Dementia Action Alliance: A voice for persons with early stage dementia in their own words

I recently attended the Dementia Action Alliance (DAA) conference and found it to be the most moving and motivating event that I have attended in years.  While health care professionals are aware that there are over 200,000 individuals living with early stage dementia, our level of understanding of the experience of living with dementia cannot be expressed in words on a page, but only through the voices of those who live day-to-day with early stage dementia. 

As health care professionals, doctors, nurses, social workers, pharmacists, etc., our understanding of Alzheimer’s disease and dementia has been defined by the pictures of the past and our ongoing experience in long-term care.  Years ago, audiences at national and international conferences were presented a picture of dementia through a live panel discussion with a single person who was moderately to severely impaired, their caregiver, and a physician.  The person with dementia would, in some situations, attempt to join the discussion and it was a disturbing experience to have the caregiver and physician speak about them in their presence.  Sadly, that is often still the picture of the disease that as health care professionals we know. But what healthcare professionals need also to see and hear are those living with early stage dementia; how they are thriving and contributing, and how they adjust to life in new and creative ways.

At the time of diagnosis, people living with dementia who spoke at the DAA conference indicated they are offered little information or direction, and essentially no hope. When receiving a diagnosis of dementia, at best the discussion was primarily around getting their affairs in order, that nothing can be done, and that there is no cure.   How does a 48 or 52 year – old person with teenagers and children in college “get their affairs in order?” Where is the help and hope?

We heard was how quickly professionals, and people in general, “write-off” a person who is diagnosed with dementia.  Upon visits to doctors, clinics, or hospitals, any discussion about the disease, treatment or course of therapy is most often discussed with the caregiver, leaving the person with dementia out of the conversation as though they cannot understand or grasp the conversation.  “Talk to me, talk to me,” the folks living with the disease said over and over.  “I am here sitting right in front of you.  Doctor I hear you, I understand you, I am not gone.”  

Everyone at the conference, from presenters, attendees, the vendors and even contractors working the conference, were moved by the stories of those with early stage dementia, in their own words.  The speakers described the impact of the disease on their lives, their work and their families, and how it felt knowing the progressive nature of the disease and what the future would hold for them.  

When given the diagnosis, some of the participants initially admitted believing the only course was to simply give up on life.  However, all of them indicated how grateful they were to have found DAA which has given them life, a purpose, and an ability to make a difference in their own lives as well as the lives of others living with dementia. 

As health care professionals we think we know all there is to know about dementia, but we don’t and I am not sure we can.  To more accurately understand early stage dementia, and dementia in general, is to hear it from those who still have a voice, in their own words.  I urge you to engage with DAA, support their mission and attend their next conference – it will be life changing.

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