(Editor’s Note: This is the seventh in a series examining and interpreting a commonly used “bill of rights” for dementia patients.)
As a loved one starts to slip away due to Alzheimer’s or another dementia, his or her behaviors may at times seem childlike. As a result, there’s often a tendency to treat this adult as a child.
While the brains of those with Alzheimer’s may, per the theory of retrogenesis, deteriorate functionally and cognitively in the reverse order of how their brains developed, these individuals still deserve to be treated and respected as adults.
The Best Friends Dementia Bill of Rights states that everyone with dementia deserves that and to be listened to and afforded respect for their feelings and point of view.
After all, these individuals are not children, and in fact, they have an array of life experiences that define who they are. Their experiences go well beyond what those caring for them may even imagine. They’ve raised families, had long careers and even served in wars.
While the changing needs of people with dementia require them to rely on others for assistance, they still deserve our respect.
However, their identity is at risk for being lost as their abilities decrease and their needs increase. It’s up to those caring for them to preserve their identity and maintain their dignity in these five ways:
We often hear how it starts right at diagnosis when the doctor talks around the person and won’t look him or her in the eyes. While the words may not come as fast and conversations may be harder to follow, they still have a right to always be included in conversations.
Even when they can no longer communicate verbally, many can still understand and feel emotions and empathy. They may feel insulted by disrespectful terms of endearment such as “sweetie.” It’s important to use a person’s name, which shows respect and helps preserve identity.
As the disease progresses, these individuals require more help with activities of daily living (ADL). This includes bathing, dressing and toileting where privacy is an important element of dignity. Steps must be taken to assist the person while allowing him or her to feel shielded from prying eyes.
Complications with eating and toileting may also require the use of pureed foods or incontinence products. A caregiver may matter-of-factly refer to these as baby food or diapers. The use of such terms also erodes dignity and should be avoided.
A person’s identity is shaped by the everyday decisions he or she makes. Allowing a person to decide what to wear, what to eat or what to do helps preserve identity and individualism. Empowering those with dementia to make choices bolsters their self-esteem and helps maintain their dignity.
While the changing needs of people with Alzheimer’s or another dementia require them to rely on others for assistance, they still deserve our respect.
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