Dr. Al Power, a leading advocate for those living with dementia, recently wrote a 4-part blog series called The Hidden Restraint. This series discusses the limitations found in many care systems for those living with dementing illnesses and challenges eldercare givers to evaluate where improvements can be made.
Recently, Johanna Wigg, PhD, founder of The Vicarage by the Sea, and a passionate advocate herself sat down to share her thoughts regarding the philosophy behind The Hidden Restraint and how it relates to her memory care home.
Imagine if we considered locked doors in memory care wards as restraints.
Al Power discusses the challenges of creating security for those living with dementia. To create a setting that promotes unlocked doors for those living with dementia who may wander, a culture must exist to support such an undertaking.
Many different factors and agendas drive culture. Reflecting on Thomas Kitwood’s work about the problematic cultures found within larger dementia care institutional settings, he refers to the challenge as the “malignant social psychology” of the culture. In essence, he describes how a culture that contains certain behaviors and traits can adversely impact or erode the personhood of a care receiver. An example of this “malignant behavior” is the locked door and the belief that it provides safety and well-being for those behind the doors.
At the center of an empowered culture is validation of the personhood of each individual cared for within the setting. The personhood includes items Power lays out in his series, including emotional and “psychological security which includes such attributes as familiarity, trust, respect, dignity, privacy and balance.”
The Vicarage prides itself on supporting a culture with unlocked doors. From day one, The Vicarage has philosophically honored the basic human need for movement and exploration of the natural world.
Not all those who wander are lost.
Potential for change is possible when those living with dementia are seen first as human beings with capacity. In a culture that emphasizes the power of medicine, this is profoundly challenging. Medicalization permeates our lives from birth through death. Resisting the stigma and limitation of disease labeling requires a culture which will recognize one’s humanity before any label of disease.
The Vicarage culture provides care that focuses on the person first, and the challenges of the disease on their personhood second. Care providers are meeting the individual as a person and offering support that is specific to their needs, not orders from the medical community. The daily life of the individual is recognized for its normality of human experience, such as the need for nourishment, appreciation of beauty, and a draw to the outdoors and nature. The Vicarage culture honors the wandering impulse.
Unlocking the door affirms and enables everyone’s basic human right to move freely.
Power argues, “Most of the distress and desire to leave that we see is not so much a function of the brain disease as it is our inability to create an environment that meets peoples needs and supports their well-being.” By normalizing the experience of dementia, the culture of The Vicarage lessens the potential for stigmatizing experiences for those living with dementing illnesses.
The need to transition individuals into different settings, to remove “abnormal” behaviors and expressions of the illness are unnecessary. Therefore the culture accommodates individuals at varying levels of disease progression, with unique manifestations of behavior and encourages cohabitation without fear or stigmatization.
This desegregation of the culture is unique, but offers many benefits. By providing cohabitation for those living with varying levels of ability, opportunity exists in the culture for those who are more capable to care for and support those who are in greater need. There is purpose, meaning and satisfaction in such normal relationships of support.
In addition, relationships between peers are not in danger of disruption because of changes in ability and need, as happens regularly in segregated, long-term care settings. The Vicarage culture encourages relations of depth and emotion among peers and care providers. These relationships blossom in the culture and remain until death.
This leads to another unique aspect of a desegregated dementia culture. While stigmatization of those living with cognitive challenge is significant in our society, the fear of end of life also permeates our social fabric. The culture of The Vicarage embraces the humanity of its inhabitants as well as honoring a natural ending to life. By committing to care from early stages through the end of life, no piece of the human experience is isolated or shunned. A culture that witnesses the experience of the entire life process challenges the fear of the disease.
“All-or-none thinking” and “surplus safety” make it difficult for organizations to visualize a pathway to unlocking doors.
The Vicarage agrees with Power and Thomas that a risk free environment is not achievable. From day one, The Vicarage culture evaluated risk to achieve “meaningful existence” for the residents. As in life, risk is negotiated daily for each individual and the benefits garnered from such risk are obvious and appreciated.
Because of unlocked doors, The Vicarage culture may be perceived a higher risk than some settings. Yet, the benefits experienced by residents on a daily basis include normalization of outdoor engagement with nature, physical activity, reduction in anxiety without pharmacological restraint, and honoring personhood and a desire to move. The safety of our residents is ensured with an exceptional staff to resident ratio which permits staff members to easily accompany any resident who wishes to “wander” outdoors. We have been safely providing this enriched culture and person-centered care for nearly 20 years and are proud to be pioneers in improving dementia care in Maine and the United States.