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The Fear of a Dementia Diagnosis

Updated: Mar 9, 2022

The term or label “Alzheimer’s” or “Dementia” frightens us. Once someone is labeled with “dementia” the person themselves and others begin to relate to this person differently - even if only yesterday, this same person was still diagnosed with normal age-related memory loss, mild cognitive decline, or mild forgetfulness. This is due to the stigma associated with these labels and it is up to us to change this mindset.

What to Do After a Dementia Diagnosis

Usually when someone receives a diagnosis of dementia, it does not come as a complete surprise. Either the person themselves or the family have noticed that there has been confusion or memory issues for some time. An individual is diagnosed with dementia when the confusion and/or memory loss affects their day to day life.

For some individuals, a diagnosis may even be a relief for they now have a name for what is wrong with them.

If, as a family member, you are feeling overwhelmed - my suggestion is to first sit down and take a breath. Yes, it is sad and scary to get a dementia diagnosis, but don't let this affect your relationship with your loved one. Your loved one is the same person they were before this diagnosis, so you don't need to rush and make changes in both of your lives right this minute.

Everyone is an individual and everyone's progression is different. There is no need to paint the worst scenario in your mind right now.

  • Take your time to adjust to all of this.

  • Take your time to read and understand as much as you can from a variety of sources.

  • Take your time and listen to what people who are living with dementia have to say.

  • Take your time to learn that there are people with dementia who are living fulfilling lives.

The Many Faces of Dementia

People are individuals, yet sadly, once someone is diagnosed with dementia, they are all lumped together under this one label and most of society expects all of these people to go down the same path of deterioration till death.

This is far from the truth. There are many different types of dementia, and everyone’s condition is unique. You can learn more about the different types of dementia in my previous blog: Break the Dementia Mold

Wendy Mitchel is my newest hero. She was diagnosed with young on-set dementia at 58 and has learned, as she has put it, to “outwit it.” She has recently written her second book: What I Wish People Knew About Dementia which is like a manual for how to live with dementia.

It’s not yet available on Kindle or Audio where I live, but I have been reading the rave reviews and think this is a must read for anyone living with dementia and for their family members.

I have been following Wendy on the internet and she is trying to change the mindset that a diagnosis of dementia is not the end:

All too often a dementia diagnosis is viewed as an end point rather than the beginning of a different way of living.”

Listen to this amazing woman in this clip. She tells how she was a total technophobe before dementia and now she has embraced technology in order to be able to continue living on her own!

This is so empowering. If a person can look at dementia as a change that one needs to adjust to, like any challenge in life, than they can feel in control of their life.

Communication Is the Key

One of the most basic principles of Validation is:

“Painful feelings that are expressed, acknowledged and validated by a trusted listener will diminish.

Painful feelings that are ignored or suppressed will gain in strength.”

According to Naomi Feil’s theory, when older people living with dementia are allowed to express themselves, they will not withdraw and deteriorate to later stages.

Last week was the Validation First World Congress which you can watch on-line.

One of the speakers, Hedwig Neu (at 18:30 of this clip)

is the head of Diakonissen Speyer, which is a large corporation with 6000 employees that provides care for the elderly in Germany. It also provides Validation training and implementation.

Today Validation has been taught and implemented in 8 of their care homes for the elderly, which means the staff, family members and volunteers validate the residents. Hedwig explained that since implementation of Validation, almost none of the residents have withdrawn and deteriorated to the non-verbal stages.

Think about this for a moment. By talking to the residents and allowing them to express their feelings, these residents remained verbal until their death!

Hedwig also noted, that during the pandemic, when residents were isolated and were not visited as often by Validation workers, several did withdraw and became non-verbal.

Dementia Communication Between Couples

Lack of Communication between couples is often the reason for disputes and misunderstandings. Imagine if this lack of communication happens when one of the pair has dementia.

The situation is difficult for both the person who must learn to deal with living with dementia and the spouse who has to learn how to help them. It is important to open up communication as early as possible, rather than pretend that nothing is wrong. Both need to understand the difficulties each person is dealing with and learn how they can help each other.

I recently discovered a course offered by Dementia Singapore called Voices for Hope, which teaches people with dementia and their spouses or caregivers to communicate. I thought this idea was brilliant and then I was totally blown away when they shared letters written between a man who is living with dementia and his wife. Below is a sample of the text, but go see all text of these letters here. It was so heartwarming to read how this couple is able to communicate with each other.

Evon: My love, When you were first diagnosed, I was extremely angry, sad, and worried. Then, as you know, I switched gears and told myself, “We will go through this together” Peter: "I began to get angry with myself and those around me. I became ugly and not myself. I made excuses for my behavior”

After receiving a diagnosis of dementia, there are many new things to learn, but you have time to learn. Begin first by breathing, by understanding that a diagnosis of dementia is a time of change, and not a bleak end.

Learn now how to communicate, be open and express feelings, both those of the person who has dementia and the family member who is the caregiver. In this way you can continue to keep communication open which is so important for the wellbeing of both. ----

If there is a topic you would like us to cover, please tell us and please let us know if you are out there by subscribing to our blog or commenting below. Thank you.

Check out our brand new website and free Validation webinars:

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