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Putting the Person First: Lessons in Caring for People with Dementia

In 1995, an artist named William Utermohlen was diagnosed with Alzheimer’s disease. He chronicled his experience living with dementia in self-portraits to express what was happening to him. As the disease progressed, his portraits became more abstract, and his final drawings were of distorted facial images with missing eyes. These images communicate the depth of confusion, fear, and loss of self and personhood Mr. Utermohlen experienced. According to the Centers for Disease Control and Prevention (CDC), almost 50 percent of the population living in nursing homes has some form of dementia. This statistic is not expected to decline, as the large baby boomer population is coming into the time of life when the risk for dementia increases significantly. Skilled nursing facilities (SNFs) and other post-acute care settings confront many challenges when caring for people with this complex disease, but the core tenet of care, which all settings should uphold, is to honor the person and their abilities while minimizing the person’s deficits.

It is essential to acknowledge there is a fundamental difference in viewing a resident as a person who also has dementia versus seeing a person as a “dementia resident.” The latter suggests the caregiver views the person as a disease first and foremost. While there are often medical complexities and clinical risks that accompany dementia, the person and not the disease is who is being cared for.

Undermining Personhood

In his book Dementia Reconsidered: The Person Comes First, Tom Kitwood classified behaviors and actions that caregivers employ, often without awareness or malicious intent, that depersonalize the individual. A description and examples of how those are actualized in the SNF are as follows:

  • Disempowerment – Not allowing the person to use the abilities they have.

o   Staff complete activities of daily living (ADLs) instead of enabling the resident to do them.

  • Infantilization – Treating the person as a child rather than an adult.

o   Staff talk down to the resident as if they are a child.

  • Labeling – Using dementia as the main premise in how to interact with the person.

o   Staff refer to a resident as a dementia resident or a feeder in the dining room.

  • Outpacing – Providing information or choices too rapidly.

o   Staff finish sentences or do not allow enough time for a resident to respond to a question.

  • Ignoring – Going on with business or interactions as if the person is not there.

o   While giving care, staff ignore a resident and engage in conversation with others.

  • Objectification – Treating the person as if they were simply an object and not a person.

o   Staff pull back covers and begin peri care without warning.

The ramifications of these behaviors are not as explicit as, for example, those of a nurse who is not vigilant about following the five rights of administering medications. A medication error can have an obvious and acute effect, but undermining personhood is insidious because the dementia itself can mask the harm done by even the most subtle but consistent behaviors that take something away from the individual. Once caregivers become aware of these harmful behaviors, they can begin replacing them with ones that meet the needs of people who have dementia.

Psychological Needs of People with Dementia

People who have dementia have the same psychological needs as others; however, the impairments dementia causes create a profound vulnerability. Because of this vulnerability, these people’s psychological needs are more prominent. As cognitive impairment worsens, these needs may intensify. Kitwood identifies five overlapping needs that  dementia affects. Because these needs are interrelated, fulfilling one need is dependent upon fulfilling the others. These needs are:

  • Attachment – Bonds between people help individuals develop a sense of security and safety. As dementia progresses, the person often feels anxious and uncertain. Thus, patients need close attachments to reinforce that they are bonded to others and are safe.
  • Inclusion – Humans are social beings and need to actively engage with others. The person with dementia needs to remain part of the group and know they still belong.
  • Occupation – When a person is occupied, they are doing something for work or pleasure that has meaning to them. Occupation supports a healthy self-esteem and purpose. When the effects of dementia make occupation more difficult, self-esteem wanes, and the person is left trying to find purpose. However, a person with dementia still needs that sense of meaning and purpose to be fulfilled.
  • Identity – A person’s life story that connects their past and present and that is recognized by others and the person him- or herself gives that person his or her identity. Dementia can rob a person of remembering their story and the people in it. A person with dementia needs to be reminded of that identity.
  • Comfort – A sense of warmth, closeness, intimacy, and calmness often emerges when with others. Comfort brings people strength, and this strength and reassurance is needed when facing all that dementia can erode in a person’s life.

Kitwood theorized that at the center of all these overlapping needs is love. A person still needs to experience the things, people, and roles that they loved before they had dementia.

Positive Person Work

“Dementia does not define who the person is.” This statement does not disregard or undermine the chronic and progressive deterioration the person experiences, but it does put the person first and helps the caregiver plan care that maximizes the resident’s current abilities while honoring their wishes and preferences. To accomplish this, Kitwood coined the term Positive Person Work (PPW). PPW refers to caregiver behaviors and actions that, when deployed, preserve personhood and meet the psychological needs of the person with dementia. Some examples are:

  • Recognition – When another person acknowledges the individual as a unique person. While this sounds simple, the power of being recognized as an individual person cannot be overstated.

o   Staff look at the resident at eye level and call him or her by name.

  • Collaboration – Two or more people are working together to accomplish a task.

o   Staff and a resident work together to complete morning grooming with the staff giving verbal cues along with visual cues that indicate to the resident how to brush their teeth.

  • Facilitation – This is closely related to collaboration and enables a person to accomplish what they would otherwise not be able to do. As the dementia progresses, facilitation becomes more important. The person with dementia might communicate only subtle gestures or other indicators, so the caregiver must be very sensitive to this and help the person complete the task they desired to do.

o   Staff know when a resident has a need based off behavior that others less familiar with them would not be able to interpret. Staff are then able to assist the resident to meet this need.

  • Validation – Use of empathy to acknowledge that what a person is going through is their truth.

o   Staff avoid attempts to reorient a resident who is looking for her children she believes she should be taking care of. Instead, the staff have empathy for the fear the resident is experiencing as a mother and talk with her about her children and how important they are to her.

  • Celebration – This is the expression of happiness for a special event but also for those moments in life that are joyful and make one feel like celebrating. When a person has dementia, the sorrow they feel can be overwhelming. Celebration revitalizes the soul and helps dissolve the barriers between the caregiver and the resident so all parties can just experience shared happiness as people.

o   Staff share their joy and happiness with residents in unscripted moments that are authentic, such as sharing accomplishments of their children or the excitement of new adventures.

PPW sounds simple, but the reality is that there are engrained behaviors in our culture that reinforce undermining personhood, Furthermore, institutional barriers related to a lack of resources, including time and labor, make PPW difficult to implement. Despite these very real barriers, the effort is worth the reward. Leaders can start modeling PPW and commit themselves to putting the person first.

Source: Kitwood, T. (2019). Dementia reconsidered: The person comes first (2nd ed.). Open University Press. (Original work published 1997)

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