Dignity: "The quality of being worthy of esteem or respect"
According to Webster's dictionary dignity is defined as "the quality of being worthy of esteem or respect." What contributes to a person losing dignity when afflicted with Alzheimer's disease or a related dementia (ADRD)? What are the consequences of losing dignity? Let's discuss.
It is my belief that the key factor facilitating loss of dignity is the poor quality of the interactions between the person with ADRD and their care partners and/or family.
The person with ADRD becomes dependant upon the care partner to create a social interaction that facilitates a sense of worthiness and value. Unfortunately, the interactions throughout the day between the person with ADRD and those around them are often detrimental to their emotional well-being. The care partner communication and feedback is often riddled with negative responses and language and may be void of love, attention, and praise.
As ADRD advances the person begins to lose their "sense of self" or "personal identity," making them more dependant on others to validate who they are. Our "sense of self" includes those roles, attributes, behaviors, and associations that we consider most important about ourselves. The ability to connect with and use "sense of self" appears to be hindered for those with ADRD. The strong "self identify" foundation seems to shake and eventually crumble, making this person vulnerable to being defined in the moment by the social exchange. There appears to be some maintenance of this connection to personal attributes such as, if an individual was always a leader this role may show itself during an activity. But this "sense of self" is no longer strong enough to ignore the inferences of the negative interactions with others.
Examples of how an intact "sense of self" can protect against negative outcomes:
- A healthy "sense of self" helps a person to feel worthy of respect even if respect is not being given.
- A healthy "sense of self" enables a person to KNOW that they are lovable even if they are being ignored.
- A healthy "sense of self" helps this person to KNOW they are a person who has many talents and is a valued contributor in the world even though they are identified as "a wanderer" who "can't do anything anymore."
As stated previously, if the person with ADRD loses "sense of self" they are extremely vulnerable. Therefore, if the quality of the interactions between this person and their family, care partners, and community members is all negative, the person will not feel worthy of esteem or respect, thereby losing dignity.
"Identify theft" often occurs when a person has ADRD and moves into a long-term care community.
You know what I mean. The medical chart is bulging with medical information and there is one lonely page buried deep inside this chart called "social history." This disregard for who this person was and still is leads to "identify theft."
Identify theft seems to happen for two primary reasons:
- Instead of seeking to learn and honor the person's unique "life story," the new resident is asked to conform to the schedule, routines, and activities of the community—essentially being told to "blend in to the program."
- There is little emphasis on nurturing the soul as the medical model prioritizes medical issues such as skin condition, blood pressure, and weight while ignoring quality of life indicators such as feelings of success, worthiness, and love.
Taking away the person's unique identity contributes to the demise of the "sense of self" and loss of dignity.
What are the consequences of losing "sense of self" and dignity?
Depression and Anxiety
"Depression is associated with feelings of sadness, hopelessness, worthlessness, and despair; possible loss of interest and motivation, leading to social withdrawal; fatigue and loss of energy; and possible changes in eating and sleeping patterns. Younger children may reveal their depression as excessive irritability, agitation, and aggressiveness. Depression is importantly connected with sense of self because depressed people typically feel out of control, unable to positively influence important outcomes in their life. Depression may be associated with a 'sick role'—that is, 'I am a patient, I cannot help myself, I am in the care of others and have no control over my destiny'. . . . At times, disorders associated with an altered sense of self can result in the [person] becoming significantly depressed or anxious." 1
In the elderly with ADRD depression and anxiety can contribute to loss of function and active participation in activity which has dramatic detrimental impact on overall health such as:
- Development of contractures
- Weakness and falls
- Weight loss
- Wound development
I believe depression and anxiety are very much under-diagnosed in the ADRD population and these problems are not identified early enough. Two depression assessments I utilize on a routine basis are the GERIATRIC DEPRESSION SCALE (GDS) and the CORNELL DEPRESSION SCALE. The GDS is good for those who maintain verbal skills as this is a questionnaire. The Cornell is beneficial when the person can no longer verbally communicate as the assessment is primarily based on observation of behavior. I emphasize the need to administer a depression assessment as a part of the routine because we want to identify depression early. The same is true for anxiety. Identifying indicators of anxiety such as wringing of the hands, repeated questions, and pacing can lead to early intervention.
Other Negative Behaviors
If the person no longer feels worthy, in control of their own destiny, loved, and respected this can create negative behaviors such as striking out, use of profanity or yelling, and resisting care. The causative factor behind these negative behaviors may be "loss of dignity."
If the person with ADRD feels unimportant, lost, and misplaced they may "seek to go home." Remember the person is often not seeking the bricks and mortar of home but the feeling of home. Home is a place of dignity and respect.
Depression, anxiety, physical and verbal aggression, and elopement are all indicators of a person in a state of emotional ill-being. These problems often lead to disastrous outcomes for the person—such as injury, hospitalization, or death—and for health care, including rising costs due to use of psychotropic medications, costs to address injuries, staff turnover costs, and possible legal fees due to elopement or avoidable injuries. Therefore, the loss of dignity has far reaching negative impact for the person, the facility, and health care.
What Can We Do to Preserve Dignity and "Sense of Self"?
- "Love-on" the person—A focus on nurturing the soul and creating loving relationships among those in the community is key. This encompasses all the relationships the person has including their family relationships, relationship with care partners and friends, or other residents. Don't get caught up in the medical model which deprioritizes emotional well-being.
- Show acceptance and respect—Accept and celebrate who the person is today! Don't put unrealistic expectations upon this individual and don't identify him as "broken" or "unworthy." Dig deep inside to see if you ever unknowingly show disrespect such as ignoring this person as you have a side conversation with a colleague. Or, do you "assume" the person will be comfortable being naked in your presence during a shower BECAUSE they have ADRD? Never talk "baby talk" using words such as diaper and bib. Don't assume the person will accept being called "honey" or will be comfortable with you talking "in their face" while you rub their hand. Showing respect requires we always interact using adult language and honoring social and cultural norms, then we individualize as we get to know the person.
- Promote success in meaningful activities—The activities and all aspects should have personal relevance (the "will do" in the Allen model) and must be adapted to the person's cognitive level (the "can do" in the Allen model).
- Provide frequent, positive feedback—When interacting with a person with ADRD I often hear the therapist, family, CNA, or nurse using negatives to describe the person's performance such as "he wanders," "she is a rummager," and "he can't do anything anymore." This seeps in and creates the negative way persons with ADRD define themselves. Instead, we must provide frequent, positive feedback as appropriate, learning to see the positives in the situation.
- The wanderer is doing a good job of walking.
- The rummager is doing a good job of using her hands and focusing her attention.
- The person who "can't do anything anymore" probably has many abilities unrealized as they are squelched by the care partner approach and perspective. We must help the person realize his potential and praise his performance.
- Learn and incorporate life story—Our therapy plans must be created around the life story of the client. Honoring personality traits, likes and dislikes, habits, and roles is an essential element for communicating respect in order to maintain dignity.
The quality of the interactions the person with ADRD has with others is the defining element of maintenance of dignity and "sense of self." I don't believe this is prioritized and understood to the degree necessary. This creates much of the problem behavior that is then medicated, the lack of participation in life that leads to grave health issues, and the severe depression and hopelessness that contributes to "failure to thrive" and death.
Take a moment to analyze your interactions. How can you change your approach to maximize the dignity of the person you serve? Every time I am video taped interacting with a person with ADRD I learn something. It is easy to unknowingly show disrespect.
Do your best to modify your communication style. Take the time to learn about the individuality of the person. Create the "just-right challenge" using cognitive activity analysis so your client can successfully engage in activities that have personal meaning and intrinsic value. Praise, create a healthy and loving emotional attachment, and make certain the person always feels respected, accepted, and worthy.
The success of interventions and goals is interconnected with the quality of the interactions between the persons with ADRD and their care partners. By definition, dignity is truly a feeling and the care partner has the power to influence how the persons feel about themselves. Goals can not be achieved unless the person inside is fulfilled. The client with ADRD will not reach functional potential unless her dignity is prioritized and maintained.
1. Reference: Learnet accessed on the web 8/1/2008 at http://www.projectlearnet.org/tutorials/sense_of_self_personal_identity.html