In nursing homes and residential facilities around the world, health care workers are increasingly asking dementia patients questions: What are your interests? How do you want to address us? What should we do to celebrate the life of a friend who has passed away?
The questions are part of an approach to care aimed at giving people with memory loss and other cognitive problems a greater sense of control and independence. At its core is the idea that an individual with dementia should be treated as a whole person and not “just” a patient.
If you’re an American adult 65 or older, it’s more likely than not that you’re being treated for at least 1 chronic health condition, and there’s a good chance you have 4 or more, according to the Medical Expenditure Panel Survey (MEPS).
The new data, presented in a MEPS statistical brief, targets the prevalence and costs of treated chronic conditions among US adults in 2012. It shows that in the 65 and older demographic, it’s less a matter of if an individual in this group has a chronic condition as it is a matter of how many he or she has: nearly 66% of adults 65 and up reported being treated for at least 2 chronic conditions. Just under 1 in 4—23.2%—report receiving treatment for 4 or more.
Overall, 25.9% of all Americans have reported being treated for 2 or more chronic conditions, accounting for 57% of all health care expenditures. When you add in the 18.6% of Americans who have 1 treated chronic condition, the combined group accounts for 77.7% of US health care expenditures. In the report, “expenditures” is defined as “payments from all sources for hospital inpatient care, ambulatory care provided in offices and hospital outpatient departments, care provided in emergency departments, home health care, dental care, prescribed medicine purchases reported by respondents,” and other services such as prescription glasses and medical supplies.
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.
As the impact of brain injuries becomes clearer, some experts say they are noticing a pattern. Many people with brain injuries are struggling in their efforts to return to work or get the accommodations from their employers to deal with the aftermath.
Carey Gelfand lives in Glencoe, Ill., one of Chicago’s North Shore suburbs. In 2006, she was working at an art consulting company. She traveled with her boss to New York City to attend an art expo. She was wearing a pair of flat-bottom cowboy boots when the temperature dropped and the rain-slicked streets froze over.
“My feet went out from under me and my head just hit the pavement,” said Gelfand.
Gelfand did what many of us do when we get embarrassed after a fall, she stood up and brushed herself off, declaring, “I’m fine, I’m fine…” She kept walking with her colleagues and then boarded a bus. “And I looked out the window and I was thinking, ‘I’m here, but I’m not,’” said Gelfand.
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.
Besides being able to navigate in two or more cultures, people who speak more than one language have a lower risk for developing earlier dementia, according to a new study published in the journal Neurology. In the study, a team of British and Indian scientists tracked nearly 650 dementia patients, taking note of when each patient was diagnosed with the condition. The researchers found that individuals who speak more than one language and who are diagnosed with dementia tend to receive their diagnosis up to five years later than those who speak only one language.
“We know from other studies that mental activity has a certain protective effect,” study author Thomas Bak, a neurologist at the University of Edinburgh in Scotland told USA Today. “Bilingualism combines a lot of different mental activities. You have to switch sounds, concepts, grammatical structures, cultural concepts. It stimulates your brain all the time.”
The research found that the correlation even extended to illiterate individuals — suggesting that the effect has nothing to do with formal education. When the team compared data for illiterate people, those who could speak more than one language were diagnosed with dementia six years later on average.
For the study, the scientists reviewed the medical records of patients who visited a clinic in the city of Hyderabad, the largest city of the southern Indian state of Andhra Pradesh. The team said that selecting this location was important because residents of the city often speak two or three language – typically some combination of India’s official language, a local dialect, and English.
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.