Altering perceptions when caring for a dementia sufferer

By Micha Shalev

We know that cognitive and memory impairments can change how a person thinks, acts and/or feels. These changes often present special challenges for families and caregivers in a home or long-term care facility setting. An ordinary conversation, for example, can be quite frustrating when your loved one has difficulty remembering from one moment to the next what has been said.

Individuals with moderate to severe dementia, or another cognitive impairment, often require special care, including supervision (sometimes 24 hours a day), specialized communication techniques and management of difficult behavior. They may need help with activities of daily living (ADLs), such as bathing, eating, transferring from bed to a chair or wheelchair, toileting and/or other personal care.

Individuals with cognitive impairment may experience a range of behavioral problems that can be frustrating for caregivers. These might include communication difficulties, perseveration (fixation on/repetition of an idea or activity), aggressive or impulsive behaviors, paranoia, lack of motivation, memory problems, incontinence, poor judgment and wandering.

Some people may develop behavioral problems early on, while others go their entire illness with only minor issues. Most cognitively impaired persons fall somewhere in the middle, having good days and bad days (or even good or bad moments). Anticipating that there will be ups and downs, and maintaining patience, compassion and a sense of humor, will help you cope more effectively with difficult behavior. It’s important to remember that it’s the disease, not the person, causing the behavior.

All behavior of individuals diagnosed with Alzheimer’s and/or dementia (AD) has a reason, although the cause may not be immediately known. Behavior is a response to the environment, caregivers or internal stimuli. Problems may develop when the expectations of the caregiver do not match the abilities of the individual. The individual has a need for supervision and assistance because of increasing functional disability.

The management of behavior is directed toward adapting the environment and approaches to the needs of the individual. Caregivers cannot cure the disease or teach individuals to remember. They cannot resolve behavioral issues by using logic, by trying to reason with the person or by coaxing or using flattery. Caregivers should have a healthy sense of humor and be flexible, creative and individual directed.

The medical model of care is no longer effective for late-stage AD sufferers. Rigid routines that require vital signs to be taken at 8 a.m., showers/baths to be completed by 11 a.m. and all residents in bed by 8 p.m. are unnecessary and unworkable.

Creativity allows the caregiver to acknowledge that sleeping in a bed wearing nightclothes is not necessarily the norm for AD sufferers. Behavioral management is successful when caregivers can enter the individual’s reality and utilize techniques that show respect for adult feelings rather than dwelling on childlike behavior.

The behavior of a cognitively impaired person is logical within his or her own frame of reference. Knowledge of history is helpful, as it facilitates understanding of the person who is reliving the 1930s, 1940s or 1950s. An awareness of the individual’s personal history is essential because it helps to know where the individual is coming from when he or she relives the past.

Avoid the use of labels in describing behavior. Words such as “uncooperative” are subjective and usually mean that the individual will not complete the desired task when it is asked. When caregivers use such labels, the tone is set for all future contacts with the individual. Caregivers may assume that the individual will be difficult, and thus elicit the poor behavior that is expected.