​Ten Things I Learned at the Dementia Action Alliance Conference

 At the end of June, I had the opportunity to experience the first ever North American Dementia Action Alliance Conference in Atlanta. This was an amazing event, the best and most moving dementia conference I have ever been to, and it scrambled my brain in the very best way.

  The conference organizers included persons with early-stage dementia in their planning. There were many speakers at the conference who also had dementia, who spoke movingly and clearly about horrendous experiences with diagnosis (example: essentially being told by the doctor to “get your affairs in order”, and just prepare to curl up and die) the stigma that accompanies the diagnosis, the despair the ensues, and the long climb back into hope, purpose and connection which now fills their lives.

 There were 30 persons who attended the conference who are currently living well with dementia, and doing amazing things.  Yes, they run on adrenaline in conference situations and there is another side to their lives that conference goers like me can only imagine, i.e. the utter exhaustion at the end of the day, the confusion that comes and goes, the losing one’s way in a large hotel, the forgetting a portion of what happened this morning. 
Here are 10 things I learned: 
1. While I am the Dimensions Coordinator for
   Ebenezer, a large and reputable organization
   which cares for older people, many of them with
   dementia, I am NOT a dementia expert. People
    who have dementia are the real dementia
    experts, and we all, including me, need to listen
   to them more.

2. People with  dementia are very smart,
    especially about dementia.  Having dementia is
    not to be confused with mental retardation. (I
    assumed that I understood that already, but it
    was only after hearing this panel of people who
    happened to have dementia and who were all
    brilliant, articulate and expressive did I really get
    it.)  People with dementia use their
    intelligence to compensate, to reach out to
    others, and to express their truth.

3. People with dementia do not appreciate the
     automatic assumption that they are
    “suffering” with dementia.  Yes, they may be
    struggling to stay connected to who they were,
    but they are not steeped in misery 24/7.  As one
    person very succinctly put it, “I have Alzheimer’s,
    but it doesn’t have me.”

4. We must change the lens with which we view
     dementia. Persons with dementia would prefer
    to be seen as “living with a chronic disability”
    rather than “dying from a fatal disease”.  We
    encourage people to give up when we frame it
    in the latter way.  People often have MANY years
    left once given a diagnosis.  A pronouncement
    of their “timeline” may not serve them well. No
    one has a crystal ball.  

5. People with dementia are creative and
     flexible.  Many have found ways to compensate
    for changes in their cognition; they use tools,
    routines, technology and strategies to support
    themselves.    

6. People with dementia are keenly aware of our
     response to them; they’re sensitive to the mood
    on our faces and the look in our eyes.  If we are
    kind and open, and willing to meet the person
    where they are at, that means the world to
    them.  If we only pity them, or turn away
    because we don’t know how to respond, that
    hurts.

7.  People with dementia have passion: passion
     to make a difference in the lives of others with
     dementia, passion to rise above the fog that
     sets in, passion to choose to LIVE, passion to
     mentor others with dementia (see
     Dementiamentors.org for more information).
​     Their passion fuels them to live their purpose. 
     They may find that purpose in creating art.  One
     participant at the conference spoke of losing
     her ability to speak early on in her dementia
     process.  For a time, she was suffering
     intensely.  She felt devastated, and without
     hope. A smart friend got her into a clay
     workshop and she started making pots. Now,
     her sense of purpose is fueled by making
     astoundingly elegant, museum-quality pots.
     And by the way, she has completely regained
     her ability to speak.

8. People with dementia are fierce advocates. 
    They are resilient.  They do get tired of course,
    partially because they spend a lot of energy
​making sure other people are comfortable with their illness.  People with dementia are ordinary people.  They do not want to disappear.  They try to forget about dementia so that it doesn’t define them. People with dementia want to live a life with a sense of normalcy, and to live fully, for as long as possible.  This includes the right to make mistakes once in a while.  Do people without dementia have the right to make some mistakes?   So, there’s a lot of food for thought here for those of us who care for people with dementia at any stage.  I have to wonder…What if every resident with dementia at Ebenezer had had the advantage, at the start  of his/her diagnosis, of experiencing the abundance of support, encouragement, mentoring and community that now exists for persons living with an early stage-diagnosis.  Might they be doing a whole lot better now?  I think they might.  But it is never too late to support people in finding a sense of purpose and meaning, and never too late to treat them with the compassion and respect they deserve.  It is with a renewed and profound sense of purpose that I will continue to learn about dementia from the real experts, and to advocate for them, all along the way.     
 
-Marysue Moses, Ebenezer Dimensions Coordinator, mmoses1@fairview.org