We need to hear well before the voice is silenced by the disease
By Mike Good for Next Avenue
(Editor’s Note: This is the eighth in a series examining and interpreting a commonly used “bill of rights” for dementia patients.)
People with Alzheimer’s or other dementia are an invaluable part of our society. Millions of them are brilliant, wise and actively advocating for their rights and needs.
As my friend with Alzheimer’s, David Kramer said, “It’s not something that necessarily makes us idiots.” No it doesn’t, but unfortunately the vast majority of people don’t understand the disease, and therefore, don’t know how to listen to the person with dementia.
Just like anyone else with unique challenges and special needs, people with dementia need to be able to communicate their needs, wants and fears without being judged.
Paying Attention — Or Else
Our government officials and medical professionals must stop, listen and make changes based on what the people with dementia are telling us. Otherwise this epidemic is going to continue to alienate millions of families who are affected by dementia.
People with dementia know what is needed to help them fight back against this cruel disease. They understand how communities should be educated and adapted to let them remain included and engaged.
Some people with dementia justifiably argue that their civil rights have been taken because they have been ostracized from society. Despite feeling this way, they continue to advocate for themselves and for the 21,000 new cases every day around the world.
The Best Friends Dementia Bill of Rights states that the person with dementia has the right to be an advocate for oneself and for others.
Many continue to advocate only to be ignored. Despite their daily, if not hourly, challenges, these advocates put on a brave face that leaves observers thinking there’s nothing wrong with them, and therefore, don’t need to be listened to.
By the time symptoms become readily apparent to everyone, the disease will be quieting their “voice” as it ultimately steals their ability to form words and communicate verbally. They will be left unable to advocate for their own basic needs, wants and fears.
‘Dementia Alphabet Soup’
It will be left to their friends and family members to advocate for them as these new, untrained caregivers learn to listen more with their eyes than their ears, by observing non-verbal cues. Understanding dementia alphabet soup takes patience and empathy, but it is critical to maintaining connection.
No matter what a person’s abilities are, it’s important to remember that nobody knows the disease better than they do. While we may not easily understand what they are communicating, we must learn to listen with our eyes, ears and hearts, no matter what stage of the disease they are in.
Alzheimer’s disease and other dementias are not going away anytime soon. If we as a society continue to ignore the voices of those with dementia, we’ll miss out on an opportunity to improve the lives of millions of people. Together, however, we can learn to speak Alzheimer’s.
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