What if you were the person with dementia?
By Monica Heltemes
You have likely heard this term used in relation to Alzheimer’s disease. As the number of cases of dementia grows in the country and caregivers seek information from multiple channels (e.g. support groups, internet, books), it is a good time to analyze taglines that may be used in these channels, such as “The Long Goodbye”.
What does this phrase intend to describe? What image does it portray? Is it a descriptive term that
is helpful or is it counterproductive?
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Through discussion with professionals who serve persons with dementia and family members of persons with dementia, I have heard numerous answers to these questions. Here is a summary of these discussions, which offers some good food for thought.
“The Long Goodbye” was the title of a book authored by Patty Davis, daughter of former president Ronald Reagan. In the book, she describes the process of losing her father to Alzheimer’s disease as saying goodbye in stages. She wrote, “Alzheimer’s disease snips away at the threads, a slow unraveling, a steady retreat; as a witness all you can do is watch, cry, and whisper a soft stream of goodbyes” (Davis, 2004).
Family members are emotionally impacted the most, as they see the person with dementia decline. They describe witnessing their loved one withdrawing, increasingly so over time. One person said it was like the family member with dementia had become a ‘stranger’. For many of them, the physical death is described as the second death, with the first death being when the person they formerly knew has ‘disappeared’. For most family members of the person with dementia I communicated with, the phrase “The Long Goodbye” was very fitting.
However, a few family members did point out that “The Long Goodbye” is a term describing the pain and grief of the caregiver – but not necessarily a phrase that applies directly to the person with dementia. That leads us to another perspective – those who see the phrase “The Long Goodbye” as a tagline that ends up labeling the person with dementia, with negative consequences.
This perspective is mostly held by those less directly emotionally impacted by the dementia, the professionals who work with persons with dementia. They offer a different perspective that is more based on logic than on emotion.
Persons with this perspective say the phrase “The Long Goodbye” creates a stigma. It tells family, friends, and the public at large that the person with dementia eventually is no longer really there, that the person is no longer whole. They say it can lead to less visits from friends, maybe even family, who cannot relate to the person changed from dementia, who is ‘gone’.
They feel the phrase dehumanizes the person with dementia, focusing on the characteristics of the person that have faded away rather than noticing the abilities that still do remain.
Instead of the “The Long Goodbye”, they suggest alternatives such as “Living in the Moment” or “Hello Again”. They feel the alternatives portray a different image that can allow family and friends to recognize, appreciate, and inspire moments of joy in the person with dementia, allowing glimmers of the spirit of the person to shine through.
So instead of focusing all the energy on saying goodbye, consider shifting the energy to saying hello to the person, despite the changes displayed.
These are the different perspectives offered by the family and professional caregivers of person with dementia. Ironically, as I was preparing to write this article, I came upon a video of retired psychiatrist, Dr. Richard Taylor, who was diagnosed with dementia at the age of 58, speaking about his perspective as a person living with dementia (http://tinyurl.com/3qyhloh). His commentary included his perspective on “The Long Goodbye”.
Richard talked about “The Long Goodbye” as being a myth. He says phrases such as these “drain the person’s humanity”, “robs the soul”, and labels the person with dementia, just as a big letter ‘A’ on the forehead would.
Richard calls for a shift in the image of Alzheimer’s disease from that of the family member’s emotional perspective to that of the person with dementia. This person-centered care approach, per Richard, will enable the person with dementia, not disable, and will recognize the person as whole, a human with the same needs as you and I.
So where do these discussions lead us to for the future?
You likely have your opinions and stories to tell. But as you form your own opinions, consider this. The cases of dementia are growing. The time will come when most people will be touched by dementia, whether a family member, friend, neighbor, etc. As when any illness strikes, a diagnosis of dementia is a time when the love and support of family, friends, and others is needed.
If “The Long Goodbye” portrays to these people that the person with dementia has ‘checked out’ of this world even before they physically succumb, that love and support will be prematurely lost.
What if you were the person with dementia?
MindStart -- Activities for Persons with Memory Loss to learn more.
Davis, P.D. (1994). The Long Goodbye. New York: Alfred A. Knopf.
Oklahoma Geriatric Education Center Webinar Series. Dr. Richard Taylor. What It’s Like to Live with Alzheimer’s Disease. Webinar retrieved from http://tinyurl.com/3qyhloh.
Original content Monica Heltemes, the Alzheimer's Reading Room