Families of patients with advanced Alzheimer's disease have many resources available to help them set up around-the-clock care for their loved one, said a dementia psychologist at Baylor College of Medicine.
"As Alzheimer's disease advances, the necessary level of care expands. Ultimately, care is needed 24 hours a day, 7 days a week to ensure a patient's safety and comfort level," said Dr. Mary Kenan, assistant professor of neurology at the Alzheimer's Disease and Memory Disorders Center at BCM. "Some families may struggle through the process of finding a caregiver, but it is important for them to know and use the resources they have available to them."
Kenan said families can locate caregivers on their own, through agencies or may opt for full-time care facilities.
Family serving as caregiver
"Choosing to care for a family member with Alzheimer's can be challenging but incredibly rewarding," said Kenan. "Before making this decision, the individual should consider their own physical and emotional health, as well as the demands from their own children and other family members."
Kenan said although some family members may feel guilty about not caring for their loved one, it is good to know and acknowledge upfront that they are not comfortable helping in that role.
"Think of other ways you can contribute," said Kenan. "Maybe you can provide financial support or be the person in charge of ordering medicine and taking your loved one to their doctor's appointments."
If there are multiple family members willing to help out, divide up responsibilities, she said.
Going through an agency
Although going through an agency may not be a good fit for all families, it can be very helpful for some, said Kenan.
"There are several things to consider when deciding on an agency to help find a caregiver for your loved one," said Kenan, including:
- How do they screen individuals?
- How many references do they require before they hire someone?
- Have they had an experience working with Alzheimer's and/or dementia patients?
When interviewing potential caregivers, "it should be a mutual interview," said Kenan. "The candidate should have questions about your loved one, their history, preferences, routine, and expectations that you have as an employer.
"Ask critical questions," she said. "Ask the caregiver if they are comfortable bathing your loved one, dressing them, helping them eat – these are things that must be considered."
Also keep scheduling in mind, Kenan said, it's important for Alzheimer's patients to have continuity.
"If possible, have the same person care for them consistently," said Kenan. "And ask what the plan is for a substitute if that person is sick."
Full-time care facilities
Ultimately, some families may choose to place their loved ones in full-time care facilities.
"There are a lot of positive social benefits for Alzheimer's patients at these facilities," said Kenan. "The environment may be more socially stimulating and provides structure and routine."
"This is a difficult decision for most families," said Kenan. "Family members should communicate with one another and try to decide together on the best plan for their loved one."
The Alzheimer's Association provides care consultants and may be able to direct families to a psychologist, social worker, or geriatric care manager who can provide support and assist a family in making a decision about long-term care, she said.
"These are good outlets to help families get through the mixture of emotions they may be feeling," said Kenan. "Locate your local chapter and take advantage of the support they offer."
"Cost is always a factor," said Kenan. "Families should begin gathering information about the expense of all long-term care options, and identify family resources early on."