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In-home care provided despite absence of admission
Providing hospice care to Alzheimer’s patients has always been a challenge to hospices. The problem in clearly identifying the terminal phase of "six months to live or less" has kept many deserving patients from hospice care.
Hospice Atlanta, a division of the Visiting Nurse Health System that serves 26 counties in metropolitan Atlanta, is no different. In addition, the demand for Alzheimer’s care is so great, patients are placed on a waiting list and often die before even being admitted into its Alzheimer’s care program, which includes both home health and hospice components. It is a problem that can only be solved by changes in federal requirements that would allow more patients and money to flow into the program, which allows for sliding fees to accommodate impoverished families. As it stands, the program’s respite care services are paid for through donations.
"We are totally dependent on benefactor money to run the program," says Talya Bloom, RNC, director of the Alzheimer’s Care Program at Hospice Atlanta. "As it stands, we can only handle 20 to 25 families at a time."
Rather than shrug its shoulders and accept the realities of Medicare regulations, Hospice Atlanta found a way to meet a portion of Alzheimer’s patients’ needs through a network of volunteers.
With as many 95 patients and their families waiting to get into Hospice Atlanta’s Alzheimer’s program, officials there believed they could at least provide respite care, resource referral, and track patient progress by using volunteers.
"Every month, the most-often-asked question was whether we provided respite care. Caregivers would say, I just need time to get away,’" says Jolita Wainwright, volunteer coordinator of Hospice Atlanta’s Alzheimer’s volunteer program. "The obvious was staring us in the face. The problem was what to do about it."
But without a model, Wainwright had to start from scratch. From the beginning, she faced three immediate challenges:
1. Identify the needs of the caregiver.
2. Identify volunteers within a close proximity to visit with the patient and caregiver.
3. Keep caregivers connected to the community.
Once a patient is placed on the waiting list, which has an average two-year wait, Wainwright contacts the family to perform an assessment. The family is told of the possibility of volunteer help and asked if they are interested. About one out of three families indicate that they are interested in having volunteers come to their homes, she says.
Although families waiting to have their loved one placed in the Alzheimer’s program have indicated that respite care was needed, the types of relief care were not known. For instance, some caregivers simply wanted time to themselves, where they could sit in another room and read a book or sleep, while others needed volunteers to care for a family member while the caregiver ran essential errands.
"I found out that a lot of families didn’t want to leave the house," Wainwright says. "Some just wanted time to focus on tasks like cleaning and doing the laundry."
In order to get to the specific needs of each patient, each caregiver is asked to fill out a needs survey. (See survey on p. 83.)
The survey asks about transportation the caregiver needs to places such as church, shopping, and social activities. The caregiver is asked to list the normal dates and times those trips occur during the week.
The survey also queries caregivers about common errands, such as trips to the grocery or post office, and whether they need a volunteer to prepare meals or perform household chores. The survey asks whether patient companionship is needed to give the caregiver a two- to four-hour break. There is a section that asks whether the caregiver needs telephone assistance in the form of assurance or in trying to secure community services and programs.
The survey allows Wainwright to match the needs of the family with the best-suited volunteer. The Atlanta Hospice Alzheimer’s volunteer program has about 40 volunteers, all with a variety of skills, availabilities, and restrictions. For instance, some volunteers are clear about the types of patients they are willing to work with, while others have work and family obligations that limit their availability.
"From this, I fashion the lengths of time volunteers give respite care, [which is] usually one to four hours," Wainwright says.
Finding volunteers is No. 1 challenge
The next challenge is finding volunteers to fill the specific needs of families. As Wainwright discovered, the abilities and availability of volunteers varied more than the families themselves. Adding to the challenge was recruiting volunteers in outlying areas of metro Atlanta to meet the needs of families in suburban and rural counties.
"It’s still a challenge," Wainwright admits. "When a new family is added to the list and I ask if they want a volunteer, right off the bat they ask for one."
Often a volunteer isn’t available right away, leaving Wainwright to search for other resources, such as churches, for initial help. "If there is one thing I’m disappointed with, it’s is the response of churches," Wainwright says.
But where churches have failed, Wainwright has found success in recruiting volunteers in other areas. Most notably, she is pleased with the response she has received from nursing schools in nearby colleges and universities. She has also found volunteers from the Visiting Nurses’ Association.
Once volunteers have been brought into the program, they are not simply sent into the homes of families to fulfill whatever request they have. Rather, recruitment is just the beginning. Volunteers are subjected to an intense training program that covers a wide range of focus, including a quick education about the disease and rules about their role as a volunteer in the patient’s home.
Volunteer training consists of four distinct parts:
Volunteers are introduced to the Alzheimer’s care program and given its history and a brief introduction to the volunteer program. The first part of the training outlines other venues in which patients are cared for, such as day care and home health. By informing volunteers of alternative care sites — such as day care centers — they are armed with knowledge they can pass along to families looking for additional respite care.
2.Patient and family information.
Volunteers are trained in assessing caregiver needs and getting to know the patient. This helps the volunteer establish a relationship with the patient and captures information that will help clinical staff when the patient is admitted into hospice.
They are introduced to the program’s participant highlight sheet, which prompts them to ask a series of questions about the patient, including where the patient grew up, hobbies, and favorite foods.
"It teaches them to be observant," Wainwright explains. "We ask them to look around the house for things like pictures. Do they see pictures of family around the house or not? This can tell us a lot."
Volunteers are trained to look for items that could lead to falls or injuries by using a prevention checklist. The checklist requires volunteers to investigate the bathroom for non-slip surfaces and safety rails.
They also perform nutrition screening, using a form that helps the volunteer to assess functional status. For example, the form asks a volunteer to circle whether the patient is able to cook and feed him or herself; requires some assistance; relies on the caregiver to prepare food; or relies on caregiver to both prepare and feed.
3.Role of the volunteer.
This section of training deals with procedures the volunteer must follow. At Hospice Atlanta, the role of volunteer is described as:
• Purpose. To ensure that Alzheimer’s caregivers on waiting lists have access to volunteer support in conjunction with an interdisciplinary team and the plan of care.
• Policy. Volunteer coordinator will assess each patient/family for needs that could be met by a trained volunteer. The volunteer, once assigned to a patient, becomes part of the interdisciplinary team, communicating observations made during each visit.
The volunteer respite provider is trained in establishing an initial relationship with the client, establishing trust and learning about the impact they can have on the family. They are taught that trust is gained through positive body language, a war approach, assuring their support of the family, and letting them know that they enjoy the client’s company.
4.Overview of Alzheimer’s disease.
One of the ways to establish a trusting relationship with the client, volunteer trainees are told, is show knowledge of the disease. Part of the training includes a comprehensive education of the disease’s symptoms, diagnosis, and treatment. Volunteers are schooled in the progression of the disease, problem behavior, and bereavement.
The disease education begins with a brief description of the disease along with statistics, including the cost of caring for an Alzheimer’s patient.
They learn that Alzheimer’s is a long process with three distinct stages of dementia that can last a dozen years. As volunteers learn more about the disease, they will come to understand basic principles involved in caring for patients with the disease, treating each patient with respect and dignity, and that creativity is necessary in caring for an Alzheimer’s patient.
The creation of a volunteer program to complement the Alzheimer’s care program has been critical to Hospice Atlanta’s efforts to serve patients and their families, even if they have not been admitted into the program.
"It’s a way to keep in touch with them and provide them with the resources they need," says Bloom.