Regardless of whether they realize it, case managers have likely worked with patients who are living with Alzheimer’s disease or dementia. The diagnosis rate is relatively low, says Michelle Cornelius, LMSW, EdM, director of memory care programs at Cypress HomeCare Solutions, as “typically only 50% of people with dementia are actually diagnosed with the disease.” Researchers with the DelpHi Trial found a formal diagnosis of dementia is between 50% and 80%, even in wealthy countries with advanced medical care.1
“People are often afraid to go to the doctor and get a diagnosis, or they think that nothing can be done anyway, or that it’s a normal part of aging, which it’s not,” Cornelius explains. “Other people worry that if they get a diagnosis, they’ll have to change how they’re living. When people do talk with their doctor, sometimes they take a ‘wait-and-see’ approach, so they don’t get diagnosed as early as they should.”
Even when a formal diagnosis is made, treatment is not necessarily offered — and for many patients, the diagnosis largely is overlooked. When people with dementia are admitted to the hospital (with or without a formal diagnosis), staff and case managers may be unaware of the unique care this population requires.
“People are interacting with patients with dementia, and no one knows it,” Cornelius says. “When patients living with a form of dementia enter the hospital, case managers may notice language deficits, holes in their social mores, difficult interactions, and more. Many understand dementia to be just about memory loss, but it’s so much more than that.”
Under the Surface
Cornelius describes dementia as a largely hidden disease, one that can surface at times and seem to recede at others. “Sometimes, a person with dementia can act as if everything is fine and normal, so case managers and others may take their words at face value, which leads to recording things that are incorrect.”
A case manager may choose to keep the possibility in mind during assessments and other interactions, even when the patient’s chart does not indicate a dementia diagnosis. If the patient seems particularly forgetful, asks the same question repeatedly, or is asking where they are, it might be wise to consider dementia. Listening carefully can help shed some light on what might be going on beneath the surface.
“I’ve had people with dementia sit next to me and tell the nurse that XYZ happened, when nothing of the sort actually happened,” Cornelius shares. “The brain fills in gaps. The patient isn’t trying to lie or speak untruths. Their brain is just trying to carry the conversation so that they don’t appear as though they don’t know the answer. Sometimes, it’s just the brain’s truth. There is no point in trying to argue or correct them. That’s simply not going to work.”
Detecting and Connecting
Since case managers are experienced in serving a variety of patients and are accustomed to gathering detail, they likely will be successful when asking leading questions and paying close attention to behavior, which is a particularly high form of communication for people living with dementia.
When entering the patient’s room, Cornelius explains, “introduce yourself to [the patient], even if you’ve already been there. Talk with them, find out the names of their family members, and above all, use validation practices to validate their experience.”
For example, Cornelius suggests when a patient is adamant he or she wants to go home, the case manager can respond in kind by repeating, “You want to go home.” Another recommendation is to diffuse the situation by providing a comforting food or drink and asking the patient to talk about his or her home. “Here is a glass of apple juice. Tell me more about your home,” or “Here is a cookie. I bet you’ve had these kinds of cookies at your home, too.”
Finding common ground with the patient, or at least learning about what he or she likes, can help calm the patient and create a better atmosphere for discussion.
“Find out what gives them joy,” Cornelius says. “Do they like music? Bring in a radio. Be proactive. They may love music, but won’t necessarily make the connection or ask for it. But if you make that happen for them, it could instantly reduce their anxiety.”
Creating a Safe Space
Since high levels of anxiety and visible agitation are common for people living with dementia, it is important for the case manager or other hospital staff to create a safe, calm environment for the patient. Before looking to medicate the patient, it is wise to spend time finding out what is going on and if the patient is anxious because he or she is legitimately concerned for their safety and well-being.
“Medication is not always the right choice,” Cornelius explains. “If the patient seems upset about something, the case manager has an opportunity to be a detective, to figure out what exactly is going on. Because of the way the brain operates for a person with dementia, their repeating of ‘I want to go home’ may actually indicate that they feel unsafe, feel lost, or don’t know who is around. In this case, anti-anxiety medication may not necessarily be needed; rather, they need someone to make them feel safe.”
Whoever is in the room at a given time is the right person to help the patient feel safe and secure. Due to the nature of the disease, the patient might experience a fleeting sense of safety and security. While he or she may have become calm during a previous interaction, the next person who enters the room may need to reassure the patient he or she is safe. The case manager can help the staff by charting how the patient appears, how he or she responds, and the appropriate words to calm the patient.
While many patients can benefit from their family or loved ones communicating with their hospital case manager, it is important in the case of a patient living with diagnosed or undiagnosed dementia.
“For those without a formal diagnosis, the case manager may want to reach out to the family to say, ‘I don’t know if your loved one has a memory impairment or not, but here are some resources you may find helpful.’ We need to be willing to hand things out without the diagnosis, especially because out of the 50% who are formally diagnosed, only 50% even acknowledge it.”
For a patient with a formal diagnosis, the case manager still might face unique challenges when broaching the topic with family members.
“Families can have a tough time opening up and telling you what’s going on if they don’t think you understand dementia,” Cornelius explains. “It’s hard at home. It’s a grief process as they slowly lose this person they love, and often the patient’s family member wants to seem capable of caring for their loved one while at the same time not wanting their loved one to look like they are unable to do what they need to do.”
The patient’s family needs a case manager who understands the caregiver’s situation and will not judge them. Caregivers might be hesitant to tell the case manager “how they have to secure all the doors to keep the person home, or hide all the shoes to keep them from walking away,” she says. “They don’t want you to know that their person is less than capable.”
One way to approach the patient’s caregiver in a disarming and effective way is to ask pointed questions to show you understand what is going on. “Rather than asking if they are showering their loved one at home, it’s better to ask, ‘How are you showering this person at home?’” Cornelius suggests. “This type of question can elicit answers that indicate what struggles they are having at home, allowing the case manager to focus the intervention or recommendations for care. Usually, case managers are comfortable with asking those questions, but sometimes they may not ask because they don’t want to offend the caregiver, especially if they seem more guarded.”
Once a connection is established with the family, the case manager can provide them with resources to help at home — especially considering most doctor’s offices are not likely to offer much information, even with a formal diagnosis. The family connection is important for patients living with dementia or Alzheimer’s — the case manager cannot rely on the assumption that any information or instructions they give the patient will be remembered or followed.
Extending to the Community
Gathering resources on dementia and Alzheimer’s can start with connecting to the Alzheimer’s Association, which provides information on several forms of dementia. Cornelius also recommends “starting within whichever location [case managers are] in and connecting with the big hitters in that area.”
Local organizations often provide staff training, lunch-and-learn sessions, and other continuing education. “It’s a win-win,” Cornelius adds. “Case managers connecting with the community helps both parties. You get to know the community partners, and they’re helping you understand dementia better. What all of these organizations want is to be partners with hospitals so when case managers reach out to the memory care agencies, a real connection takes place.”
If case managers need to discharge a patient to a memory care facility, Cornelius suggests considering both the care needs of the patient and the family’s budget. She also notes case managers should look for facilities whose entire staff is well-versed in memory care.
“If only the dementia care nurses in the facility are good at it, that may not help the patient or family,” she says. “But if everyone is — including the dining staff, the housekeeping, everyone — that is a great thing.”
Finally, she recommends case managers check in regularly with patients, families, and their hospital’s emergency department (ED) to better understand the quality of local memory care facilities.
“You do have to continue to get feedback from patients, and especially from the ED, because they’ll know which facilities are constantly sending patients in or even dropping them off at the door without sending a staff member to escort them in and stay with them,” Cornelius explains.
Most importantly, caring for patients living with dementia requires an excess of patience.
“Take a deep breath and be patient with yourself and patient with them,” Cornelius says. “They’ll pick up on your energy, so if you are a calming presence, they will likely be calmer. Being OK with having the same conversation over and over, and knowing every case is different, can help keep expectations realistic.”
- Eichler T, Thyrian JR, Hertel J, et al. Rates of formal diagnosis in people screened positive for dementia in primary care: Results of the DelpHi-Trial. J Alzheimers Dis 2014;42: 451-458.