Is It Too Cruel To Tell Parents That They Have Alzheimer’s?

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Alzheimer’s disease is a debilitating condition that affects millions of people worldwide. It is a progressive disease that slowly destroys memory, thinking skills, and the ability to carry out simple tasks. It is a difficult diagnosis to hear, not just for the patient, but for their loved ones as well. It can be emotionally draining, and it is not always easy to know what the right thing to do is.
One of the most significant challenges faced by families and caregivers is whether or not to tell a person with Alzheimer’s disease about their diagnosis. On one hand, it is their right to know, and it may bring a sense of relief to the person who has suspected that something is wrong. On the other hand, some doctors and caregivers may not want to disclose the diagnosis because they believe it may cause undue emotional stress, hopelessness, or confusion.
So, should you tell your loved one about their Alzheimer’s diagnosis? In this article, we will explore both sides of the debate.
 

 

Why Some May Not Inform a Loved One About Their Diagnosis

Emotional Stress

Doctors and caregivers who are hesitant to inform a loved one of their Alzheimer’s diagnosis may do so for a variety of reasons. One of the most common reasons is that they believe it may cause undue emotional stress. Knowing that they have Alzheimer’s disease may cause a person to feel hopeless or overwhelmed, and some may not want to burden their family or friends with their diagnosis

Causing Confusion

Another reason why some caregivers may not want to disclose the diagnosis is that they believe it may cause confusion. Alzheimer’s disease is a complex condition, and many people may not understand what it means or how it will affect them. Some caregivers may worry that if they tell their loved one about their diagnosis, it may cause them to become more anxious or depressed.

Makes no difference at all

Another reason why some caregivers may not want to disclose the diagnosis is that they believe it may make no difference at all. They may feel that there is no cure for Alzheimer’s disease, and that the diagnosis will not change anything. Some caregivers may also believe that their loved one will forget that they have Alzheimer’s disease, and that it is not worth the emotional turmoil that disclosing the diagnosis may cause.

Reasons to Tell a Loved One About Their Alzheimer's Diagnosis

The Right Thing To Do

While there are several reasons why some caregivers may not want to disclose the diagnosis, there are also several reasons why it is important to do so. First and foremost, it is the right thing to do. Your loved one has a right to know about their condition, and keeping it from them may be seen as dishonest or even unethical.

Bring a sense of relief

Another reason to tell your loved one about their Alzheimer’s diagnosis is that it may bring a sense of relief. Many people with Alzheimer’s disease have suspected that something is wrong, and knowing the cause of their symptoms may bring them some peace of mind.

Planning for the future

Telling your loved one about their Alzheimer’s diagnosis may also allow them to start planning for the future. This may include making advanced care planning documents, identifying family or professional caregivers, or finding community resources such as local memory care and adult day centers.

How to Talk with Your Loved One About Their Diagnosis

If you decide to tell your loved one about their Alzheimer’s diagnosis, it is important to do so in a sensitive and supportive manner. Here are some tips for starting the conversation:
  • Plan specific ways to start the conversation.
Use these conversation starters:
  •  I’ve been thinking through my long-term care plans lately, and I was wondering if you have any advanced planning tips for me.
  •  I was wondering if you’ve noticed the same changes in your behaviour that I’ve noticed.
  •  Would you want to know if I noticed any concerning changes in your behaviour?
  •  
  • Ensure that the setting is quiet and without competing noise and distractions.
  • Speak slowly and directly to the person.
  • Give one message at a time.
  • Allow time for the person to absorb the information and form questions. Information may need to be added later.
  • Ensure that someone (a doctor) is available to support the person after being told about the diagnosis.

What information to share:

As a general guideline, a number of things will need to be explained: 
  • An explanation as to why the symptoms are occurring.
  • A discussion of the particular form of dementia in terms that are appropriate to the person’s level of understanding.
  • Any possible treatment for symptoms.
  • The specialised services and support programs that are available for people with dementia.

References

https://www.nia.nih.gov/health/what-alzheimers-disease

https://www.alz.org/alzheimers-dementia/facts-figures

https://www.brightfocus.org/alzheimers/article/informing-your-loved-one-about-their-alzheimers-diagnosis

https://www.dementia.org.au/about-dementia-and-memory-loss/how-can-i-find-out-more/informing-the-person-with-dementia

https://www.alzheimers.net/how-to-talk-with-a-parent-about-dementia-symptoms

Have you had a tough conversation with a parent about dementia symptoms?

Please share your stories and tips with us in the comments below.

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