Congresswoman Claudia Tenney (NY-24), alongside Senator Richard Blumenthal (D-CT), Congressman John Larson (CT-01), and Senator John Cornyn (R-TX), introduced the bipartisan, bicameral Essential Caregivers Act today.
This bill would protect the residents in long-term care facilities, giving all residents nationwide the right to have in person access to an essential caregiver when visitations are restricted due to a declared emergency. The bipartisan bill seeks to prevent a repeat of the isolation and lack of care that long-term care residents were unjustly subjected to during the COVID-19 pandemic. It also requires CMS to set clear and fair guidelines for essential caregivers to protect the safety of facility staff and residents.
Additional cosponsors of this legislation include Representatives Brian Fitzpatrick (PA-01), Adrian Smith(NE-03), John Rutherford (FL-05), Derrick Van Orden (WI-03), Susan Wild, (PA-07), Mike Carey (OH-15), Mike Lawler (NY-17), Emanuel Cleaver (MO-05), Susie Lee (NV-03), Juan Ciscomani (AZ-06), Don Bacon (NE-02), and Donald Davis (NC-01).
“Under federal law, nursing homes and long-term care facilities have the obligation to allow their residents access to caregivers,” said Congresswoman Tenney. “Sadly, during the COVID-19 pandemic, this right was denied to many residents and families, causing many seniors and patients to suffer and die alone. This injustice should never occur again, which is why Congressman John Larson, Senator Richard Blumenthal, and Senator John Cornyn and I introduced the Essential Caregivers Act. We must fix this loophole to protect the rights of senior citizens, those with disabilities, and their families during the next public health crisis.”
“The COVID-19 pandemic brought to light the vital role family members play in the care and wellbeing of their loved ones in long-term care facilities,” said Senator Blumenthal. “The Essential Caregivers Act ensures that in the event of a future emergency, residents in these facilities will still be able to receive the support, care, and companionship that their family members provide. This commonsense legislation allows at least one designated essential caregiver to have safe, in-person access to their loved ones at all times—ultimately protecting the overall physical, emotional, and mental health of long-term care residents.”
“The COVID-19 pandemic taught us that isolation hurts all of us, yet countless families were prevented from being with their loved ones during their time of need,” said Congressman Larson. “I am glad to join Rep. Tenney and Senators Blumenthal and Cornyn in this bipartisan and bicameral effort to expand visiting access for essential caregivers during future public health emergencies to ensure residents can get the support they need from their loved ones and never again face the isolation that was a reality for far too many patients.”
“The COVID-19 pandemic showed just how invaluable caregivers are to the physical and emotional wellbeing of long-term care facility residents and their families,” said Senator Cornyn. “This bill would ensure residents have consistent access to their loved ones or other designated caregivers, even during public health emergencies when regular visitation may be limited.”
In New York, there are more than half a million people providing unpaid care to a loved one with dementia. National Family Caregivers Month is the perfect time to get educated about dementia caregiving and ways to help.
Caring for someone with dementia is demanding: these caregivers on average provide more care for a longer period of time than other caregivers. A report released by the Alzheimer’s Association earlier this year found that New York’s dementia caregivers provided 884 million hours of care, valued at more than $19 billion dollars. With a looming shortage in the healthcare workforce and more people expected to develop dementia in the coming years, the burdens facing dementia caregivers are growing.
Dementia caregivers often take on these responsibilities while balancing careers and children. It’s not surprising that they find their own physical and mental health worsening due to stress.
Dementia caregivers report higher rates of chronic conditions, including stroke, heart disease, diabetes, and cancer than other people. In New York, 59% of caregivers reported at least one chronic health condition.
Dementia caregivers report higher rates of depression than caregivers for people with other medical conditions. In New York, 24.7% of dementia caregivers reported having depression.
Amara May, director of program outreach at the Western New York Chapter of the Alzheimer’s Association, says, “Caring for someone with dementia is uniquely challenging. The caregiving tasks are intense and you’re doing them while watching your loved one gradually lose memory and function.” She continues, “Our goal at the Alzheimer’s Association is to help reduce sources of caregiver stress and help them find self-care strategies that work.”
Debbie Gangemi of Hamburg assists her father, Richard, in caring for her mother, Donna Brese, who has Alzheimer’s. “It can get frustrating and stressful because of the unexpected,” she says. “Mom has a number of good days, but you just can’t anticipate when a bad day will happen.”
There are a range of self-care strategies caregivers can try to reduce stress. No single approach will work for everyone so it’s important to find what works for you. Options include:
Talk to someone you trust. This could be a friend, family member, clergy or counselor. The Alzheimer’s Association provides a 24/7 Helpline with dementia experts available anytime.
Get outside. Even just a few minutes outdoors can improve your mood, especially on sunny days.
Exercise. Movement is a proven approach to improve mental and physical health. Try a walk around the neighborhood or a local fitness class, which has the added benefit of being social.
Try a mindfulness technique. Meditation, yoga, tai chi, and journaling are all options for mindfulness, which can reduce anxiety and depression and may even help reduce blood pressure and improve sleep quality.
Gangemi says she relies on her faith and family to help deal with stress, in addition to finding a healthy outlet by volunteering for the WNY Chapter. “When I do community outreach on behalf of the Alzheimer’s Association, I get to hear about other peoples’ struggles and learn how they cope with them,” she says. “I know not to take anything for granted.”
The Alzheimer’s Association Western New York Chapter offers free caregiver education, support groups, and care planning meetings. You can access these resources by calling 800.272.3900 or visiting alz.org/wny.
BUFFALO, N.Y. (August 10, 2022) — The Western New York Chapter of the Alzheimer’s Association will hold two free events at the Genesee County Office for the Aging in Batavia for people caring for loved ones with Alzheimer’s disease or other dementia.
On Tuesday, August 23, there will be a free educational program, “Managing Money: A Caregiver’s Guide to Finances,” held from 2:30 to 4 p.m. at the Genesee County Office for the Aging at 2 Bank Street in Batavia. The program will feature tips for managing someone else’s finances, how to prepare for future care costs and the benefits of early planning. Participants are asked to register at tinyurl.com/BataviaMM.
On Thursday, August 25, there will be a Caregiver Resource Fair, also at the Office of the Aging, from 2 to 4 p.m. The Caregiver Resource Fair will offer information about the free community resources available to people living with dementia and their caregivers, such as support groups, educational programs and care consultations. Residents may attend anytime between 2 and 4 p.m.; free on-site respite for loved ones will be available. Registration is not required but recommended at bit.ly/CAREGIVERFAIR.
These free programs are supported in part by grants from the U.S. Administration for Community Living - Department of Health and Human Services and the New York State Department of Health, respectively.
To learn more about Alzheimer’s disease or other dementias, call the 24/7 Alzheimer’s Association Helpline at 800.272.3900 or visit alz.org.
The Alzheimer's Association Western New York Chapter is now offering free, live, virtual programs and services to ensure dementia caregivers, those living with the disease and family and friends have access to vital information.
Across New York, it is estimated there are more than 400,000 individuals living with some type of dementia, with another 1 million+ people providing some kind of care for them.
Their needs for access to help, support and education is ongoing, and to address those needs, the Alzheimer’s Association Western New York Chapter is offering a number of virtual programs accessible from any location via computer or mobile device.
Below are education programs scheduled for April, plus information on how to access the programs. Confidential care-planning meetings are also ongoing via virtual tools, as are caregiver support group meetings.
Chapter dementia care consultants are planning a number of free online classes for participants to attend from the safety and comfort of their own homes. In the month of April, these education programswill be offered virtually:
Overview of Virtual Programs and Services
Friday, April 3 -- 2 p.m.
Friday, April 17 - 2 p.m.
Understanding Alzheimer's Disease and Dementia
Tuesday, April 7 -- noon
Tuesday, April 14 -- noon
Tuesday, April 21 -- noon
Tuesday, April 28 – noon
Wednesday, April 29 -- 8 a.m.
Know the 10 Warning Signs
Friday, April 10 -- 2 p.m.
Friday, April 24 -- 2 p.m.
Effective Communication Strategies
Thursday, April 2 -- 6 p.m.
Wednesday, April 22 -- 8 a.m.
Thursday, April 30 -- 6 p.m.
Understanding and Responding to Dementia-Related Behaviors
Thursday, April 9 -- 6 p.m.
Wednesday, April 15 -- 8 a.m.
Legal and Financial Planning for Dementia
Wednesday, April 8 -- 8 a.m.
Thursday, April 16 – 6 p.m.
Dementia Conversations
Thursday, April 23 -- 6 p.m.
Meaningful Activities for Family Caregivers
Monday, April 20 -- 1:30 p.m.
To register for any/all of these classes and learn how to access them, visit: bit.ly/WNYeducation or call 1.800.272.3900.
Caregiver support group meeting sare also being offered in a number of ways, including telephone conference calls and webinars. To learn more about taking part in a virtual support group meeting, visit: bit.ly/WNYsupport.
The Association’s around-the-clock Helpline is also available to answer questions about programs and how to access them, address concerns, and discuss other resources. That number is 1-800-272-3900.
Confidential care consultations to discuss care planning, finances, and more will continue to be available via telephone to the Helpline: 1-800-272-3900. Video chats are also possible for these free virtual meetings.
And finally, the Association has a dedicated website to help caregivers whose loved one is at home and those whose loved one is residing in an assisted living facility. That website is: alz.org/COVID19.
Ann and Dave Scherff, of Le Roy, are planning a rare getaway, a respite from caregiving for their disabled adult son who lives with them, and someone else is picking up the tab.
It's actually a nonprofit organization in Manlius, east of Syracuse, that is footing the bill for a two-day stay at a bed-and-breakfast inn. The motto of David's Refuge is "Caring for the Caregiver."
It is a mission with an outreach that is growing in Western New York.
Several Genesee County families like the Scherffs have benefitted from this charity, which provides respite, resources and support to parents and guardians of children with special needs or life-threatening conditions.
The goal is to help them be refreshed, restored and renewed in their caregiving roles.
It's easy to burn out.
"Knowing that someone else cares, that we're not alone, being supported -- has given me hope," Ann says.
The couple has a total of five adult children, three of whom have disabilities, but only one remains at home. Still, they have oversight responsiblity for their two other disabled sons, in addition to Ann's disabled sister-in-law.
When they go away, they arrange for professional nursing staff to care for their live-in son.
They have gone on four two-day hotel stays so far. Families aided by David's Refuge are eligible to go on one per year. Afterward, they are also given a $50 gift certificate to enjoy at a local restaurant.
"Doing something to put yourself first," as Ann says, is uncommon for people like the Scherffs.
Families such as theirs not infrequently incur extraordinary expenses while caring for their loved ones; not everything is covered by insurance or government assistance. So splurging on a weekend away is a luxury too rich to contemplate in a lot of cases, even though the results are beneficial to mind, body and spirit.
The widely recognized conundrum provides impetus for the outreach that David's Refuge does.
"We are currently serving 250 families, 120 of whom are from the Western New York area, including Rochester, Buffalo and surrounding communities," said Christine Corbett, director of philanthropy for David's Refuge.
To help their cause, the organization is hosting a fundraiser in Darien Center on Friday, June 15, at the new and beautiful boutique hotel River Spring Lodge. It is operated by David (AKA "Chef Dave") and Carolyn Hamer.
Called "Fireworks for Friends," the 7 to 10 p.m. event will feature a private fireworks display, live music, two beer or wine tickets, free parking and a silent auction. Culinary delights will be served up by Chef Dave, including hors d' oeuvres to pass as well as stationary appetizers.
The cuisine, which Chef Dave defines as "refined American," is highly praised. Guests gush that it is "incredible, exquisite, amazing and remarkable."
Cost per ticket is $50 for "Friends for Fireworks." River Spring Lodge is located at 1961A Church Road, Darien Center.
The Scherffs plan to attend.
To purchase tickets, visit here, or contact Christine Corbett at (315) 382-4204 or email her at Christine.corbett@davidsrefuge.org
To find out more about David's Refuge, click here.
The Genesee County Office for the Aging announced today that they have funding available to help caregivers during the upcoming holiday season. If you are caring for someone who is getting forgetful or is sometimes confused, and would feel better not leaving them alone for an extended period of time, there is help. Funding is available through a NYS Department of Health grant which will reimburse a friend, or family member who does not live in the household, to come to the home and keep your loved one company.
Jill Yasses, Caregiver Counselor at Office for the Aging, noted that, “We often speak with people who are caring for a loved one who is sometimes a little confused. They may not need someone with them all the time, but the person who lives with them isn’t comfortable leaving them for extended periods of time. This grant allows for financial compensation to a friend or other family member to stay with the individual for a day, so the caregiver can take a much needed break and recharge.”
It is easy to become overwhelmed, especially during the holiday season. Before that happens, contact NY Connects/Genesee County Office for the Aging at 585-343-1611 to ask about Caregiver Respite. This service is made possible by a grant from the Western New York Alzheimer’s Caregiver Partnership, the New York State Department of Health, and by funding from the New York State Office for the Aging, Federal Older Americans Act, NY Connects and the Genesee County Legislature.
You will find all of the long term care and service options that are offered throughout Genesee County by going to www.co.genesee.ny.us and clicking on NY Connects Genesee Care Options. This information is for people over age 60, disabled adults, children, infants, and their caregivers.
Many times; disability, aging, injury, or illness may lead to future problems. You, a family member, or a loved one may need help to plan for further care. Making choices about care during these times can be hard.
Contact us through our website or by calling 585-343-1611 for more information
