Medicare data has revealed that approximately 45% of personal physicians informed their patients that they had been diagnosed with Alzheimer’s disease. While every medical doctor understands the importance and benefit of being completely truthful with their patients, in this case, it seems they identified more compelling reasons NOT to share this information – that is, that for many early dementia and Alzheimer’s patients, hearing the diagnosis would prove overly traumatic or too confusing for certain individuals.
This may seem problematic to some. We live in an era where medical freedom and rights are front and center, as is informed consent. We believe that our information is ours to do with what we wish. but delving deeper into the Alzheimer’s dilemma reveals both pros and cons to informing a family member or loved one know they have been diagnosed with Alzheimer’s or any other type of dementia. Family members can disagree on how to handle this scenario, and it can make an already difficult situation even more challenging.
Benefits of Withholding the Alzheimer’s Diagnosis from the Patient
A family member might not inform their parent or loved one about their Alzheimer’s diagnosis for one of several reasons:
- They don’t want a sense of hopelessness or despair to set in.
- They wish to avoid undue emotional stress and trauma.
- They wish to prevent the loved one being afraid of becoming a “burden.”
Potential Benefits of Telling a Loved One About Their Prognosis
There are situations in which it may be beneficial to share the diagnosis with a family member, including:
- They wish to operate in complete honesty and not be deceptive. “They have the right to know.”
- The patient already suspects there is a problem, and knowing the truth would bring comfort as opposed to being in the dark.
- They want the person with Alzheimer’s to contribute to their own life plan for long-term care, as there is a sense of control in participating in their own future plans. This may include drafting advance care planning documents, choosing their own caregivers, and identifying and visiting community centers and facilities ahead of time.
All of these pros and cons are valid, and the right choice will vary based on each individual and their family dynamic. If you do choose to present your loved one with their complete diagnosis, take some time to plan how to explain the situation, and be ready with the emotional support they will need.
Supporting Your Newly Diagnosed Family Member
If dementia or Alzheimer’s has progressed before the official diagnosis, the individual may not be emotionally impacted when learning of their diagnosis – simply because they are too forgetful to retain the information or are no longer able to truly understand it. But in those scenarios where the diagnosis is being explained to someone who is currently capable of comprehension, keep these tips in mind:
- Ask their physician to be present to both explain the diagnosis and the available options for management and treatment.
- Develop an explanation that is aligned with your family member’s current level of understanding.
- Present a positive outlook. Support your family member by assuring them that you are going to be by their side through this illness.
- Choose terminology wisely. An alternative to the frightening “Alzheimer’s disease” or “dementia” labels might be “memory or cognitive issues.”
- Educate yourself to become an informed caregiver. You can start at the Alzheimer’s Association.
If you choose to become a caregiver for your loved one with Alzheimer’s, be sure to locate and take advantage of local support groups.
If you decide that memory care is the right choice for your loved one and your family, call My Care Finders. We are a professional organization that helps
