Stories can captivate and hold our attention like nothing else. Sometimes, for those of us working with people affected by dementia, it’s easy to feel like their stories are slipping away, much like when we wake in the morning and can’t remember the details to the dream that gripped us during the night.
I was visiting a Board and Care home in southern Calif. last week and the staff person had everyone arranged in a circle of chairs – it was time for “20 Questions”! “Who can tell me the capitol of the state of Nevada?”, “Does anyone know the year we landed on the moon?” “Who was the president of the United States in the year 2000?” and so she intoned on…The circle of participants was mostly quiet, knowing that if they waited long enough, she would pronounce the correct answer.
Did she know that one of her older participants had worked at NASA during the moon launch? As she passed over him to announce the next question, he began to talk about his work at NASA and watching the launch of the Columbia in July, 1969.
Instead of asking what year the US landed on the moon, what if instead she had said, “I’d love to talk about the moon – what does the moon mean to you? Can you describe the moon? Do you have any stories you can share about the moon?” Without asking a question that has a correct or incorrect answer, perhaps she would have heard Ted’s story about watching the Columbia fly towards the moon in 1969 from his vantage point at NASA. That would be a wonderful story to hear.
StoryCorps is a non-profit organization formed to record and share stories from people all over the United States https://storycorps.me/ . This model of oral history goes back to the 1930’s when the WPA recorded stories from across the U.S. during the depression. It offers a unique opportunity to interview and record for yourself, your family and all of posterity the stories of those people affected by dementia.
This is our chance to hear the stories of those affected by dementia – to listen to their memories of long ago and also to ask them, “How are you feeling now?” “What changes have you noticed?” “What are your concerns?” “Is there anything you want to tell me?” Let’s record them and share their words and wisdom!
There is a free app to listen and record stories – when you search for stories on StoryCorps about dementia/aging/Alzheimer’s, not a lot of stories are available. Let’s enrich that library of recorded memories. Interviews on https://storycorps.me/ range in length to a couple minutes to over an hour in length.
The instructions are simple:
Choose someone to interview.
Pick great questions. Find a quiet place to record. Listen closely
When you're finished, share your interview with the world.
Help create an archive of the wisdom of humanity
Here’s a couple of my favorite stories from StoryCorps – I hope you enjoy,
Please let me know if you share your story on StoryCorps, I’d look forward to hearing it!
Recently 2 different families contacted me about urgently helping them find a good location for care for their loved one affected by Alzheimer’s disease.
In one case, the gentleman was already living in Assisted Living but no one had picked up that he had a urinary tract infection (UTI). The infection became severe and he required hospitalization (a hospitalization that probably could have been avoided if the staff had been attentive to changes in his demeanor and activity). Now that he was being discharged from the hospital, his daughter didn’t want him to return to the same Assisted Living.
In the second case, the woman lives at home with her spouse and she has had a couple falls at night, one breaking her arm. The family was looking for a place where both of the parents could live together, but have assistance during the night.
How do you know what to look for when you are looking for memory care in Assisted Living?
This is a very complex topic, but here are some quick tips:
Licensed or registered nursing, on-site, 24 hours a day, is a big plus! Over 70% of people living in Assisted Living have cognitive impairments and over 90% have multiple chronic illnesses, such as diabetes, hypertension, or cardiac disease that require regular monitoring. If nursing is not available, small health problems (such as UTI’s) can become emergencies and the person is faced with the trauma and expense of what could have been a preventable hospitalization.
You’ll learn a lot if you visit places more than once and at different times of the day. You can stop in unannounced and see how you are received. Ask to meet with the Administrator and the nurse to hear from them what type of services they can offer your loved one affected by dementia. And review the cost of care in detail – if the Assisted Living charges for various “levels of care”, the monthly cost can be a surprise – be sure you have all the details on their charges. And good memory-care locations may be full and have a waiting list – go ahead and put yourself on the waiting list!
If you would like to learn more about how to choose an Assisted Living location that can provide good care for your loved one living with dementia, contact me at:
This is good news! More studies are showing that there are interventions that can decrease cognitive decline. A recent randomized controlled study out of Finland, published in the medical journal Lancet, March 11, 2015 notes that up to one-third of Alzheimer disease cases may be attributed to modifiable risk factors.
You may ask…What are modifiable risk factors? Research is showing that lifestyle choices such as lack of exercise, diets high in animal fat, smoking, excessive alcohol, lack of cognitive stimulation can separately, or together, increase your risk of developing Alzheimer’s or other dementias. These factors are modifiable because they are within our ability to change them. You have the power!
In Finland, over 1200 patients, ages 60-77, who were at risk for developing dementia, were divided into two groups: the control group received general health advice and the other intervention group received focused counseling sessions regarding diet, cognitive training, exercise and monitoring for vascular factors such as hypertension.
The intervention group improved 25% more than those in the control group on scores on neuropsychological tests and those patients in the control group were at significantly greater risk for overall cognitive decline after two years in the study.
This month, let’s make a choice to assess our own lifestyle habits that may be increasing our risk for developing dementia. We have a choice, we can make a difference in how we help our brains stay healthy!
This is exciting! It is great to know that are multiple things we can be doing to help our brain age in a healthy way while minimizing cognitive decline…..I’m making stuffed bell peppers with quinoa tonight for dinner :-), what are you having for dinner?
It was exciting to read that at ALFA’s most recent national conference in May, setting standards for dementia care was identified as a critical issue for their organization. Some studies indicate that up to 60-70% of residents living in assisted living have memory changes such as MCI (mild cognitive impairment), Alzheimer’s disease, vascular dementia or some other type of dementia.
It’s a credit to ALFA that they are making standards of dementia care a priority for their assisted living members.
Providing compassionate and life-affirming care for people living with dementia is complex. The pervasive culture of “person-centeredness”, providing care that is individualized and respects the “whole” person, needs passionate leadership, adequate staff training and engagements that are stimulating and interactive. This type of care is not easy to deliver. ALFA’s focus on setting standards for dementia care will provide the “top down” support for dementia care operators to assess their programs and improve as needed.
Consumers, such as customers shopping for senior housing, may assume there are already standards in place for dementia care. Almost every assisted living sells itself as providing “memory care” for their residents. Unfortunately, not every Assisted Living community has done its “homework” and prepared a safe and life-affirming environment for their residents affected by dementia.
Each state has its own regulations defining which type of assisted living can provide care for people with dementia. There are not national standards. Most states have regulations that require some additional training, but it varies from 6 hours up to 40 hours of training. Some states require that there is nursing on-site or other states may only require a nurse available “on-call”, or no nurse at all. Most states don’t specify staff ratios for caring for those affected by dementia, but will write something vague like “staff must be adequate to provide for the health and safety of the resident” – interpretation is left to the dementia-care operator.
As consumers of dementia care services, it behooves us to ask questions. If you’re moving into a memory-care assisted living, what are their standards? Can they explain those standards to you and also explain how they operationalize them – how many hours of training does their staff receive? What is the ratio of direct care givers to the residents? How do they handle emotional outbursts (behavioral expressions) by residents? Do they have a medical director or other health care providers who visit the residents on-site? What is their system for handling a resident who becomes ill?
As customers of dementia care, we can help improve standards of care by asking questions of our assisted living operators and showing them that compassionate care is the standard we expect!
What happens after the blood tests and body scans and psychometric testing is all finished and the doctor tells you that the diagnosis is dementia? Maybe the diagnosis is Alzheimer’s disease or Lewy Body or Vascular dementia or Frontal Temporal…there are dozens of causes…
With almost any medical diagnosis other than dementia, the doctor is able to give you clear direction on the prognosis and treatment plan. If you have cancer, if you have heart failure, if you have arthritic joints, you’re handed a name of a specialist – an oncologist, a cardiologist, an orthopedist to make an appointment with and receive your specified treatment plan. Even when the outcome is dire, there is always some treatment to hold out hope for.
But with dementia, the 5th leading cause of death in people over 65 years old, there is no prescription or therapy that will hold out hope of a cure for a diagnosis of dementia. Families go home and are left to ponder what comes next.
In my many years of working with people affected by dementia and their family care partners, I’ve seen so much heart ache and emotional trauma that could have been avoided. Because the physicians can’t prescribe a curative, or even a stabilizing, treatment, the affected person and their family are left to themselves, to figure out on their own their path on the journey with dementia.
Absorbing the news of a diagnosis of dementia takes some time, but it’s also a call to action. Hopefully the person receives the diagnosis when they are still in the early stages. This is the time for a person living with dementia to begin to initiate planning what they want for themselves as the condition progresses.
Good care for those living with dementia integrates both medical and social care. There is no magical medical treatment to stave off the dementia, but there are some wonderful options for care, either in the private home, or in a residential environment, that can bring joy and good quality of life. Vague statements like “I always want to stay at home”, or “Don’t put me in a nursing home” don’t really assist in making good plans for the future.
Receiving the diagnosis is an opportunity to look at your individual circumstances – finances, support systems, and care options. Do you need to move closer to family? Do you have an elder law attorney who has prepared your papers assigning your financial and health care designee? Have you interviewed local care-giving resources? Have you visited local memory care facilities? Which option gives you the best opportunity to maintain your dignity and spirit and joy of living?
Begin to write down your questions and formulate a plan for obtaining the information you’ll need to have a good quality of life through your years ahead.
Less than half of people diagnosed with Alzheimer’s disease or their family caregivers report receiving a clear diagnosis from their medical provider. Doctors and nurses are smart people. How could it be that only 45% of people with Alzheimer’s disease are told about their diagnosis?
Could it be that the medical providers don’t know how to diagnose Alzheimer’s disease or other types of dementia? Maybe, sometimes it is not clear-cut. Certainly, other medical conditions such as stress, depression, adverse effects from medications, and illnesses such as diabetes or kidney failure can make a person confused and lethargic. But in today’s medical world, there are tests that can be done to rule out other diseases and with a high degree of accuracy, dementia can be diagnosed.
I disagree. Receiving the correct diagnosis and having it clearly explained can be an empowering “call to action." While there is no curative treatment for Alzheimer’s and other dementias, receiving the correct information allows you to be an active partner in decisions that will affect you the rest of your life.
In the report from the Alzheimer’s Association, they note that more than 90% of people with the four most common cancers — breast cancer, colon cancer, lung cancer and prostate cancer — got a clear, verbal diagnosis. "These disturbingly low disclosure rates in Alzheimer's disease are reminiscent of rates seen for cancer in the 1950s and '60s, when even mention of the word 'cancer' was taboo," said Beth Kallmyer, vice president of constituent services for the Alzheimer's Association.
If you or a loved one is experiencing changes in memory or judgement, meet with your doctor, ask for the necessary tests and require full disclosure of the implications of all the tests. It’s your right to know you’ve received the correct diagnosis and to obtain a second opinion if necessary.
An early and documented diagnosis, when coupled with access to care planning services, leads to better outcomes for individuals with Alzheimer’s as well as their caregiver. Wouldn't you rather know the truth than be kept in the dark?