Alzheimer’s and similar dementias present unique challenges to family members and caregivers. Recent research has clarified the actual symptoms of dementia, as opposed to reactions and behaviors.
The symptoms of dementia can include forgetfulness, especially short-term memory; confusion with sequencing, judgment and abstract thinking; inability to express themselves; trouble orienting themselves in space and time; loss of controlling impulses; and eventually problems with balance and motor skills.
This confusion and disorientation can escalate to the behavioral symptoms of dementia: depression, apathy, withdrawal, fearfulness, anger and combativeness. These are not symptoms, but are normal human reactions when anyone feels confused, threatened and has no control of one’s situation. Many unmet needs are expressed through bad behavior: hunger, thirst, fatigue, pain, cold or hot, and the need to be toileted.
Medications are frequently used and overused to control these reactions and behaviors, to keep the person calm. But these can contribute to further confusion, and interfere with balance, energy and motor skills. Medications prescribed for the primary symptoms are largely ineffective.
So how can families and caregivers overcome these communication and behavioral problems?
First, never forget that the individuals living with Alzheimer’s or other dementias are still very much the people they always were, but with a progressive disease attacking their brains. They are still whole people, and many parts of their brains and personalities still work well. Emotions, music and rhythm, and their sense of touch, smell and taste are still very potent and often overwhelming. They are also very sensitive to body language, facial expressions and non-verbal cues. They can remember feelings, good or bad, all day long.
It is also very important that family members understand how to develop a new relationship with the new person the disease will create, and be willing to adjust as changes occur. Families must try not to focus on what is lost, but rather to explore what still works.
Caregivers will create a relationship with the new person readily because they don’t focus on who the person once was or what has been lost. Gentle personal contact, a little patient and creative orientation and reassurance, and an emotional bond gradually established between the person with dementia and their caregivers will result in better communion, and can ease many of the primary symptoms. This will help to prevent many of the defensive reactions and behavior problems and outbursts.
The ultimate benefit of good, soothing care at all levels of dementia is the potential for quality of life. Most dementias are largely pain free, and people with dementia can live for 10 years or longer. People with dementia are living fully in the present moment, and in the present moment, when their needs are met and they feel safe, everyone has access to moments of joy, from a loved one’s visit, the touch of a warm hand, pleasant aromas, reliving happy memories, seeing a beautiful sunlit garden, or hearing a favorite song.
When families learn to understand this, it lessens their feelings of tragedy and guilt.
By embracing the active and accessible parts of the mind and personality of the person with dementia, caregivers and loved ones can share a real and fulfilling relationship for many years, despite the challenges of this tragic disease.
— Fred DeLorenzo Jr. is the administrator of Mission Villa.