Monday, August 27, 2012

Family Fun for the Labor Day Weekend

The long Labor Day weekend when your parents were younger was likely spent relaxing with family, grilling out in the backyard, and playing games like of horse shoes or catch.  Today, beach trips and elaborate firework shows have taken the place of more low-key traditions. Feeling nostalgic yet?

This Labor Day, why not take the opportunity to channel the 1950s and have a little fun by bringing back to the time-honored family traditions. Try grilling burgers in the backyard, hand make refreshing lemonade and tea, and enjoy vanilla ice cream on top of a delicious homemade pie. Summer is slowly fading into fall, so bring back some fond memories this Labor Day to close out the summer season.

Here are some fun Labor Day activities for the family:
  • Picnic in the park, don’t forget the bug spray!
  • Join in a community event like a concert, parade or cookout
  • Volunteer in your local community  
  • Have a family talent show! Piano, acting, dancing… Who knows what you’ll discover.
Feeling creative? Try these “ode to the 1950s” Labor Day celebration ideas:
  • Have a get together and ask party-goers dress in 1950s garb to honor the era of your parents!
  • Enjoy the music of the 1950s with a soundtrack of Elvis, Frankie Avalon and Buddy Holly.
  • Too hot outside? Have a 1950s re-runs marathon and watch your parents favorites, from Bonanza to I Love Lucy.
  • Get a do-it-yourself kite making kit and fly the kites you’ve made in the park
What are your favorite things to do over the long Labor Day weekend?

Tuesday, August 21, 2012

Daily Checkup: Alzheimer’s disease is a dire threat, but early action and treatment can slow its progress

Tests, exercise help in coping with debilitating disorder, says Mount Sinai's Dr. Sam Gandy

By
Katie Charles / NEW YORK DAILY NEWS
Wednesday, August 15, 2012, 1:17 PM

   
THE SPECIALIST: Dr. Sam Gandy

    A neurologist and director of the Center for Cognitive Health at Mount Sinai Hospital, Gandy specializes in the study and treatment of dementia, focusing on Alzheimer's disease. He has been working in the field for 25 years

    WHO'S MOST AT RISK

    As Americans live longer and longer, Alzheimer's disease has become more and more familiar.

    "Alzheimer's is the most common underlying disease that causes dementia, which literally means the loss of the ability to think," says Mount Sinai's Dr. Sam Gandy. "Half of all people over age 85 are living with Alzheimer's. It's really a disease that touches everyone."

    Of the 5.4 million Americans who have been diagnosed with Alzheimer's, 5.2 million are older than 65. "Aging is the No. 1 risk factor for Alzheimer's," says Gandy. "While early onset cases do exist, the vast majority of patients are over 65."

    Twice as many women as men have Alzheimer's, not because women are more prone to the disease, but because they have a longer life expectancy.

    Though there isn't a complete consensus, most doctors believe Alzheimer's is the result of plaque buildup in the brain. "This specific plaque, a protein called amyloid, is made everywhere in the body all throughout life," says Gandy.

    "After 60 or 70 years, some brains continue making amyloid, but can no longer process it properly, and the plaque buildup interferes with normal brain function."

    Only 3% of Alzheimer's cases are completely attributable to genetics.

    Although Alzheimer's is caused by plaque buildup in the brain, it follows a process similar to the plaque buildup in the arteries that causes heart disease.

    "The primary risk factors for Alzheimer's are the same as heart disease: high blood pressure, high cholesterol, diabetes, high blood sugar, obesity and a sedentary lifestyle," says Gandy. "Also, having suffered a head injury severe enough to lose consciousness puts you at higher risk of Alzheimer's down the road."

    SIGNS AND SYMPTOMS

    Traditionally, Alzheimer's has been diagnosed when patients present certain symptoms.

    "The three classic symptoms are loss of short-term memory, a personality change or loss of executive function," says Gandy.

    "For instance, patients might be able to tell you about their childhood but not what they had for breakfast, or a previously outgoing elder gets depressed."

    With loss of executive function, patients can look okay, but lose the ability to handle necessary duties in life, like managing finances and paying bills.

    Alzheimer's is a progressive disease.

    "Initially, the forgetfulness isn't crippling and people can remain independent," says Gandy. "But eventually, everyone will require 24-hour supervision, which means either an assisted living situation or having either a family member or outside help in place around the clock."

    One reason doctors stress having an elderly loved one assessed is to help family members plan ahead so they can avoid crises like a car accident, leaving the stove on, getting lost or financial mismanagement.

    Only very recently have doctors had a test that can confirm the diagnosis of Alzheimer's based on symptoms. "We now have two tests: We can examine the spinal fluid for changes in amyloid level, or we can use a nuclear medicine scan to image plaque buildup in the brain," says Gandy. "These tests allow us not only to confirm the diagnosis, but to see how far the disease has progressed."

    TRADITIONAL TREATMENT

    As studies increasingly show, complementary therapies can go a long way toward preventing Alzheimer's or slowing its progression. "A lot of people know that mental activity and social engagement show a lot of benefit in staving off Alzheimer's," says Gandy. "What's more of a surprise is that vigorous physical exercise is also extremely protective — right now we're just trying to figure out what kinds of exercise are most effective and what the ideal dose is."

    Gandy recommends getting at least 30 minutes of exercise three times a week. "Mental and physical activity can completely neutralize genetic factors that increase risk," says Gandy.

    There is no cure for Alzheimer's and no medication that can permanently halt its progression. "The standard medical treatment uses cholinesterase inhibitors — first tested in patients at Mount Sinai — to help the brain compensate for chemical deficiencies early in the disease," says Gandy. "While these drugs help some patients, eventually all these medicines wear off."

    The average time between diagnosis and death is 10 years.
   

Research breakthroughs

    With so many Americans affected by Alzheimer's, doctors are working to find ways to prevent and cure the disease.

    "At the Mount Sinai Alzheimer's Disease Research Center, we're doing a lot of clinical trials that are attempting to speed amyloid clearance or prevent amyloid buildup in the first place," says Gandy.

    "The lingering question is: How early do we have to start these treatments to have any effect? We know that people with genetic reductions in amyloid are protected from Alzheimer's, but they have low levels beginning from the moment of conception. Obviously we want to begin interventions later than that."

    QUESTIONS FOR YOUR DOCTOR

    For many patients and loved ones, the first question is, "What is the distinction between Alzheimer's and dementia?" There are many causes of dementia; Alzheimer's is the most common specific disease that causes it.

    Because caring for a loved one with Alzheimer's can be very demanding, relatives should ask, "What should I expect from the progression of this disease?"

    A proactive question everyone should ask is, "What can I do to prevent Alzheimer's?" "Even people with a family history can reverse their risk by getting enough physical and mental exercise," says Gandy. 'Don't feel that you're doomed.Keeping yourself in good health and maintaining physical and mental fitness can go a long way in fending off this disease."

    WHAT YOU CAN DO

    GET INFORMED.

    Stellar resources are available online, thanks to groups like the Alzheimer's Association (Alz.org) and NIH (nia.nih.gov/alzheimers).
   
    DON'T WAIT FOR A CRISIS.

    "If you're concerned about an elder, it's important to have them examined," says Gandy. "Senility isn't inevitable — there's a lot we can do to help patients preserve function, especially if they receive treatment early."
   
    GET CAREGIVER SUPPORT.

    There are many resources for caregivers, from support groups to social workers who can help with the daunting logistics.

    STAY ACTIVE.

    Both physical and mental activity are ­essential for preventing Alzheimer's and for slowing the progression of dementia once the signs of it have begun.

http://www.nydailynews.com/life-style/health/alzheimer-disease-a-dire-threat-early-action-treatment-slow-progress-article-1.1136755



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Sunday, August 12, 2012

A New Look at Living Wills

These critical documents about your preferences for end-of-life care don't always work as planned. More flexibility might be the answer.

By
LAURA JOHANNES

My father was in a coma, hooked up to a ventilator, and I had to make a tough call.
His living will expressed his desires for a few black-and-white situations: He didn't want to be kept alive if he was terminally ill, or in an irreversible vegetative state. But the situation I faced wasn't so simple. The neurologist said he would wake up from the coma, but there was a good chance he would have severe brain damage. How much of a chance? The doctors couldn't say.


Doctors and nurses say my heart-wrenching experience is typical of the complexity of real-life bedside decisions. An estimated 25% to 30% of Americans have filled out living wills, documents that spell out wishes for medical treatment. But ethicists say the typically simplistic documents aren't the solution many hoped they would be. Life-prolonging medical technology has far outstripped doctors' ability to predict outcomes. The hardest choices center on when quality of life will be so diminished that death is preferable.

As such, some health organizations are trying to improve living wills, allowing for more flexibility and nuance. Some ethicists, meanwhile, are de-emphasizing living wills altogether and focusing on appointing a trusted family member or friend as your health-care agent.

"Most of us have come to the conclusion that the way to get over the vagueness is to get someone to speak for you," says Robert M. Veatch, a professor of medical ethics at Georgetown University's Kennedy Institute of Ethics in Washington, D.C.

Living wills were created in the 1960s and gained national attention in the 1970s when a young woman, Karen Ann Quinlan, following alcohol and drug use at a party, was left in a vegetative state, raising alarms about medical technology keeping people alive in hopeless circumstances.

"We had a naive view that if you had a document, that would solve the problem," says Daniel Callahan, co-founder and president emeritus of the Hastings Center, a Garrison, N.Y., nonprofit that was an early champion of living wills. "In practice," he says, "all sorts of problems arise" that aren't spelled out in the documents.

When Paul Shalline, an active 86-year-old who regularly bested his grandchildren at ping pong, was unable to communicate after a severe stroke in March, treatment decisions fell to his daughter, Robin. Ms. Shalline, a 57-year-old teacher from Monkton, Vt., says her father had a living will but had never talked to her about his wishes. "There is so much gray area," she says. "You'd hope the living will would spell it all out, but it doesn't."

His living will called for withdrawing life support if there was no reasonable expectation of regaining a "meaningful quality of life" but didn't describe what that meant, she says. Ms. Shalline, when told by doctors that her father could be blind in one eye, unable to feed himself and might never walk again, made the decision to withdraw the ventilator based on "what I knew about his life." Mr. Shalline, who loved Wiffle ball and had recently helped build a staircase, was "proud of his 'physicalness,' " she says. He died March 18.

It is hard enough, under the best of circumstances, to know what your family member would want in a particular situation. But add to that the fact that even top doctors can't predict outcomes very well.

Lee H. Schwamm, vice chairman of the neurology department at Massachusetts General Hospital in Boston, where Mr. Shalline was treated, says that even when he thinks he can predict a patient's outcome after a stroke, he is wrong 15% to 20% of the time on major outcome measures, such as whether a patient will be able to walk again. "I've never seen a living will—and I've seen a lot—that speaks to this question of diagnostic uncertainty," says Dr. Schwamm.
Living Documents
You can get a living will from a lawyer or download it from the Internet. Many focus on permanent comas and clearly hopeless conditions. Florida's statute-suggested living will, for example, directs life-prolonging treatments to be stopped if there is "no reasonable medical probability" of recovery from a terminal condition or persistent vegetative state. Florida, like most states, allows you to write your own living will; a few states, such as New Hampshire, specify that living wills must use a state-approved form. (A bill now being considered in New Hampshire would make the state form optional.)

A number of efforts have been made to improve on the standard-style living will. A document available online from Lifecare Directives LLC, Las Vegas, for example, spells out several levels of cognitive decline from coma to mental "confusion" that require 24-hour supervision, and asks if you would want life support if your brain failed that much. The document also gives you an option to say whether you want doctors to be "positively certain," "certain to a high degree" or "reasonably certain" that you will never recover before pulling the plug.

A simpler but also innovative approach is the popular Five Wishes living will. Five Wishes is written at a sixth- to seventh-grade level, says Paul Malley, president of Aging with Dignity, a nonprofit that distributes the document. Despite its simplicity, the Five Wishes living will addresses issues many others don't—for example, asking if you want pain medication to relieve suffering even if it makes you sleepy. It also has a blank space where people can specify a state in which they wouldn't want to be kept alive.

"Some people have a phrase that pops out in their mind: 'If I'm in the same condition as Aunt Mary,' " Mr. Malley says. Originally written in 1997, the Five Wishes will has been available online in an interactive format since last year.
Open to Interpretation
The problem with living wills is that most people can't articulate what they want, says ethicist Angela Fagerlin, co-director of the University of Michigan-affiliated Center for Bioethics and Social Sciences in Medicine in Ann Arbor. And even if they can, family members often don't properly interpret those wishes.

In a 400-patient study published in 2001, Dr. Fagerlin and colleagues found that family members who were presented with nine hypothetical scenarios correctly predicted patient wishes about 70% of the time, whether or not the patient had filled out a living will.

Can you forgo such documents completely? Mr. Callahan, who championed living wills in their early days, says he doesn't have one, preferring instead to give decision-making power to his wife, to whom he has said simply, "When in doubt, don't treat."

A health-care agent—a trusted family member, for instance—could supplant the need for a living will. Under the legal doctrine of "substituted judgment," health-care agents must try to make the decision you would if you could, says Alan Meisel, the director of the Center for Bioethics and Health Law at the University of Pittsburgh. Anything—a phone conversation, a list of instructions or a formal living will—can be used as evidence of your wishes, he adds.

As for my father, we postponed the decision, and he woke up, sharp as a tack, able to make his own decisions.

Miss Johannes is a writer in Boston. She can be reached at next@wsj.com.

Corrections & Amplifications
The Five Wishes living will was originally written in 1997. An earlier version of this article incorrectly said the year was 1987.

A version of this article appeared June 11, 2012, on page R5 in the U.S. edition of The Wall Street Journal, with the headline: A New Look at Living Wills.

http://online.wsj.com/article/SB10001424052702303990604577369920659306562.html

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Sunday, August 5, 2012

Moving an Older Adult in With You: A Good Family Fit?

By Kate Rauch, Caring.com senior editor

Before an older adult moves in, consider her health and whether you have enough space

When an older relative or close friend needs daily care, moving her into your home can be a good solution. But home care is also a huge undertaking -- for you and for her. Before you commit to being a home caregiver, you need to realistically assess what's involved. Here are some essentials to consider beforehand:

Health considerations


  • Start with a medical consultation. Before you make any major decisions about home care, the person's doctor should weigh in. He can tell you what kind of care she will need and whether it's practical for her to live at home.
  • Factor in emotions. Leaving her own home and needing care from others is a significant loss of independence that can be depressing. It's possible she'd prefer to stay in her home and hire a caregiver there if she can afford it.

Physical space


  • Do you have enough room? If you're moving someone in you'll need a bedroom -- or at least a comfortable place for her to sleep or rest. If you don't have a spare room, can you move family members or furniture around to make space? Is it feasible to build an extra room or an in-law apartment? Talk with her beforehand about what the arrangements would be.
  • Consider space for equipment or supplies. Do you have room for a hospital bed (which is bulkier than a regular bed), commode, oxygen tank, or other medical equipment if needed?
  • Think about accessibility issues. Do stairs and narrow hallways make maneuvering a wheelchair or walker difficult or impossible?
  • Plan for bathing. For safety reasons, older adults who are weak or have balance problems might only be able to bathe in a bathtub. Others need a freestanding shower stall with handholds. Adaptations can often be made.
  • Is there peace and quiet? Is your home calm and quiet? If not, can she tolerate all the action?
  • Assess needs for privacy. Will the new arrangement give everyone in the family enough privacy?
  • Can you accommodate overnight caregivers? Is there sleeping space for a paid overnight caregiver if needed? This can usually be in the same room as the older adult if need be.

Dealing with finances and support when an older adult moves in

Before you invite an older adult to share your home, it's important to consider what expenses will be involved, whether you'll need to work fewer hours if you're the primary caregiver, and whether you can hire enough extra help or get unpaid help from others.

Finances


  • Will you have to cut back on your work hours or other commitments? In some cases, providing home care is only possible if you, your spouse, or another family member leaves a job, works reduced hours, or gives up other commitments. Can your family afford that?
  • Consider paid caregivers. Caring for someone in your home is sometimes only possible with the help of paid caregivers, which can be expensive. Factor this into your budget or the budget of the person you're caring for.
  • Plan for home upgrades or accommodations. Consider the costs of remodels or expansions, safety-proofing, or making your home wheelchair accessible.

Support considerations


  • Assess caregiving support needs. Daily care requires hours of labor. Many people use a combination of family members, friends, and paid caregivers to handle it. Are you comfortable building and managing a network of caregivers? Will friends or family members pitch in and help you on a regular or occasional basis? This is especially important if you can't afford hired help.
  • Consider the impact of outside caregivers in your home. How do you and the person you're caring for feel about having paid caregivers in your home? Some people are fine with this; for others it's uncomfortable.
  • Plan for breaks. All caregivers need time off, and sick days are inevitable. Any care plan should include backup for caregivers, including you.
  • Can you get private time in your house? Many people need regular downtime in their home. This can be tough when an older adult lives with you. How important is this to you? Is there backup care for her from time to time?

Emotional and scheduling issues when an older adult moves in

It's easy to underestimate how exhausting caregiving can be if you've never done it for an extended time. It's also unsettling for an older adult to have to give up her way of life and adapt to someone else's, no matter how close she is to the family whose home she shares. If you think carefully about these issues ahead of time, it'll help you decide whether sharing your home is a good idea.

Emotional considerations


  • Consider your own feelings. Caring for an older adult or relative can be draining, especially if she's very sick or experiencing dementia. Add to this the stress of changes in schedule, routine, and finances. Do you think you can handle all of this emotionally, and do you have the support you need?
  • Consider the older adult's feelings. Include her in decisions as much as possible. How does she feel about moving in with you? What will make it easier for her? Pay close attention to her opinions and ideas. Make sure she feels included and as in control as possible. Her participation will go a long way toward making home care work.
  • Think about family dynamics. Spouses, kids, and grandkids are all affected by this kind of major family move. Having a relative or other older adult live with you is usually a mix of rewards and challenges. Think honestly about what might change for your family. How will your spouse deal with it? Consider holding a family meeting or two to discuss changes, fears, and expectations.
  • Face up to the reality of intimate care. Daily care can include personal tasks such as bathing, dressing, toileting, and feeding. Some people are more comfortable with this than others. You may want to hire paid caregivers for some or all of these tasks.

Time and schedule demands


  • Does home care fit your daily routine? Consider your work and leisure activities. Do you have wiggle room in your schedule? Are you OK with cutting back on your activities if necessary, including volunteer work or what you do for fun?
  • Plan for getting the person out and about. Will you be able to manage getting her to medical appointments, to the senior center, or to visit friends and relatives? Will you need to drive her everywhere or can she use public transportation or paratransit? Are there reliable senior transportation or paratransit services your area?

The choice is yours -- and hers

It's important to remember that there's rarely one perfect solution for providing daily care. For every family it boils down to weighing and balancing many factors to settle on the best option. Most families adjust to change over time.

Moving an older adult in is a great choice for some families and simply not workable for others. If it's not for you, you can still help her find a workable solution. Other options to consider include providing care in the person's own home or assisted living.

http://www.caring.com/articles/caring-for-relative-at-home

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