How one hospice reaches Alzheimer’s patients
Survey data help identify needs
Despite the absence of any monumental policy change in Medicare reimbursement for Alzheimer’s patients, programs affiliated with hospice organizations offer a solution to organizations trying to provide better access to care for those patients. One example is the Alzheimer’s Respite program affiliated with Visiting Nurse Health System in Atlanta, the parent of Hospice Atlanta.
"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."
Hospice Atlanta’s Alzheimer’s respite program works to meet these goals:
- Identify the needs of the caregiver.
- Identify volunteers within a close proximity to visit with the patient and caregiver.
- Keep caregivers connected to the community.
Discovering the types of respite care needed
Although families waiting to have their loved ones placed in the Alzheimer’s program had indicated that respite care was needed, the types of relief care they needed weren’t known. For instance, some caregivers simply wanted time to themselves when 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.
In order to discover the specific needs of each patient, caregivers are asked to fill out a needs survey. 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 these trips occur during the week.
The survey also asks caregivers about common errands, such as trips to the grocery store 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 the hospice to match the needs of the family with the best-suited volunteer. Hospice Atlanta’s Alzheimer’s respite program has about 40 volunteers, all with a variety of skills, availabilities, and restrictions. For instance, some volunteers only want to work with certain types of patients, while others have work and family obligations that limit their availability.
Intense training program prepares volunteers
Volunteers are subjected to an intense training program that covers everything from a quick education about the disease to observation techniques to their role as a volunteer in the patient’s home.
Volunteer training consists of four distinct parts:
• Program overview.
Volunteers are introduced to the Alzheimer’s Care Program and given its history. The first part of the training outlines other venues in which patients are cared for, such as day care and home health. Informing volunteers of alternative care sites such as day care centers arms them with additional knowledge they can pass along to families looking for additional respite care.
• 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 also are introduced to the program’s Participant Highlight Sheet, which prompts volunteers to ask a list of questions about the patient, including the patient’s birthplace, hobbies, and favorite foods, to name a few.
Volunteers are trained to use a prevention checklist to help them look out for items that could lead to falls or injuries. The checklist requires volunteers to investigate the bathroom for things like non-slip surfaces and safety rails.
Volunteers also perform nutrition screening, using a form that asks the volunteer to assess functional status. For example, the form asks a volunteer to circle whether the patient is able to cook and feed self; requires some assistance; relies on the caregiver to prepare food; or relies on caregiver to both prepare and feed.
• Role of the volunteer.
This section of training deals with procedures volunteers must follow. At Hospice Atlanta, the role of the volunteer is described in these terms:
— Purpose: To ensure that Alzheimer’s caregivers on waiting list have access to volunteer support in conjunction with 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 warm approach, assuring the family of their support, and letting them know that they enjoy the client’s company.
• Overview of Alzheimer’s disease.
One of the ways to establish a trusting relationship with the client, volunteer trainees are told, is to show knowledge of the disease. So part of the training includes a comprehensive education on the disease’s symptoms, diagnosis, and treatment. Volunteers are schooled in the progression of the disease, problem behavior, and bereavement.
Learning about Alzheimer’s disease
Disease education begins with a brief description of the disease, along with statistics, including the cost of caring for an Alzheimer’s patient. Volunteers learn that Alzheimer’s is a long process that can last a dozen years, with three distinct stages of dementia. As volunteers learn more about the disease, they will come to understand basic principles involved in caring for patients with the disease, such as the importance of creativity in the caregiver’s approach. They also will learn how to treat each patient with respect and dignity.
The creation of a volunteer program to complement Hospice Atlanta’s Alzheimer’s care program has been critical to the hospice’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," said Bloom.
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