"There are four kinds of people in this world: those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers."
— Former First Lady Rosalynn Carter
Judy DellaRipa and Lynette Loftus like to refer to the aging of America as the "silver tsunami." As nurses at Bon Secours St. Mary's Hospital in Richmond, Va., and baby boomers themselves, they are well aware of two astounding national demographics:
- Americans 85 years and older are, percentage wise, the fastest growing segment of the population.
- Since 2011, Americans have been turning 65 at the rate of 10,000 per day.
"Taken together, those statistics add up to a lot of people becoming part of the 'sandwich generation' — caregivers for older, as well as younger, family members," says DellaRipa, an advanced practice registered nurse for medical/surgical service.
Through the hospital's Nurses Improving Care for Healthsystem Elders, or NICHE, program, both DellaRipa and Loftus, a registered nurse in the ambulatory surgery unit, have been well trained professionally to care for older adults. So it came as a surprise to the pair that they — and many of their colleagues — felt so unprepared to personally care for aging family members.
Caregivers' atlas
"Caregiving is a labor of love; many people are juggling jobs along with providing care. When unexpected illness occurs, it can be physically, emotionally and financially draining," says Loftus. "In a crisis, it's hard to remember your middle name, let alone information on professionals and organizations that can help provide support."
That's why, in March 2011, the two proposed developing an intranet website, "NICHE 4 Caregivers," that would make information on topics as varied as senior housing, advanced directives, transportation assistance, elder fraud and long-distance caregiving easily accessible to the approximately 2,500 employees at St. Mary's.
"Technology — plus the sheer amount of data available on the Internet — can be overwhelming at times," says Loftus. "Through this website, we hoped to take the best, most relevant information and make it more accessible and user-friendly for caregivers."
Management at St. Mary's embraced the idea as an innovative, proactive way to help care for caregivers. Both women carved hours out of their work schedules and personal time to devote to research; they also worked with in-house information technologists to create the site. NICHE 4 Caregivers went live in June 2011.
Anticipate, prepare
To date, the site is still growing, as is its audience. There are pages devoted to Alzheimer's and dementia care; checklists for defining housing needs, evaluating services and drawing up important legal papers; even a page where caregivers can share personal stories and connect with each other for support and encouragement.
When Richmond experienced massive flooding and power outages from Hurricane Irene in August 2011, a page was added to the site on preparing for weather disasters with the elderly in mind. The site is adding information on hospice and palliative care.
"We try to not only provide links to national organizations like the Mayo Clinic, AARP, the National Caregivers Library and so on, but also local information from places like the Virginia Insurance Counseling and Assistance Program, ElderFriends in Richmond, and Goodwill's FREE program," says Loftus. FREE stands for Foundation for Rehabilitation Equipment and Endowment.
Content, she adds, is driven by interest. At its start-up, the site got about 10 hits a week, but by November 2011 — when feedback was solicited as part of National Family Caregivers Month — it was getting 250 hits weekly.
Proof of concept
One employee who has found NICHE 4 Caregivers to be a "fountain of helpful information" is Colleen Herbig, a nurse who has been sharing the care of her 85-year-old mother with her siblings since her father passed away two years ago. The mother has Alzheimer's.
"My father took care of my mother even when he was ill. As a nurse, I knew she was on Aricept (donepezil hydrochloride) for dementia treatment, but I wasn't aware of how confused she was until he died," she says. "And even though my husband is a lawyer, I have used the site for all sorts of legal issues, from power of attorney papers to paying taxes on wages one of my sisters earns as my mother's primary caregiver."
Emergency room admission nurse Sue Gilnett says the site — especially the page on long-distance caregiving — has been "the greatest thing since sliced bread."
"My sister, who lives in California, and I are responsible for the well-being of our 93-year-old mother in Vero Beach, Fla. At the moment she still lives at home and is very alert, vibrant and mobile," says Gilnett. "But the links provided by NICHE 4 Caregivers have given me the ability to research everything from care facilities to at-home services and church support that is available in her area. I'm more confident now that we won't be caught by surprise should the need arise for a change in my mother's living situation."
Such sentiments reinforce the validity of the concept of NICHE 4 Caregivers for its creators, who hope to eventually offer the site to the greater Richmond community in addition to St. Mary's employees.
"We feel as though we are embracing our mission of providing good help to those in need — both our employees who are caregivers and the elderly who depend on them," says DellaRipa. "We know that having a good caregiver directly impacts hospital readmissions, medication compliance and nutrition with elderly patients."
Adds Loftus: "The combination of our changing health care systems and a growing elderly population — many of whom will be living longer with chronic illnesses and various levels of functions and disabilities — are turning caregiving into a public policy issue.
"We are not ahead of the curve with this site — the tide is coming in fast," she adds. "We need to give people the tools to empower them to provide the kind of care needed by elderly family members."