Categories: long-term, caregiving
Not surprisingly, more than half of American adults (61%) have never talked with Mom and Dad about the potential need for long-term care.
So reveals a recent survey, “Getting Our Parents Ready for Long-Term Care,” that explores attitudes among American adults toward the prospect of long-term care for their mothers and fathers.
The survey, conducted by Harris Interactive, also discloses that of the adults who have this talk in the first place, only 40% ever bring up the options available for long-term care, such as nursing homes, assisted living facilities and health care at home.
The survey yielded other telling results as well:
- Nearly two-thirds of adults (63%) prefer their parents be cared for at home, either their own home or that of a family member, with 27% opting for an assisted-living facility and 6% a nursing home.
- Adult parents are more likely to feel prepared emotionally to care for their parents (56%) than physically (45%), spiritually (42%) and financially (27%).
- More than one third of adult children (37%) are unsure whether their parents have advance directives and 17% say they have none.
- Families in the South and the West are more inclined (36% and 33% respectively) to take elderly parents into their homes than those in the Northeast and Midwest (23% and 26% respectively).
Categories: chronic care, home health, patient goals of care, hospice, caregiving
As patients age and develop chronic medical conditions, they usually begin to modify their medical care goals. The burden of chronic illness and its associated debility causes many people to want to alter their medical treatment to meet their goals.
Unfortunately many health care professionals neglect to ask patients about their goals of care. In the haste to provide state-of-the-art complex medical care, whether in the hospital, clinic or home environment, many practitioners simply don’t think about asking patients what is important to them. Sometimes it’s assumed that the patient’s goal of care is obvious or the same as our goal. This assumption can lead to scenarios in which elderly patients receive care that is overly burdensome and undesired.
Most physicians and nurses don’t need to think long to recall patients we know who received medical care they didn’t want. In my primary care and hospice practice I encountered numerous elderly patients who had been treated in the intensive care unit with intravenous infusions, ventilators, dialysis and invasive monitoring devices, and after discussion with the patient and family it became clear that this treatment was never desired by the patient. The problem, of course, was that the physicians and clinicians involved didn’t take the time to ask the patient about his or her wishes.
As we celebrate National Home Health and Hospice Month and Amedisys’ 30th birthday, we urge the health care community to give patients and their families the best gift we can: a discussion with them about their goals of care. Whether you are a physician, nurse, social worker or other caregiver, take the time to sit down with your patients and ask them about what they want in their care plan.
You might ask questions like these:
- In terms of your medical treatment, what is most important to you at this point? For example, are you interested in getting stronger, reducing the medications you take or strengthening relationships with your family? Is symptom control most important to you or is living as long as possible most important to you?
- In what setting do you want to be treated? Do you want to go to the hospital or would you rather be treated at home if possible? If needed do you want to go to an assisted living facility or nursing home?
- What treatment burden are you willing to accept? Would you agree to dialysis if your doctor ordered it? Are you willing to have surgery or be placed on a ventilator?
We must acknowledge several realities when asking patients these questions. First, some patients have goals that are unrealistic. Patients may want to stay at home even when they are unsafe at home or have family members who are unable to care for them. Patients may want their medical problems treated without making necessary lifestyle changes. Second, as patients’ conditions change their goals may change. Finally, patients may not be able to easily answer these questions.
Even though these issues are real, it doesn’t mean we shouldn’t ask the questions. Oftentimes the most difficult discussions are the most important ones to have in health care (learn a helpful technique for difficult medical conversations here). Excellent clinicians will repeatedly discuss these issues with patients so they can continue to clarify and reach realistic goals over time. Only then can patients receive the type of medical care they want in the location of their choice and in a way that will help them reach their goals of care.
For detailed advanced planning that patients and their families can work on together, you might suggest Five Wishes. The Five Wishes workbook is a clear, simple way to talk about plans for care at the end of life, and is legally valid in 42 states. Download a copy of Five Wishes »
About the Author
Kevin Henning, MD, FAAFP, FAAHPM, is chief medical director of Amedisys Home Care and Hospice. He is a nationally recognized leader in hospice and palliative medicine.
Categories: falls prevention, independence at home, caregiving
For seniors, falls can have serious health and lifestyle consequences. According to the Center for Disease Control (CDC):
- One in three adults age 65 and older falls each year; this increases to one in two for those 80 and over
- The cost of fall-related injuries is projected to reach nearly $55 billion by 2020—CDC’s National Center for Injury and Prevention Control
- The majority of falls take place in the home
“Falls Prevention Week” begins on September 22. To help seniors and their caregivers reduce the risk of falls, we’ve put together these tips on preventing fall injuries. Taking these simple precautions in the home all year round can help you or your loved one live a healthier, more independent life.
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Categories: chronic care, independence at home, primary care, caregiving
One of the most important relationship decisions you’ll ever make is selecting your primary care physician (PCP). Ideally, you’ll be involved with your PCP for a long time, so it’s important to find one who you trust.
PCPs are your home base for health care. You’ll see them for most of your non-emergency needs including preventive care, routine check-ups, and most illnesses. If you need a specialist for a condition or illness, PCPs will refer you to someone appropriate.
As important as they are, choosing a PCP takes a little bit of research. The first step is asking around. Ask your friends, neighbors and relatives who they see and if they are happy with their provider. You can also check with your insurance provider for directories that can help you make the right choice.
Once you’ve narrowed it down, schedule a preliminary meeting with your top choices to get a feel for care style. The Mayo Clinic recommends you choose a provider who:
- Makes you feel comfortable discussing health topics
- Answers your questions
- Communicates well, speaking in terms you can understand
- Doesn’t make you feel rushed
- Suggests ways to improve your health
- Recommends screenings and exams appropriate for your age and sex
- Treats common illnesses and injuries
- Involves you as a partner in your care—asks what you think, listens to your concerns and expects you to follow through with action when required
- Explains the options when you need treatment
- Offers referrals to highly qualified specialists when necessary
- Has a convenient location from your work or home
- Offers convenient hours and appointments without long waits
The information on this page is provided for informational purposes only; Amedisys does not endorse any particular provider. Please carefully evaluate whether any provider or supplier is able to meet your needs.
Categories: chronic care, home health, caregiving, dementia, hospice, respite, alzheimer's
Did you know that over 65.7 million Americans provide care for a family member, friend or neighbor? That’s nearly three in ten people age 18 or older1. Family caregivers nevertheless remain under-recognized and under-resourced.
Most American caregivers are female and on average 48 years old. They typically take care of a relative, most often a parent, for an average period of 4.6 years.1 The estimated economic value of their unpaid contribution was on average $450 billion in 2009.2
In addition to helping the care recipient with everyday activities, surveys reveal that many family caregivers also provide financial assistance. A study the National Alliance for Caregiving published on caregiving out-of-pocket costs indicates that caregivers spend on average $5,531 each year on caregiving responsibilities. Since the annual median household income is $43,026, you realize that this is a significant burden for many. The highest costs are related to medical, food, and household expenses. For caregivers with limited incomes, it is even harder to cope.3 Another study suggests that caregiving for an older relative is an important factor in the health, medical care expense, and productivity of employees across all age groups. The additional health cost to employers is 8 % more compared to non-caregivers.4
Besides the financial costs, the health of the family caregiver is also a subject of concern. There are studies that indicate that the health of family caregivers (most often a spouse) may be adversely affected, especially as their caregiving continues for an extended period of time and becomes more intense. A study we released in November on caregivers of people with Alzheimer’s disease (AD) shows a significant decrease in family caregiver health over time as their care recipient’s dementia increases. This study also specifically examined the use of formal health services in a large sample of AD caregivers. The strain of caring for someone with AD can cause family caregivers to use health care services (ER visits, hospital visits and doctor visits) at higher rates than non-caregivers of the same age, at an average annual cost increase of $4,766 per caregiver in personal healthcare expenses.5
The expenses of the impact to personal health of the caregiver, combined with the expenses of caregiving responsibilities, shows the significant economic impact of caregiving on personal costs in this country – especially for older caregivers on fixed incomes.
Health professionals can play an important role in identifying caregivers at risk of having their own health decline, by using assessments that may help mediate costs. These assessments look at the caregiver’s health, ability and willingness to do what tasks may be required, as well as the caregiver’s need for support. For example, when an initial diagnosis of dementia is confirmed, it is recommended to conduct a caregiver assessment at the same time as an initial diagnosis of dementia. That way the family caregiver is integrated into the caregiving team, right from the beginning. As the care recipient’s health declines or dementia increases, the family caregiver assessments should be repeated to ensure that the caregiver is getting the support he or she needs. In addition, such assessments can serve to identify potential stress or even physical strain. The “Caregiver Self-Assessment” is such a tool, which can be downloaded from the American Medical Association or from the National Alliance for Caregiving. A caregiver assessment can also be integrated into the new annual Medicare Wellness Visit.
The efforts that family caregivers make are tremendous and the impact on different aspects of their lives is significant. That’s why we emphasize the importance of supporting the family caregiver, by integrating them from the beginning in the professional caregiving team as a part of the patient centered care – a relatively new, but vitally important, concept in health care. Employers can serve the best interest of their employees by anticipating and responding to the challenges of eldercare for their employees by offering eldercare benefits and wellness programs.4 For the family caregiver themselves, they need information, education and training. Information about the medical condition of the care recipient; coping skills and other relationship issues; better communication; community services; and long-term care planning. Education and training can be given through video, audio, workshops, and one-on one sessions.6
Last but not least, family caregivers want and need respite care so that they can be relieved from the extraordinary and intense demands of ongoing care, thereby strengthening the family’s ability to provide care. It doesn’t have to mean going on a vacation. Taking a break before extreme stress and crisis occurs, can also be simply going to a movie or concert or listening to your favorite music, while someone else cares for your loved one.7
About the National Alliance for Caregiving
Established in 1996, The National Alliance for Caregiving is a non-profit coalition of national organizations focusing on issues of family caregiving. Recognizing that family caregivers provide important societal and financial contributions toward maintaining the well-being of those they care for, the Alliance’s mission is to be the objective national resource on family caregiving with the goal of improving the quality of life for families and care recipients.
If you are a part of a caregiving coalition and would like to join NAC’s efforts or share information, please contact email@example.com or if you are a professional with an interest in family caregiving issues, please join the Caregiving Coalition Listserve to receive the Caregiving Exchange Newsletter and information on caregiving events, research, public policy and programs.