Right now, 40 million Americans are doing truly selfless work by serving as unpaid family caregivers for a loved one. About 25 percent of those caregivers are millennials, who often feel forced to choose between their careers and caring for their aging parents and grandparents.
I can relate. When I was in my thirties, my brothers and I cared for our mother throughout her stage 4 breast cancer diagnosis. It’s not a role I was expecting to land, it didn’t come with much preparation, but it turned out to be one of the most rewarding things I’ve ever done — and, undeniably, one of the most difficult.
Caregiving for a loved one is a role that millions more Americans will take on in the coming decades — especially with so many baby boomers saying they want to age in place instead of entering retirement homes or care facilities. There are many upsides to being cared for by devoted and well-trained family caregivers, including a reduction in hospital readmissions and a chance for families to bond during a difficult time. But the caregivers themselves often end up paying a high cost, both physically and financially, which is rarely discussed.
ODDS ARE HIGH THATsomeone in your family will need a nursing home sooner or later. Someone turning age 65 today has almost a 70% chance of needing some type of long-term care, and 20% of people will need it for longer than five years, according to LongTermCare.gov. The average cost of nursing home care is so high that the cost of that care can financially cripple a family. But there are steps you can take – whether a nursing home is needed now, next month or next decade – to minimize the financial strain of nursing home costs.
There are many ways to cover the costs of long-term care, including savings, investments, assets, long-term care insurance, state LTC Partnership programs, the Federal LTC Insurance Program and tax advantages. Care Conversations, an initiative led by the American Health Care Association, the National Center for Assisted Living and America’s Skilled Nursing Caregivers, offer a helpful list of these private and public payment sources in greater detail.
AoA’s Alzheimer’s Disease Programs Initiative – Grants to States and Communities program announcement (HHS-2019-ACL-AOA-ADPI-0360) seeks to support and promote the development and expansion of dementia-capable home and community-based service (HCBS) systems in States and Communities.
There are two application options contained in the single funding announcement: Grants to States (Option A) and Grants to Communities (Option B).
No entity is eligible to apply for both State and Community options.
The dementia-capable systems resulting from program activities under either option are expected to provide quality, person-centered services and supports that help people living with dementia and their caregivers remain independent and safe in their communities.
The number of informal caregivers who look after older adults with cancer is on the rise. Caregivers could be relatives, partners, or even friends who provide assistance to people in order to help them function.
Most older people with cancer live at home and are dependent on informal caregivers for support with their cancer treatment, symptom management, and daily activities. Caregiving itself can also take a toll on a caregiver’s own physical and emotional well-being, which makes it important to ensure the proper supports are in place.
Until now, no large study has evaluated whether or not caring for older adults with advanced cancer is linked to caregivers’ emotional health or to their quality of life. Recently, researchers studied a group of adults aged 70 or older who had advanced cancer (as well as other challenges). This study used information from older patients with advanced cancer and their caregivers from local oncology practices enrolled in the “Improving Communication in Older Cancer Patients and Their Caregivers” study conducted through the University of Rochester National Cancer Institute Community Oncology Research Program Research Base between October 2014 and April 2017. Results from the study were published in the Journal of the American Geriatrics Society.
MULTITASKER AND FAMILY provider. Always attentive, do-it-all parent. Handyperson, cook and family vacation planner. Busy, active spouse who still finds time for fun. People tend to take healthy loved ones and all they contribute for granted – until chronic pain throws a wrench into what once was a comfortable household.
Chronic pain disrupts the balance of give and take among spouses, parents and children. Drastic shifts in a family member’s ability to function, financial burdens from reduced income and rising medical costs, and the ever-present awareness of suffering can’t help but take a toll at home. Breezy conversations of the past can become emotionally loaded minefields.
Young children may blame themselves when parents seem angry or impatient. Kids can feel neglected when their mom or dad can’t attend school activities or sporting events and they may resent the loss of attention. Kids sometimes have to take on additional chores or unaccustomed caregivingroles.
GIVEN THAT SO MANY older adults prefer to age in place for as long as possible, the assistance of home health aides has become a major industry and means of helping people stay in their homes longer. But it’s a sector of the senior housing market that’s often recognized more for its challenges than for how it can empower families to live their best lives.
As both a consumer of home health aide services and a senior care industry insider, Matt Perrin, co-founder of the independent online senior living facility review site Ro & Steve, says the challenge families face when arranging stable and qualified in-home senior care services are pressing, and very real.
“For us as consumers, it just comes down to a stability issue,” he says, explaining how arranging appropriate care for his wife’s father, who lives with them in New Hampshire, has been an ongoing process that requires flexibility and a lot of advocacy. From simple logistics of making sure the Perrin family has coverage when they need it to making sure the caregivers they’re working with are a good fit for his father-in-law’s temperament and medical conditions, the whole endeavor is an ongoing process that has involved working with several agencies and many different caregivers.
Dr. Oanh Le Meyer had recently started studying health disparities in Vietnamese Americans with Alzheimer’s and their caregivers when she first noticed symptoms in her own mother about five years ago.
First Meyer’s mom started asking the same questions over and over. Then the complex meals she would cook became simpler. By the time Meyer published her first study on support programs for those caring for Vietnamese Americans with dementia in 2015, she was one of her mom’s primary caregivers.
“There’s a grieving process to it that continues,” Meyer said. “But I think, being a scientist, I approached it more this is just an illness taking over her brain.”
We hear repeatedly that without family caregivers, our long-term services system would be stretched to the breaking point. Family caregivers make it possible for so many of our nation’s citizens to remain independent, living in the settings of their choice.
Supporting families and family caregivers in their efforts to assist their friends and loved ones is at the very core of the mission of the Administration for Community Living. That gives us a tremendous opportunity to advance how we think about supporting families that include older adults who need assistance in their later years, people with disabilities at every stage of their lives, or both. We also have the opportunity to make a real difference in the lives of real people, through programs that provide support to families and caregivers.
Every November, we stop to recognize and thank family caregivers for all they do on behalf of their loved ones. This year, I think we have even more reason to be thankful, to celebrate family caregivers, and to be optimistic for the future of family caregiver support.
‘I need this — can you grab my pills?’ ‘Can you help me with this?’ ‘Can you go in my bag and get me my medicine?’
For more than half of her 16 years, 10th grader Destiny has answered calls like this to help her grandmother and great-grandmother manage their medications.
“I’ve been helping out basically most of my life,” she said.
Despite the essential role Destiny and other youth caregivers play, little is known about how they learn to manage medications, what they know about the medicine they administer, and what kind of rewards and challenges they encounter day to day.
To find out more, Julia Belkowitz, M.D., M.P.H., a University of Miami Miller School of Medicine physician-researcher and pediatrician, and colleagues studied 28 middle school and high school students 12 to 19 years old. Their study is the first of its kind to take a comprehensive look at this population; they reported their findings online in the Journal of Adolescence.