Caregivers, geriatric professionals, physicians, researchers, and loved ones of seniors with dementia have long been asking the same question: "Should you tell dementia patients the truth?" Dementia presents a unique situation in which the truth may repeatedly cause severe distress in older adults. Moments of awareness of their memory loss and forgetfulness can spur extreme anxiety in dementia patients. It's in a caregiver's best interest to minimize anxiety and stress in a dementia patient to maintain a high quality of life for as long as possible.
In the debate over whether we should tell dementia patients the truth, several factors are relevant. Here, we'll cover past and current dementia treatment practices, the impact of telling a cognitively impaired senior the truth, and effective alternatives.
Previously, dementia treatment included the patient from strategizing and decision-making. Physicians and loved ones would take on the responsibility, leaving seniors with dementia largely, if not completely, uninformed about their own condition. This pattern is changing, with researchers and geriatric innovators considering the value of informing a dementia patient about their condition. This shift in dementia treatment methodology may be traced back to President Ronald Regan disclosing his Alzheimer's diagnosis to the public in 1994 (Nursing Times).
Caregivers and loved ones may choose to withhold certain information from seniors with dementia to prevent distress. These decisions are made with the dementia patient's health and wellness in mind, but it's important to balance the value of the information with the potential negative outcome of disclosing it. In omitting some or all of the truth, caregivers may be able to avoid anxiety attacks, agitation, and intense distress.
At the other end of the spectrum in this debate, we must consider the senior's potential desire to understand their condition. It's reasonable to think that in knowing about their condition, seniors may feel more in control of their situation. The benefit of disclosing information about their case of dementia has largely been determined by the patient's degree of cognitive impairment. 38% of consultants will almost always inform a patient with mild dementia of their condition, while only 13% of consultants will inform those with moderate dementia, and only 6% will inform those with severe dementia.
In a study from the Western Journal of Medicine, most dementia patients expressed the desire to know more about their diagnoses. Some also wanted to learn more about the potential for improvement and the cause of their disorder. In this study, it's noted that the subjects are cognitively impaired and may, therefore, have already been given information about their condition, but are unable to retain it. The study also mentions that telling the truth to dementia patients can be "deleterious, mischievous, and devastating" (Marzanski).
The level of cognitive impairment in a dementia patient should be one of the first considerations that you make in deciding if you should tell the truth to a dementia patient. Seniors with mild dementia may be able to process the truth in a constructive manner; those who are more severely impaired may experience extreme distress in knowing the truth. This determination is key as we move on to the potential results of disclosing the truth to a dementia patient.
Dementia patients are experiencing a different version of reality from people with healthy brain function. In the dementia patient's world, short-term memory is compromised. As a result, these seniors fall back on memories from their pasts. By living in their past memories, dementia patients can feel comfortable and secure, whereas in new situations, they feel uncertain.
When a senior with dementia can't remember a loved one's face or doesn't recognize their own home, it can cause severe agitation and fear. Similarly, when a senior with dementia perceive their cognitive shortcomings, anxiety often ensues.
Distress manifests itself differently depending on the dementia patient. Here are a few examples of behaviors that may result from stress in a senior with dementia:
When a caregiver or loved one determines that the truth would cause a greater degree of distress than value to a senior, they may take one of the following tactics:
If a dementia patient inquires about their condition, the wellbeing of a loved one that's passed, or another tricky topic, one can shift the conversation to avoid discussing potentially upsetting information. For example, instead of telling the senior outright about the death of a spouse, friend, or family member, you may ask the senior reminisce about that person, or change the topic to a specific memory of the person. This strategy enables the senior to reflect on the person and express their feelings toward them without the need to process distressing information. Another diversion tactic would be to suggest a new activity or segue into an entirely new topic of conversation.
While a lie in any form isn't ideal in your communications with a dementia patient, it may be the least upsetting option when difficult topics arise. For example, if the senior asks about a loved one that's passed away, you may say that the person is happy, safe, or doing well. This tactic is often adopted when a senior repeatedly ask about the wellbeing of a late loved one and, if the truth is told, has to experience the loss repeatedly.
Therapeutic fibbing is a tactic adopted by people close to seniors with dementia to reduce distress. It's widely recommended by health professionals and viewed as a healthy option in dementia management. Studies have shown that therapeutic fibbing can reduce anxiety in both caregivers and dementia patients by omitting the need to confront upsetting information.
Therapeutic fibbing is controversial and goes against the moral principle of honesty. However, when the reduced cognitive ability of dementia patients is taken into account, the benefits of therapeutic fibbing often outweigh the cons. This practice may be described as the caregiver entering into the dementia patient's world, which may even strengthen the bond between a senior and their caregiver.
The question of whether you should tell the truth to a dementia patient is complex and multi-faceted. The combination of ethical controversy and concerns over the emotional wellbeing of the patient makes for a difficult dilemma in dementia care. While there is no universally accepted answer, medical professionals, caregivers, and loved ones can work together to develop a solution to fit the individual needs of the senior.
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Biernacki, Claire. "Should Dementia Patients Be Informed about Their Diagnosis?" Nursing Times, Nursing Times, 1 Dec. 2003, www.nursingtimes.net/clinical-archive/neurology/should-dementia-patients-be-informed-about-their-diagnosis/199802.article.
"Dementia Support: Understanding and Responding to Distressed Behaviour." Nidirect, Nidirect, 25 July 2018, www.nidirect.gov.uk/articles/dementia-support-understanding-and-responding-distressed-behaviour.
Marzanski, M. "On telling the truth to patients with dementia." The Western journal of medicine vol. 173,5 (2000): 318-23. doi:10.1136/ewjm.173.5.318
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"Telling the Truth to People with Dementia." Alzheimer's Society, Alzheimer's Society, www.alzheimers.org.uk/get-support/daily-living/making-decisions-telling-truth.
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