Understanding Dementia: Why They Do What They Do
Kelly O’Shea Carney, PhD, CMC Executive Director, Phoebe Center for Excellence in Dementia Care
Family caregivers for individuals with dementia often struggle to understand the many changes they see in their loved one. An individual who was once gentle, considerate of the feelings of others and very careful about their appearance may become difficult to get along with, insulting and unaware of their hygiene. Moreover, as the family member attempts to be helpful by keeping their loved one safe, clean and well cared for, the caregiver may become the target of anger, insults and even aggression in the process. These changes can be extremely difficult to comprehend in a person that the caregiver has known and loved for many years. In fact, the unfamiliar behaviors may be better understood and accepted by people who did not know the individual before he or she became ill, leaving the caregiver feeling even more confused and discouraged.
Why do people with Alzheimer’s do the things they do? And what is a family caregiver to do in response?
Effectively caring for an individual with Alzheimer’s disease must begin with an understanding of the disease process and how that affects all the other aspects of the individual. Alzheimer’s disease is a progressive illness that actually begins to develop long before any changes in the individual are noticeable. Scientists now believe that the changes in the brain cells of people with Alzheimer’s disease actually begin to occur decades before the symptoms of the disease become apparent. Over time, the changes in the brain cells begin to accumulate and affect more and more areas of the brain. As the disease affects different parts of the brain, the ability for the person to think, act and relate to others is progressively diminished. (
For a simple overview of the disease process and its progression, go to www.AboutAlz.org and watch the video called “What is Alzheimer’s Disease”.)
As the brain deteriorates due to the disease, the specific abilities of the brain begin to decline. First changes in memory are noticed. Then the ability for the individual to express themselves in words and understand the words of others deteriorates. Eventually, higher order cognitive abilities such as insight, planning, reasoning and judgment deteriorate, rendering the person unable to make good decisions about their safety, self-care or their future. As these thinking-related abilities decline, the person also becomes less able to engage in the simple activities that they used to do each day. Complex activities, like managing finances and driving a car are compromised first, but eventually, even simple tasks like washing, dressing and using the bathroom can become difficult for the person to do alone. At the same time, the person’s ability to manage their emotions is altered and emotional displays that seem out of the blue and disproportionate to the problem may become more common. These emotional episodes can be particularly difficult to respond to because the individual is less able to understand reason and reassurance. Their distress feels very real to the individual and efforts to convince them otherwise are often rejected. The inability to do things that were once such a simple, common part of life, like driving a car or taking a walk, can also act as a trigger for emotional episodes as the individual struggles with the frustration of their limitations.
All these changes occurring together can create a sort of “perfect storm” for the individual, resulting in the challenging changes in behavior that were described earlier. Suddenly, the person you once knew may appear to be a completely different person engaging in behaviors that he or she never would have considered appropriate in the past. Angry outbursts, foul language, unkind accusations and obstinate refusals of help may become more common, and it is these behaviors that caregivers often find the most difficult to manage.
The keys to managing the behavioral changes in a person with Alzheimer’s disease are simple but require consistent attention and effort. First, it is important to engage in on-going learning about the disease process itself. The more you understand, the more you will realize that the behavioral changes are not directed at you personally. The behaviors are symptoms of the disease. Second, it is important to develop and utilize a network of professionals that can provide the assistance you need and support your caregiving efforts. In addition to relying upon professionals to assist you, it is important to call upon your personal network of support to provide you with the encouragement, care and help that you need to be a caregiver. Alzheimer’s disease is a marathon, not a sprint; it is important that you take care of yourself as you support your loved one or you may not be able to “finish the race”. Finally, it is important to remember that because Alzheimer’s disease is a progressive illness, it creates a “moving target” for the caregiver. You must constantly remain open to noticing the changes and adjusting your approach and understanding to meet the evolving demands. Just when you think you have things figured out, you are likely to have to change your approach.
In the end, managing the behavioral changes that occur as Alzheimer’s disease progresses requires the caregiver to realize that monitoring and modifying your own behavior is the best way to modify the behavior of person with dementia. In your interactions with your loved one, draw upon the cognitive areas that are still working rather than those that have become impaired. For example, if your loved one is no longer able to remember recent events but can still recall events from long ago, focus on memories from the past. If a person is having difficulty using their words, use non-verbal gestures, touch and friendly facial expressions to convey your love and concern.
It is also important to help your loved one engage in activities and tasks that they can be successful in performing and avoid tasks that are beyond their capability. This will reduce frustration. For example, perhaps your loved one would be overwhelmed by cooking a meal independently, but he or she is still able to focus on simple tasks for a short time. If so, give your loved one simple tasks that allow him or her to help with meal preparation but are not overwhelming. Washing vegetables, setting the table or measuring out ingredients might be tasks that could feel fulfilling.
Finally, interactions with your loved one are likely to be happier and more productive for both of you if you meet him or her in their own reality. There is no need to correct or reorient your loved on to the “real” reality of life. They simply may not be able to grasp that reality. Rather, enter his or her reality by accepting and validating his or her feelings and assuring your loved one that everything will be ok. If a conversation is becoming difficult, let go of that topic and distract your loved one with a task or activity that they will find engaging and enjoyable. This will help to avoid conflict and minimize challenging behaviors.
Caring for someone with dementia is widely understood to be one of the most difficult types of caregiving. The seemingly inexplicable changes in behavior and personality can make caregiving mentally and emotionally draining. To be effective in your caregiver role, you must educate yourself and constantly evolve in your approach to the task, as well as rely upon others for help and support along the way. Knowing why they do what they do will make it easier for you to do what you must do.
© Phoebe Ministries, February 2013
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