We all hope that we, and the people we love, will not develop Alzheimer's disease--and with good reason. The truth, however, is that it is possible to have a decent life with Alzheimer's disease, even though most people don't believe it.
Almost everyone believes that Alzheimer's ravages the brain, destroys a person's memories, ruins relationships--in fact, destroys the person's entire self. No wonder that a 2010 survey of 1,007 adults by Harris Interactive found that almost as many people in the U.S. fear "getting" Alzheimer's (31 percent) as fear cancer (41 percent) and that the fear of Alzheimer's increased over 50 percent since 2006--more than any other disease. Despite this large attitudinal shift, fully 62 percent of those surveyed also said they know little or nothing about Alzheimer's.
In fact, a great many people in the first 10 years of this condition live their lives to the fullest--renewing and deepening relationships with those they love and who love them.
For example, Jim Murr in South St. Paul, Minnesota lived with and loved his wife Jean for 10 years after she developed Alzheimer's. Jim wrote a beautiful love letter to her after her passing in the form of a short book describing her life and their life together with dementia during which "Jean awoke with a smile every morning," filling his heart with joy.
Another example is the 300 people living with dementia who come every three months to the Coolidge Center Theatre in Brookline to see clips of iconic films (think the "we'll always have Paris" scene between Bogart and Bergman at the end of Casablanca) and share their memories the films bring to mind.
What Can We Hope For?
One thing we can't hope for is a magic pill that will cure Alzheimer's. There is much research going on, and from time to time we hear about promising developments. So far the best medications can do is to slow the progressive loss of cognitive capacities. But no one expects a cure anytime soon. We will be living with Alzheimer's for the foreseeable future.
We can hope for more and more use of nonpharmacological interventions that help people with Alzheimer's live a better life for as long as possible. As I have detailed in my book, "I'm Still Here," there are a myriad of ways to help people with Alzheimer's overcome "behavior" problems and emotional suffering that are built on the perspective that a person with Alzheimer's is still a person with interests, desires, and abilities.
We can also hope for neighborhoods designed so that people living alone or with their families can more easily find their way to a shop and back home. We can hope for cinemas, museums, and coffee shops that are "Alzheimer's-friendly" with trained staff and special programs and events designed to engage customers with cognitive challenges.
And, we can hope for a reduction of the public stigma surrounding Alzheimer's so that those living with dementia are not isolated either at home and in institutions by our fears and theirs.
What Can You Do?
If you have been diagnosed with Alzheimer's disease, you can stay active and involved with other people. You can pursue long term interests and even learn a new skill. Many people find great satisfaction in art, both doing it and viewing it. Others find satisfaction in old movies that keep their memories alive, concerts with music that brings pleasure, taking walks for exercise in familiar settings. If you have ever spoken a second language, keep it up and perhaps take a refresher course.
If you are living with, or caring for, a person with Alzheimer's you can focus on the moment--even the little joys like a smile in the morning--rather than being driven by fear of an unknown future you imagine from the bad news you read and hear. You can arrange to go on a preplanned and well organized cruise together. You can find the museums in your city or town that offer special tours for people with memory problems and attend regularly. You can organize your life with the person you love around things you like to do--playing golf, going to concerts, going to sports events.
You can also become active in your community and advocate for it to become "dementia friendly." Contact your local senior center and Alzheimer's Association as well as the Mayor's office and the local department of the aging to encourage them to become "dementia friendly."
Most important, do not accept the common view that Alzheimer's is always and only bad news. It's a terrible disease, but a diagnosis of Alzheimer's is not the end of life, by a long shot.
Alzheimer's disease - Wikipedia, the free encyclopedia
Alzheimer's disease - MayoClinic.com
Alzheimer's Disease Center: Dementia Symptoms, Diagnosis, and ...
Alzheimer's Foundation of America - Caring for the Nation
Larry King Returns to CNN for Alzheimer's Special
Alzheimer's conference features Gail Sheehy, highlights life after diagnosis
When such treatable conditions coexist untreated in the patient who has "a diagnosis" of Alzheimer's dementia, these conditions can increase symptoms which the doctor will then assume to be part of the normal process of the diagnosed disease. Alzheimer's and other dementias are real; but so are coexisting treatable conditions which, when untreated, can vastly increase the patient's and their caregivers' troubles.
Most will not see anything like a good 10 years living with alzheimer's, before they start slowly and hideously dying from it. Tragically, the dying stage may go on for much longer than the living with alzheimer's stage.
My Mum was diagnosed 7 years ago and the lowest dose of galantamine slowed her decline extremely well. She is still living with alzheimers, but is deteriorating and has certainly not been able to learn a new skill for at least 3 years.
Her deterioration has been hastened by the stress and anxiety caused by my Dad's diagnosis of alzheimer's which came only 2 years ago. An entirely different story; on the same medication, he's already at the severe stage and is most certainly dying from this most awful of diseases.
Alzheimer's killed both their mothers 25 years ago. The odds are not great for my future.
I strive to make the disjointed and poor dementia provision (in the UK NHS and social care systems) work for my parents. Trying to keep them together and in their own home seems to constantly challenge expectations; service provision does not favour this choice beyond the moderate stages.
There is a great deal to be done to make our care systems dementia friendly…thank you for highlighting the need. It cannot be said too often or too passionately.
http://twitter.com/DazeInOurLives
Two months ago my 84-year-old husband died from a massive brain tumor on his right parietal lobe. The symptoms of the tumor had been diagnosed "dementia."
Seven years ago Dr. G gave my husband a diagnosis of dementia based "solely" on an interview, which he did in my absence. Then he put him on Aricept. Dr. G had not done a CT brain scan. My husband's last two primary care doctors (Dr. T and Dr. L) at that clinic apparently failed to question how the first doctor arrived at his diagnosis; hence my husband had his first CT brain scan just before Christmas last year, in the ER, after he had fallen against a tree and hit his head. That is when the large mass on his brain was discovered.
This brain tumor might have been removed surgically had a brain scan been done early in its growth. The clinical diagnosis of dementia, which had as its basis nothing more than an interview, probably killed my husband. By making that diagnosis, Dr. G was able to put my husband on Aricept (which made no quantifiable difference, except that it caused him years of diarrhea). Dr. G left the clinic years ago. Several of his patients are still there, and are now seeing Dr. T or Dr. L.
But he always kept one part of his memory alive.
Ever since his great grandson, at the age of 13 months, visited him in the hospital - that's the only person that Grandpa ever remembered consistently.
He'd confuse me with my grandmother, sometimes he'd know my Dad, but the baby - he knew him until the complications of alzheimers and parkinsons finally took him.
They had a special relationship that we'll always treasure.
Most here are latter stages Altzheimers; it's become too hard for working children and/or aging spouses to do the care required, like heavy lifting from bed to wheelchair, when it's no longer possible to feed themselves, they can't speak enough to make their needs known; are totally incontinent. This is a tragic thing, and people should be prepared for what this entails.
Longterm care will often be necessary- with the constant cuts to Medicaid, and plans like Berger Commission, Simpson/Bowles,and Paul Ryan's - many nursing homes will be closing. The caring staff here feel they are in danger of losing their jobs - and the residents they have come to love.
G0d Bless all of you dealing with this, and your loved one.
Great ideas..
For just one example, saying that "a great many people in the first 10 years of this condition live their lives to the fullest" is unbelievable. A great many people die in the first 10 years of this disease. Prior to those deaths, there is a painful, severe decline in mental and physical abilities. Even when they are still functional, they and their families are living with a terminal illness, and the pain that causes is beyond description.
I would like the author of this article to spend the next ten years isolated with a loved one to care for (while he lost his life savings, his own health declined, and his heart broke in a thousand pieces), and then read his update on how he views Alzheimer's. Or maybe he should try to comfort a loved one whose heart was breaking after their diagnosis, and see how that made him feel. When you watch someone you love so much struggle with even the simplest daily activities, and see the pain and fear in their eyes, and then read claptrap like this about how we should be enjoying our lives, it just defies an adequate response.
*But you're gonna wish it were
I guess all I can say with all my first hand knowledge of this disease over the course of the last decade is twofold:
I wholeheartedly agree with Angie Dickinson.
If you have seen one Ahlzeimer patient, you have seen one Alzheimer patient.
Alzheimer's is the disease of the silent. Patients become the object in the room that brings family members together, but conversations and life go on AROUND them, not WITH them. My grandparents (both Alzheimer's patients) were frequently heavily sedated and parked in wheelchairs in the facility's hallway...proud, hardworking people reduced to scenery. My grandmother relived the death of my grandfather daily. My grandmother could still FEEL.
There's no beauty in watching any life take a tragic turn. We'd never tell a paraplegic that they're lives are tragic losses - we stand in awe when they overcome their challenges. I would've welcomed the opportunity to connect with my grandparents on their level instead of mine...finding joy in simple things instead of mourning that she couldn't remember my name or my antics as a child. Why has Alzheimer's become about us? Why can't we meet our loved ones where they are?
And to the points about Alzheimer's care being all about profit, take a look at the medical and pharmacological fields in general. I have far more issues with a facility accepting payment with no value added to the patient than I do with a facility who is trying to give my loved one a more joyful life.
Thank you again Dr. Zeisel!