The Right to Be Heard

Posted on August 02, 2017 by Anne Ellett

The Dementia Action Alliance (DAA) conference last month in Atlanta was such a breath of fresh air! Like most professional conferences, there was a great exchange of ideas and an abundance of experts discussing their research. The difference at this conference was that many of the experts were people living with dementia (PLWD). The richness of their experiences and ideas was insightful and reminded me that the PLWD is the expert here.

If I were to sum up those two and half days of conference sessions, I would say the theme was broadening the social debate. Are we in-tune with the rights of PLWD to be heard and to be included? Do we presume capacity first before we take away choice? There was significant conversation about the bio-medical model that highlights inabilities and losses and sets up boundaries for the sake of convenience, limiting choice. In care institutions, our discussions focus on “What’s the risk of allowing this?” rather than “What’s the risk if we don’t do this?” Our emphasis on safety and convenience can downplay the rights of PLWD to be able to live a full life.

The conference started and ended with a panel of PLWD sharing their experiences. Their combined voices were strong and the theme was on living with dementia. Some of the required elements for living a full life with dementia included maintaining relationships, opportunities for continuation of normalcy, and personal autonomy. An experience frequently shared by PLWD was the reaction they received from their friends, business partners and medical personnel when their diagnosis of dementia became known. Friends stopped visiting, business partners assumed incapacity and medical personnel didn’t offer hope or rehabilitation. Do we provide the necessities for care but not for living?

Let’s take a moment to stop and think about our own relationships with PLWD – can we do better? I recommend the DAA website to view valuable resources.


If you work in Assisted Living or LTC and
want to make your dementia care program even better,
or if you need assistance in planning space
in your upcoming development for memory care,
contact me to set up an appointment. 

Have a great day!

Anne Ellett, N.P., M.S.N.                                                                                           
949 933-6201

Posted in daa, dementia action alliance, people living with dementia, plwd