Emotional distress can manifest itself through fear, anger, embarrassment, hostility, panic or despair. If it is not acknowledged and acted on, it can cause deep anxiety and depression. Research into understanding emotional distress in people with Alzheimer’s, is giving us more insight into effective treatments options.
There are four common reasons for emotional distress in people with Alzheimer’s;
1. Adjusting to the Diagnosis
Even though it an often takes quite a long time (sometimes around two years from the onset of mild symptoms) to diagnose Alzheimer’s it is often traumatic and upsetting when the diagnosis is finally made. One study showed 40% of people recently diagnosed experienced anxiety while 17% experienced depression. It has also been found that people with Alzheimer’s who are adequately supported show less anxiety. The nature of anxiety does vary, but often centers on issues of fear and anticipated shame of incontinence, immobility, the inability to communicate, and cognitive decline.
Caregivers can help to reduce anxiety by using verbal and non verbal communication to empathize with the person they care for. They can also support the person in a non judgmental way. The caregiver allows the person with Alzheimer’s to freely express their individual emotions in the ‘here and now’. The behaviors that result from emotional distress, such as shouting, counting, pushing, pacing, holding onto things, are called safety-seeking behaviors by Cognitive theorists. Allowing the person with Alzheimer’s to feel they can express and cope with their anxiety works on a number of levels. For instance, they are being acknowledged, listened to and they still have the ability to solve a problem.
2. Misinterpretation and Difficulty with Processing Information
Changes in the brain caused by Alzheimer’s frequently leads to a misunderstanding of the motives and actions of others. Because of this personal relationships and the skills they need to interact with others start to suffer. Because their perception is affected they may, for example, interpret their own reflection in a mirror as an intruder. Loud noises may be perceived as threatening, a coat thrown over a chair as a body or something that triggers unpleasant memories and thoughts.
Caregivers can reduce distress and anxiety by changing the environment as it becomes clear what may be causing problems.
3. Different Personalities & Different Coping Styles
Although changes in personality and behavior viewed as characteristic of Alzheimer’s disease, they can also be seen as reasonable attempts on the part of the person with dementia to cope. Blaming others, covering up mistakes, denying errors may be their way of avoiding fear, reducing anxiety and maintaining dignity. Research indicates that people, even in the late stage of Alzheimer’s, can retain personal preferences, continue patterns of behavior that existed prior to the disease and show expressions of activities such personal appearance and hygiene.
For caregivers the times when these attempts at individualism occur can often be seen as inappropriate. The resulting behavior can challenge rules of context and be interpreted as challenging. It is difficult to understand the message when Alzheimer’s changes the rules of communication, perception, interpersonal skills and misinterpretation of the environment as well as their emotion response Caregivers have to think how they can reduce distress by interpreting the spirit of the jumbled message they receive rather than its literal interpretation.
4. Reaction to the Emotional Distress of Others
The way in which caregivers react to changes in the behavior of someone with Alzheimer’s can either help or make matters worse. Taking messages too literally or personally can lead to an increased risk of anxiety and depression. Emotional distress and the resultant challenging behavior may prevent someone’s continued placement in their own home or may lead to the use or overuse of sedatives in care homes. For all this it is important to understand that living with Alzheimer’s is a much a strain for the caregiver as it is for the sufferer.
Caregivers should seek support for themselves.
Within care home settings observations of staff show that they often protect their feelings from distress by distancing themselves from the care receiver. This behavior may be understandable but it risks a loss of empathy- something so essential for good care. Good support interventions from management can encourage staff to balance care with emotions and share best practice with others.