At our last Without Warning meeting, Bob, whose wife passed away from younger-onset Alzheimer’s disease several years ago, told me something interesting. He realized that during the 10 years he has been attending Without Warning meetings, he has learned how to share his story. While sharing your story might seem like a small task, I’ve grown to realize that it is a profound and healing skill.
Without Warning, a 13-year-old support program of the Rush Alzheimer’s Disease Center, is for families living with younger-onset Alzheimer’s disease. Younger-onset Alzheimer’s means the person is diagnosed by the age of 65 or younger. This is a young age to be experiencing Alzheimer’s disease. Group members might still be working, raising children, driving and have friends who aren’t experiencing such a life-changing disease. Alzheimer’s at any age can make someone feel isolated and different, but these feelings only intensify when someone is young.
‘Agony of an untold story’
The author and poet, Maya Angelo once said, “There is no greater agony than bearing an untold story inside you.” As a group facilitator, I have seen the agony of an untold story in both the person with Alzheimer’s and their family members, and there are numerous reasons their stories are not heard or told.
The passing of the actor Gene Wilder — remembered by many for his lovable portrayal of Willy Wonka — further reinforced that fact that Alzheimer’s disease does not spare anyone. Many people were no doubt surprised to hear about his diagnosis and that he died from complications of Alzheimer’s disease. After all, Gene Wilder was wildly talented, engaged in creative activities all of his life, appeared physically spry and had a wonderful imagination. How could this happen to him?
Indeed, Alzheimer’s disease dementia can happen to anyone, and crosses race/ethnicity and social economic status. More than 5.5 million people in the United States officially have Alzheimer’s disease dementia, which is an underestimation, as many people live with the disease never receive a diagnosis.
Minorities, African-Americans and Latinos are appearing to be hit harder with Alzheimer’s disease and dementia. African-Americans are at least 1.5 times more likely to develop the disease, and the data suggests the same for Latinos. Recent data is also confirming that sex and gender differences are present in Alzheimer’s disease — women are developing the disease more than men.
Lifestyle factors that may increase Alzheimer’s risk
Comorbid medical conditions such as heart disease, diabetes, nutritional deficiencies and depression all can lead to poor cognitive function and can be risk factors of Alzheimer’s disease. People with a history of hypertension also may have a greater risk for Alzheimer’s disease dementia and other dementias. In addition, people who have decreased heart function are two to three times more likely to develop significant memory loss compared to those with better heart function. Lastly, those with multiple cardiovascular risk factors were more likely to have impairment in learning, memory and verbal fluency tests and worsened over time.
In recognition of National AmeriCorps Week, AmeriCorps member Simone Blake explains her work with the Rush Alzheimer’s Disease Center.
I’m serving as a healthy nutrition and aging educator at the Rush Alzheimer’s Disease Center through AmeriCorps’ Healthy Communities Corps. Its mission is to improve food quantity and quality in underserved communities across Chicago and Cook County.
The AmeriCorps program engages over 80,000 men and women in intensive service to tackle pressing problems each year, through thousands of nonprofits, schools, public agencies and community and faith-based groups across the country.
Everyone should have opportunities to reach positive health outcomes. Aging adults in our current fast food nation find themselves stranded. They need fiber and nutrient-dense foods when only high-calorie, low-nutrient foods are available.
My first patient encounter was not in medical school. It was during college, when I was required to play violin at the geriatric psychiatry lounge as part of a course called “Music as Medicine.”
The audience was not my usual: patients half-asleep in chairs, nurses running between rooms, and rounding residents discussing treatment plans. Unsure of what to expect from my “music as medicine” session, I ignored the seemingly uninterested audience and began to play.
During my performance, I was interrupted by a patient. We briefly conversed about music, family and her past experiences. After the session, I was informed by the resident that the patient that I had interacted with had been belligerent, incomprehensible and hostile for weeks with no sign of improvement. The resident was astonished by the improvement of the patient’s dementia after my session. My experience was the first time the patient was socially acceptable since admittance. By listening to music, the patient could recall family members and distant events, and hold a conversation.
“When we typically think about Alzheimer’s we think about people who are in their 70s and 80s,” says Susan Frick, a social worker with the Rush Alzheimer’s Disease Center, “but there is this group of people who are under the age of 65.”
“The mission of Without Warning is to give a voice to people with younger-onset Alzheimer’s disease,” says Anna Treinkman, an advanced practice nurse with the Rush Alzheimer’s Disease Center. “We at Rush started this with the impetus from people who are younger, who didn’t feel that they had any connection when they would go to support groups that were stricly for Alzheimer’s disease — a lot of older people — and they had nothing in common with them.”
Participants take immense comfort in the monthly gatherings.
“I really look forward to coming on Thursday,” says one Without Warning participant, whose husband has Alzheimer’s disease. “I just think it’s really healthy to come to terms with the disease. I learn more about it, I learn more about myself. I just don’t feel like I’m alone, which is how I feel most of the time.”
Every month for many years, I have had the wonderful opportunity to listen to an amazing group of people. Their knowledge and insights have taught me about living while facing some of life’s most difficult challenges.
Sponsored by the Rush Alzheimer’s Disease Center, this monthly group is for people living with younger onset Alzheimer’s disease (diagnosed under the age of 65). Our group, called Without Warning, is for both the person experiencing memory problems and the family members or friends who are also on this journey. We meet to talk about how to live gracefully with Alzheimer’s. We talk about the difficulties, but also the triumphs. I’m one of the several staff people who help coordinate this growing and vital program.
As you can imagine, having Alzheimer’s disease at such a young age is often unexpected and can be an overwhelming experience. These individuals describe Alzheimer’s as feeling like they have fallen into a pit and can’t find the way out. They talk about feeling disconnected from people who are right around them. They talk about a tired feeling they have never felt before. And, they talk about realizing that they are not the same spouse, parent, child or friend. Continue reading →
Thanksgiving has always been my favorite holiday. When I was younger, I always looked forward to all the excellent food my mother would make for Thanksgiving dinner. Since my appetite for food is not quite what it was when I was a teenager, I have come to value sharing the day at home with family and friends. However, I admit that the food still is a close second.
Over the last nine years, I have been blessed to be able to spend my working days with another family — the dedicated and caring team members of the Rush Alzheimer’s Disease Center. The RADC is passionate about finding ways to provide education, research and clinical care for memory loss. As a team, we are invited into the homes of many of our research participants and their families to conduct clinical studies on memory and aging. All of us realize the need to advance science to prevent, delay or slow down symptoms associated with conditions such as Alzheimer’s disease. However, what sustains us through the ups and downs of scientific work are the relationships we have built through the hours shared with our research participants.
So this Thanksgiving, I would like to give thanks to all the individuals and families who have carved out time to participate in studies at the RADC. You are a part of our family. You are all very special. You have given an important gift to help others now and in the future. Without each and every one of you, we would not have learned as much about how memory changes with age. We also would not have learned as much about what interventions may help in reducing the suffering associated with conditions such as Alzheimer’s disease. Continue reading →