“About us — without us” feels like manipulation.
Professionals (especially medical professionals) need E.M.T.
… for direct interaction with Persons With Dementia:
E= education/skills;
M= motivation/understanding;
T= time.
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Tru here. My first neurologist was splendid … but then retired. The next year, the second neurologist gave me conclusions but not raw scores after i took their neuro-psych. I suspect they thought withholding scores would force me to their office for all further visits, in order to provide comparison over time — WRONG! Never returned so went without comparison. Took two years but found another neurologist. Traveled 3.5hrs each way to get to him. Quit my third neurology specialist on the second visit. i gave him two visits because he would not slow down to talk WITH me on first visit. But twice during second visit, i asked him to speak slower and pause between change of subject so that i could catch up with his thoughts. Instead, he gave up on me, turned to my husband and spoke only with him for remainder of appointment. So i fired his behind ! Took a year to find another specialist. So far, he is a jewel; communicates directly and openly, showing me respect and treating me as a partner in my own care. Dont know how it will develop with time, but starting out well at least.
Much of our interactions with doctors and professionals leave persons with dementia feeling left out from our own care team. Without DIRECT communication, we are not allowed to be a partner, which does not build our cooperation in the process.
Many of my friends are no longer willing to see the doctor. Why should we, if the doctor will not interact directly with the patient?
E.M.T.
E= Education for direct communication involves direct contact with Persons With Dementia during education process; with their first-person feelings and experiences …
in order to build communication skills that successfully work around cognitive and sensory dementia symptoms. See links at bottom of page.
M= Motivation builds understanding for WHY professional should show respect for our humanity and make us a partner in our own care, by interacting directly with Person With Dementia.
T= Making TIME available for direct communication. Professional might ask person to arrive early if they would like, and supply paper and pen to write down most pressing concerns they wish to share. That gives extra time for person to find the words, because extra time is almost always required to work around dementia symptoms. Another example might be to try using visuals when words don’t work. My husband uses visuals for any numerical concept, geographical or distance concept, and descriptions.
There are wonderful exceptions. My General Practitioner is a wonderful exception. But searched for neurology specialist quite a while before i found someone willing to be completely open on subject, and speak directly with me. This is too important of a specialty to settle for second-hand communication !
Reviewed lots of dementia research paperwork past few days for Dementia Action Alliance project on subject of “care”, and what hit me was that it felt like the research was entirely “about us — without us”, by medical professionals. Felt like persons with dementia were merely THINGS; subjects of study; no longer considered valuable thinking feeling beings … but merely objects ! Researchers were the valuable stakeholders, but patient was not valued at all — and not considered a stakeholder at all, so no “care” (or consideration) was shown to make them a partner in care. Made me angry, and my primary response to anger or grief is writing. So i wrote, and this is what came out.
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LINKS:
ECT Suggestions >> https://truthfulkindness.com/2014/12/12/suggestions-understand-audio-communication-dementia-symptoms/
Importance of >> https://truthfulkindness.com/2016/01/26/import-communication-pwd/
Category: Important/Communication: https://truthfulkindness.com/category/important/communication-important/
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