Alzheimer’s and similar dementia’s present unique challenges to family members, caregivers and professional support staff. Recent research and experience is developing better understanding of the actual symptoms of dementia, and more effective ways to communicate and provide care for Persons Living With Dementia.
This term is key, to see “Persons Living With Dementia” as the whole and complete people they still are, and to establish bonds with them connecting to the parts of their minds and personalities that still function at high levels. It is hard for family members to appreciate these capacities and skills, as they are overwhelmed by the losses these progressive brain diseases impose on their loved ones. It is often inconceivable to the families that they can establish a new relationship with the new person the dementia creates, and let go of the former relationship with the old person, but it is exactly this transformation that is necessary,and it’s the families that have to make the adjustment.
The Person Living With Dementia is confused with memories and reality, judgment and orientation, feelings, words and meanings. But they are also living fully in the present moment, and can be exceptionally perceptive, creative, emotional,and hyper-sensitive to music, body language, facial expressions and touch. They are also susceptible to distractions, clutter, drafts and temperature changes and discomfort. They may have lost their connection to words and express themselves poorly, but they feel very intensely, and can hold on to those feelings, good or bad, all day.
Most dementia’s are largely pain free, and People Living With Dementia can live sometime for 10 years or longer. This is why it is critical that we understand their potential sand capacities as we work and live with them through the course of these progressive conditions.
The actual symptoms of dementia can be summed-up as forgetfulness, especially short-term memory; confusion with sequencing, judgment, and abstract thinking; the inability to express themselves, to orient themselves in space and time, and to control impulses; and eventually problems with balance and motor skills.
In the course of daily interaction and care, family and care providers who assist the Person Living With Dementia with their ADLs come up against these challenges. If the caregivers take their time and use touch, friendly body language and a soothing voice to reassure and orient the Person Living With Dementia, they can work around these handicaps, But if they are insensitive or have too large of a work load and rush the care, the confusion and disorientation can escalate to fearfulness and defensiveness, and if the Person they are caring for feels threatened, they may become agitated, uncooperative, angry and combative. This is a normal human reaction when any person feels threatened and when they have no control of their situation. Restlessness, depression, apathy,insomnia, wandering and apathy are all natural reactions to the basic actual symptoms of dementia if they are left un-addressed.
Medications are frequently used and overused to control these reactions, as the medications intended to treat the primary symptoms are largely ineffective. But human contact, an emotional bond established between the Person Living With Dementia and the caregivers, can calm the primary symptoms, and prevent many or most of the defensive reactions. These medications can contribute to further confusion and interfere with balance, motor skills and energy levels.
Which leads us to the ultimate benefits of good, soothing care provided at all levels of dementia: the potentials for Quality of Life. In the present moment everyone has access to Moments of Joy, whether from a visit from a loved one, the touch of a warm hand, a pleasant taste or aroma, reliving a happy memory, gazing on a beautiful sunlit garden, or hearing a favorite song. When the Person Living With Dementia knows they are safe, comfortable and cared for, their needs are met, and they have a measure of dignity, they can then be open to feel joy and fulfillment in the present moment, and one moment can follow another. When families learn to understand this it lessens their oppressive feeling of tragedy and guilt.
Communication is critical, and non-verbal communication works both ways. Families and caregivers will eventually come to understand the subtle clues and messages,either through behaviors or body posture and language. Many unmet needs can be expressed through bad behavior: hunger, thirst, fatigue, pain, cold or hot, and the need to be toileted. Some agitated and aggressive behaviors are an attempt to express a need or discomfort, when it can’t be said verbally.
By embracing the active and accessible parts of the personality and mind of the Person Living 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., Administrator
Mission Villa Dementia Care
Santa Barbara, CA