When Dementia Erodes Trust, How Can Doctors Respond?

A dementia diagnosis can profoundly affect patients and their families, forcing them to confront not only the present but also an uncertain future. Trust is essential for the patient, family, and physician because they navigate changes and challenges as the disease progresses.Establishing trust among the physician, the patient, and the patient’s family or caregivers can be a difficult needle to thread. So how a physician delivers the initial diagnosis can have a big impact, physicians and researchers said.All parties, the patient, caregiver, and other family members, need to feel confident in the care that their loved one is receiving, which starts with the way the diagnosis is delivered.An effective way to start those conversations is by asking and inviting questions, said Melissa Armstrong, MD, director of the UF Health Mangurian Clinical-Research Headquarters for Lewy Body Dementia in Gainesville.After the patient, she moves onto the caregiver and then to any additional family members who may be present so that all parties feel like they have a voice.Displaying empathy is the most important practice for clinicians when delivering a diagnosis of dementia, according to research led by Armstrong and published in the journal Neurology Clinical Practice. The research found that during dementia diagnosis, clinicians should show compassion and empathy, ask their patients about care preferences, instill realistic hope about treatment outcomes, and provide education and connections to high-quality resources.Bedside manner matters, and that means taking time to be present with patients, never appearing rushed, speaking slowly, and avoiding big medical terms. It’s also helpful to talk about how the diagnosis may affect a patient day-to-day rather than provide a rigid timeline of the disease. And once they understand what’s happening, allow room for what can sometimes be an emotional reaction, said Armstrong.“What people want is empathy, which may seem obvious, but again and again in interviews with dementia patients, they say that they didn’t receive enough of it,” said Armstrong.Post-Diagnosis, Proactive Planning Is KeyAfter the diagnosis, another step in building a foundation of trust between the patient and caregiver is providing the tools for proactive planning after the patient knows the diagnosis. This instills confidence and can help ensure that future care aligns with the values and preferences of the person with dementia and their family, research suggests.For example, physicians can provide patients with a checklist for establishing who will make legal and end-of-life decisions, as well as tools for protecting legal assets. Physicians can connect patients and caregivers with online resources or local support groups so that neither is left feeling alone. They can also provide long-term care resources, especially if long-term care options in the area are scarce and early planning is necessary.It’s also important to discuss with the patient which other family members should be involved in decisions and discussions beyond the caregiver, and it’s crucial to document these decisions, said Armstrong.For physicians, trying to connect with patients and caregivers, making them feel involved, and trying to see the world through their eyes can help to make them feel cared for during a high-stress time, said Tharick Pascoal, MD, PhD, a neurologist and associate professor of neurology and psychiatry at the University of Pittsburgh School of Medicine in Pittsburgh.“The more both parties are included in the consultation,” said Pascoal, “the more committed all parties will be in the treatment plan.”Arranging separate conversations with patients and caregivers may be helpful for making sure that the needs of both parties are considered. “This way both parties have a chance to be heard,” said Kyra O’Brien, MD, a neurologist at the University of Pennsylvania Perelman School of Medicine and medical director of the Penn Medicine GUIDE Program.Some patients may be uncomfortable when you talk about their cognitive impairments with caregivers present. Separate conversations may also lessen the chance of argument between caregiver and patient, while also reducing the likelihood that a patient will think a physician is favoring the caregiver’s opinion.A study published in Focus found that speaking with patients and caregivers separately can uncover hidden conflicts and unmet health needs. For example, a spouse or other caregiver may be reluctant to reveal the extent of their caregiving stress or fatigue in front of the patient.Hindrances to Trust in the Triad of Dementia CareWith dementia, there’s always a tension between autonomy and safety that comes with care, but the need for safety has to override that of autonomy, experts said.As the disease begins to erode a patient’s autonomy, it can also take a toll on the physician-patient relationship. Patients may react with anger or sadness when a physician delivers difficult news about their ability to manage finances, drive, or live independently.As patients lose autonomy, ensuring that they fully understand what’s going on is key to helping them maintain confidence in health recommendations, said Helen H. Kyomen, MD, medical director of the Boston Medical Center–Brighton Geriatric Psychiatry Program in Boston.“Sometimes I’ll share things with patients and think they’ve understood, but when I ask them to explain it back in their own words, I’ll realize they haven’t gotten it,” said Kyomen.As cognitive decline progresses, physicians must continue to prioritize the patient. Doing so can help preserve trust at key moments in the disease, said Kyomen.Even patients with mild cognition problems may require more response time to answer questions, process information, and formulate answers to questions.With personal finances, framing change as proactive planning may reduce the sting of losing autonomy. Research published last year in The Gerontologist suggests that people living with dementia value participation in decision-making even if the financial decisions are being made for them. It can also help to present shifting financial management in terms of protecting the patient’s hard-earned savings against mismanagement.When driving is no longer safe, patients can be understandably resistant to their keys being taken away. Clinicians can ease resistance by referring patients who are nearing the point of being unable to drive to a driving assessment, said Carolyn Chow, MD, an internal medicine resident and dementia researcher at the University of Pennsylvania.Screening assessments are brief and simple tests that can be done by an occupational therapist to identify who may have difficulty driving as a result of medications, problems with cognition, slowed reaction time, or motor impairment.“Screening tests are concrete, external measures that help to deliver insight to loved ones because if a patient sees themselves failing the test, it can help to facilitate their own acceptance,” said Chow.Maintaining Trust In the Face of ParanoiaParanoia, suspicions, and delusions are symptoms of dementia that can erode a patient’s trust in their physician and caregiver. Delusions can paint the way a patient feels about those who are taking care of them, even when these beliefs are false.According to the Alzheimer’s Association, delusions can occur in the middle to later stages of Alzheimer’s disease. For example, the patient might be convinced that another family member is stealing their possessions. Chow said that in this case, it’s best not to argue with the patient having these fears but rather validate the emotions surrounding the delusions even if the event is not true.Physicians may also want to speak to the patient and caregiver separately to avoid conflict between the two parties. If the physician isn’t sure what the truth is, they can speak to other family members to get a better idea of what might be going on at home or consider a home visit if they have an inkling that a patient’s paranoia may be founded. But in all cases, Chow said that body language and active listening conveys to the patient that you’re there to help them.Managing Dementia Caregiver BurnoutFocusing on the well-being of the caregiver can mean identifying resources that can help with the burden of care as well as facilitating residential care when the caregiver can no longer cope with their role at home.Dementia care can be incredibly taxing with as many as 40% of caregivers experiencing depression, especially as the disease progresses and patients can no longer care for themselves. If the caregiver has depression, it can also affect the care that a patient with dementia receives.Caregiving stress is different for everybody. Some people are able to keep a person with dementia at home throughout their care. For others, it may be necessary to have the person live at a specialized care center for reasons that include the patient’s condition, the health of the principal caregiver, the level of family support, and financial considerations.There’s no one-size-fits-all in these decisions, but connecting caregivers — especially those who don’t have a lot of extra support — to residential care facilities early on as a backup plan can help with burnout.“With spousal caregivers in particular, I remind them that this is not ‘giving up’ and it’s not a failure. In some circumstances, it can be a step toward restoring their marriage because with someone else taking over the day-to-day caretaking, the spouse can be a spouse again,” said Armstrong.Either way, as the dynamic shifts, ensuring that your caregiver is also cared for can help to maintain a balance of trust in the relationship. Keeping patients and caregivers engaged in their treatment plan in the later stages can strengthen the treatment triad.In the end, said Pascoal, “the patient is the most important person in the room and, along with the support of the caregiver, should always be the center of the conversation.”The experts cited in this article had no relevant disclosures.This article is part of an ongoing, year-long Medscape series examining the decline of public trust in medicine. More content is available here.