Chaplain's Corner

“Aggressive behavior”, “Behavioral problem”: these are labels that are often given to a person with dementia. Now I am no stranger to the reality these phrases seek to describe. For nine months, during my training for chaplaincy, I was assigned as the unit chaplain for the Behavioral Unit that used to be housed on 4West at Riverview Health Centre in Winnipeg. We had residents come to us with some pretty difficult issues and for the most part, usually after a considerable amount of trial and error, the team figured out how to care for the person in a way that enabled them to be comfortable and pleasant.

Nursing homes all over Manitoba would send residents to this unit to be “managed”. In reality, the team worked hard to understand the origins of the behaviors and develop a care plan that was considerate of the special needs that these residents came to us with. The vast majority of time the care plan sent back to the facility with the resident taught the staff better ways to relate to and approach each resident that would prevent or minimize the behavior that were of concern.

Recently I was reading an article from OHS Canada – Canada’s Occupational Health and Safety Magazine. In the December 2010 edition there was an article titled “Take Care” by Emily Landau. In the article she speaks of these “aggressive behaviors” as “responsive behaviors”.  I think we should think very hard about using this kind of description as opposed to “aggressive behavior” or “behavioral problem” labels that are commonly used. Let me explain my reasoning.

First, a person with dementia experiences an altered ability to interpret the things happening around them. This diminished capacity to understand accurately the things happening to them or around them is often the stimulus for a behavior that might be called “aggressive” or “a problem”. However, when we label a person as manifesting “aggressive behavior” or being a “behavioral problem” we are in essence saying something about that person’s identity; when we speak about another’s “identity” it opens the door to a lot of misunderstanding, prejudice and the possibly mistreatment.

One of the times that these responsive behaviors arise is when health care staff are providing personal, private care to a resident who is no longer able to do this for him/herself. Sometimes the responses to providing this care are pushing, hitting, hair pulling, biting and others. These responses can cause injury to the staff members providing care. They can also result in injuries to the resident. Such situations certainly are of concern for the safety of both the resident and the staff are of utmost importance.

It certainly isn’t easy to care for a person who is responding to care in these ways. But think about it. If you didn’t know what was happening and couldn’t process the words that were being used to address you and someone began touching you in private areas, how would you respond?

Recently in Manitoba a training program called P.I.E.C.E.S. has been introduced. It began in Ontario and now a number of provinces have embraced the training for the benefits it holds for staffing Long Term care. Manitoba Health encourages staff in all nursing homes to take the training. At the very foundation of this training is the belief that people with Alzheimer’s and other dementias need to be approached and cared for with new and different understanding. Part of that new approach and understanding is using a new language when talking about the challenges that arise in caring for people with dementia.

Some of the insights that I have learned from this training are worth sharing. If you visit in a nursing home or have a family member or friends that has been diagnosed with dementia of some kind; these insights might be helpful to making your interactions with this friend or family member more rewarding for everyone.

“Think before entering the person’s personal space.”  Because dementia alters perception, when we approach a person with dementia we need to be aware that we don’t startle them. We should approach a person with dementia from the front, so that they are not surprised or startled.

When coning to visit, consider yourself “the entertainer or host”. Come with things to talk about, to look at or to show. Think about how in the visit you can stimulate the person’s senses: flowers to smell, cookies to eat, and pictures to look at and hold are all important things we can bring with us to make the visit pleasurable for all involved.

Monitor your own emotions and stress. People with dementia may not be able to process language, but they are very keen in picking up on our emotions. If we are stressed, or angry, or frustrated or sad, the person we visit may quickly mirror our emotion.

Be attentive to “nonverbal/verbal triggers that escalate anxiety and distress” for the person with dementia. If you visit regularly and are attentive, you will begin to understand what kinds of stimuli cause anxiety or distress for the one with dementia. Remember these and avoid them. For instance one of our residents regularly asks where her husband is. Now he has been dead for a number of years, but she doesn’t remember his death. The temptation is to “be honest” and tell her that her husband is dead; however, doing so thrusts her back into grief repeatedly. It is better to avoid the subject and respond with something like, “My he is a busy man, I haven’t seen him around all morning.”

When concluding your visit, avoid saying things like, “I have to go home now.”  The person with dementia rarely is able to perceive the Long Term care facility as their home. If you talk about home, the people with dementia will in almost all cases want to go with you. This may make leaving very difficult and traumatic for the person with dementia. Instead, it is better to say something like, “I have to go see Henry, and we agreed to meet this afternoon.”  By avoiding the “HOME” word, a word that carries powerful connections long into the dementia process, you will save the person much upset. If leaving is problematic, enlist members of the staff to distract the person you are visiting while you leave.

People with dementia “respond” to us differently, because they perceive their environments differently. As we care for them, we need to work hard to understand their responses and what stimulates them, avoiding the stimuli that call forth painful and difficult responses and effectively use the stimuli that call forth hopeful, positive responses.

When caring for a person with dementia, it is our responsibility to make the adjustments, because this disease makes it unreasonable for us to expect them to make the adjustments. Don’t be afraid of a person with dementia; just prepare yourself to get to know that person in a whole new way. Some of my most pleasurable relationships are with the people I serve that have dementia.