Disclosure of diagnosis in dementia is an important topic that requires a respectful and humane approach. When, how, and what is being told to the patient, by whom, and the overall impact of disclosure needs to be discussed further. Some family members may want to remind their loved ones about their diagnosis of dementia. Here we discuss some tips to handle this sensitive issue.
Medical professionals can disclose the diagnosis of dementia depending on the patient's preference.
When caregiving becomes harder, family members may be tempted to remind their loved one about their diagnosis.
Alternate methods are more productive than reminding the patient about their diagnosis.
The diagnosis of dementia is usually made through a combination of medical history analysis, physical examination, tests that evaluate cognitive abilities, genetic testing, blood testing, brain scans, and a mental health evaluation. During this time, a physician and their team can discuss the patient’s preference in knowing the diagnosis. Some patients may want to know their diagnosis, some not, while others may have certain preferences about it. Keeping in alignment with principles such as respect, confidentiality, and patient autonomy, clinical teams decide on the further course of action for disclosing the diagnosis.
Preparing to disclose a diagnosis of dementia
Disclosure of a diagnosis of dementia to the patient can have a range of potential benefits, as well as potential risks. On one hand, from a clinical point of view, disclosure of a diagnosis may provide the individual in question with access to mitigating treatment options such as cognitive therapies and interventions, drugs that help enhance cognitive ability, and exposure to modalities such as gamma tACS and intermittent light exposures. Moreover, patients may also gain access to emotional support such as counseling, music, and art therapy.
However, it is important to note that disclosure may impose certain risks, especially given the potentially sensitive nature of the information. The patient could develop feelings of anxiety, depression, or stigma in response to the diagnosis. They could also face curtailment of certain opportunities such as jobs or higher education programs due to their condition.
Furthermore, a diagnosis of dementia could legitimize legal implications such as a reduction in eligibility for insurance benefits or insurance programs. Hence, when determining whether to disclose a diagnosis of dementia, it is essential to consider the benefits and risks alongside the individual's preferences and what would be most beneficial for them in the longer term.
Research indicates that approximately 80% of patients want to know about the diagnosis. This would help them get a second opinion, plan for travel or other familial priorities, or even consider physician-assisted euthanasia. Some patients prefer not knowing the diagnosis, as there are no treatments at present that lead to remarkable improvements. Patients often indicate their preferences on how to receive the diagnosis, (e.g., in presence of family members), and know more details such as prognosis, and management of the disease.
Most physicians and medical care teams realize that, as patients and their family members process the diagnosis, and formulate caregiving plans, they may need more opportunities to ask questions, or more support in managing daily life. Patients and their families may seek additional support through support groups or advocacy groups.
Should family members remind their loved one of their diagnosis?
As the disease progression continues, it may become harder for patients to conduct activities of daily living, which in turn may lead to an increased burden on family members. In such situations, some family members may want to remind the patient about their diagnosis of dementia, but it usually does not yield the desired results.
When reminding your loved one about their dementia, family members need to identify their goal or desired outcome first. Some family members may seek appreciation from their loved ones or some form of acknowledgment of the care they provide. Some family members may simply want to state the diagnosis to end an argument or a difficult conversation. In either case, it might leave the patient and family members with feelings of resentment, anger, or frustration.
Some families may want to make this reminder to keep their loved ones safe from a potentially dangerous situation. For instance, dad may no longer remember to use the lawn mower correctly. He is not able to mow the lawn but insists on using a lawn mower. To avoid this potentially dangerous situation, talk to your dad about other reasons such as a rain forecast, or having a neighbor kid mow the lawn for some pocket change. This is more likely to yield desired results of keeping your father safe. The same tactic can be used for your mother or other relatives with dementia.
For some patients, to avoid reminders related to dementia, it may be beneficial to have physical reminders such as a memory box where pictures of their loved ones, friends, and family are placed, with names written on each photo. Assistive technologies may be useful in some situations. For instance, an electronic pill box that reminds patients to take their tablets may become necessary.
In some situations, family members may themselves be dealing with medical conditions and may find it difficult to manage activities of daily life. This could trigger them to remind their loved ones about their dementia diagnosis. Such scenarios need to be discussed with the medical care team professionals such as social workers to ensure that enough support is available for both patient and their families.
Disclosing the diagnosis of dementia to the patient and their families need to follow the principles of respect, confidentiality, and patient autonomy. Medical professionals can support patients and their families as they process the diagnosis and reorganize their lives. Later as the disease progresses, instead of constantly reminding their loved ones of the diagnosis, family members can use various strategies to keep them safe.