Alzheimer’s disease is a brain disorder that slowly destroys memory, thinking skills, and other important mental functions. More than 6 million Americans are living with the disease, and over 11 million are providing unpaid care for people with Alzheimer’s or other types of dementia.
During Alzheimer’s Awareness Month in November, the medical professionals with the UAB Memory Disorders Clinic share their insight about the role of caregivers in managing the disease.
Alzheimer’s is the result of connections being lost between nerve cells in the brain. It progresses slowly, with three stages of symptoms, and the time from diagnosis to death varies. There is no cure, but treatment can manage some of the symptoms and in some cases slow down the progression.
Caring for a person with Alzheimer’s often involves managing a variety of tasks and issues, such as eating habits and nutrition, preventing falls, avoiding sleep disruption, dealing with a loss of communication, and emotional distress. Every case is different, but there are some basic methods for caring for someone with Alzheimer’s. Click here for tips for caregivers.
Putting together a team
According to the Alzheimer’s Association, about 83% of the help provided to older adults in the United States comes from family members, friends, or other unpaid caregivers. Almost half of that group are helping someone living with Alzheimer’s or another type of dementia. Studies show that these caregivers often have higher levels of stress, even though many also report positive feelings about caregiving, such as enjoying family closeness and the satisfaction of helping others.
Denise Ledlow, RN, the clinical care coordinator for the UAB Memory Disorders Clinic, says that assisting caregivers is a big part of the clinic’s collaborative approach to managing Alzheimer’s.
“When we talk about providing our patients with the best possible level of care, we specifically talk about helping the patient’s family help that patient,” Ledlow said. “We have five neurologists, six nurse practitioners, four nurses, two nurse managers, two social workers, an assistant to social workers, a pharmacist, and a pharmacy tech. Any patient who comes to us is engaged with everyone on our team, because this kind of care requires a collaborative effort. But we know that there’s also another team member, the caregiver, who needs a tremendous amount of support. That’s why we work very closely with our social workers to support that caregiver.”
Matt Cooper, CRNP, a nurse practitioner who has been with the clinic since 2017, emphasizes the need to support the family member or other individual who is caring for the patient.
“Data show that caregivers are more likely to die than the patient who has the disease,” Cooper said. “In later stages of Alzheimer’s, the patient has little or no awareness of the situation, which means the caregiver is taking on the mental and emotional stress load. That’s along with running a household, finances, day-to-day work, and caring for their loved one. This can lead to widespread inflammatory changes in the brain and body, which alters the metabolic system, immune system, sleep patterns, and overall makes that caregiver more vulnerable to chronic diseases. And since most caregivers for patients with memory issues are of advanced age as well, they are especially vulnerable.”
Phylicia Jackson is a social worker with the clinic. She says one of her goals in assisting caregivers is to make sure they understand the importance of self-care.
“It’s common for our patients’ caregivers to tell us they feel guilty about wanting to have time away from caring,” Jackson said. “But we emphasize right away that they need to care for themselves and stay healthy in order to do the best job of looking after their loved one. We want them to know that taking some time out is an effective part of the care process. We talk to them about respite programs that are specific to memory care. Respite gives them time to run errands, make doctor visits, manage basic household tasks, and do those things without feeling rushed and overwhelmed. That’s along with the fact that having time alone can restore you mentally and emotionally for the tasks ahead.”
Cooper agrees that caregivers must look out for their own well-being as part of a collaborative care strategy.
“Caregivers benefit from recognizing the limits of what they can realistically manage,” Cooper said. “For example, sometimes patients with short-term memory loss will engage in what we call shadowing behavior, because their connection to time and where they are – and the way they can understand what’s going on right now – is the caregiver. So they stick to them at all times to help with their confusion. That’s just one way that Alzheimer’s care can exhaust caregivers if they don’t call on others to take over sometimes to give them a break. We explain to families that doing so does not mean you are giving up or that you are surrendering care to others. It means that you are putting together a team to accomplish a goal.”
Have a plan in place
Ledlow and other clinic staff note the importance of being proactive, for both patients and caregivers.
“Our treatment for patients and support for caregivers are individualized, because circumstances, personal preferences, and resources vary from patient to patient,” Ledlow said. “We always listen to the patient and family’s wishes. But we definitely see a common factor: You need to put a plan in place. Our entire team can help with creating a plan and making decisions. When to stop medication that slows progression of the disease, if and when to move from the home to a care facility, end-of-life decisions — those issues and others are more easily managed if you plan in advance.”
Jackson recommends exploring options as much as possible.
“For those who have concerns about seeking outside help, it’s important to remember that you can ease into respite programs, home health care, and other resources,” Jackson said. “Plan to do these things in stages. You can take time to interview the individuals who will be providing care in your home. You can tour facilities to find the best fit for your loved one and get to know members of the staff there. We are here to assist with that and guide caregivers to a number of local and statewide resources. The important thing is to know that you don’t have to face this alone.”
Click here for links to respite care resources, click here to learn more about Alzheimer’s signs and symptoms, and click here for links to information for caregivers.