What causes the stigma and fear? It’s the stereotype of dementia: someone who cannot understand, remembers nothing, and is unaware of what is happening around them. This stereotype tugs at the heartstrings and loosens the purse strings, so is used in seeking funds for research, support and services. It’s a Catch 22, because Alzheimer’s associations promote our image as non-persons, and make the stigma worse.
— Christine Bryden, Austrailian Advocate Living with Dementia
On January 25 PBS will air Alzheimer’s: Every Minute Counts, a documentary framed as “an urgent wake-up call about the national public health threat posed by Alzheimer’s disease.” The film starts with phoned in quotes about the tragedy of Alzheimer’s from the perspective of care partners overlaid with dramatic images and music and then goes to experts with catastrophizing predictions such as, “It is going to sink the health care economy and in turn sink the national economy” and “It will take us down, this disease will take us down.”
The film details only one side of the story when it comes to Alzheimer’s. The result highlights just how hard care partnering can be without giving voice to people living with dementia or how society causes much of this suffering. The film uses scare tactics in the name of safety without respecting the dignity of taking risks which those of us without a diagnosis take for granted every day. The film speaks about mounting medical costs with no mention of innovation or social capital. It warns us of the hardships of people living with dementia in isolation without highlighting communities who are banding together and helping each other live well regardless of cognitive ability. The film pathologizes “wandering” without asking how people are getting creative to protect the freedom to go where one chooses. The film interviews only one person living with dementia and the interview takes place immediately following her being given the diagnosis. The single ray of hope and possibility for living well comes at the end of the film when a family care partner is supported by hospice and remarks, “I have always been against any kind of help because I thought I would have to put her in a home or something, and I was totally wrong.” The film concludes with a plug for medical research funding as the only possible thing one can do about this so-called crisis.
“How depressing! Where is the hope and encouragement for those who are being diagnosed now?” Larry Klika, a retired pharmacist in Missoula, Mont., diagnosed with Alzheimer’s disease in 2015, said after watching an advanced screening of the film provided by ChangingAging.org with his wife Linda.
There’s nothing new about this film’s focus on the tragedy-only narrative of dementia, designed to catch media attention, social and otherwise, by stoking and feeding on our deepest fears about aging. We are calling on the ChangingAging community to take a stand and show the world that there is more to the story. Let’s enact one of the most important words in our language: ‘and.’
Yes, medical research is important AND so are ways to make our communities and ourselves more dementia inclusive. Yes, there is suffering associated with Alzheimer’s AND much of this suffering is socially imposed by the tragedy-only narrative and can be alleviated through perspective shifts. If you watch this film on January 25, please do so with the word ‘and’ at the top of your mind. Where does ‘and’ need to be added? Where is only part of the story being told? Where is suffering being added rather than alleviated?
PBS and underwriters for this documentary, such as the Alzheimer’s Association, have mounted major publicity and social media initiatives around this program. Together, we can be sure that the voices of people living with dementia and their allies are also heard!
For inspiration we reached out to some of our favorite experts (those living with dementia) and allies, and here is what they have to say:
Nowhere in this documentary does it mention the positive effects of exercise, socialization or a healthy diet. These have all been shown to slow down the progression of Alzheimers and in some cases prevent the symptoms from ever occurring (i.e. The Nun Study). We are talking about people here not just dollar signs. We deserve to live the best life we can for as long as we can! We need to encourage Dementia Friendly Attitudes in our Communities to help this become a reality.
— Larry and Linda Klika, founders of Living Well With Dementia in Missoula, Mont. (Larry asked we also tell readers he loves running, enjoys being with his grandchildren and, as Forest Gump would say, “That’s all I have to say about that.”)
There are almost 50 million people currently diagnosed wth dementia globally, and this is possibly a gross underestimate if we factored in that in the USA, only 50% pf people get a diagnosis, and in countries such as India, less than 10%. Of course, as a person diagnosed with a dementia, also representing the global organisation Dementia Alliance International, I would like a cure, but let’s get real. We want better health care, better support for ourselves and our families, and a focus to be on our human right not only to a diagnosis, but to rehabilitation and disability support to enable independence for longer. This film simply highlights the negative and disempowering discourse of tragedy, told from the perspective of family carers, even though people with dementia have been advocating there must always be “Nothing about us, without us.” It continues to support the many myths including we are all end stage in our dementia, people with dementia cannot, and do not live good lives with dementia, and that we are unable to contribute in meaningful ways to our communities. It is wrong to continue to highlight the losses, in order to elicit money, for research or running advocacy organisations, especially when 67 years after the UN Declaration on Human Rights was signed, the OECD concluded in 2015 “Dementia receives the worst care in the developed world.
Tragedy sells but there is a market for hope too.
In an ageist society, worse than old is very old, and worst of all is very old and incurably ill. Add to that the tremendous stigma that accompanies mental impairment of any sort. It’s a quadruple whammy if you take into consideration the fact that family members often feel stigmatized by association. Fear-mongering of this type only deepens the stigma—and the burden on everyone involved. People with dementia are not as “lost” to an incurable disease—and therefore lost to us—but still present in various ways, with ongoing human needs for affection, connection, and expression. Let’s tell that story too.
Alzheimer’s, like any aspect of illness or wellness, is part of the human experience. It brings many life challenges, but also opportunities. Many advocates living with the diagnosis around the world are showing us how it is possible to live well with dementia. People living with Alzheimer’s are writing books, giving testimony at the UN and WHO, volunteering in their communities, creating art, or engaging with preschoolers in intergenerational programs.
There are two serious consequences that spring from the discourse expressed in this documentary: One is that such a stigmatizing portrayal of people with dementia leads us to disempower and marginalize them, causing excess disability and actually increasing the burdens on families and care systems, financial and otherwise. The second is that an inordinate focus on cure suggests that your only path to a life worth living lies in us being able to make you more like the rest of us. This creates an underlying message that difference and disability are not to be valued or tolerated, and that creates a dangerous world, into which we will all grow old.
I live in a community in Seattle that welcomes people living with dementia and provides an incredible abundance of creative and fun opportunities to engage and contribute to the community. We can pursue both medical research on dementia AND community development in support of living well with dementia. But we can’t pursue one at the expense of the other. The stigma and fear created by the tragedy-only narrative are real and contribute to isolation and make it that much harder to support people living with dementia. We can help alleviate the stigma and fear by taking a “nothing about us without us” approach.
— Kavan Peterson, Editor and Director of ChangingAging and President of Harvest Home Care
Add your voice in the comments below and join us on social media using the hashtag #EveryPersonCounts!
DOES HERBS WORK FOR DEMENTIA?
This was the same question that prompted me to read further a testimony I saw on a blog. I would like to tell a story – hoping it will be useful to others – of my struggles and achievements with Dementia. I was diagnosed a little over 4 years ago, No doctors I met have any treatment or even suggestions apart western medications. I even sought advice on Youtube, to no avail. After using the conventional approach to medication treatment without improvement. I am glad something happens fast. There have been suicides due to people not being able to continue on living with the endless memory challenges. It is horrible. I learned about Dr. charanjit herbal medicine that works effectively for me without any negative effects. I have returned back to my normal life and I hope that the symptoms do not return again, It really helped me! If you have Dementia kindly contact Dr. Charanjit for help and necessary solution ([email protected])
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Having Dementia disease knocked my grandma off her life and had her living like a mad person, I didn’t know how the better part of her life eluded her, my mind was completely splatted in two, She showed a severe decline in her mental and cognitive skills in the last few years of her life and her quality of life had deteriorated greatly in the last 3 years of life where she was mostly bedridden. I am very glad my partner sought help and now she is free from all signs of psychosis. She was healed through the herbal medicines from Dr Charanjit, I do not wish to go the same route and I manage to live a fairly active and healthy lifestyle.
Here are her words “Finally, can you imagine what it would feel like to be NORMAL again, like I were before I was struck down by this horrible condition that you never asked for, and don’t deserve?” Sounds great doesn’t it?
You can contact him via email [email protected] He is well known for his groundbreaking treatments concerning the brain and mind issues.
I’d like to call attention to an alternative PBS documentary on dementia that is far superior in quality to “Every Minute Counts” but did not garner anything near the level of publicity from leading Alz advocates. Nashville Public Television recently aired the documentary “Aging Matters: Living With Alzheimer’s and Dementia”: http://www.wnpt.org/agingmatters/home/alzheimers-dementia/
You can watch the full episode at that link and judge for yourself the difference it makes when you add the AND to the conversation and address how stigma and myths surrounding dementia hinder better living. I highly recommend the entire “Aging Matters” series produced by NPT (full disclosure: Dr. Bill Thomas appeared in the first episode of Aging Matters).
I came her several times but I was not going to comment. I guess I could not resist. I cannot understand for the life of me why those in the dementia field attack others for trying to do good that can ultimately help the mission. We all have a mission and role in this arena. That does not mean we need to try to make a name for ourselves at the expense of others. Please do what you do best and let others do what they do best. Together we will all benefit. I can tell you none of you have it right because none of us are perfect including I. I am thankful for this move and the timing of it could not have been better. And when it comes to research folks it is a lot more than just drugs. It covers everything around us that is helping those caregivers and the people living with dementia today. I know most people will disagree with me about this but you need to get out of your circles and bubbles and really talk to people that are affected by the disease not just people like me. I can tell you we are the exception.
Hi Michael — It was terrific talking to you earlier this week and I’m very glad you decided to join the conversation here. Today we published a new article from Dr. Al Power that delves deeper into the very real, very measurable harm that is caused by the targedy-narrative advocacy approach embraced by this film (and as you said on the phone, whole-heartedly embraced by yourself): https://changingaging.org/dementia/living-well-dementia/
I also recommend you read Dr. Bill Thomas’ essay about the tragedy narrative: https://changingaging.org/blog/a-hundred-miles-in-their-shoes/
I’m curious if you’ve read Al Power’s book Dementia Beyond Disease? https://www.amazon.com/Dementia-Beyond-Disease-Enhancing-Well-Being/dp/1938870131
I challenge you to read it and reconsider your accusation that we are in a bubble.
Hi Kavan,
I also enjoyed out conversation. I did read DR Power’s post and agree with most of it. I have great respect for DR Power’s and he has a mission he is on and so does the folks who made the movie. If we want to change and influence government it will take a move like that to make it happen. I cannot begin to tell you how many people say to me you are okay with the help of drugs because they see the TV commercials. They think it just memory lose and have no idea I am dying. People need to know the reality of the horror and that does not mean we can not try to live life to the fullest along the way. Hell I invented that term in the dementia arena. But don’t let that fool you because it’s very best it is still a sad story inside me. I so wish it was not but I can face reality and I know very well what is ahead of me. Much of the judgment is made on about 300 people with dementia. What about the other 7 million. I speak to them and they cannot even get out of bed or even walk. 4 people took their lives this month alone. Yesterday morning I was taking another one out of it. Last week I spoke to a caregiver who wanted to end her life because her mother with dementia starved to death from no longer eating and she felt so guilty for not doing more. I am still trying to convince her and I am not sure it will work. So in my opinion that move should have shown a much darker side. I spend $12,000 for my mother and she lives in a hell hole and there is nothing I can do as her money is running out after 5 years. So in reality we should be thanking them for making it look better. Most of the caregiver I have seen seem to agree with it and made similar comments that they should it on the good side. So I think if you get past the people here who made many of the comments you will find it very differentl. And for those who think it is great I ask them to start a list and let me know what is so great about having some form of dementia. Maybe I am missing the good.
This article may help to make more sense in my thinking.
http://www.usagainstalzheimers.org/blog/mixed-feelings
Kavan, I had forgotten all about that documentary, but when I saw Paulan I remembered when they sat in on our Dementia Mentors’ chat one day (of course with each person’s written consent), LOL. THANKS for reminding me. Yes; excellent film. — Tru
The PBS documentary was “Alzheimer’s 101”; Dr. Thomas, you and your team are the master class! I love the concept of “AND”! It’s not so much right vs. wrong thinking, but rather looking beyond – reframing – the “tragedies”, be they personal or financial, AND finding more. Even planning for more.
I watched with two perspectives – how we need to better help those needing care today AND how we need to better plan ahead when we have the opportunity:
1. I thought the documentary did a good job of presenting the “basics” in a clear, accessible format – including that Medicare doesn’t pay for custodial care, Medicaid only pays for what most people don’t want and/or in a way that does not promote the best person-centered care, and that caregivers are dramatically impacted as well, personally and financially. If anything, I hope Daisy’s story makes people realize that there is help available and even a few hours a week can change a caregiver’s life and experience in providing care.
2. The program indirectly highlighted how even a little advanced-planning could change the narrative. We need to do a better job having “Essential Conversations” with those we love much sooner. (See https://essentialconversationsproject.com/ ) And while not a panacea, LTC insurance with even a small benefit can have a huge impact. Too many people – including financial professionals – fall into the trap of thinking you have to buy 100% coverage for 100% of the possible costs you might ever face – of course that’s unaffordable. What would an extra $3000 a month in benefits have provided for Daisy? A 2-year policy could provide the time or enough “key money” that someone like Rick could use to navigate a more proactive transition to Medicaid for his mom (let alone the new Medicaid “Partnership” asset protection benefits).
I had the great privilege of attending your Disrupting Dementia workshop & performance in Chapel Hill, NC, last year and it has had a profound impact on my thinking about this disease and my long-term care planning/LTC insurance practice. (As did your “Hannah” tour in the mid-90s which I was proud to help sponsor in St. Louis!) I’m looking forward to what’s coming next… and I now have DAYS of reading ahead of me thanks to all the links shared just in this single chain of comments!!!
http://www.ComfortLTC.com
Today I had the privilege to watch a preview screening of PBS’s “Alzheimer’s: Every Minute Counts.” It is a factual and heart wrenching documentary of the Alzheimer’s epidemic in our country. For myself, a person living with Alzheimer’s, I am very appreciative to PBS and the sponsors of this program for producing this documentary. It illustrates the tragedy of living with Alzheimer’s and other dementias in our country and what the disease does to our loved ones and ultimately to those of us with the disease.
I have a very personal stake in the awareness and funding for finding a cure. I am in a clinical trial myself and doing all I can to support the Alzheimer’s Association to help them fund research and social programs for caregiver and those of us living with all types dementia. In one scene the documentary illustrates very passionately the need for clinical trials and volunteers. I hope this message resonates clearly from the program and continues to be a focus in the cause.
The program discusses many hard facts that our society and culture need to be aware of regarding the financial burden faced by families with a loved one living with Alzheimer’s. Until I was diagnosed my wife and I had no idea of the financial difficulties and intricacies that we may be faced with as the disease progresses. These are very dark topics but it is necessary for our society to be made aware of these things. We cannot live with our heads in the sand.
One point that is made very clear in the program by the obvious lack of its inclusion is the enormous deficit in dementia friendly community awareness. Living with Younger Onset / Early Stage Alzheimer’s and an active life I can tell you there is very little to no dementia friendly locations in my state. Our society needs to be aware of the darker side of Alzheimer’s and dementia but also be made aware of and recognise that we’re all still here, living, and many of us are still very able and capable of contributing.
Other than my critique that the documentary lacked any real substantive demonstration or awareness of the more positive points and support for people living with dementia there is another critique I compelled to point out. A nurse featured in the documentary refers to her patient several times as a “demented patient.” I was so deeply hurt and offended when I heard this. Referring to a patient, a person, as “demented.” Such a arcane, insensitive, medieval term. This is one very good reason why there is such a stigma attached to the dementia community. Footnote, I would prefer to see us have a different term other than dementia all together. We need to change this thinking and work to make our communities more dementia aware, friendly and inclusive. We have a voice and the program does demonstrate that as Daisy, a featured woman living with the Alzheimer’s gene (not yet diagnosed), is shown advocating to congressional representatives on capitol hill for research funding.
Finally, I do recommend to everyone they watch PBS’s “Alzheimer’s: Every Minute Counts.” More awareness is needed to help defeat this horrific disease. We must not let up. We cannot give up.
Thank you for your comment. I work in assisted living as an activity director and know many seniors living with dementia. Although the info in this doc was hard to hear it was also very real. There is hope but thank you because you said everything I wanted to say but much more eloquently!
After viewing trailer and then film-preview, My PWD response is way terrifically too long to post here. It is my blog entry for this week at
http://truthfulkindness.com/2017/01/25/film-review-for-alzheimers-every-minute-counts/
Truthful L. Kindness
I absolutely loved your review. Thank you for adding your voice to the conversation.
I think the movie does an excellent job of heightening awareness of the tremendous impact socially and financially dementia has not only on the individual but also on the family, society and the economy itself. It very specifically and convincingly demonstrates how dementia can produce such a rippling effect throughout our world.
It is one of the first documentaries I have seen that focuses quite a bit on the impact dementia has on family members. It not only shows the emotional impact of the disease (stress of care giving and the possibility of family members receiving a similar diagnosis), but it also illustrates the financial impact on the families as they struggle to give up their own occupations so that they can continue to keep the individual with dementia home as long as possible. It then goes on to show the financial costs of placing an individual in a home of an appropriate type and wonders where the money will come from as the number of people diagnosed with dementia continues to multiply.
A few things bother me about the movie. The term “demented” is used repeatedly when referring to someone with dementia. It also claims that people with dementia can’t lobby for disease research themselves. I know that this is an erroneous statement from personal experience. In fact I think these are the best people to lobby for research and financial investments.
I think the movie would have been greatly enhanced by including the voices of those living with a dementia diagnosis and see this as the primary flaw.
I have mixed feelings on this. Yes, it does focus only on the stigma of someone unable to care for themselves. It was very typical, and yet very disturbing, the way Jean’s doctor presented her with the doom and gloom – go home & put your affairs in order, nothing more. Once again no hope, no encouragement and no support – very sad!
In order to press government for increased care, increased support, increased awareness and increased funding, we need to show there is a tremendous need. Many of us have expressed our frustration with people saying “You don’t look or act like you have dementia” – if this is the way government feels they will not have the compassion for the cause. The cause needs to tug at their hearts and make an impact. To me, more important than the language and stigma is the financial changes that are needed.
I was happy that the documentary highlighted TWO people under age 65!!!!! They could have highlighted that there is no age barrier a bit more, but at least they did bring some younger people into it.
At first I was concerned with the comment :”The people with the disease, for the most part, cannot lobby for themselves.” However after listening to it again, I agree with that statement. Yes there are many of us fortunate enough to speak for ourselves, the majority cannot.
In my opinion, this film should help to increase the awareness that dementia is becoming an epidemic and hopefully will pull some government heartstrings.
Love & Laughter,
Laurie A.Scherrer
dementiadaze.com
I just finished reading an email with the subject, ‘PBS Alzheimer’s documentary excludes the voices of its subjects .’ I was moved to comment. I hope that you will take the time to read my perspective.
Your article makes some good points particularly applicable to the early stages of Dementia and Alzheimer’s. However, as the disease progresses it does become extremely bleak and most of those points you discuss no longer apply. The later stages can last several years as I have personally discovered. While many people view the diseases under the umbrella term of Dementia as simply a matter of being forgetful and slowly losing one’s memories, it is so much more than they realize. Until they witness it first-hand they cannot understand just how horrific the disease can be for those who choose to care for the afflicted person. Please let us not white-wash the issues! While there are strides to improve the quality of life, they are simply a drop in the bucket. Furthermore, in the early stages, the patient can live a relatively fulfilling and normal life, a full and happy environment, and lots of activities; while later, it is incumbent upon the caregivers to create a satisfactory environment for the patient.
I read your comment that is harmonious with the public view and opinion today that if one eats right and exercises Dementia will probably be delayed or not happen at all. Respectfully I say, that is not true I know of so many with Alzheimer’s or some other form of Dementia who have done everything right (my mother included). In my mother’s case, she was physically active, she exercised daily, ate wholesome food, grew most of her own fruits and vegetables, she performed mentally difficult tasks on a daily basis, learned two new languages after the age of 65, played the piano every day, got lots of sleep, and was mentally engaged with friends and family. Perhaps my mother might have gotten Dementia earlier, but when it did hit, it hit hard. When Mom was in her early 80’s we saw that she was becoming quite forgetful and needed help with banking, errands, meals, and even dressing. She went to live in a retirement community at 90 with what was called independent living but had lots of help with her daily activities. She would be the first to tell you how happy she was, but as time progressed it was evident that she was ostracized by those more capable than she. Often, we would find her sitting alone at mealtime. She would go to bed at 6:00 and then wander through the halls at midnight. The retirement community was expensive. Five years later Mom was still going strong (physically) but she was out of money. We moved Mom in with us so that we could care for her.
The toll Dementia takes on families and on the individual is undeniably difficult. The financial toll is horrible. The personal physical, emotional, and life toll on the care givers is indescribable. Certainly there are things that are being done to help with this epidemic, but not enough and not quickly enough. The aging baby boomer population is rapidly advancing into the realm of dementia-prone people. When one is afflicted it can take years for the disease to take hold; but take hold it will! The financial cost to the individual and the family is second only to the emotional cost. To stand by helplessly watching as one’s loved one cries over forgetting who the person standing in front of them is only to learn it is one’s daughter or son; to watch as a parent forgets how to hold a fork, how to read, how to draw, how to dress, how to bathe oneself, and even how to go to the bathroom; to do the things we must do that we never dreamed we would ever have to do for a parent…compromising their dignity, and their modesty, is awful — truly awful! But that is just for starters. When someone with Alzheimer’s is still mobile, they must be watched carefully. There are safety issues. My mother, for example, puts EVERYTHING in her mouth. She is in the ‘oral stage’ as she reverts to infancy. I have caught her tasting everything from bacon grease to coffee grounds. She surfs the counters looking for anything that resembles food. Colorful birthday candles become candy, nail polish becomes a liquid sweetener for her coffee. I could go on and on. Many care givers resort to professional care in memory care homes. Those range in price across the country from $6,000 to $11,000 per month! That is an average of $100,000 per year. When the average family in America is earning about $48,000 a year it is a bit difficult to reconcile the cost. Caring for a loved-one at home becomes a full-time job. This means that people must sacrifice their own paying jobs in order to devote more time to watching their loved ones. THIS is the problem today! THIS is our REAL issue that faces American families more and more. Insurance, Medicare, government programs are not helping. I can’t begin to tell you how many people suggest that my mother apply for Medicaid. When someone receives too much money from investments or Social Security (and by that I mean anything over approximately $1,000) they do not qualify for Medicaid. They are too poor to afford the luxury of professional help and too ‘rich’ to get any public assistance. They slip through the cracks and families must pay for all of the supplemental costs of keeping them alive.
I am here today as a caregiver to my 97 1/2 year old mother who has had Alzheimer’s for 15 years. The past three years have required full-time care and careful supervision. She is physically healthy but mentally diminished. I am a spokesperson, author and advocate for caregivers. Let the doctors speak to the disease, do the research, increase understanding of the pathology that leads to the various forms of dementia. I speak to the lives of the care givers, the immediate families, the friends, relatives and acquaintances.
I do not know how many of you are active care givers but for those who have watched a loved one die from a form of dementia they know what it is like and what they are left with afterwards. A friend of mine whose husband died of Alzheimer’s six months ago, spoke with me today. She and I were commiserating about how a walker can destroy a home. I complained that every wall and cabinet, every piece of furniture has big nicks and scrapes in it. I have complained that there are paint chips, and spills and stains throughout the house. In my blog and my books I speak to the myriad ‘accidents’ that must be attended to. The washer and dryer are in constant use. Just one example: my mother walked over to her TV-watching chair, pulled her pants down and urinated. She soaked her panties, the chair and the carpet. We had to clean the carpet, the chair pad, change her clothes, and deodorize the area. It took an extra hour out of an already full, busy day. The things we don’t think about…the little day to day things that require extra work, extra costs, extra time: the panties that Mom flushes down the toilet clogging the plumbing, the lost hearing aid that Mom has thrown in the trash or tried to eat, the china plates that she throws in the trashcan, the mail that she takes off the counter including bills that we don’t see that end up in the bottom of her walker under soiled tissues, the missing wallet, phone, money, silver, etc that she sees as hers and squirrels away in hiding places, the folded family laundry that end up in Mom’s room beneath her own linens while we look everywhere for our missing socks, sweaters, undergarments, etc.; these are all just the little things that keep us exhausted and frustrated. Add to it the lost hours of sleep as we deal with the wandering at night, the calls to us, the interruptions that keep us on edge, the alarms that alert us that Mom has opened a door she shouldn’t open, or a call for help at 2 AM!
I submit that it is the need for later life, advanced stages of Dementia that should be creatively addressed and not just for the patient but for respite assistance for the home caregivers. Only they know and appreciate how bleak things can be.
So…yes, I will watch the PBS special and commiserate with the negative message it delivers. To those who see hope and progress I say, “God bless you and keep you naive and unaware.” For those of us ‘in the trenches’ Dementia is worse than any four-letter word I can think of.
Jessica Bryan
Author of I Am Not a Village
919 272-0699
Visit my Caregiver blog at: http://fromjessicatoyou.blogspot.com/
Read more at https://www.facebook.com/AuthorJessica/
Jessica,
I am one of the contributors who helped write this post. First and foremost, I want to thank you for your thoughtful response and sharing your story and experience. I also want to follow up on some poignant items you highlighted.
Most of my work has been with elders living with ‘late stage dementia’ living in long term care communities. I have seen possibilities for living well with purpose and dignity at all points along the journey of dementia. We are not trying to whitewash anything, there are horrific realities our elders face each and everyday. We are working to present the idea that there are possibilities for living well and much of the suffering that comes from dementia is a result of our culture versus the ‘disease’ itself.
What I have seen is that much of what makes dementia so hard for both partners in care is that we live in a world that does not see people with dementia as having value and therefore as you pointed out does not have structures and policies in place to support them as it does for other citizens.
Right now as you pointed out too much falls on carepartners to craft a world in which we can live well with dementia. We need a world that values dementia and those living with it. That is what we are calling for rather than furthering the stigma and isolation that the biomedical model and tragedy only narrative perpetuate.
We are fighting to change that stigma and seeking innovations and resources to help alleviate the monstrous cost (social and economic) of living in our current world with dementia.
I have tremendous compassion and respect for the stories and experiences you and many others have. We are trying to add an ‘AND’ to the conversation adding that a solution to some of the suffering people like you and your mom experience will not come from some cure some day it comes from right now working to change the world we live in to one that is dementia inclusive and that these changes will make our world a better place for us all to live regardless of diagnosis.
Kyrie;
Thank you for your reply which was also well thought out and an ‘elegant’ reply to an emotionally charged and frustrated rant that I posted in response to a very bad day with my mother. I do agree that there are more things that we can be doing to accept those with dementia. I believe that this type of dialogue brings awareness to all of the issues. It is my hope that one day we will see improved options, lifestyles, and choices for care partners. Currently there are too many gaps and far too few options for those suffering from later stage dementias. I appreciate all that you and others do to bring about change.
There is nothing evil about promoting increased research attention to a growing epidemic.
Somehow, criticizing PBS for trying to wake people up the realities of dementia, a disease many of us will face as we age, strikes me as a public service. Currently dementia is incurable. A few studies report reversing some symptoms only to late be shown not to replicate. Genome researchers are starting to understand the dynamics of the disease, which might lead to prevention or even cure.
That the news about dementia diseases is all bad news is an unfortunate reality. I have had to deal with it myself twice. That there is no hope of remission is sad, but it is true. Families need to know what to expect in order to make decisions about what to do if a family member get the diagnosis that they are losing their minds.
The documentary sounds like a typical one funded by researchers and associations who control what research is being done and are totally misguided by the “find the drug and cure the disease” philosophy. There has been much research pointing to the myriad of contributory factors to Alzheimer’s which can be treated and reversed. No mention of the work of lipid researchers or Dale Bredesen, MD’s work on reversing memory loss. Shame on PBS for airing such a documentary!
EDUCATION and AWARENESS . TWO STRONG EMOTIVE WORDS THAT PACK A PUNCH !
LET US WORK ON THIS COLLECTIVELY , SINCERELY and WITH DEDICATION . WE HAVE NOTHING TO LOSE AND ALL TO GAIN – Arthur James
For 12 years my sister and I lived with dementia. First my father, then my mother. We had both. The wonderful humorous ups and the tragic horrors. In the end every dream and every bank account that my parents had for themselves and their daughters were devastated. And spent by lawyers, Judhes conservators and guardians. Neither my sister or I have the possibility of living into our nineties. And we have none of our retirement savings or theirs left. At age 67 and 69 we have a debt of 364000 to pay off in four years or loose our parents home where we gave them the most wonderful of declining years, enjoying visits from their friends in between doing all the unsociable things you disparage the French film for revealing. Shame on you. There is no way to whitewash this disease. There is no way to have the wonderful accepted part of it without the reality of it. And no matter how big the legion of trained caretakers, no matter how wonderful the fake shopping mall care unit, no matter how much you put down those that experience and reveal the unreal behaviors that happen, the disease is devastating.
We will be evicted from the family home in four years when we cannot pay the court officials 354000. The officials refuse to honor Title 1917 of the social security act that provides we be given the home for keeping our parents out of the nursing home. Why should the court honor that. They would not get the money My mother who is still living has not seen us in five years. People who have seen her said she slept the whole visit. That can only mean she is drugged. She left our care with the spry lively body of the Queen Mother.
So do not fall into the trap of dementia. It is not without extreme pitfalls or wonderfull new meanings. It is both. And the most efficient thing it does is destroy families and experts by division band by division it conques And it is devastating. Period
Eloquent and poignant reminder of devastation that never stops, mourning the living and paying well passed the dying — my heart goes out to you and your sister
And my heart goes out to you too. So sad and eloquently put. We cannot forget those who have suffered and are suffering. All the more important reason to get our social priorities right.
Oh my! This is so typical of the myriad stories I hear as a speaker, advocate, and author on the subject of caregiving those with Dementia. You might like to read my post that I just left on this page. It speaks to my own experience. Hopefully, those who are whitewashing and perhaps even minimizing the impact on all of us will read it and understand where the priorities should be. Bashing the PBS documentary is not productive.
I watched a preview copy of the show. It outlines the needs of those who provide care and support: better education, home care, transportation, community redesign, health insurance options, affordable long-term care, respite. It offers one solution–Give us more money to find a magic pill that will make this all go away.
The voices of people with dementia are absent. The voices of people who are coping successfully–not to mention living well–are absent.
I believe that this show will ultimately harm those living with Alzheimer’s more than it helps them. Stigma and fear-mongering never succeeds.
Read my post (above!)
Education, education, education for all ages is needed!!! All ages need to see and understand the disease! I am hoping the PBS special will appeal to the younger generations because typically it is a topic that you will avoid in your younger years. My Story: Years ago I attended a ballroom dance where an elderly couple attended. They still danced very well but the husband was often times disruptive, shouting out things to others and sometimes making an issue of silly things. At that time I was in my forties and did not appreicate the scene that was made and I felt sorry for the wife because of her embarrasment. I avoided getting near that couple and blamed them for causing my social event to be less than expected.
………That was before my own mother was diagnosed, before I helped my siblings care for her for a decade, before she became isolated and angry from isolation, before she entered memory care two years ago. That was before I knew anything about the desease. Before I understood why that couple at the dance sorely needed to associate with others and sorely needed the activity. I did not understand that it was needed to maintain their physical and mental health. The wife and caregiver needed to go out with others and have a social life, rather than become isolated with the burden of caregiving. She did not need those around her looking away and glaring at her in disgust, hoping she would leave. That was before….Wish I had been educated….
Education is absolutely key. But we must be honest about what we know, what we do not know and even what we may never know. The messaging about Alzheimer’s is too often deceptive (see the free drug imagined in the report Changing Trajectory) . Facts are often “alternative” when the major issues often have to do with the language we use and the stories we tell. We need wisdom not just information. Money will not buy a cure. Alzheimer’s field represents the American tendency to think technology can fix everything
This discussion is interesting and raises valid concerns about the “face” of dementia; however, I’ll not join in the criticism as I believe whatever prompts anyone to take a stand, take action, contribute, raise awareness, or otherwise get involved should not be cast aside. My mom has Alzheimer’s and is now in a facility where she is safe, and can no longer be combative with my 86 year old father. This safety and peace costs thousands of dollars every month–sadly few have this option. So many offer theories of why dementia happens–what we need is collective community involvement for centers to provide reasonable options for care and safety and hopefully a cure…
Interesting perspective. I think it’s important to take the documentary in its context, which is made very clear by the title “Every minute counts.” The documentary presents the perspective of the importance of immediate and significant funding for research to find a cure for Alzheimer’s. In order to make that point the most powerful, it is necessary to film it from the perspective of the people who are cognizant of the devastation wrought by the disease.
Both approaches to dealing with Alzheimer’s are essential – the fight for a cure and the daily effort to maximize the quality of life for those living with the disease and their care partners. But a critique of an excellent documentary that chooses to highlight one perspective is no more well placed than a critique of anyone who presents on the best practices for living with the disease, that that person did not go into enough analysis of the spiralling growth and death rate and costs of the disease. Let’s not put one angle down to emphasize another when both are valid but need not always be presented together.
WE ARE ALL IN THIS TOGETHER!
Dementia care is too costly and is over-medicalized in America. The “dementia” label is stigmatized as an “ongoing funeral” and associated with aging by the greeting card industry and Hollywood. Our Applied Sociology Department at Texas State University is the first American university to offer an online M.S. in Dementia and Aging Studies from a sociological perspective. Our goal is to change America, one heart at a time. There are 17 graduate programs in Europe. I came from Scotland which understands REAL person centered social models of care and what they call “Dementia Citizenship.” Persons with dementia have human rights. Person centered care is not a term or phrase Memory Care neighborhoods should use loosely. When America is running 100-400 percent turnover of nurse aides who are the working poor (cf. my wife Dr. Roxann Johnson’s TED TALK on YouTube, “Who is taking care of your mother” etc.) using the terms without understanding what they truly mean.
The philosophy that needs to be internalized in America and by the medical establishment is that we are not dying from dementia but living with it. This is essential to our humanity in a materialist culture. Dementia is the “elephant in the living room” in this mixed up culture, which over emphasizes institutionalization and polypharmacy in the care of elders with dementia. We are spending a fortune on drugs in America to keep a bored and lonely elder population pacified. Its costing us money that we don’t have. We need to redesign homes for dementia and aging in place. We need adult day services equipped to empower persons with dementia. Memory care should and must change. Research on care and living environments for this population of persons is needed. Our Sociology program emphasizes a revolutionary way of seeing this experience, one which discards stigma and stereotypes. Empowering populations who have been systematically ignored in an over medicalized society which wants to spend its entire time trying to find a cure to Alzheimer’s instead of looking into the vast array of pressing social and psychological research issues that are currently pressing us in America. Feel free to call me anytime at my Sociology office at Texas State University or email me if you want to discuss this further. Thanks, Chris
I have not yet seen the PBS special. It sounds like a continuation of the same old pointless stuff fed to us as truth which fuels the fear of dementia and those diagnosed with it….I will watch it tomorrow with pen in hand writing my letter to PBS.
Much gratitude to Dr. Bill Thomas, Dr. Power and all the above contributors to this newsletter who strive to reverse the tide of fear, and who create many good minutes for so many with dementia and their families.
Jan Olsen, Gerontologist, Santa Fe, NM
Dear Dr. Chris;
I am gratified to read something that understands the issues and who is advocating for change in a productive way. I am a caregiver, author and public speaker who has also established Memory Lane Cafes, support groups, blogs, and activities for Dementia patients and their caregivers. There is so much more that needs to be done. I would love to email you but you didn’t provide your email address. By the way, you can check my blog at http//fromjessicatoyou.blogspot.com and/or read my own comments on this page.
Your response to the documentary is so important! I wish ChangingAging could join with someone like Jolene Brackey, the author of “Creating Moments of Joy for the Person with Alzheimer’s or Dementia” to make your own documentary.
We so need all that you wrote about! Another take on this subject!!
This film is a moral and scientific disaster. How can you say this disease “will take us down” juxtaposed to a statement that we must find a “cure” – whatever that might be. PBS should be more than ashamed of itself for falling for the technoscientific fixation and fantasy of an Alzheimer’s field dominated by power and profit seeking individuals and organizations whose goals are far removed from humanity. Yes dementia is tragic to varying to degrees depending on expectations and hopes. A truer more realistic look at cognitive aging would gain us much wisdom and a more balanced approach to meeting its challenges and learning from its opportunities. For an alternative view please look at http://www.monsterinthemind.com. Here you will learn that the monsters of Alzheimers are not what you think!
Thank you Peter for providing the link to “The Monster in your brain”, a new weapon (and a great one, with smartness and scientific rigour meeting humour) to help spread a realistic vision about cognitive ageing !
I have had the privilege of learning from people living with dementia, and those who care for them, for over 20 years. I have learned that the tragedy-only narrative of living with dementia creates a narrow lens for people with dementia and their families to frame their experiences. It amplifies the already challenging experiences of dementia by not offering pathways for people with dementia and their families to seek ways to continue to live well. It discourages them from even attempting to find meaning and purpose, as they are not aware it is even possible. This affects not only people who are currently living with dementia, but those who will be diagnosed in the future. With the tragedy-only narrative, from the beginning, their experience will be rooted in what they can no longer do, how they are different from everybody else, and how they are a burden to society. They have already been told that their normal ways of reacting to abnormal situations are abnormal, and their everyday actions are scrutinized regularly as either problematic or purposeless. Society is also harmed, as we develop a picture of people with dementia that inhibits us from truly knowing them as human beings and equals. We become scared of them and we fear the possibility of cognitive changes for ourselves, sometimes more than we even fear our own deaths.
It totally reminds us of an ad the French Alzheimer’s society wanted to release on all national channels in 2009, disgustingly named “Fortunately”. In this short film , alleged “AD” patients where shown in most humilitating situations, wandering barefoot in a dark street with a gloomy music in the background, eating one’s dog foot, insulting his grandchildren, and, last but not leat, peeing in a supermarket… and the dreadful last comment : “Fortunately, they will forget” !!!
It led us and a few friends to get up a petition through internet and write to the Alzheimer’s association President the following letter on August 24th, 2009 : (sorry for the translation mistakes)
Mrs President,
While there is an increasing amount of initiatives, both in Europe and in the United-States, in order to “destigmatize” dementing illnesses, showing how their evolution can vary considerably from one person to another, insisting on the fact that people who suffer from such disorders keep an identity and communication abilities, favor preventive approaches, we are outraged by the pictures which the Saatchi and Saatchi movie which runs on your association website depicts, as well as by the absolute cynicism of its last commentary “Fortunately, they shall not remember”. The aesthetism of this commercial, awarded by publicity professionals, emphasizes even more its revolting dimension.
It is profoundly shoking that an association such as yours, maintly meant to defend the patients and their loved ones, spreads such cliches among the general public, and we strongly denounce a process which goes against the dignity and the interest of the people and their families. You probably mean to get more money for research, but you generate dread, you even more isolate these persones, and you hereby hinder any action aiming to integrate them (e.g. through intergenerational activities), valorize them, and, eventually, help them.
Instead of presenting such an apocalyptical and simplistic vision of “Alzheimer’s disease” – and, thus, reinforcing the wait for a magic biological bullet or medication – your association should rather help the public to think otherwise of Alzheimer’s disease, consider that cerebral aging can take multiple forms, more or less problematic, which depend on multiple factors. It should also help understanding that, instead of medication, there are numerous preventive measures, psychological and social interventions, and , eventually, realizing that, even in the most severe stages of cerebral aging, people keep their humanity.
It is more that time to tell an other story of ALzheimer’s disease and your association should contribute to this.
Sincerely yours,
Pr Martial Van der Linden,Professor of Psychopathology and Neuropsychology, Faculty of Psychology, University of Geneva
Dr Anne-Claude Juillerat Van der Linden, PhD, lecturer, Faculty of Psychology, University of Geneva, clinical neuropsychologist
Eventually, the association gave up…
The original letter (in French) can be read on our blog, and you can also find there the link to the ad : http://www.mythe-alzheimer.org/pages/Madame_la_Presidente_nous_vous_faisons_une_lettre-2826513.html
We have also recently published a paper in Dementia in which we summarize our life-long and multifactorial approach to “AD”
http://journals.sagepub.com/doi/abs/10.1177/1471301216657270?ai=1gvoi&mi=3ricys&af=R&
A student once asked anthropologist Margaret Meade, anthropologist, for the earliest sign of civilization in any given human culture. He expected the answer to be a clay pot, or perhaps a fish hook or a grinding stone. Her answer surprised him. She said she believed the earliest sign of civilization was “a healed femur”.
Meade went on to explain that no healed femurs are found where the law of the jungle, the survival of the fittest, reigns.
The hallmark of a healthy society is measured by how well it cares for ALL its citizens including people living with dementia. Failure to do so otherwise leads society toward Nazi Germany type behaviours. Can we afford to take the risk?