Caregiving Conversation Between Your Heart and Your Head

March 08, 2013
By:  Sherri Snelling

I recently attended a salon event hosted by The Judy Fund, an Alzheimer's Association donor sponsored effort created by Marshall Gelfand and his family now lead by daughter Elizabeth Gelfand-Stearns who lost both her grandmother and her mother, Judy (the fund's namesake), to Alzheimer's disease.  Elizabeth's heartfelt passion is finding a cure for the disease that took her loved ones. To date, the family has raised almost $5 million to fund research and advocacy efforts for the Alzheimer's Association in support of the more than 5 million Americans who have Alzheimer's as well as the 15 million family members nationwide who are caring for them.

What made this evening special were the headliners:  two rock stars in their respective medical specialties, Dr. Jill Kalman, a noted cardiologist at Mount Sinai Medical Center in New York, and Dr. Maria Carrillo, vice president of medical and scientific relations for the Alzheimer's Association. Together, they addressed the twin terrors many women in the audience are concerned about:  heart disease and Alzheimer's disease.

The American Heart Association has done a superb job raising public awareness that heart disease is the No. 1 killer for women (and for men).  Although one in three women still die from heart disease, education about prevention is on the rise.

As the red dress-clad Dr. Kalman told the audience, "The brain gives the heart its sight and the heart gives the brain its vision."  Insightful words as the message for the evening was a dialogue about how Alzheimer's advocates can take heart and follow the blueprint that heart disease (which has now evolved to heart health) has provided on how to combat an epidemic.

Dr. Carrillo was riveting as she outlined recent research being done, particularly in the area of familial Alzheimer's disease also known as autosomal dominant Alzheimer's disease (ADAD).  A comprehensive study is being conducted in families who carry a gene for Alzheimer's, which, if inherited, guarantees they get the disease at a young age—30s, 40s or early 50s.  ADAD is very rare and the families who are affected by this type of Alzheimer's usually are aware of the gene in their families.

I was astounded to learn that ADAD family members who do develop Alzheimer's disease do so at the exact same age their parent developed the disease.  If a parent was diagnosed at age 42, then a child who carries the gene also develops Alzheimer's at age 42.  Dr Carrillo also discussed recent updates in the early diagnosis of sporadic Alzheimer's disease, the most typical form of Alzheimer's affecting more than 5 million Americans. This set off a skyrocket of hands in the audience and much discussion around whether families want to know and should know (if a test ever becomes widely available) how to predict your future Alzheimer's diagnosis years ahead of your first warning signs.  Both doctors agreed – it is better to be informed than to be living in denial or ignorance.

While much debate always follows any exciting news, the results of this study are still years away.

Where does that leave us today? According to the docs, what we do know is that healthier lifestyle behaviors (exercise, nutrition, good sleep), knowledge of our family health histories, and reduction of stress in our lives will improve both heart health and brain health.

We can make lifestyle choices that keep both the heart and the brain healthy.  For instance, we know that a higher BMI (body mass index) and higher cholesterol (particularly the bad LDL kind) is certainly a risk factor for heart disease and may be a risk factor for Alzheimer's disease.  We also know inflammation is bad – it is connected to the brain abnormality typical of Alzheimer's patients and it is a common problem for victims of stroke and heart attack.  This is why it is so important for family caregivers to pay attention to both the heart and the head.

Often caregivers neglect themselves. Studies show caregivers are twice as likely as the general population to develop chronic illness – heart disease, diabetes, asthma and other health problems – because of prolonged stress.  Both doctors agreed family caregivers typically become more ill or even die before the demise of their loved one for whom they are caring.  Becoming a caregiver should be added to the list of risks for heart disease and a whole host of other health ailments.

As a caregiver, you use your heart to provide compassionate comfort and support to a loved one.  Now use your head – if you become ill or too exhausted to continue to care, what will become of your loved one and of you?  Avoid what I call the Caregiver Achilles heel – the inability to ask for help and accept the help offered.  Try creating an online volunteer help community such as the Alzheimer's Association Care Team Calendar where friends and family can give you a break with the kids, help with your mom, or perform every day chores such as making a meal or raking the leaves when you are too overwhelmed to manage it all.

Judy Gelfand was a Juilliard-trained pianist diagnosed with Alzheimer's at age 62.  Her family cared for her for almost 10 years before she lost her battle with the disease.  And although she is gone, her legacy lives on in her family's efforts to find the clues on how to stop Alzheimer's in its tracks.  It is her daughter, Elizabeth, who created an evening to show how much our hearts and brains are connected in this fight.

The message is simple: Find the balance between caring for your loved one and caring for yourself.  Your heart and your head will love you for it.

Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America's 65 million family caregivers with special emphasis on how to help caregivers balance "self care" while caring for a loved one. She is the former chairman of the National Alliance for Caregiving and is author of A Cast of Caregivers, a book about celebrities who have been caregivers.

http://blog.alz.org/caregiving-conversation-between-your-heart-and-your-head/

"Learn About Senior In Home Health Care in Traverse City and Northern Michigan

Senior Helpers Provides Many services in the Traverse City and Northern Michigan area. We provide a full array of Home Care services for seniors and the elderly living in this beautiful area. Our Home Care Services are provided by bonded and insured employees and all employees pass a National Background check.

If you need Home Care services in Alpena, Bellaire, Boyne City, Cadillac, Charlevoix, Cheboygan, Empire, Frankfort, Gaylord, Grayling, Harbor Springs, Houghton Lake, Indian River, Northern Michigan, Petoskey, Roscommon, Suttons Bay, Tawas City, Traverse City, West Branch and the surrounding areas we are an excellent choice with impeccable references. Home Health Care for your elderly loved ones is never an easy choice but we can promise we will do our best to make it as painless as possible. From our family to yours we sincerely thank you for considering Senior Helpers of Traverse City and Northern Michigan Home Health Care Company. "

New Push For Early Testing, Treatment for Dementia

by Laura Landro
The Informed Patient, Updated February 25, 2013, 8:06 p.m. ET

A new push is under way to improve screening and follow-up care for patients with dementia, the devastating loss of brain function that impairs memory, thinking, language, judgment and behavior.

With no cure and little in the way of treatment, experts have long debated the value of screening for the condition. But newer research suggests that the benefits of routine dementia testing in older patients may outweigh any potential harms. Identifying the problem at a milder level of impairment—and enacting a care regimen—may stave off a crisis that can disrupt patients' lives, prevent them from putting their affairs in order and levy extreme burdens on caregivers.

Under the new U.S. health law, Medicare will cover an annual wellness visit that includes detection of "cognitive impairment," or a measurable change in thinking abilities—especially memory—that signal a dementia risk. Once diagnosed, patients can be helped with family support, medication management and brain games to help delay further declines.

The U.S. Preventive Services Task Force, a government advisory body, is currently reviewing its 2003 guidance that there is insufficient evidence to recommend for or against routine dementia screening in older adults.

Rather than one disease, dementia refers to a group of symptoms severe enough to interfere with daily life. Most commonly caused by Alzheimer's disease, which affects 5.4 million people in the U.S., it is also linked to other age-related problems such as stroke or Parkinson's disease. According to the Alzheimer's Association, the annual incidence of all dementias is expected to double by 2050 as the population of older adults expands.

Yet studies show that up to 81% of patients who meet the criteria for dementia have never received a diagnosis. A 2009 review of research on missed and delayed diagnosis of dementia, led by researchers at Baylor College of Medicine, found that doctors may not focus on memory issues while treating older patients with other health concerns. They may even knowingly withhold a diagnosis of dementia to avoid burdening patients.

The Alzheimer's Association recently published recommendations to help doctors assess cognitive impairment during checkups. These include asking patients and caregivers about whether confusion and memory loss are worsening and using widely available cognitive screening tests that take less than five minutes. Doctors can use the results to determine whether patients need a more complete evaluation.

Studies also show that continuing, individually tailored care-management programs can improve quality of life for both dementia patients and their caregivers. One model gaining attention, which takes a team approach to care management, is the Healthy Aging Brain program, developed at Indiana University Center for Aging Research, in conjunction with the nonprofit research organization Regenstrief Institute. A pilot program at two university-affiliated health systems reduced emergency-room visits by 45% and hospitalizations by 54% for dementia patients receiving a year of care management, compared with those not in the group.

In 2008, following the pilot, Wishard Health Services, affiliated with Indiana University, opened the Healthy Aging Brain Center, where patients can receive a full diagnostic work-up, including neurological exams and brain scans. If dementia is confirmed, the center's nurse practitioners, social workers and care managers work closely with family caregivers and primary-care physicians to customize care plans, reviewing medications to reduce the use of drugs that can be harmful to older brains. They also use aging-brain software to collect data on symptoms, track the stress level of family members and monitor how well patients' goals and needs are being met.

With a grant from the Centers for Medicare and Medicaid Services last year, a team led by Indiana University and Regenstrief's researcher Malaz Boustani expanded the program to about 2,000 patients at 11 facilities operated by Wishard. Dr. Boustani, who is also associate director of the Healthy Aging Brain Center, says he is working with health-care systems in other states to duplicate the program, with an aim to affordably scale up the model to a national level.

"The care for dementia patients right now in this country is suboptimal," says Dr. Boustani. "This model puts less emotional and financial burden on the individual, family members and the system paying for health care."

But simply screening for dementia isn't enough, Dr. Boustani cautions. At least 20% of those who screen positive on questionnaires may have normal cognition, which would only be apparent with more testing. And for those who do have dementia, counseling and care management are necessary to prevent anxiety and depression and keep patients healthy.

One big hurdle to success, says Dr. Boustani, is getting patients and families to overcome some of the stigma and fear associated with dementia. Families may be in denial or assume that memory problems are just a normal part of aging, while patients may be terrified of losing their ability to live independently. But his studies show the majority of older adults are willing to undergo screening when offered the chance.

Betty Crowe's three adult children began noticing in late 2010 that their mother, now 81, was having problems with short-term memory and often repeated herself. The former teacher and counselor from Indianapolis has her own apartment in an independent living facility, and says she didn't think she had a problem, but agreed to see Dr. Boustani in May 2011 after a family friend suggested the Healthy Aging Brain Center. After a comprehensive assessment—including interviews with her and her family, neurological and psychological tests, a brain scan and blood tests—she was diagnosed with mild cognitive impairment due to the earliest form of Alzheimer's. A plan was made to re-evaluate her in a year.

To reduce the risk of the disease accelerating, the recommendations included 60 minutes of brain exercises daily, 15 minutes of moderate-intensity physical exercise and avoidance of medications that might worsen the condition. In May 2012, she returned, and after more tests and interviews, was diagnosed with Alzheimer's and enrolled in the center's home-based program to help manage her symptoms and provide support for her family.

Her children visit often, stay in touch with the medical team and divvy up responsibilities: Larry Crowe, an Indianapolis police officer, gets her to doctor's appointments, while Lloyd Crowe, a deputy police chief, works on her finances. Their sister Linda Crowe-Knight, a receptionist, keeps track of medications.

Ms. Crowe receives regular home visits from occupational and physical therapists, who work with her on puzzles, problem-solving games and exercise, including walking, stretching, leg exercises and light weights. Lloyd Crowe says his mother also dances around the apartment "whenever the mood strikes her."

Dr. Boustani told the family that Ms. Crowe is still in the "green" zone, meaning she could still manage many activities of daily life, and Larry Crowe says their goal "is to keep her there as long as possible." For her part, Ms. Crowe says she still thinks she is fine without help and is upset she can't drive her car anymore. "The one thing I'd like to have is my independence, and I still haven't come to grips with that," she says.

But she is happy to be living in her own home and appreciates the program. And, she adds, she is doing much better than some of her peers who have the same diagnosis.

Write to Laura Landro at laura.landro@wsj.com

http://online.wsj.com/article/SB10001424127887324503204578320032854013890.html?KEYWORDS=dementia

"Learn About Senior In Home Health Care in Traverse City and Northern Michigan

Senior Helpers Provides Many services in the Traverse City and Northern Michigan area. We provide a full array of Home Care services for seniors and the elderly living in this beautiful area. Our Home Care Services are provided by bonded and insured employees and all employees pass a National Background check.

If you need Home Care services in Alpena, Bellaire, Boyne City, Cadillac, Charlevoix, Cheboygan, Empire, Frankfort, Gaylord, Grayling, Harbor Springs, Houghton Lake, Indian River, Northern Michigan, Petoskey, Roscommon, Suttons Bay, Tawas City, Traverse City, West Branch and the surrounding areas we are an excellent choice with impeccable references. Home Health Care for your elderly loved ones is never an easy choice but we can promise we will do our best to make it as painless as possible. From our family to yours we sincerely thank you for considering Senior Helpers of Traverse City and Northern Michigan Home Health Care Company. "

As Alzheimer's rate soars, concern rises over costs

Concerns are increasing over the nation's ability to afford Alzheimer's care and support systems.

New reports that the number of Alzheimer's cases in the USA will likely triple to 13.8 million by 2050 are raising concerns about the nation's ability to afford care.

Care for patients with Alzheimer's and other forms of dementia will increase 500% by 2050, reaching $1.1 trillion, according to the Alzheimer's Association. This is in 2012 dollars. About 70% of costs for Alzheimer's care are billed to Medicare and Medicaid.

Patients with Alzheimer's and other forms of dementia will spend three times more on health care than patients with other types of illnesses, the association says. Medicare patients with Alzheimer's and other dementias spent $43,847 on health care and long-term care services, compared to $13,879 spent by patients without those illnesses, the association said in a 2012 report.

For government health care programs already facing economic strain, these estimates are daunting, researchers and advocates say.

"If you think you're going to solve our fiscal entitlement process without addressing one of the underlying causes (Alzheimer's costs) you're not getting to the heart of the problem,'' says Robert Egge, vice president of public affairs for the Alzheimer's Association.

Alzheimer's is an incurable, degenerative brain-wasting disease that robs a person of memory, eventually erasing personality and making even routine tasks such as dressing and bathing impossible. They also spend more time hospitalized than people without these illnesses.

"The bottom line is when you have a chronic condition and you add dementia, you have higher costs,'' says Julie Bynum, a physician and associate director of the Center for Health Policy at Dartmouth in Hanover, N.H., who gathered data for the Alzheimer's Association report.

"They can't self-manage their medications or monitor their diets and watch out for things like how much salt or sugar they're eating. If they also have diabetes or hypertension, two other conditions common in the older population, they need others to take care of them," she says.

A federally-funded report published last week in the medical journal Neurology said the number of people with Alzheimer's is expected to rise from 5 million to 13.8 million by 2050.

Many costs associated with Alzheimer's care are not reimbursed. Out-of-pocket costs for a family with a loved one who has dementia were $8,216 compared to $2,500 for patients with other types of conditions, according to a report last week in the journal Alzheimer's & Dementia.

Amy Steele, 34, of Oklahoma City had to quit her job and cash in her 401(k) in 2010 to help care for her mother, who is 60 and has early Alzheimer's. She recently moved her mother, who is divorced, from Dallas to an assisted-living facility near Oklahoma City. She also has been helping younger siblings with college expenses since her mother is no longer able to do so.

"I'm not going to be able to start saving again for a while,'' Steele says. "When my mother requires a higher level of care, I'll need to help supplement that and also help with her medical expenses. It's been really hard."

The research dollars for Alzheimer's are in their "infancy,'' says Jennifer Weuve, an assistant professor of medicine at Rush Institute for Healthy Living in Chicago.

The government last year set a goal of developing preventive treatment for Alzheimer's by 2025 and increased research funding through the National Institutes of Health to $606 million last year, exceeding $500 million for the first time. But it still lags behind funding for other diseases: $6 billion is spent on cancer research, $3 billion on research for HIV/AIDS.

"From polio to cancer and from heart disease to HIV/AIDS, we see that a commitment to research investment and targeted innovation on high-cost diseases is a proven deficit reduction strategy,'' says George Vradenburg, chairman of USAgainstAlzheimers, an advocacy group.

President Obama in his State of the Union Address on Tuesday highlighted the importance of Alzheimer's research, and asked Congress not to cut funding. "Our scientists are mapping the human brain to unlock the answers to Alzheimer's," he said.

Several trials are getting underway that would use drugs to prevent the disease from occurring in people who are genetically predisposed to early-onset Alzheimer's. One high-profile name with the condition is University of Tennessee Hall of Fame basketball coach Pat Summitt, who stepped down from her job after disclosing her diagnosis in 2011.

http://www.usatoday.com/story/news/nation/2013/02/14/alzheimers-cost-medicare-health/1917513/


"Learn About Senior In Home Health Care in Traverse City and Northern Michigan

Senior Helpers Provides Many services in the Traverse City and Northern Michigan area. We provide a full array of Home Care services for seniors and the elderly living in this beautiful area. Our Home Care Services are provided by bonded and insured employees and all employees pass a National Background check.

If you need Home Care services in Alpena, Bellaire, Boyne City, Cadillac, Charlevoix, Cheboygan, Empire, Frankfort, Gaylord, Grayling, Harbor Springs, Houghton Lake, Indian River, Northern Michigan, Petoskey, Roscommon, Suttons Bay, Tawas City, Traverse City, West Branch and the surrounding areas we are an excellent choice with impeccable references. Home Health Care for your elderly loved ones is never an easy choice but we can promise we will do our best to make it as painless as possible. From our family to yours we sincerely thank you for considering Senior Helpers of Traverse City and Northern Michigan Home Health Care Company. "

The Reluctant Caregiver

By PAULA SPAN
February 20, 2013, 6:00am

Now and then, I refer to the people that caregivers tend to as "loved ones." And whenever I do, a woman in Southern California tells me, I set her teeth on edge.

She visits her mother-in-law, runs errands, helps with the paperwork — all tasks she has shouldered with a grim sense of duty.  She doesn't have much affection for this increasingly frail 90something or enjoy her company; her efforts bring no emotional reward. Her husband, an only child, feels nearly as detached. His mother wasn't abusive, a completely different scenario, but they were never very close.

Ms. A., as I'll call her because her mother-in-law reads The Times on her computer, feels miserable about this. "She says she appreciates us, she's counting on us. She thanks us," Ms. A. said of her non-loved one. "It makes me feel worse, because I feel guilty."

She has performed many services for her mother-in-law, who lives in a retirement community, "but I really didn't want to. I know how grudging it was."

Call her the Reluctant Caregiver. She and her husband didn't invite his parents to follow them to the small city where they settled to take jobs. The elders did anyway, and as long as they stayed healthy and active, both couples maintained their own lives. Now that her mother-in-law is widowed and needy, Ms. A feels trapped.

Ashamed, too. She knows lots of adult children work much harder at caregiving yet see it as a privilege. For her, it is mere drudgery. "I don't feel there's anybody I can say that to," she told me — except a friend in Phoenix and, anonymously, to us.

The friend, therapist Randy Weiss, has served as both a reluctant caregiver to her mother, who died very recently at 86, and a willing caregiver to her childless aunt, living in an assisted living dementia unit at 82. Spending time with each of them made Ms. Weiss conscious of the distinction.

Her visits involved many of the same activities, "but it feels very different," she said. "I feel the appreciation from my aunt, even if she's much less able to verbalize it." A cherished confidante since adolescence, her aunt breaks into smiles when Ms. Weiss arrives and exclaims over every small gift, even a doughnut. She worked in the music industry for decades and, despite her memory loss, happily sings along with the jazz CDs Ms. Weiss brings.

Because she had no such connection with her mother, whom Ms. Weiss described as distant and critical, "it's harder to do what I have to do," she said. (We spoke before her mother's death.) "One is an obligation I fulfill out of duty. One is done with love."

Unlike her friend Ms. A, "I don't feel guilty that I don't feel warmly towards my mother," Ms. Weiss said. "I've made my peace."

Let's acknowledge that at times almost every caregiver knows exhaustion, anger and resentment.  But to me, reluctant caregivers probably deserve more credit than most. They are not getting any of the good stuff back, no warmth or laughter, little tenderness, sometimes not even gratitude.

Yet they are doing this tough work anyway, usually because no one else can or will. Maybe an early death or a divorce means that the person who would ordinarily have provided care can't. Or maybe the reluctant caregiver is simply the one who can't walk away.

"It's important to acknowledge that every relationship doesn't come from 'The Cosby Show,'" said Barbara Moscowitz when I called to ask her about reluctance. Ms. Moscowitz, a senior geriatric social worker at Massachusetts General Hospital, has heard many such tales from caregivers in her clinical practice and support groups.

"We need to allow people to be reluctant," she said. "It means they're dutiful; they're responsible. Those are admirable qualities."

Yet, she recognizes, "they feel oppressed by the platitudes. 'Your mother is so lucky to have you!'" Such praise just makes people like Ms. A. squirm.

Ms. Moscowitz also worries about reluctant caregivers, and urges them to find support groups where they can say the supposedly unsay-able, and to sign up early for community services — hotlines, senior centers, day programs, meals on wheels — that can help lighten the load.

"Caregiving only goes one way – it gets harder, more complex," she said. "Support groups and community resources are like having a first aid kit. It's going to feel like even more of a burden, and you need to be armed."

I wonder, too, if reluctant caregivers have a romanticized view of what the task is like for everyone else. Elder care can be a wonderful experience, satisfying and meaningful, but guilt and resentment are also standard parts of the job description, at least occasionally.

For a reluctant caregiver, "the satisfaction is, you haven't turned your back," Ms. Moscowitz said. "You can take pride in that."

http://newoldage.blogs.nytimes.com/2013/02/20/the-reluctant-caregiver/

"Learn About Senior In Home Health Care in Traverse City and Northern Michigan

Senior Helpers Provides Many services in the Traverse City and Northern Michigan area. We provide a full array of Home Care services for seniors and the elderly living in this beautiful area. Our Home Care Services are provided by bonded and insured employees and all employees pass a National Background check.

If you need Home Care services in Alpena, Bellaire, Boyne City, Cadillac, Charlevoix, Cheboygan, Empire, Frankfort, Gaylord, Grayling, Harbor Springs, Houghton Lake, Indian River, Northern Michigan, Petoskey, Roscommon, Suttons Bay, Tawas City, Traverse City, West Branch and the surrounding areas we are an excellent choice with impeccable references. Home Health Care for your elderly loved ones is never an easy choice but we can promise we will do our best to make it as painless as possible. From our family to yours we sincerely thank you for considering Senior Helpers of Traverse City and Northern Michigan Home Health Care Company. "