It’s World Alzheimer’s Day
Monday, September 21st was World Alzheimer’s Day, an opportunity to sharpen our focus on this terrible disease. Some might wonder why there is a specific Alzheimer’s day when there are already multiple months dedicated to understanding the impact Alzheimer’s and other brain and dementia diseases has on our life. Having a particular day should encourage us to renew our support for the patients, the caregivers and our healthcare system that is central to those who suffer from this debilitating disease. I think having a specific day gives us a chance for action. On this day there are walks, people wearing purple (the ribbon color for Alzheimer’s), education seminars, community events, fundraising, and caregiver support. It’s an important part of the movement to reduce the stigma and lack of information that is often a part of this disease. It also promotes early diagnosis, and is another reason to advocate for accelerated research. Alzheimer’s continues to have a huge impact on our lives, both mentally and financially. I always like to start this yearly blog by detailing how big this impact is.
7.4 million Americans are living with Alzheimer’s dementia. 1 in 9 people 65 and older currently have Alzheimer’s. I was recently at my high school reunion where there was 62 of us having dinner. As I remember that night, I could calculate that 7 of them will be stricken with Alzheimer’s in their lifetime. It is estimated that the direct yearly cost of Alzheimer’s . . . Health care (hospital care, physician visits, diagnostics), long‑term care (nursing homes, assisted living, home health), hospice care, Medicare + Medicaid spending, and out‑of‑pocket costs paid by families . . . is $360 billion a year. This doesn’t count the estimated cost of the unpaid caregivers, which is another $250 billion a year. These numbers don’t take into account the economic cost of the lost hours of productivity. Needless to say, the financial cost of this disease is staggering.
I’m sure that that most of us would say the mental and emotional cost of Alzheimer’s is the worst cost of this disease, and not just to the patient or the caregiver. As you grow older, and I have some experience in this area, you begin to confront some of the mental maladies of growing older. Like, why did I come into this room, where did I put those eyeglasses, and the one that bothers me the most – I know there’s an ideal word for what I want to say, it used to be in my vocabulary, it starts with a M, but I just can’t seem to be able to pull it out of my brain. As this begins to happen your first thoughts are, “is this the start of some sort of debilitating dementia?” I’ve heard this not very politically correct comment more than once, as someone talks about another person’s mental state and possible dementia - “I think so and so is losing it.” It’s almost like their ability to recognize the symptoms in another person indicates that they aren’t “losing it.” I can safely say it is the fear of every older person. Our desire to not be a burden to our significant other or to anyone in our family may be only exceeded by our fear of losing our respect or our dignity. I can think right now of 9 people in some aspect of my life that have, or had, some sort of dementia. One of the worst parts of this disease is that this long goodbye slowly takes the person we knew away from us and leaves us with someone we’ve never met. I’ve also often thought about the impact of the disease on the Alzheimer’s patient. They also slowly lose the loved ones that gave them joy and comfort with no replacement. This is a gruesome debilitating disease that has some sort of impact on all of us.
I do want to leave you with a list that I’ve found helpful of ways to effectively communicate with a person suffering from dementia.
Engage the person in one-on-one conversation in a quiet space that has minimal distractions.
Speak slowly and clearly.
Maintain eye contact. It shows you care about what he or she is saying.
Give the person plenty of time to respond so he or she can think about what to say.
Be patient and offer reassurance. It may encourage the person to explain his or her thoughts.
Ask one question at a time.
Ask yes or no questions. For example, “Would you like some coffee?” rather than “What would you like to drink?”
Avoid criticizing or correcting. Instead, listen and try to find the meaning in what the person says. Repeat what was said to clarify.
Avoid arguing. If the person says something you don’t agree with, let it be.
Offer clear, step-by-step instructions for tasks. Lengthy requests may be overwhelming.
Give visual cues. Demonstrate a task to encourage participation.
Written notes can be helpful when spoken words seem confusing.
Through my own experience I can testify how hard it is to ignore the person the dementia has created when that person is so different than the one I’ve known and loved. It is difficult to communicate with them. I had to remember that this was “the dementia person” and not the person I knew before. I also reminded myself that the person I knew for so many years deserved to continue to receive the love, respect, and dignity they had earned over those many years. I see it as a lasting gift we can give them.
I think finding a cure for Alzheimer’s should be the number one focus of our healthcare system and our government. In these days of reduced research grants and barriers to research investment we need to focus on finding ways to lessen the onset or even a cure of this life robbing disease. We need to make sure our lawmakers know we believe Alzheimer’s needs a “moon shot” type of commitment. I think there is no better way to invest our countries assets.
Best, Thair