be a senior!

The Guide to Legal and Financial Planning Needs of Seniors offers information on the following critical areas of focus for those concerned about the future:

Editors Note - Caregiver News Roundup will now be appearing every 2 weeks.

Industrial Chemical Linked to Increased Risk of Getting Parkinson’s – A new study has found that exposure to the industrial solvent trichloroethylene increases your risk of coming down with Parkinson’s disease by six times.  Trichloroethylene is an industrial cleaner used in dry cleaning, machine shops and in the manufacture of electrical equipment.

Diabetes Drug Increases Risk of Bone Fracture in Older Women – A study has found that women over age 65 who take thiazolidinedione, a drug to treat Type 2 diabetes, were 50% more likely to suffer bone fractures than women not taking the medication.

57 Million Americans Sickened by Swine Flu – The Center for Disease Control estimates that 57 million Americans have come down with the Swine Flu since April 2009.  

Blood Test May Be Able to Predict Rheumatoid Arthritis – A study has found that blood tests maybe able to detect rheumatoid arthritis years before symptoms appear.  This information make it possible for doctors to identify the disease early and help find the most effective treatments for each patient.

Truth about Heart Disease: There Is No Cure – Heart disease is the number 1 cause of the death in the US and as former President Bill Clinton’s stent procedure shows that while it can be treated there is no cure for it.

FDA Wants to Reduce Radiation Exposure in Medical Tests – The Food and Drug Administration has announced a plan to reduce patient’s exposure to radiation in 3 tests – CT scans, nuclear medicine studies and fluoroscopy.  Medical advances over the past 20 years have resulted in a dramatic increase in radiation exposure from tests.

Marijuana Ineffective as a Treatment for Alzheimer’s Disease – A new study from Canada has found that marijuana is not effective at combating the effects of Alzheimer’s Disease.

Being a caregiver is an incredibly stressful experience and a new study by the MetLife Mature Market Institute has some startling conclusions about its impact.  The report examined employees serving as caregivers and found that they are more likely to suffer from health problems like diabetes, high blood pressure and depression than their co-workers.

Some of the key findings in the study include:

• Caregivers have health costs which are 8% higher than people who are not caregivers and cost employers $13.4 billion a year.

• Employees serving as caregivers were more likely to report poor health than their co-workers.  For example, 17% of female employees ages 50 and older who were caregivers reported fair or poor health compared to 9% of non-caregivers.

• Employed caregivers find it difficult to take care of their own health care needs and are less likely to get preventive care such as mammograms, annual physicals and preventive health screenings.

A recent study conducted in the United States shows a majority of adults who care for their elderly parents or relatives. Individuals aged 48 onwards segregate their lives between working and care giving. The survey, titled ‘Caregiving in the U. S. 2009’, was sponsored by the AARP and The National Alliance for Care giving and funded by The MetLife Foundation.  The survey concluded; 86% Americans, their intermediate age being 48, care for a relative, two-thirds of which are women. Giving around 19 hours a week to their loved ones, while simultaneously handling work and running a household. 36% of these care for a parent, supporting and caring for about four and a half to five years.

According to Elinor Grinzler of the AARC one of the most prominent changes seen in the survey is the effect of care giving on regular work.  The survey showed results with two-thirds of caregivers who either go late, leave early, or take time off from work. With 20% who take a leave of absence, 12% who work part-time or have taken on less demanding jobs, 6% who refused a promotion, 6% consequently lost job benefits, 3% retired early, and 9% who quit their jobs to care for parents or relatives.

Kathleen Ballweg, a flight attendant based in New York, had to take leave to tend to her father who had Parkinson’s disease. After taking a 6 month leave of absence, she worked part-time shuttling back and forth. She now cares for her mother, who has also contracted Parkinson’s, working part-time for the airline. Kathleen’s sister has also moved back to Wisconsin to help out with caring for their mother. This is turning out to be a growing trend among American families, with more members of the family assisting with care to avoid additional investments like assisted living.

A majority of individuals who are care givers do not consider it an adversity. The survey showed 57% people in excellent to good health with 23% of fair to poor health. However, 53% stated their responsibilities isolate them from friends and families and more likely to be emotionally stressed.

The survey also asked of care for disabled children, the report shows an astounding one of seven individuals who care for a disabled child. While caregivers for the elderly do not face many problems with coordinating healthcare, 40% of caregivers for children find it relatively difficult to coordinate healthcare while managing care at home and at school.

Kathy N. Johnson, PhD, CMC is a Certified Care Manager and the Co-Founder of Home Care Assistance, Inc. She holds a Doctorate in Psychology from the Illinois Institute of Technology. Kathy is committed to serving the needs of seniors nationwide through superior in-home senior care.

One In Five Nursing Homes Has Poor Quality Ratings – According to Medicare, 20% of nursing homes have poor quality of care and receive one or two stars out of five in the Medicare ranking system. 

How Doctors Can Assist Caregivers – Doctor’s can help caregiver by asking them questions not just about the patient but also the caregiver’s health, needs and well being.

Brains in Older People Are Good at Sorting Out Useless Information – A new study has found that the brains of older people are better at sorting out useful information versus useless information than those in younger people.

White House Middle Class Task Force Unveils Caregiving Initiative – As part of the federal budget for Fiscal Year 2011, the White House is proposing initiatives to ease the burden for caregivers including $103 million to expand the availability of respite care, counseling, training, referrals, and adult day care.

A broad range of innovations for seniors were debuted at last week’s Consumer Electronics Show(CES) in Las Vegas, from automatic fall detection devices and brain exercise software to iPhone applications and new health websites.  Without question, cutting edge technology for seniors is emerging quickly and becoming more user-friendly. 

This being my first time at CES, I came away amazed and overwhelmed after 3 days of walking through 3 major exhibit halls that each seemed larger than football stadiums.  With over 2,500 exhibitors and over 125,000 attendees, this was a candy store moment for the techie in all of us.    

This conference was so vast that I am addressing it in  3 parts beginning with this post.  Part 2 of this series will address lifestyle technologies for boomers and seniors and  in Part 3, I will write about the Silver Summit, a conference on aging and technology that took place during CES.

Since eCare Diary is dedicated to seniors and caregivers, I will focus this review on new technologies relevant to managing care for aging loved ones. 

1)       Wellcore’s new Personal Emergency Response System is a new lightweight, wearable, and wireless clip-on device that monitors movement, especially a fall.  If your parent or loved one falls, an email or SMS text message will alert you immediately without their having to push a button triggering the added step of an operator making a phone call.  The base unit with one clip-on device retails for $199 along with a monthly service fee of $49.  An additional clip-on is $99.  The product will be available for purchase in March.  For information, visit www.wellcore.com.

Assistance to help people pay for the costs of long term care has been included in both the House and Senate healthcare reform packages.  This bill, known as the CLASS Act, establishes a voluntary, affordable government long term care insurance program. 

The coverage is designed to keep people in their own houses and out of institutions like nursing homes whenever possible. Some of the services covered under the CLASS Act include home care, respite care, home modifications, transportation, and assistive technologies.

The premiums will work in a similar manner to life insurance and will vary based on age at the time of purchase.  They are expected to increase periodically with age. 

In order to qualify for benefits, an individual is required to be 18 years old or older and have paid monthly premiums for at least 5 years.  In order to receive coverage, a person must:

• Be unable to perform two or more activities of daily living (ADL) e.g. eating, bathing, dressing, transferring.
• Have a cognitive disability that requires supervision or hands-on assistance such as Alzheimer’s disease, multiple sclerosis or traumatic brain injury.

Smoking May Be A Risk Factor In Lou Gehrig’s Disease – Researchers have established that smoking is risk factor in amyotrophic lateral sclerosis (ALS) known as Lou Gehrig’s Disease.

Chronic Pain Linked to Increased Falls Amongst Seniors – More than two thirds of older adults suffer from chronic pain.  A new study has found that this pain is a reason for falls in people over 70 years old.

Baby Boomers Getting More Hip Injuries – Today’s senior citizens are more active than previous generations and doctors are seeing more hip and pelvis injuries because of it.  This trend is expected to continue as the baby boomers begin to retire.

A New Cause for Alzheimer’s May Have Been Discovered – Researchers in Spain have discovered that a precursor to nerve growth factor (pro-NGF) may play a role in Alzheimer’s disease.  High levels of pro-NGF are found in Alzheimer’s patients and this accumulation may lead to natural brain cell death.

For this Thanksgiving holiday, we have so much to be thankful for. 

We thank all of you, the community of eCare Diary caregivers, visitors and partners, who’ve helped make the site a success in such a short period of time.  Our mission was to create a centralized place where caregivers could find help, information, and the support they need.  John and I developed this site based on our own personal frustrations as caregivers with the hope that future caregivers would never have to go through what we did. 

I am thrilled to report that in only 10 weeks since eCare Diary went live, the number of visitors and registered users more than exceeded our expectations.  Response to the site has been amazing!  We are overwhelmed by the emails offering thanks, support and terrific new ideas.

We are thankful for our experiences as caregivers.  It wasn’t a role we expected or wanted.  No one wants to watch their parents suffer through long term disease.  However, while those were very difficult, sad times, that experience gave us a hard and fast education on long term care.  We were exposed to information, resources and communities that lead to the creation of this site.

We are thankful for the loved ones in our lives more than ever.  When you’ve suffered loss and death, you appreciate the people in your life in a whole new way.  Around the holidays, John thinks about his parents a lot wishing that they were alive to have met our daughter, Avery.  Their absence makes me more thankful than ever that my parents are still alive, and I appreciate them more profoundly.

We are thankful for our daughter Avery who just turned 19 months old.  She has opened our hearts in ways we never expected.  Giving birth to her reminded us of the preciousness and volatility of human life, interestingly similar to what we observe as caregivers.

We are thankful that eCare Diary is becoming a family affair.  John’s sister, Polly Whitehorn, recently joined us as Director of Special Events and Outreach.  Formerly of the Arthritis Foundation, Polly’s experience and networking has been invaluable in getting the word out about eCare Diary.  Susan’s brother, Kevin Kim, has also joined eCare Diary as Web Designer.  We are so fortunate to have his talent for developing clean, consumer-friendly designs; he is in the process of redesigning the site for eCare Diary 2.0 coming soon!

We are thankful for many new friends we’ve made and partnerships we’ve formed.   Their generosity and assistance have helped propel eCare Diary.  We thank and acknowledge them below.

We wish you a very Happy and Healthy Thanksgiving!

Acknowledgements:

Bill Walters, CEO of ALTHA (a hospital trade association), for featuring a 2 page story on eCare Diary in ALTHA’S quarterly newsletter

Denise Brown, creator of Caregiving.com (blog for caregivers), for inviting John to write a 3-part series on his caregiving experiences with his father

Howard Gleckman, author of Caring for Our Parents, for his long term care expertise

Margery Pabst, author of Enrich Your Caregiving Journey, for her caregiving expertise and articles

MarketWatch.com for inviting John to write “Obamacare: Why it’s Different This Time”

Chris Lombardi, of WomensVoicesForChange.org,  for publishing my article “Sex in the Workplace: A Caregiver’s Story”

Jason Alba, Founder of JibberJobber.com (a relationship management website for professionals and entrepreneurs), for his advice, constant support, and plugs

Katherine Lewis, of CurrentMom.com (a blog for tech mom entrepreneurs), for publishing my story, “Becoming An Accidental Entrepreneur”

Karla Lightfoot and Stella Grizont, of LadiesWhoLaunch.com (women entrepreneurs website), for promoting the site and connecting me to an amazing community of female entrepreneurs

Jean Levin, founder of Caring From a Distance, for her advice, thoughts and insights.

Facebook Fans & Friends, your thumbs up and support encourage us all the time!

Editor’s Note:  eCare Diary is pleased to announce that Michael Chien, co-founder of Head to Toe Care LLC, is a guest blogger today.  Head To Toe Care is a free website offering practical tips for home based caregiving.  Medical professionals give step-by-step instructions, symptom management, and medical provider interaction tips.

My friend is a registered nurse experienced in hospice and palliative care.  This is her story.  Her father is a retired Air Force colonel—he served as a commander in three wars and assumed the responsibility to care for his troops.   He still has this responsibility.  

Last Saturday evening, she received a frantic call from her father that one of his “troops” needed assistance.  They rushed over to the condo of his friend, a retired officer and doctor.  He had been discharged from the hospital after a 7 day stay which included ICU care.  He was discharged to his “home” which is a condo in the independent living section of a life care community.   He had been “home” for about 4 hours when another friend happened to stop by for a visit.  He found the doctor in a chair, in the living room, with no ability to care for himself, or call for help. There were no sheets on his bed and no clean towels or washcloths. There was nothing to eat or drink within his reach, and no possible way for him to get to the bathroom. Recognizing that the needs of the doctor were far beyond his abilities, the friend managed to place the doctor on the sheet less bed and telephoned my father for help.

When they arrived, what they found was heart wrenching.  Not only was the hospital gown saturated with urine and feces, there was evidence of old as well as new urine and feces through out the small condo. It took them two hours to see to his basic needs of bathing, nutrition, making the bed, positioning him comfortably and cleaning the condo as best we could.   The colonel is a smart and capable man.  He had insight to know that he could not have cared for his friend alone.  With her directions, he was able to learn and participate in simple care giving for his friend.          

Sadly, this story is not unique. This scenario is happening all the time.  People are being sent home from various health care facilities (hospitals, rehab centers, etc.)   While care needs are evident, there is little if any communication to achieve a seamless transition between the needs of the patient from the outpatient setting to the inpatient setting, and then back to the “home” setting.  With “real” discharge planning—this situation could have been avoided. A paid caregiver could have been hired as there were no family members available because the family lived out of state. When there are no funds to pay for a hired caregiver, than it is up to family members and friends to see to caregiving needs.  However, the family needs to be instructed on how to provide care.    

This type of caregiving information is vital for families and friends.  This will ensure that those who need care can maintain their dignity and get the care that they deserve.

Allowing My Father to Be Independent While Convincing Him He Needed Help

Parkinson’s is a degenerative disease so when my father was initially diagnosed the medications addressed many of the symptoms permitting him to live independently.  However, as the disease started to take its toll on his body and the medications were less effective, it became harder and harder for him to live without help.  He started to fall, had trouble making meals for himself, dressing himself and bathing himself. 

Medicare Prescription Drug Enrollment Begins - The annual enrollment period for the Medicare Prescription Drug program starts November 15 and ends December 31.  Seniors are encouraged to shop around for the coverage that best fits their needs.

Caregiver Crunch Coming – The aging of the baby boomers, fewer family members and the increasing number of children not living near their parents is going to create a shortage of family caregivers in the near future.

New Law Prohibits Genetic Discrimination – A new law will prohibit employers from requesting genetic tests or considering genetic history in hiring, firings or promotions.  The law also prevents health insurers from requiring genetic tests as a condition of coverage or to set premiums.

Lupus Drug Submitted to FDA for Approval – Experimental Lupus drug Benlysta has completed its first round of testing and is headed to the FDA for approval.  If approved, the medicine could be available by late 2010.

Gene Mutation Is Linked to Parkinson’s Disease – A study in Natural Genetics has found that mutations of the alpha-synuclein gene and microtubule associated protein tau increase the risk of getting Parkinson’s disease.

Editors Note:  In honor of National Family Caregivers Month I will be doing a 3 part series on my caregiving experience.  It will be cross posted at Caregiving.com.

My father was diagnosed with Parkinson’s disease in early 2001 and passed away from it 2 years ago at age 83.  His diagnosis was a life changing experience which resulted in returning to my hometown of New York City from the West Coast and eventually becoming his caregiver.

My father, Ken, started to have hand tremors in 1996, an early symptom of Parkinson’s and a number of other conditions.  He was referred to a neurologist who told him he did not have Parkinson’s but prescribed medication to relieve the trembling.  Incorrect diagnoses of this disease are common because there is no test for Parkinson’s.  Doctors are left to make decisions based solely on symptoms. 

For most of the late 1990s my father lived a full and productive life with few signs that he was suffering from the disease.  In retrospect, there were signs my father had Parkinson’s long before it was properly diagnosed.  He had always had tons of energy yet he started to feel fatigued.  He began to shuffle as he walked and his posture became stooped.  These are all symptoms of Parkinson’s disease.

Healthcare Reform Bill Will Lower Medicare Prescription Drug Costs – The healthcare reform bills being considered in Congress will save $24 billion in the Medicare Prescription Drug program which will be used to close coverage gap known as the "donut hole." 

Parkinson’s Disease May Be Slowed by Antioxidant – A new study found that the progression of Parkinson’s can be determined by the level of the antioxidant urate in serum and cerebral spinal cord fluid. Higher levels of this antioxidant can help slow the disease.

Seniors with Dementia Have a Higher Death Rate from the Flu – Senior citizens who suffer from dementia are 50% more likely to die from the flu than those not suffering from dementia. Part of the reason is these patients have a harder time communicating their symptoms to doctors. 

Diabetics Suffering from Alzheimer’s Have Slower Memory Loss – A French study has found that diabetics with Alzheimer’s have slower memory loss than people suffering from only Alzheimer’s. 

Coffee Can Be Good For Your Health –A Harvard Medical School study has found that coffee can help prevent or slow numerous diseases including cancer, diabetes type 2 and Parkinson’s disease. 

Tai Chi Can Help Arthritis of the Knee – A British study has found the Chinese exercise can help relieve osteoarthritis in the knee. 

Robot Can Help Aging Parents Live Independently – A session at TEDMED, a healthcare technology conference, discussed the use of robots to help care for aging parents at home. This technology could eventually help more people stay in their homes.

Today I attended a conference for professional geriatric care managers (GCMs) in New York City.  I had an idea of who they are and what they do, but admittedly, wasn’t one hundred percent clear.  Interestingly, I learned today that many people don’t know who they are or that their service even exists.  Today I got my education and would like to share it with you.

Who & What

GCMs are professionals who conduct in-depth assessments of elderly clients to identify solutions and suggest a customized care plan.  Their knowledge, experience and network can help families navigate the complex system of eldercare.  They can assist with a wide range of topics: 

• Financing care (long term care insurance, Medicare, Medicaid)
• Placement in care facilities (such as adult daycare, nursing homes, assisted living facilities)
• Finding home care agencies
• Eldercare products
• Home living space and design
• Legal documents
• End-of-life planning

GCMs can also serve as a third party when families are having trouble discussing care planning amongst themselves.  They can guide the conversation and even help families through conflicts. 

Earlier in the summer I wrote about President Obama’s support of the late Senator Ted Kennedy’s long term care insurance bill as part of health reform.  While this proposal is an improvement over current programs, it does not provide the comprehensive solution families need to pay for the cost of long term care.

Caring for an elderly or infirm relative is both time consuming and expensive.  According the Department of Health and Human Services, the US spends over $200 billion per year on long term care services.  To give you an idea of what this means to a person receiving care, it costs between $18 and $29 per hour for home health care services and an average of $209 per day for a nursing home. 

Medicare provides only limited coverage for long term care so the US has a piece meal system to cover these services.  The most common ways to pay for care are:

1. Long Term Care Insurance – About 10 million Americans have purchased these policies.  While they help cover the cost of care, they generally cover less than 50% of the expense of long term care. 

2. Medicaid – This program that pays for long term care for people who are poor.  Many people divest themselves of their assets to become eligible for Medicaid coverage.  The rules vary by state.  To learn more about each state’s requirements visit the Financing Care  page of eCareDiary.com.

End of life planning is getting a bad name because of the misinformation being spread about death panels and death books.  This is a shame because end of life planning is important and something we should all be thinking about for ourselves and our loved ones.

End of life planning is about ensuring you are in charge of medical decisions if you become mentally incapacitated and are unable to communicate.  While many people ask that life support be removed if there is no hope of recovery, a living will can require that all life sustaining procedures to be preformed in order to keep you alive.  This is your decision.

I experienced the importance of end of life planning first hand when my father, who had late stage Parkinson’s Disease, suffered a stroke which left him with little brain function.  After the stroke, we learned he had advanced cancer which had not been diagnosed.  While he was able to breath on his own, he was unable to feed himself, drink or perform any bodily functions without assistance. He was totally dependent on others to sustain life.

Fortunately, my father went through end of life planning after being diagnosed with Parkinson’s Disease.  He had a Living Will clearly expressing his wishes, designated a Health Care Proxy to speak on his behalf and established a Power of Attorney for his legal and financial affairs.  Having all this in place removed any doubt about his wishes and eliminated additional stress on the family.