“What’s in the Therapeutic
Pipeline for Parkinson’s?”
A free, livestream event followed by a
To learn more click here:https://www.youtube.com/watch?v=ROTZxvil66A
Adult children across the country belong to the sandwich generation. Like salami and the cheese, they feel squished
between the responsibilities of their careers, elder care and raising their kids. Often, family caregivers sacrifice their
own well-being and financial security to help their parents grow old gracefully.
Ninety percent of Aging Life Care™ experts use or recommend the use of “fiblets” by adult
children of aging parents with dementia as a way to ease anxiety and protect self-esteem,
finds a survey by the Aging Life Care Association™. When an aging parent with Alzheimer’s
is refusing needed care and when they can no longer drive safely alone are the two most
frequently cited situations when “fiblets” can be therapeutic according to the Aging Life Care
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A recent survey by the Aging Life Care Association reveals that more long-distance caregivers are turning to professionals to help manage the care of aging adults. Holiday visits were cited as a common time that caregivers discover troubling changes in health, behavior, or physical appearance of their family member.
Most long-distance caregivers hire us when the situation has escalated or becomes a problem that they can’t solve alone
TUCSON, AZ (PRWEB) DECEMBER 04, 2016
Long-distance caregivers — those who live a significant distance from a person who needs care — are turning to professional help for managing the care of their aging family members. A recent survey by the Aging Life Care Association™, shows that over 30% of an Aging Life Care Professional’s case load involves families attempting to coordinate care for an aging parent or other elder from a distance.
The 382 participants revealed the top reasons why long-distance caregivers seek help from Aging Life Care Professionals™, also known as geriatric care managers. The data show Aging Life Care Professionals are contacted most often by long-distance caregivers when:
- There is a crisis or emergency (76%)
- Making a visit sees significant changes in health, behavior, or home maintenance (57%)
- There is a need to explore placement options or relocation (41%)
From mediating complicated family relationships to serving as the local emergency contact, the role an Aging Life Care Professional plays varies client by client. The top five services long-distance caregivers are looking for when they engage an Aging Life Care Professionals are:
- Consultation about how to best help their parents and/or family (87%)
- Assessment and care planning (83%)
- Ongoing oversight/monitoring of care (75%)
- Routine communication and status updates to out-of-town family (68%)
- Arranging for home care services (68%)
“Most long-distance caregivers hire us when the situation has escalated or becomes a problem that they can’t solve alone,” says Dianne McGraw, LCSW, CMC and president of the Aging Life Care Association. “Our expertise and our knowledge of local resources allow us to become the team captain and coordinate services. We become the eyes and ears for the long-distance caregiver.”
Survey respondents offered examples of long-distance caregiving cases, many echoing the sentiment that working with Aging Life Care Professionals reduces stress and helps improve or restore family relationships.
- I currently have a client with memory loss, whose only daughter lives in England. One weekend, while the client was out taking a walk, she took a fall resulting in a fractured skull. She was found by a neighbor and an ambulance was called. I was able to be with her at the hospital, help her stay calm, communicate with her daughter, the hospital, and her physician. As the Aging Life Care Manager™, one is uniquely positioned to coordinate communication in a way that helps everyone involved feel calm and confident, and to help arrange the best outcome for the client.
- I was hired by daughter in Connecticut for her mother in Washington. Daughter was trying to care manage from a distance, without knowing how, and relationship was becoming strained. Daughter was frequently frustrated, Mom felt daughter was trying to be the boss of her. After completing assessment, care plan, and initial visits, client said, “Thank you for giving back to us our mother/daughter relationship. I feel like I got my daughter back.”
- The most difficult part of long distance care giving for families is denial. Many families don’t make the trip to see their loved one, they speak on the phone and the client is able to shield the family from what is happening. Having an Aging Life Care Manager to oversee and update everyone with a non-biased opinion helps all parties involved.
For more real-life stories from Aging Life Care Mangers, please contact Callie Daters at cdaters(at)aginglifecare(dot)org.
ABOUT the Aging Life Care Association (ALCA): ALCA (formerly known as the National Association of Professional Geriatric Care Managers) was formed in 1985 to advance dignified care for older adults and their families in the United States. Aging Life Care Professionals™ have extensive training and experience working with older adults, people with disabilities, and families who need assistance with caregiving issues. They assist families in the search for a suitable nursing home placement or extended care if the need occurs. The practice of Aging Life Care™ and the role of care providers have captured a national spotlight, as generations of Baby Boomers age in the United States and abroad. For more information or to access a nationwide directory of Aging Life Care Professionals, please visit aginglifecare.org.
When you’re exploring a foreign country, a guide who knows the terrain well can help immensely. That’s just as true when entering the foreign territory of caregiving. Here, a geriatric-care manager can provide invaluable assistance for individuals and families facing challenging care decisions.
Geriatric-care managers come from diverse backgrounds, from nursing and social work to gerontology. These professionals can help navigate the tangles of family dynamics, round up medical care and necessary services, keep medical personnel on the same page, and cut through the baffling red tape of private businesses and government bureaucracies.
Some of the tasks geriatric-care managers routinely undertake include:
- evaluating needs
- connecting people to helpful services, senior housing, and long-term care facilities
- bringing families together to discuss options supportively
- hiring and monitoring home care personnel
- communicating with specialists, hospital and home care staff, and family members to coordinate care
- alerting families to financial, medical, or legal problems and suggesting ways to circumvent difficulties
- helping with a move to assisted living, a nursing home, an Alzheimer’s care unit, or other facilities.
Some geriatric-care specialists focus on assisting older people. Others have expertise coordinating care and services for people of all ages with disabilities or debilitating illnesses.
Although working with a geriatric-care manager may be costly, such expertise can often save money and regrets, especially if you are scrambling to arrange care from afar. The cost of a geriatric-care manager is usually borne by the client or family, rarely by long-term care insurance. If you plan to work with a geriatric-care manager, be sure to get a written agreement outlining the scope of services offered and costs. This document can also help you decide which tasks, if any, might be undertaken by family and friends to save money.
To learn more about geriatric-care managers, or to locate a geriatric-care manager, contact the National Association of Professional Geriatric Care Managers at 520-881-8008 or www.caremanager.org.
For more on developing plans and effective strategies for the hard work of caregiving, buyCaregiver’s Handbook, a Special Health Report from Harvard Medical School.
Blog posting provided by Society of Certified Senior Advisors
Under a new law, patients can discuss their medical options and goals in order to make an informed decision on the type of care they want.
For the first time, Medicare will pay this year for a conversation with your healthcare provider about your end-of-life care. When Congress attempted this coverage six years ago, it was met with charges that such conversations would result in “death panels.” Yet polls show that a majority of Americans want to talk to their doctors about their options and preferences as they approach the end of their lives. A recent Kaiser Family Foundation survey found that about 9 in 10 adults say doctors should discuss end-of-life care issues with their patients, yet only 17 percent of adults say they have had such a discussion.
Even though most adults (90 percent) say they would prefer to receive end-of-life care in their home if they were terminally ill, only about one-third of Medicare beneficiaries (age 65 and older) died at home (Kaiser Family Foundation). Conversations with healthcare provider about such wishes could guide you and your doctor to the kind of treatment that would ensure you die where you want.
Under the new rule, Medicare pays $86 for the first 30 minutes of “advance care planning” in a doctor’s office and $80 for the service in a hospital. In both settings, Medicare will pay up to $75 for 30 additional minutes of consultation. If the discussion takes place during your annual wellness visit, it is considered a preventive service and the patient’s coinsurance and deductible are waived. These voluntary discussions can take place at any time, not just when a patient is facing a serious illness or death.
Ideally, end-of-life conversations would cover a range of concerns, including understanding the patient’s prognosis and goals. Do you want everything done that would keep you alive—chemotherapy, CPR, tube feeding—even if it doesn’t meet your wishes for your end of life? Be specific about treatments and interventions you do and do not want.
Benefits of the Conversation
Far from forcing people to accept treatments that would shorten their lives, communication with your healthcare provider can help ease your fears, minimize pain and suffering and enable you and your family to experience a peaceful passing. Those who are dying often have many fears—of pain, indignity, abandonment and the unknown. By talking to your healthcare provider, your end-of-life care can become an experience of choice rather than passivity, of empowerment rather than powerlessness, experts say.
An end-of-life conversation allows your loved ones to know what to expect and know that you are receiving the care you desire. The new policy will help seniors “make important decisions that give them control over the type of care they receive and when they receive it,” the Centers for Medicare and Medicaid Services stated.
Studies have shown that advance-care planning improves the patient’s quality of care because it’s targeted to what the person wants. Directed treatments can reduce the costs of medical interventions that the patient either doesn’t want or doesn’t need.
One Woman’s Story
For Amy Berman, a nurse, being able to have such conversations with her doctors “allowed me to survive, and live well, in the five years since my diagnosis” of a fatal form of breast cancer.
“Faced with an incurable disease and a prognosis where only 11 to 20 percent survive to five years and there is no statistic for 10-year survival because it so rarely happens, I came to understand that my priority was to seek a ‘Niagara Falls trajectory’—to feel as well as possible for as long as possible, until I quickly go over the precipice. Quality of life is more important to me than quantity of days, if they are miserable days.”
A nationally recognized expert in care of the aged and a senior program officer at the John A. Hartford Foundation, Berman wrote about her experiences in her blog. She chose a course of treatment that “slow[s] the cancer’s spread with the least amount of burdensome side effects,” while rejecting chemotherapy drugs, a mastectomy and radiation therapy recommended by one doctor who never asked what mattered to her in her life. Such radical treatment would have “compromised the quality of my remaining life without any real benefit.”
Even though her cancer has spread a bit farther, “because my treatment focuses on helping me live well and feel well, I haven’t been in the hospital. I feel great.” Berman estimates she has “saved about a million dollars by avoiding care I do not want,” while being able to work full time, travel and spend time with family and friends.
Suggestions for Your Talk
Lining up Your Documents
Going hand in hand with the end-of-life conversation with your doctor is the preparation of your advanced care directives, which can include a living will, Five Wishes and/or POLST (physician order for life-sustaining treatment).
A living will is a written, legal document that spells out medical treatments you would and would not want to be used to keep you alive, as well as other decisions such as pain management or organ donation. Five Wishes goes beyond medical care to share your personal, emotional and spiritual concerns. The form includes questions about how comfortable you want to be, how you want people around you to treat you and what you want your loved ones to know when you’re facing the end of your life. These documents also indicate who can make decisions on your behalf if you’re unable to do so.
Unlike a living will or Five Wishes, a POLST form is a medical order signed by a doctor and based on your end-of-life care wishes. It is used by emergency medical professionals, hospital staff, a healthcare facility and others to follow your instructions. Oregon’s POLST lets people register their wishes for end-of-life care with a state registry. Several states, including New York, Washington and West Virginia, have also adopted a version of the POLST.
Although Medicare has not provided any guidelines for a conversation about end-of-life care, others have. Dr. Atul Gawande is the leading thinker and writer on this subject. In his influential bookBeing Mortal, he talks about asking his patients what makes their life worth living. He goes far beyond what most doctors consider a conversation about end-of-life care, which usually involves resuscitation, mechanical ventilators and comfort care.
One patient said he would enjoy life if he could eat chocolate ice cream and watch football. For some people being able to be at home and spend time with grandchildren is important. Others don’t want to continue their lives if they can’t be active. Different answers result in different treatment plans; for example, less or more aggressive cancer treatment.
Gawande poses five questions for patients facing life-threatening illnesses:
- What is your understanding of where you are and of your illness?
- What are your fears or worries for the future?
- What are your goals and priorities?
- What outcomes are unacceptable to you? What are you willing to sacrifice and not?
- What would a good day look like?
“Asking these allows everybody to understand what the goal really is,” he says. ”What are you really fighting for?”
The Conversation Project, an organization dedicated to helping people talk about their wishes for end-of-life care, poses slightly different questions for patients to ask their doctors:
- Can you tell me what I can expect from this illness? What is my life likely to look like six months from now, one year from now and five years from now?
- What can I expect about my ability to function independently?
- What are some possible big changes in my health that my family and I should be prepared for?
- What can I expect to improve (or not improve) if I choose this course of treatment, or another course of treatment?
- What can I expect if I decide to do nothing?
When meeting with your doctor, you can also discuss palliative care, which is concerned with providing seriously ill patients with relief from the symptoms and stress of a serious illness, rather than trying to cure the patient. It can be relief from pain, fatigue, constipation or depression, for example. The purpose is to improve your quality of life.
Once you’ve had the conversation with your doctor, follow up with your family and close friends and let them know your preferences, so they can honor your wishes.
The Option Group was part of the 2015 Walk to End Alzheimer’s in Baltimore this year. The event involved 1,738 Walkers at Rash Field to raise $322,957! Consider joining a team in 2016 to help with the cause!