ALACHUA ‒ As the baby boomer generation rapidly approaches retirement age, the U.S. is projected to experience a radical demographic shift. According to the U.S. Census Bureau, about one in five residents in the U.S. will reach retirement age (over 65) by the 2030s. For the first time in U.S. history, seniors will soon outnumber children under 18.
This aging of the population will have far-reaching economic and social ramifications, especially when it comes to healthcare needs. Specifically, diseases that typically affect the elderly will become more prevalent in the U.S. One of the most common illnesses among people over the age of 65 is Alzheimer’s disease.
Alzheimer’s disease is the most common cause of dementia. It is a neurocognitive disorder that affects a person’s memory. Alzheimer’s typically starts with mild memory loss and sometimes progresses to hindering a person’s speech, thought process, and ability to respond to his/her surroundings. It is an agonizing decline for both the patient and the family as they slowly lose their memory and recognition of their loved ones. The exact cause of the disease is unknown and it currently has no cure.
Currently more than 5 million Americans, accounting for 11 percent of adults suffer from Alzheimer’s disease. The onset of the disease usually occurs after the age of 60, and the risk of Alzheimer’s increases significantly with age. Unlike other medical conditions associated with aging, such as heart attacks, strokes or cancer, the development of Alzheimer’s disease is often a much slower insidious process. But the disease can still result in death. In 2017, more than 120,000 deaths were a result of Alzheimer’s disease. Of these cases, 80,000 were among Americans over the age of 85.
Alzheimer’s effects go far beyond the mortality rate. It's financial burden on society and families of the patient can be devastating. Not only does the disease affect individual patients, but also their family members and taxpayers who fund government programs like Medicare and Medicaid. The Alzheimer’s Association estimates that in 2018, the total cost of treating Alzheimer’s disease—including assisted living facilities, home health care, and other medical treatment—was around $277 billion. The association estimates these costs will more than double by 2035 and continue rising as the 65+ population reaches more than 85 million by 2050.
Florida has the third highest Alzheimer rate in America and affects 13 percent of the 65 or older population. People may live eight to 10 years after diagnosis, with some living as long as 20 years.
For the past 30 years, a nonprofit organization called Compassion & Choices has been working to improve patient rights and individual choice at the end of life, including access to medical aid in dying. Its primary function is advocating for and ensuring access to end-of-life options and allowing the patient to determine whether they want continued medical care in the condition they are in.
The organization provides end-of-life consultation for dying patients and their families at no cost. Professional consultants and trained volunteers work by phone or in person to offer assistance in completing advance directives, make referrals to local services, including Hospice and illness-specific support groups, advice on adequate pain and symptom management, and information on safe, effective and legal methods for aid in dying. But planning for end-of-life care with dementia should happen earlier before a dementia diagnosis, or at the early stages of a diagnosis, before thinking and speaking abilities fail.
Compassion and Choices President/CEO Kim Callinan became an advocate for the organization due to her own experiences. She watched her grandmother slowly lose all cognizant abilities and face critical health issues while prolonging the process through medical intervention. “We didn't recognize that we were simply extending the time because we were refusing to let her go even though she had no idea who we were.” Later she had the opposite experience when her grandfather passed in Hospice with an advanced directive to stop medical care when the conclusion was it would not improve life, but simply extend his suffering. “We were able to be there with him while he could still relate to us as he passed,” Callinan said.
Callinan spent much of her professional career as a communications and social marketing expert but felt that she needed to do something geared more toward helping individuals and families cope with long-term health issues. Her experience with her own family shaped the direction she wanted to go with a nonprofit agency. Five years ago, she joined Compassion and Choices to advocate for letting people choose their own path in the fight against Alzheimer and dementia.
The program allows patients and families to make advanced directives on how they want to control their end of life. Advance planning involves making thoughtful decisions, putting them into a written advance directive, and discussing those decisions with loved ones and healthcare adviser, someone they can trust to advise medical providers about care preferences if the patient is unconscious or mentally incapable of speaking for yourself.
To help families and patients determine what and when to make these critical decisions, Compassion & Choices has developed an online program called Dementia Values & Priorities Tool, to address the reality of the debilitating effects of Alzheimer’s.
Through a series of questions, this free online resource helps patients and families identify and document their care preferences in advance of a dementia diagnosis. It then creates a dementia health care directive to attach to an advance directive, so their health care proxy can carry out their personalized care plan.
Creating a dementia-specific advance care plan lifts the burden off of loved ones or patients to make difficult decisions when they can no longer speak for themselves. It helps people determine their healthcare wishes in advance, should they be diagnosed with dementia and allows people with dementia to stop medical treatment if they want, so they can die naturally if that is their wish.
A second online tool is the Dementia Decoder which allows patients and caregivers the ability to generate specific questions for doctors, nurses or other health providers. The questions are designed to get them the complete information they need to deal with Alzheimer’s. This tool also addresses other fatal illnesses like cancer so the patient can be fully informed on their condition.
“Our goal is to provide information that most people would not know how to address and to control their own end of life decisions and not prolong their suffering,” Callinan said. Information on both these tools can be found at the organizations website at: https://compassionandchoices.org.
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