Christmas can be a stressful time for hosts and guests alike, and it’s more so for carers of people living with dementia.
It’s difficult to give general advice about how to get through the holiday season with as little fuss as possible because everyone is unique, and the various types and stages of dementia affect behaviour in different ways.
So I’m going to tell you a story of how one couple is getting through. Hopefully, their strategies will suggest things other families can do for a better Christmas.
Tom and Nola are not real people. Their portraits below are based on my experience working with people with dementia, and on conversations I’ve had with these people, their carers and service providers about how to cope at Christmas time.
Tom was diagnosed with dementia about three years ago.
“My memory is not so good now,” he says. But Nola, his wife and carer, says that he’s still sociable and enjoys food and company.
I sat across the room from my father on Thanksgiving night. He looked at me pointedly. “What’s your name?” he asked.
“I’m Mary,” I answered.
“Mary… ” he prompted.
“Mary McLaughlin,” I said, wondering if he would recognize that my last name was the same as his.
“Mary McLaughlin,” he repeated slowly. He listened to the syllables as they floated in the air. Then he shook his head. No, it didn’t ring a bell.
My father, a few months shy of his 91st birthday, has advanced Alzheimer’s disease. Though he still has good days, he has forgotten most of the things that just a few years ago he would have listed as evidence of a life well-lived — his three college degrees; his two successful careers; his five grown children; his 57-year-and-counting marriage to my mother. They — we — are all shadows now. Glimpses. Points of information that he finds fascinating and puzzling, but that evaporate almost as soon as they are spoken to him.
It’s all lost.
I’ve played that Thanksgiving night conversation through in my head a hundred times since it happened and it stings every time I do. And then, with each replay, I continue through to the second part of our conversation until I get to the part that salves the sting.
This has been a month of good news for two of my annoying habits.
The first is my penchant to watch sappy films from Indonesia. I lived in the country after college, and the films help me keep up my Indonesian language skills. A recent review of hundreds of dementia sufferers in India finds that dementia among speakers of multiple languages comes, on average, four years later than it does to people with dementia who are monolingual. Prior studies had found a similar phenomenon, but the new study shows that multilingualism likely postpones dementia regardless of a person’s class or formal education.
My next habit, forgive me, is singing along to musicals. A paper read this month at the Society for Neuroscience meeting in San Diego finds that when nursing home patients with Alzheimer’s disease sing along to The Sound of Music and The Wizard of Oz, they score better on measures of their cognitive abilities.
Monetary, emotional toll
The good news on dementia is a welcome tonic against some overwhelmingly frightening facts. Because we are adding, on average, at least two years to our lifespan every decade, we are all more prone to dementia. One’s chances of dementia double every five years after age 65; one of every two Americans older than 85 is afflicted with Alzheimer’s.
According to the Alzheimer’s Association, there are more than 5 million people in the US living with Alzheimer’s disease. But researchers say they have developed a new model that could improve early detection of dementia, allowing better treatment options and potentially slowing the development of Alzheimer’s disease.
Researchers from the Johns Hopkins University School of Medicine in Baltimore, MD, say the model, based on the reading of cognitive test scores, could determine whether memory loss in older adults is benign or whether it could develop into Alzheimer’s disease.
Although current methods of diagnosing dementia involve cognitive tests, the researchers note that the challenge for doctors is that the majority of normal, healthy people will have low scores in some areas.
They add that this makes it difficult to determine whether the patient has a mild form of cognitive impairment, is in the early stages of dementia, or is free of any cognitive problems.
James Carville, political commentator and media personality, spoke at the Alzheimer’s Services 30th Anniversary Gala earlier this year and remarked Alzheimer’s disease is “contagious.” Carville, along with his other siblings, cared for their mother, “Nippy,” with the disease, and was simply expressing that the disease was contagious in the sense that the whole family suffers on its own terms when one family member is diagnosed with Alzheimer’s.
So true. Caregivers and a network of family and friends are all affect ed by this debilitating brain disorder which affects 5.2 million Americans of all ages annually.
The disease is reaching epidemic proportions with mounting costs. In 2013, the direct costs of caring for those with Alzheimer’s to American society will total an estimated $203 billion, including $142 billion in costs to Medicare and Medicaid.
Alzheimer’s Services of the Capital Area serves a 10-parish area, and recent numbers revealed more than 21,000 individuals in these areas alone have developed Alzheimer’s, with a calculated 100,000-plus individuals statewide.
After being diagnosed with Early-Onset Alzheimer’s Disease (EOAD) at age 57, Rick Phelps was given an Exelon patch and a directive to make a follow-up appointment with his neurologist in six months.
That’s it-that’s all modern medicine could offer a man whose world had been unceremoniously upended by a terminal diagnosis.
Alzheimer’s disease has no cure, no effective treatment, and there are few resources to help families deal with the crushing effects of increasing cognitive impairment.
Fortunately for Rick, unconventional intervention would come a few months after his devastating diagnosis; in the form of a furry, four-legged savior named Sam. The spry German Shepard is a member of an elite squad of service dogs specially-trained to assist people with Alzheimer’s and other forms of dementia.
Unlike therapy dogs that assist blind or physically disabled individuals, these so-called “psychiatric service dogs” are patterned after police K9s-conditioned to analyze a situation and make decisions on how best to protect their human handlers.
Raised blood sugar may lead to memory problems even in people with no signs ofdiabetes, a study has found.
Researchers tested the memory and blood sugar levels of 141 apparently healthy people with an average age of 63.
None were suffering from diabetes, or experiencing pre-diabetic symptoms.
Participants with lower blood sugar levels were likely to have better scores in memory tests.
In one test, which involved recalling a list of 15 words 30 minutes after hearing them, higher blood sugar correlated with poorer memory.
Scans also showed that the hippocampus brain region, which is important to memory, was smaller in those with higher blood sugar.
“These results suggest that even for people within the normal range of blood sugar, lowering their blood sugar levels could be a promising strategy for preventing memory problems and cognitive decline as they age,” lead researcher Dr Agnes Floel, from the Charite University Medicine in Berlin, Germany, said.
In the largest genetic analysis of Alzheimer’s ever completed, scientists have discovered 11 new genes that may be tied to the late-onset form of the dementia disease.
Scientists scanned the brains of 74,076 older volunteers with Alzheimer’s and others who did not have the disease in 15 countries to come up with their findings. The study was published in Nature Genetics on Oct. 27.
Prior to this study, only 11 gene variants had been linked to late-onset Alzheimer’s disease, including one called Apolipoprotein E-e4 (APOE-e4) which appeared to have the strongest impact on risk.
Now, with the latest research, scientists have doubled the known gene variants linked to the disease.
These genes may play a role in how cells function, including how microglial cells (cells that form the support structure of the central nervous system) react to areas of inflammation. Other gene variants were shown to affect brain cell function and synaptic function in the hippocampus, which is the area of the brain responsible for memory and learning.
In particular, researchers say the link to one newly-discovered gene variant known as HLA-DRB5/DRB1 is a landmark finding. It plays a large role in the major histocompatibility complex region of the brain, which is an area of cell surface molecules that control how white blood cells — which are involved in the immune system — interact. This area of the brain has also been connected with multiple sclerosis and Parkinson’s disease. It could mean that the immune system has something to do with Alzheimer’s.
AgingCare.com, the online community of more than 6 million people caring for elderly loved ones, has released Fade to Blank: Life Inside Alzheimer’s—a compelling and unprecedented account that explores the human side of Alzheimer’s, as told by three families whose lives have been forever altered by this disease.
“We spent a great deal of time analyzing thousands of questions, answers and comments about Alzheimer’s on AgingCare.com,” said Joe Buckheit, Founder and President. “It became clear that even with all the information available, people wanted to know more about how this disease impacts real life.”
To answer their questions and provide further insights, Fade to Blank takes you inside the lives of three courageous families living with Alzheimer’s—from their views, in their words. It demonstrates that there is so much more to this devastating disease than its finality: more love, more hope, more humanity.
“No one has ever presented the ‘human’ side of Alzheimer’s in this way before,” said Anne-Marie Botek, author of Fade to Blank and editor-in-chief of AgingCare.com. “The unfiltered sentiments expressed by these incredible men and women have the power to truly transform the way Alzheimer’s is perceived.”
In the United States, approximately 1.4 million people suffer a traumatic brain injury (TBI) each year. Of those injuries, three out of four are minor TBI (mTBI) — a head injury that causes a temporary change in mental status including confusion, an altered level of consciousness, or perceptual or behavioral impairments.
According to a literature review appearing in the October 2013 issue of the Journal of the American Academy of Orthopaedic Surgeons (JAAOS), falls and motor vehicle accidents are responsible for most cases of mTBI and also are a common cause of bone and joint injuries. “Musculoskeletal injuries are often seen concurrently with some studies estimating that 50 percent of patients with orthopaedic injuries also sustain a mTBI,” says lead study author Richard L. Uhl, MD, an orthopaedic surgeon at Albany Medical Center in Albany, N.Y.
Approximately 80 percent of patients who sustain a mTBI can be safely discharged from the emergency department and will fully recover and return to their baseline mental status. However, mTBI often goes undiagnosed initially because symptoms do not appear until the patient resumes everyday life. Advanced imaging of the head such as CT scans is often of little use as the majority of patients with a mTBI will initially have a normal examination.
A Silent Epidemic: mTBI by the Numbers
The Centers for Disease Control and Prevention and the National Center for Injury Prevention and Control declared mTBI a major public health issue and a silent epidemic.