The 'sandwich generation' still supports its children while caring for its parents, which is playing a toll on its health

Cornell Cooperative Extension graphic

Kentucky Health News

America has Generation X, Generation Z and more, but it also has "the sandwich generation," adults between 40 and 59 who care for their aging parents and help support their own children. Most family caregiving falls to this generation, and most of the caregivers are women.

Historically, when people reached this age group, they became empty nesters. But the Pew Research Center "found 54% of parents in their 40s are caring for seniors while also financially supporting their adult children," says a study report from the Seniorly Resource Center.

"The sandwich generation is bound by a unique set of social and demographic forces that include a record number of aging seniors and financial challenges that have stunted the economic stability of their adult children," the report says. "As the prevalence of Alzheimer’s disease and other conditions linked to old age continue to rise, and the financial stability of young adults remains stunted, America’s ‘sandwich generation’ is seeing substantial declines in their own physical, mental, and financial health."

In Kentucky, 45.8% of caregivers have two chronic health conditions, 15.5% are mentally distressed, Alzheimer’s disease is expected to increase 14.7% by 2025 and 3% of homes are multigenerational, according to a news release about the study.

In a report titled "Valuing the Invaluable: 2023 Update," the American Association of Retired Persons found that there are 610,000 caregivers in Kentucky who provide 570 million care hours, at an estimated economic value of $8.6 million. 

The Alzheimer's Association says in Kentucky, 75,000 people 65 and older are living with the disease and 157,000 family caregivers bear the burden of caring for them, while providing 302 million hours of unpaid care.

The report offers tips to prevent caregiver burnout, such as creating a financial strategy, prioritizing self-care, delegating tasks, utilizing available resources, staying organized and communicating openly with family about challenges. 

The release added three suggestions:  

Respite care provides short-term stays for seniors to give primary caretakers a break. It is also a great way to try out senior living and some organizations provide respite grants to help offset the cost.

Assistive technology: Caregivers should use new technology. Grandpad is a user-friendly tablet with 24-hour live support; Lively is a waterproof watch that replaces emergency pendants like Life Alert; and caregiving apps such as Medisafe are designed to keep track of tasks.

Ask for help and be specific: Most people want to help their friends and family but don’t know how. If you are overwhelmed, it is critical to ask for help. Determine what needs to be done and assign people specific tasks.

The report also offered information on some support groups, including: 

• National Alliance for Caregiving: The NAC is a non-profit organization dedicated to supporting caregivers. You can visit their website at www.caregiving.org.
• Caregiver Action Network: CAN is an organization that provides education, support, and resources for family caregivers. They offer a helpline, support groups, and an online community. You can contact them at 1-855-227-3640 or visit www.caregiveraction.org.
• Eldercare Locator: This is a public service of the U.S. Administration on Aging. They can help connect you with local resources and support services for caregivers. You can contact them at 1-800-677-1116 or visit their website at www.eldercare.acl.gov.

Using data from the Alzheimer’s Association and federal agencies, Seniorly did state-by-state estimates of likelihood of increasing caregiver burnout. Kentucky was at about the national average.

Most Kentuckians with Alzheimer's are over 65 and have chronic illness, putting them at greater risk of covid-19; tips for caretakers

UKNow photo

People with Alzheimer's disease are considered at high risk for covid-19, the disease caused by the new coronavirus, not only because they have Alzheimer's, but also because most of the 272,000 Kentuckians with the disease are over 65 and most of them have at least one other chronic illness, Hillary Smith reports in a University of Kentucky news release.

The increased risk of covid-19 for people with Alzheimer's presents yet another challenge for caretakers. To help them, UK's Sanders-Brown Center on Aging offers some best practices during this outbreak.

Guidance for Caregivers:

• Wash your hands when you leave the home and when you return to the home, and frequently throughout the day. 
• Clean high-use surfaces, like doorknobs, sink handles and refrigerator doors, with a solution of four teaspoons bleach to four cups of water. 
• Manage your underlying chronic health conditions.
• Have both your and your care-recipient's prescriptions called into a pharmacy that can either deliver them or has a drive-through pickup window. 
• Monitor yourself and your person for covid-19 symptoms, which are fever, cough and sore throat, says the release. Shortness of breath is also a symptom. Call your doctor if you have any symptoms. 
• Have an alternative plan of care for your person if you would not be able to provide it. 
• Make sure anyone coming into your home to help with care is adhering to all hand-washing rules and monitoring themselves for covid-19 symptoms.
• Practice social distancing and make sure you and your person are not in close contact with groups of people. 

Social distancing suggestions:

• Work from home if possible, especially if your job allows telecommuting.
• Attend your worship service online or call a member of your religious organization to worship together over the phone.  
• If you must take your person shopping, seek times to shop that are set aside only for seniors. Better yet, have friends, family or neighbors pick up the items you need.
• Order takeout from restaurants that can deliver or offers curbside service and allows you to pay over the phone.
• Limit family visits, including visits with grandchildren. Connect via social media or visit outside standing six feet apart. 
• Going to the park and taking walks or a drive present minimal risk.

Home Engagement: 

• Stick to a routine to help keep things feel normal.
• Keep the curtains open and lights on during the day. 
• Try new activities within the home, like listening to music, looking at or organizing photos, folding washcloths or putting socks together, talking about historical events, playing cards, gardening or crafting.

Other tips for caring for a person with Alzheimer's: 

•  Be flexible and patient. 
• Avoid correcting the person. 
• Help the person remain as independent as possible. 
• Offer opportunities to make choices, two at the most. 
• Simplify instructions. 
• Establish a familiar routine. 
• Provide encouragement and support. 
• Help get your person started in the activity if they don’t start themselves.

Behaviors: If you see an increase in disruptive behavior like agitation, aggression, anxiety or resistance to care, remember that your person can pick up on your stress and anxiety. Sanders-Brown says to first make sure that the general needs of your person are being met and if they are, then to redirect and distract. It is also suggested that you keep a log of when these behaviors occur and what is happening at that time. And if the behaviors persist, call your medical provider.

Legislature passes bills to name caregivers, help smokers quit; could still pass dense-breast notice and student-concussion bills

By Melissa Patrick
Kentucky Health News

FRANKFORT, Ky. – Kentucky lawmakers have passed bills this year to make sure someone knows how to care for you when you leave a hospital, expand the role of pharmacists, increase access to smoking cessation, and offer some hope to terminally ill patients, among other health-related measures.

The bills now await Gov. Matt Bevin's signature or veto. Legislators will reconvene March 29 and 30 to reconsider any bills he vetoes; they could also pass additional legislation, but it would be subject to a veto without the opportunity for a override. Now that both houses of the General Assembly are controlled by the governor's party, such eleventh-hour legislation may be more likely.

Health bills that have passed

The "Kentucky Family Caregivers Act," Senate Bill 129, would require hospitals to record the name of a lay caregiver when a patient is admitted, notify that person when the patient is moved or discharged, and instruct the caregiver on the medical tasks he or she will need to perform when the patient goes home. The patient can decline this request. The bill, sponsored by Sen. Paul Hornback, R-Shelbyville. passed unanimously through both chambers and awaits the Governor's signature.

AARP, which supports this legislation, estimates that there are 650,000 family caregivers in Kentucky who save the state around $7 billion a year in health-care costs. AARP said in a statement that the bill will save even more money by improving post-discharge outcomes, reducing hospital readmissions and better allowing Kentuckians to recover at home, where they want to be.

The "Right to Try" bill, SB 21, also awaits the governor's signature. Sponsored by Sen. C.B. Embry Jr., R-Morgantown, it would make it easier for terminally ill patients to use experimental treatments. Terminal patients would be able to try drugs that have successfully completed the first phase of clinical trials but have not yet been approved by the U.S. Food and Drug Administration, with appropriate documentation from their health-care provider and approval of the drug company. The bill passed unanimously through the Senate and cleared the House 87-7.

"Right to Try" legislation has passed in 33 states and has been introduced in Congress, and has the support of Vice President Pence, Bloomberg News reports.

Kentucky lawmakers passed two bills that would expand the role of pharmacists.

SB 101, sponsored by Sen. Julie Raque Adams, R-Louisville, would allow pharmacists to administer all age-appropriate immunizations to minors aged 9 to 17. Current law allows pharmacists to administer flu vaccines starting at age 9, but for all other vaccines, pharmacists can only administer to minors starting at age 14. This bill unanimously passed both chambers and awaits the governor's signature.

SB 205, sponsored by Sen. Stephen Meredith, R-Leitchfield, would allow pharmacists to dispense a 90-day-supply of a non-controlled maintenance drug, such as those for blood pressure or high cholesterol, unless the prescription provides to the contrary. The bill passed unanimously in both Chambers and awaits the governor's signature.

Only one bill aimed at decreasing the state's high smoking rate has passed this session. SB 89, sponsored by Adams, would require all Kentucky health plans, including Medicaid, to provide barrier-free access to any smoking-cessation treatments approved by the U.S. Preventive Service Task Force. Some insurance companies have barriers to treatment, such as co-payments and prior authorizations. Bevin signed the bill March 21.

Health bills unlikely to pass

SB 78, which would have made Kentucky's schools 100 percent tobacco free, passed the Senate but couldn't get enough support among Republicans who control the House to be brought up in committee.

Two other bills aimed at protecting the health of children made no headway: House Bill 252, which would require an automated external defibrillator in every school; and HB 122, which would require children up to the age of 12 to wear a bicycle helmet.

Three bills that would increase the state's access to health-care providers also did not pass this session. SB 158 would repeal the requirement for nurse practitioners to work under a collaborative agreement with a physician to prescribe narcotics and some other controlled substances, and for the first four years of prescribing other drugs. HB 19 and SB 55 would have permitted physician assistants to prescribe and dispense controlled substance. The bills may have been hamstrung by the state's epidemic of opioid abuse.

Another bill that is dead this session is Senate Bill 108, dubbed the "Palliative Care" bill. This bill passed the Senate unanimously, but Rep. Addia Wuchner, chair of the House Health and Family Services Committee, says it needs more work. The bill's aim is to use training and education to increase access to palliative care, which is aimed at providing the best quality of life possible for patients with chronic or terminal diseases.

Health bills that could pass

One health bill likely to pass in the final two days is HB 78, which would require providers of standard mammograms to inform patients if they have "dense breast tissue" when appropriate, because such tissue can hide cancers. The notice would allow patients who have dense tissue the opportunity to determine with their provider if they need further screening.

Almost 40 percent of women have dense breast tissue, and some men do. They are twice as likely to develop breast cancer, Rep. Jim Duplessis, R-Elizabethtown, the bill's sponsor, said at the bill's hearings. The Dense Breast-info website says 27 states require some level of breast density notification after a mammogram. The bill passed unanimously through the House, passed a Senate committee and is before the full Senate.

Another bill that could pass would prohibit a coach from playing a student-athlete who has been diagnosed with or is suspected of having a concussion without written clearance from a physician. House Bill 241, sponsored by Rep. John Sims, D-Flemingsburg, passed unanimously in the House, passed a Senate committee and is before the full Senate.

This story was updated March 22.

Kentucky pastor uses his experience to offer advice to caregivers

Paul Prather
(Photo from the Herald-Leader)

As a minister for more than three decades, Paul Prather has sat with more than his fair share of people who are sick or dying.

But the pastor of Bethesda Church near Mount Sterling says nothing prepared him for the experience of taking care of his wife Renee as she struggled with cancer from 2000 to 2005.

"Caregiving is the hardest thing I’ve ever done. Nothing else comes close. Unless you’ve held that job, you have no idea how you’d fare," Prather wrote in his Sunday column in the Lexington Herald-Leader.

About 40 million Americans are caregivers, most of them unpaid, Prather notes. An American Association of Retired Persons study from 2015 estimates the economic impact of caregivers' work at $470 billion annually.

Prather used his own experiences, as well as a New York Times article by Dr. Dhruv Khullar and a Herald-Leader column by Robin Hamon, to offer advice to caregivers:

"You are not the only one. ... You’re one of 40 million." Whatever you're feeling is normal. He notes insight that a counselor once gave him: Emotions are neither good nor bad; they just are. Sometimes emotions jump from rage to fear to grief to numbness and everything in between, and that's OK, he says.

Don't beat yourself up. "You must be pretty decent or you wouldn’t be sacrificing your life for someone else," Prather writes. "Quit berating yourself for your shortcomings. Be merciful to yourself. Do your best on any given day, and leave it at that."

Remember to take care of yourself. Prather encourages caregivers to arrange for a sitter once or twice a week in order to have some time away. He also encourages healthy eating and exercise.

Ask for help. He suggests asking doctors for tips and seeking out information from books and websites.

Vent your frustrations. "You might not be able to talk candidly to the person you’re taking care of. But you might have a trusted sibling, friend, minister or adult child to whom you can speak honestly and safely," Prather writes.

Keep it in perspective. It's important to remember that this tough situation won't last forever, he says.

Prather also offers advice to those who know someone who is caring for a loved one:

"Look for the cracks," he notes. "When the sick person isn't within earshot, ask the caregiver is she's struggling."

Ask specifically what help is needed, but don't impose your agenda. Prather says most caregivers don't want to impose and will likely say, "Nothing," when asked what they need. Be specific with your questions, such as, "Would it help if I brought you a meal?" He warns, however, not to push what you think is needed onto the caregiver. Don't simply announce your plans to bring over a meal without asking.

Also, withhold judgment. "Never judge a caregiver for how she’s handling the situation," Prather writes. "Is she surly? Has she lost her faith? Is she praying that Mama will just go on and flipping die, like, today? Don’t delude yourself that you’d do better. God might let you find out."
Be a source of encouragement. Prather says that caregivers need to hear that they are doing a good job and that their work is noticed. Offer support and reassurance; it just might help him or her get through a rough day.

Caregivers can find additional resources through AARP here.

People with dementia benefit from singing and listening to music

Image: www.medicalnewstoday.com

People with dementia improve both cognitively and emotionally when their caregivers engage them regularly with singing and listening to music, according to a study published in the Journal of Alzheimer's Disease.

"Our findings suggest that musical leisure activities could be easily applied and widely used in dementia care and rehabilitation." Dr. Teppo Särkämö, lead author from the University of Helsinki, wrote in the journal.

The research involved 89 pairs of patients with mild to moderate dementia and their caregivers, who were randomly assigned to one of three groups. For 10 weeks, one group focused on singing, one on music listening and the third, the control, received only standard care.

Assessments taken 9 months prior to the intervention allowed the researchers to determine that the musical activities enhanced memory, abilities to focus and manage several tasks at the same time, orientation and mood in the groups that received musical coaching, compared with the standard care group.

The research found that singing most benefited patients in the early stages of dementia who were less than 80-years-old, and music listening most benefited those in the later stages. Singing and music listening helped both groups alleviate depression, but was especially beneficial to decrease depression in those with mild, Alzheimer-type dementia. The musical background of the person with dementia did not influence the study results.

According to the Alzheimer's Association, Kentucky has over 68,000 with Alzheimers disease and says that this number will climb to 86,000 by 2025.

"Given the increasing global prevalence and burden of dementia and the limited resources in public health care for persons with dementia and their family caregivers it is important to find alternative ways to maintain and stimulate cognitive, emotional and social well-being in this population," Särkämö said. "Especially stimulating and engaging activities, such as singing, seem to be very promising for maintaining memory functioning in the early stages of dementia."

Caregivers of Alzheimer's patients suffer, sometimes to death

It's common to hear about diseases like Alzheimer's drastically affecting the lives of those who have it, often causing severe struggles and hardships. What you may not hear much about is how caregivers of people with Alzheimer's can also suffer deeply and greatly.

Jim Crabtree was actually relieved to find out that his wife and mother had been shot and killed by his father who then shot and killed himself, Linda Carroll of NBC News reports. (Today show photo: Crabtree with his wife, Rita)

"Crabtree had been struggling" to care for his 62-year old wife, who had been diagnosed with Alzheimer's six years before, and his elderly parents: a father with dementia and a mother with crippling arthritis.

Crabtree said he felt stretched thin with the responsibility of caring for his family and that by killing them, his father actually got rid of the burdens they caused him all at once, Carroll reports.

"Although rare, there are other murder-suicide cases involving caregivers and their charges. It’s a sign of how stressful the job is," Linda Ercoli, director of geriatric psychology at the Semel Institute at the University of California, Los Angeles said in the story.

The Alzheimer's Association has created a test for caregivers to check their stress levels. 

Carroll describes how caregivers' emotions can range from helplessness to anger when they don't understand that certain annoying behaviors by their ill patients could be symptoms of the disease. Because of high emotions that can arise in a home with Alzheimer's patients, Ercoli explains that violence isn't uncommon. Studies have found that 5 percent of caregivers have been violent with their patients and 16 percent of patients have been violent with their caregivers.

Caregivers at first get a certain satisfaction from taking care of others, but as the disease progresses, they tend to suffer from deep depression, anxiety or other disorders, Ercoli explains. Also, Carroll adds, caregivers sometimes face the risk of becoming physically sick themselves. 

Experts say that caregivers should reach out more to each other for support. “People don’t say, ‘I survived Alzheimer’s’,” Crabtree said. “We are the survivors. I survived caregiving.”