Consumer Education Changes the Game Where Care is Concerned

February 10, 2016
Laura Beck, The Eden Alternative

Holding-Hands (1)Yesterday, the Washington Post published an article entitled “Promise You’ll Never Put Me in a Nursing Home.” I agree with Dr. Bill’s Thomas’ assertion in this piece that having the right language for what we’re asking for is really the crux of the issue. What we typically react to is our fear of institutional care in general – not in terms of the building we live in, but rather the nature or quality of the care we experience. The truth is that care can feel “institutional” regardless of where we receive it. Care at home can feel equally institutional, if it is focused entirely on the trappings of the medical model.

Under most circumstances, the focus of care revolves mostly around the physical body. The emphasis may be on treatment and task-doing, rather than the needs of the human spirit or the quality of the relationships involved. The needs of the individual are sacrificed for efficiencies and productivity quotas. This is the institutional care that everyone fears.

Our job as agents of change is really to empower consumers to ask the right questions when seeking support for their care, wherever it’s delivered. In this market-driven economy, we know all too well that we vote with our dollar. Families prepared to articulate exactly what they desire when it comes to care are in a unique position to raise the bar of expectation. It’s our job to make sure they know that what they are asking for, beyond medical treatment, is a powerful sense of well-being. We need to feel well-known by those who care for us and to have the opportunity to develop meaningful connections with our care partners. We need to know that the care environment will genuinely support individualized care, our right to choose, our ongoing growth, and our sense of dignity, security, and purpose.

Recently, we at The Eden Alternative have had the pleasure to witness the power of consumer education in a national CMS funded grant project of ours. In Creating a Culture of Person-Directed Dementia Care, we’ve brought together teams of three from different nursing homes across the country for a learning experience called the Care Partner Workshop. These teams consist of a family member and two employees. They are learning to work together as care partner teams, each equally invested in understanding the tenets of person-directed care. Already, the family members are having an incredible impact on class conversations, feeling empowered by what they’ve learned. The bottom line is when “we don’t know what we don’t know” we can’t ask for what we want. These family members are showing us that education makes the difference. This is how we change the system.


3 Comments. Leave new

Laura really hits the nail on the head here. Education is so important and our care partner workshop is an under appreciated tool to get the job done. The more we engage and educate family members and the general public in the communities we serve, the better our chances of moving the bar higher for everyone and making person-directed care the only acceptable standard for care. Let’s get out there and teach those who “don’t know what they don’t know.”


As I cook dinner for the kids and my incredible mother in law sits and works on a puzzle with my 5 year old and paints my 8 year old’s nails, I know what she and I need- to be meaningully contributing to our home, to laugh together about stories she tells over and over again so my children can share them as easily as she does, to be dressed as she wishes each day and rise when she naturally rises.. And if she can’t sleep- to have a loving soul sip tea and share stories of hoosick falls news. All of these things can be supported in the right home, and should be supported in all homes. Even if it’s called a nursing home… The thing is, Eden training and my life In LTC taught me how to make dinner, share stories, and paint nails alongside people of all physical and intellectual abilities. And we will teach others. Thanks for pushing for more education applied in everyday life. Rebecca


Beautifully articulated, Laura. How do you educate the maseses? TV ads? Magazines, Internet? The book “Contented Dementia” persuaded me, but how many people read? Maybe a crazy idea, but a movie: remember driving Miss Daisy?


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