LIVING WITH DEMENTIA
“I’m Still Myself”
“Here is what I wish someone had told me about three weeks after I was diagnosed. Dementia is not a death sentence. It is a wakeup call to live your life, today and every day for the rest of your life as fully as possible. You are not fading, you are changing.” Richard Taylor from “Living with Dementia—The Indispensable Handbook for Family and Friends.”
The words Alzheimers or Dementia send shock waves and shudders through the body when heard as a diagnosis. It is like getting a death sentence for most. It is as if someone is saying to you and your loved ones, your life as you know it is over. As Dr. Gayatri Devi, neurologist and author says about a dementia diagnosis–“Diagnose and Adios.”
The word dementia is a general term for loss of memory and other cognitive abilities. Alzheimers dementia is the most common—60-80% of cases, with vascular dementia being the second most common form (www.Alz.org/facts). 5.7 million Americans are “living with Alzheimers every day and of those, about 200,000 are under the age of 65. The majority will go on to live with dementia for another 7-10 years. As a result, many people are still working and living active lives.
Wendy Mitchell writes in her memoir titled “Somebody I Used to Know,” about what her boss said to her about her diagnosis of early onset Alzheimers in 2014. He asked, “how long have you got?” Clearly, he thought her diagnosis was a death knell and a reason to end her employment as administrator with the British National Health Service. She writes further that “I was the same person I was the day before I received my diagnosis. I just needed to tackle my job in a different way.”
With a cure for dementia nowhere in sight, there is a movement afoot to educate individuals, families, employers and communities to understand what it means to “live with dementia” so individuals with dementia feel welcome and accepted—not shunned.
One such movement is the The National Dementia Action. Launched in 2015 as a non-profit national organization, its mission is to advocate and educate people living with dementia, their care partners, friends and dementia specialists. They are “committed to a better country in which to live with dementia.,” (www.daanow.org).
The Dementia Action Alliance (DAA) addresses the stigma and misperceptions of dementia. It focuses on the whole person, not just the dementia symptoms. They advocate for inclusion and acceptance of dementia as a disability, not a disease. Living with any disability requires strategies and accommodations in how one tackles day-to-day living tasks and dementia is no different.
“I need your help to enable me, not further disable me.”—Richard Taylor
The Dementia Action Alliance publishes a handbook for family and friends entitled “Living with Dementia.” It is a concise guidebook for individuals diagnosed with dementia and their family and friends. It walks you through information and misperceptions about dementia, how to tell others and tips on communication and resources. The quotes from people describing the actual experience of living with dementia, along with art work set this handbook apart from other published information on dementia.
They also held national conferences in 2017 and 2018 that bring together leaders in the field of dementia, and uniquely, include those living with dementia in their program.
Another national initiative working to educate community members on how to communicate and understand the dementia process is the Dementia Friendly America Organization (www.dfamerica.org). They focus on the experiences of those who say “I am still me” and work to educate communities on accepting and enhancing the lives of those “living with dementia.”
A friend of mine recently shared an experience she had when taking her father, newly diagnosed with dementia to the bank. It was a slow and trying process for him (and his daughter) because the bank teller was impatient, talked too fast, frustrating her father who could not process the information fast enough. Because of the stigma attached with dementia, families are reluctant to take their loved one to a restaurant or church because they may be disruptive and make those around them feel uneasy, awkward, because they do not know to do or say so they just turn away—shunning the individual with dementia.
When the owner of a home care agency, and whose father has dementia, learned that Virginia was the only state without such a program, she was determined to start the Dementia Friendly Herndon pilot program. Their initial focus was on faith-based communities in Herndon. Their pilot program offers workshops for church members on communication tips so their members with dementia feel welcome in church. Their next target group is restaurants. The Dementia Friendly Herndon initiative hopes to be a resource for other communities in Virginia.
To understand the day-to-day barriers that people “living with dementia” face every day, watch the You Tube video @ www.NorthernVirginiamag.com/family/Family-features/2018/05/11/Herndon.
Life does not end on the day you are diagnosed with dementia. Gradually, through organizations like the Dementia Action Alliance and Dementia Friendly America, family, friends, communities will begin to change their attitudes and behaviors towards those “living with dementia” so they don’t feel ashamed and have to retreat from the world.