Hello Reddit!

I am Judy Cornish and I’m the creator of the DAWN Method and founder of DAWN (the Dementia & Alzheimer’s Wellbeing Network®). I am also a recovering attorney, avid skier and gardener, devotee of the Met Opera HD, and dedicated pursuer of the perfect shot of espresso.

Like any endeavor of the heart, finding a better way to provide dementia care wasn’t my plan back in 2010. I’d moved to this small town in northern Idaho to semi-retire and practice elder law part time. But I couldn’t stand by when a neighbor with Alzheimer’s needed help, and then another neighbor, and another, and soon I was completely absorbed in finding a way to design better dementia care.

What I came up with was this: Dementia is bad, but not all bad. Dementia takes away rational thought but not intuitive thought—and it’s intuitive thought that lets us do the fun things in life. Dementia takes away the remembering self but not the experiential self—which is only bad news if caregivers don’t understand what an experiential self does. And finally, dementia causes emotional distress, not craziness or behaviors. It’s the emotional pain that’s the problem (we all act a little crazy when we’re upset or can't figure out what's going on).

I’ve spent the last two years developing a training program and writing two books. We’re videoing my classes this spring and plan to have my first book, The Dementia Handbook – How to Provide Dementia Care at Home, out on Amazon in March.

Our goal at DAWN is very simple: We want to equip every family and every caregiver to provide truly supportive dementia care, so people can stay home and families can avoid the incredibly high cost of long-term care. But, more than anything, we want every person who experiences dementia to have a partner who understands the beauty of living intuitively.

So, I’m here to answer any questions you might have about this kinder way to provide dementia care, one that makes dementia care less painful for everyone involved.

Judy Cornish

Proof: https://twitter.com/theDAWNmethod/status/833342973869912065

Comments: 66 • Responses: 31  • Date: 

jo_annev15 karma

1) Would you please provide examples of how to "use" or access, etc., intuitive thought?

2) What are examples with experiential selves too?

3) I'm pretty mentally worn out as a caregiver and my situation is not that difficult. I'm not getting paid really, and have everything else to do already. What are things I can do to streamline the process of keeping my mom engaged intuitively and experientially?

Thank you!

JudyCornish8 karma

That's quite a few questions, so I'm going to try to respond to each one separately. :-) It took me years (and many clients) to begin to see a pattern in which skills were lost and which retained in dementia, and longer to find vocabulary and metaphors to describe it for us -- families, people who are not scientists or doctors. But we all have two thought systems. Einstein called them rational and intuitive thought; Kahneman refers to them as System 1 and System 2; Roger Sperry said right brain and left brain. Intuitive thought is our involuntary, instantaneous, creative thought that is formed from our experiences. So, it is our intuitive thought system that causes us to swerve when a dog runs out, even though it might not be rational to swerve because of oncoming traffic. Or, when you see a painting or hear music, you instantly have a reaction of liking it or disliking it. You could also choose to use rational thought to explain to yourself of someone else why you like it or don't like it. And, when babies are born they begin immediately to interpret the facial expressions and moods of the people around them, and learn what actions produce what reactions experientially. When someone begins experiencing dementia, medical science tells us they lose judgment, decision-making, and executive functions as well as memory. For us, as caregivers, we need to have that translated into something we can work with. It helps to see those functions as rational thought. When I'm with my clients, I know they still experience beauty, can read my emotions and moods as well as their own. When I join them in looking for beauty, and making sure that they have lots of sensory stimulation in the forms that appeal to them, we have a peaceful, stimulating and pleasant companionship. However, if I ask them questions, expect them to have the ability to use memory, to recall the past or be able to use rational thought functions, they become uncomfortable. I'll post this response and then begin answering your question about our experiential selves. :-)

JudyCornish9 karma

It also helps if we think about ourselves and our loved ones as having both remembering selves and experiential selves. Kahneman got me thinking about this with his book, 'Thinking, Fast and Slow.' There is a part of me that remembers the past, that feels familiarity in certain things and places, that takes comfort in that familiarity. This remembering self is drawing from my past experiences through using memory and recall. There is also a part of me that is in the present, experiencing everything via my senses in the now. Kahneman's example of our two selves is in how people choose vacations ... some of us pursue new experiences while some of us treasure returning to something recalled as pleasant. However, when someone develops dementia they lose the ability to use memory and their pasts become increasingly inaccessible. They begin searching for that sense of familiarity and like us all, desire "home" and what was once so comforting. Their remembering selves are gone (or fast going). Yet even though that remembering self is gone, they continue to have experiences. The psychological present is three seconds. People with dementia live exclusively in their experiential selves. Even when they cannot remember what happened even a few minutes ago, they still experienced it, and what we experience is still a part of us. It forms our moods. Because dementia does not take away the instinctive, involuntary intuitive thought system, what someone experiences will affect their mood.

When we, as companions and caregivers of people experiencing dementia, come to realize the continued existence of the experiential self, we can fill their present -- their experience -- with things we know they enjoy and benefit from.

JudyCornish10 karma

Becoming worn out in caring for someone with cognitive impairment is inevitable and unavoidable. I've also worked with people with traumatic brain injury in the vocational rehabilitation world, and with people with mental illnesses in a facility, but I think the most stressful caregiving role is caring for someone you love who is experiencing dementia. Dementia is progressive. It is also highly individual ... how it affects a person will depend upon what part of the brain is affected, the underlying disease that caused it, the person's personality, the person's past life experiences ... it's really difficult to respond to the constantly changing abilities and disabilities of dementia. I don't know what to say about streamlining, as you asked, but the way I started was to put myself fully in the moment whenever I stepped into the presence of the person with dementia. If I didn't let myself worry about anything but what was right there in our presence, I was giving myself a brief break. I'm always looking for beauty to share -- whether it's a cloud or a piece of chocolate or a tune or a cat's soft fur. But the problem with dementia is that it's always progressing, so if it's at all possible to bring in another caregiver, try to do so. We cannot do it all ourselves, because our loved one's needs are always increasing.

JudyCornish2 karma

Good morning, your comment is the oldest in the stream -- the first to come in after I signed off last night. I'm not sure I understand what you intended to communicate with the wiki link on paragraphs, but if it's a reference to the length of the "paragraphs" of my responses I fully agree ... my apologies. I'm new to reddit and find the way it's set up quite awkward. I'm not used to using forums or online conversations. I'm not sure why using the return key doesn't create paragraphs, but if you can tell me how to do it, I'd be very appreciative. :-)

P.S. Found it ... I just use edit and go back in after I've hit save and it's been posted and insert the returns there. :-)

jo_annev11 karma

I read the last 2 months of your blog entries. I don't have the money for more technology for streaming onto TVs, etc.

My mom is meaner than ever. What I'm trying to say is that it seems like you're asking for people to spend almost all awake time sharing stories, and or technological substitutes, etc., and a good mood. If that's the case, I already know that, but I'd lose my mind, income, boyfriend, etc., if that's all I do.

I already can't leave town to visit my boyfriend, I can't work many hours of the day, and I am just a bit frustrated reading book after book telling me how to do all of these different things that I don't have the resources to do.

Additionally, and this may not have anything to do with what you're presenting, it's difficult to take insults and condescension, ridicule, and a host of other negative behaviors and still always present a smile. I took this job on by choice, and it's not all bad, I'm not trying to say that it is.

What I think would help me more is how to separate her hurtfulness from the job I have to do. I try to show her things that she would enjoy, and it's not good enough and I try this and that and this is wrong and that's wrong. It just seems like it's not all lovely as these techniques are presented, I just need more practical things for real life situations.

If I'm off track, what do you mean?

What are examples?

JudyCornish10 karma

It sounds like you're dealing with a nasty double whammy: abusive behavior and dementia combined. I have often seen a parent with dementia single out the child who is actually the most dedicated and giving and caring for the worst treatment. I don't know whether you have siblings, but this is a pattern. In one family, the dad would call the other children and say that the local son was stealing his money and starving him. Sometimes this happens as a continuation of lifelong abusive behavior, but other times it begins with the dementia. This will be scant comfort, but when I was practicing divorce law we often saw the children act out in the worst ways with the parent they felt most safe with. It may be that she is acting out her fear and anger at dementia to you, the closest and safest target. That being said, I don't think I've ever seen a family or caregiver change a parent with dementia that is being abusive to a child. Without rational thought, people with dementia cannot be reasoned with or expected to learn new behaviors. If there is a way to bring in other siblings and remove yourself from the line of fire, that would be optimum. As long as she is targeting you, other caregivers should be able to meet her emotional needs. It isn't comforting, but this really is about her response to dementia, not you as a person or your kindness and generosity in caring for her. May I continue to think about your situation and write again?

jo_annev7 karma

Thank you!

All I ever feel is inadequate. I thought I was smart and capable, but all I feel is inferiority, frustration, hurt, anger, and of course after all that, guilt. As I said to someone else, this feels like being in a one-color room with no windows or doors. All I ever do is bounce from one thing to the next.

Yes, thank you.

Please write again.

JudyCornish7 karma

The first four emotions you describe are all healthy responses to the situation of being targeted and attacked by someone you are providing care for. That's the healthy you having a healthy response, a strength-based reaction. But the guilt is misplaced and will cause you harm -- that's the one you want to move away from. Is there a way to change the situation? Add someone to give you time away? Change the living situation -- move her into a facility? Providing care is a mutual transaction. Neither person's needs should not be ignored.

jo_annev5 karma

She gets down and angry enough as it is. As much of a jerk as I am by being snippy and frustrated, I haven't told her that she can't live alone, and that we need some help. I wish my sister or brother would just ask how I'm doing or say thank you once in a while. Somehow I think that would provide some balance to the situation.

JudyCornish4 karma

I think you're right. And because we know her condition will worsen, we know you will need their help more and more. You're thinking clearly. :-)

gardano6 karma

You often mention a "method®".

Please explain the real-world actions is in your method?

JudyCornish3 karma

I would have preferred to refer to the way we work with our clients here as an approach, but that would have been confusing within the world of dementia care. In terms of dementia care, the DAWN Method is habilitative in approach, experiential in model, and person-directed and strength-based in terms of philosophy. I believe that because dementia is a condition (something we cannot cure at present, ergo something we must learn to live with), we need to recognize that it has both abilities and disabilities -- and focus on the abilities but recognize the emotional pain it causes. So, the DAWN Method is a set of seven tools for responding to the seven areas of emotional needs that are caused when we experience progressive cognitive impairment.

I should probably comment on the registration symbol -- the "r" in a circle -- you included in your question. When I formed the company "Dementia & Alzheimer's Wellbeing Network," I registered the name of the company and the logo of the company as trademarks. That's what the registration symbol applies to (the DAWN, not the method). The DAWN Method itself isn't something that could be registered, or trademarked, nor could it be patented, because in the U.S. we don't patent medical or business procedures.

gardano18 karma

Pardon me, honestly, please pardon me for any apparent hostile overtones. Perhaps what you are offering is valuable.

But speaking as a primary care-giver on the front-lines, I'm skeptical of even peer-reviewed studies at this point.

Your answer is frankly a non-answer, full of meaningless gobbledygook.

I get furious when offers of hope are given with no evidence, especially when they are devoid of useful information. Please justify your existence, which you've not done so as of yet.

JudyCornish8 karma

I don't know your personal situation at all, other than that you just said you are a primary caregiver, so please excuse my replies coming across as no help. My first experience of providing care for someone with dementia was for a woman who was living at home alone. Since then, I've helped people living with spouses, children, and in facilities. Each situation is very different -- for the caregivers and for the person with dementia.

I'm not sure what you are looking for in the way of an answer. However, I can start by saying that each person in all of the above situations found themselves feeling very insecure due to increasing confusion. So, one of the emotional needs I identify is the need to be able to feel comfortable despite confusion. That's the second "tool" I offer families ... ways to help their loved one feel secure even though they cannot become less confused.

Am I going in the right direction with this answer? Have you found that your loved one experiences or has experienced distress at becoming more confused?

gardano7 karma

Actually, your answer was very helpful.

I understand that in my wife's case, she has unnamed anxiety and she directs in odd ways (obsessing on her fingernails and rings). So being able to provide a sense of security to her so that she doesn't so often need those obsessive behaviours would be a good thing.

And thank you for providing a concrete example that I can hang my hat on.

We folks who are living through this need something solid to base our responses to our loved ones on. When I hear marketing-speak, I envision a George Winston soundtrack and new-age bullshit, and immediately turn my back.

So again, thanks for a concrete example.

JudyCornish4 karma

Thank you for writing again - I'm glad that helped. I see the primary problem with dementia as being emotional distress, and if we can help our loved ones feel safer and happier we've done them the greatest kindness. So, the first three things I suggest we learn is how to manage mood for them (another form of security), how to help them feel secure despite confusion (as mentioned), and how to feel secure despite needing care. That's the first three "tools," and then the last four help us give our loved ones a sense of well-being, or happiness through social success, feeling in control, feeling valued, and feeling that the future is safe.

Usama365 karma

How do you think we should talk to them? Like when they say anything that does not make sense, should we agree to that or correct them? Is there any way it can be reduced?

JudyCornish3 karma

That's a lot of questions, so I may address them in order and hit send in between answers. I think we should talk to someone who has dementia with the same respect we would grant anyone, but at the same time being careful that we don't ask them to use the skills they have lost or are in the process of losing. Those skills are rational thought and memory. So, losing memory means they are losing the ability to retrieve memories so their comprehension of what has happened and is happening becomes increasingly inaccurate. Losing rational thought means they are becoming increasingly unable to see cause and effect, or prioritize ideas or facts or action, or hold those ideas or facts in their minds, or follow a series of steps. If I ask someone questions when they can't perform these kinds of thinking skills, I'm putting them on the spot and embarrassing them. If I require them to believe my version of what is true, has happened, is happening, I'm asking them to ignore what their brains are telling them and ignore their sense of reality. So, if I'm accepting their abilities disabilities, I accept their version of reality and work with their reality to make it comfortable for them. This is a brief foray into the much longer discussion of the difference between habilitative care and reality orientation. Habilitative care is the approach that I believe is required to help people with dementia live comfortably and safely.

JudyCornish3 karma

When someone with dementia says something that doesn't make sense, it may not be sensible according to our common reality but sensible to their personal sense of reality. Or, it may not make sense because the part of the brain that allows them to express themselves, use vocabulary, and form sentences has become impaired. When one of my clients loses the ability to express him or herself, I ignore the nonsensical vocabulary or sentences and listen to their intonation, watch their nonverbal communication, and then respond to that message. It's kind of like communicating with someone when you speak differently languages ... a lot of meaning and intent is recognizable even though you don't have common words. When I respond to my clients in these two ways -- accepting their version of reality and listening for the emotion and meaning hidden by their impaired vocabulary -- they begin to feel safe talking with me and feeling safer means less questioning or striving to be understood, or heard.

jo_annev6 karma

That works only some of the time. "Do you want to see the sale advertisement?" "Yes, please" even if I don't want to. "Ireland was wonderful, it's such a friendly place." "Yes, I've heard that from other people as well"

What about when their situation is negative and agreeing means I'm confirming a bad thought? "They stole all my jewelry." (It actually was a fire.) "Your father had no sympathy for me." And this one in front of the other shoppers at the grocery store when I was following her list and repeatedly accommodated every question she had about the items in the cart: "You're spending all my money." "What did you do with the dishes I paid for? You owe me money." I don't.

EDIT: I don't mean to write in too much, please let me know if I am.

JudyCornish5 karma

You're dealing with the more difficult situation -- the first one. She has no trouble forming sentences or expressing her meaning (in mistaken but seemingly valid ways, very embarrassing in public) and yet her sense of reality is already terribly flawed. Without accurate memories or the ability to put two and two together accurately, she will remain convinced that what she's saying is true. So all we can do is respond to the emotion she feels the need to express. "They stole all my jewelry" is an expression of loss and indignation ... if you avoid clarifying facts or responding at all to the facts she's choosing to express her emotions you'll avoid having her press the issue. So, you might try "Oh Mom, I'm so sorry ... I felt so badly for you when that happened." Or when she's pointing a finger at your dad, you might try "But Mom, I do -- I know how hard this has been for you." It's harder in public, but "You're spending all my money" might be a poor way of saying "My, things seem expensive to me lately" and your reply is, "I know, Mom, I always worry about how expensive things are. Let's be careful together." I'm trying to not sound pat. It's so hard to type answers rather than say them with intonation and facial expressions available to temper our words. But the skill lies in avoiding a factual response and using your response to carry on the conversation and validate her emotions. We still feel emotions in dementia. We just don't have rational thought to help us evaluate them and keep them reasonable.

Dr_Oetlul4 karma

Though your mindset is pretty good, do you think there still must be a lot of research to find out more about dementia and to prevent dementia so in the future it won't be a 'problem' anymore?

JudyCornish4 karma

Absolutely, we need to increase our efforts to find preventions and a cure for dementia. However, at present there are more than 5 million people in the U.S. who have it. They and their families are already trying to find ways to live with it. That's where my efforts are going -- trying to help those already struggling to live with dementia.

birdmommy3 karma

How does 'living intuitively' avoid issues that cause so much stress to caregivers - like 'sundowning' (where the person with dementia gets very agitated in the evenings), or the tendency many people with dementia have to develop erratic sleep patterns?

JudyCornish5 karma

This will take a bit of background to explain, so if I don't make sense, please ask another question. The pattern I began to see when I had spent a lot of time with very different people who had dementia was that they were losing rational thought but not their intuitive thought skills. And it is with our intuitive thought skills that we take in sensory information. This means that even though people become unable to recall facts or use analysis or see cause and effect (rational thought skills), they continue to be actively experiencing what their senses are bringing to them in the present. I think of the brain as being like our stomachs -- always in need of input, and uncomfortable when they lack input. So, the result when someone with dementia isn't getting enough sensory stimulation is restlessness and discomfort. They are uncomfortable psychologically. When we have a client become restless late in the day or not sleep at night, we wear them out the next day. We're always looking for sensory input ... through all five senses in whatever form that most appeals to them.

birdmommy4 karma

Intersting perspective! I can see it being very difficult for a single caregiver (especially if they are also elderly i.e. a spouse) to be able to do that on a consistent basis. If I'm in my 70s, and was up all night with a restless partner, I'm not sure where I'd get the energy from the next day to give them lots of extra stimulation.

At least when babies are in that stage the parents are usually younger, so can bounce back from sleep debt a little easier, and I suspect it's a lot easier to provide stimulation to an infant than to an adult - heaven knows that there were days when I was so wiped out from being up all night with the baby that I'd tie streamers and balloons to the overhead fan, and just let it spin while I had a quick nap myself. :)

JudyCornish3 karma

What a smart mom you were! Yes, caring for someone with cognitive impairment causes caregivers an unavoidable type of stress. It doesn't matter whether it is impairment due to a brain injury or mental illness or dementia, it is stressful. And having to be the caregiver of someone with dementia later in life when our own energy levels are waning is really difficult. However, once you get it turned around -- find ways to add sensory stimulation during the day -- you get more rest at night. Of course, the best option is to bring in additional help. We are always looking for ways to get our clients out of the house so their family members can enjoy being home and off duty.

cherryredscrubs2 karma

I'm not sure if you're into the science aspect of different forms of dementia, but what do you think of the new halt to trials for the BACE inhibitors like verubecestat? They were such a big deal! The recent theory that dementias, specifically Alzheimer's, were linked to amyloid plaque build ups. Kind of a really huge let down that there was no change with the inhibitors, so I was curious to know how that affected you and your work, if at all?

JudyCornish3 karma

It was a big disappointment, but I've always focused my energies on trying to find a way to help families and people who already have dementia. When I started with a neighbor, my friend, almost seven years ago, I was overwhelmed by her pain. I really hope we find a cure soon, and I applaud and support research wholeheartedly, but I am more concerned about helping lessen the emotional pain dementia is causing right now. So it hasn't really affected my work.

khoff981071 karma

. . ." the abilities of dementia" is a very strange phrase.

Don't you mean supporting the abilities of people with dementia?

JudyCornish1 karma

I agree. I have spent a great deal of time struggling with finding vocabulary for discussing dementia in accurate and respectful ways. And yet, now that I am trying to publicize what we've been doing here using social media and the web, brevity and succinctness are essential. What I would prefer to say is that we can change the experience of both the caregiver and the care receiver through focusing on the cognitive and psychological abilities that are not lost when people are experiencing dementia. Thank you for adding that to the discussion! :-)

massivecreature1 karma

I see some big claims here, but nowhere (including your website) is your method actually outlined. What, exactly, is it? And do you have any evidence that it works better than the standard of care?

JudyCornish1 karma

The Method is designed to help us recognize the skills kept, despite dementia (intuitive thought, the experiential self, mindlessness tools) and those lost (rational thought, the remembering self, and mindfulness). With an understanding of the pattern of abilities and disabilities, we can provide care that supports the emotional needs caused and the skills lost. The DAWN Method outlines the seven emotional needs dementia causes, three being caused by insecurity and four by lack of well-being. In the order I teach them they are: (1) mood management; (2) security in confusion; (3) security in care; (4) social success; (5) sense of control; (6) sense of value; and (7) secure future. In terms of the language we use to describe dementia care in the U.S., the DAWN Method is habilitative in its approach, experiential in model, person-directed and strength-based in philosophy, and focused on emotional needs rather than dementia-related behaviors. Good books to read would be Gawande's 'Being Mortal' (addressing the need for care rather than treatment and the origins of the more commonly used appropriate care approach); Allen Power's 'Dementia Beyond Drugs' and 'Dementia Beyond Disease' (describing habilitative care, experiential vs biomedical models, and addressing the need for emotional and well-being supports); Daniel Kahneman's book 'Thinking, Fast and Slow' (addressing the existence of intuitive and rational thought, as well as the remembering and experiential selves); and Ellen Langer's book 'Mindfulness' (describing the tools of mindlessness and how perception affects aging).
I've been using this emotional-need based method in lieu of behavior-directed care for the past six years. At present, I have a staff of six caregivers. We've cared for more something more than 40 people with dementia, some living alone in the community, some with family, some in facilities, and consulted with I'm not sure how many additional families. Our evidence is in our clients. I'm working to publish a book outlining the theories behind the DAWN Method next month and have a second book outlining the DAWN Method in detail edited but not through the publishing process. I would love to see studies done on such things as the effects of supporting security and well-being in dementia or the value of familiar surroundings in supporting the mindlessness tools. The patterns of skills lost and retained is already accepted, but expressed in medical terms rather than philosophical (i.e. executive functions rather than rational thought).

massivecreature1 karma

Thank you for the long response, but again, these are just listed of phrases. What do you actually do? As for evidence, I was asking about the scientific sort, not anecdotal, though I appreciate the value of both.

JudyCornish2 karma

Good morning, I'll try to be briefer in my response. What I do is teach families how to support the emotional needs and abilities of people who are experiencing dementia. I do that in person, in workshops held here locally, and through www.thedawnmethod.com using webex.com. On the website under 'Services,' is a page that describes the eight classes of the training. The first class is an introduction to dementia and dementia care in general; the last seven are the seven tools of the Method. We are currently videotaping the classes to make them available on something such as vimeo.com.

In addition, I've written two books. The first book describes the theory behind what I teach; the second details the DAWN Method so any caregiver can use it. The first book should be available next month, the second next fall. As for evidence, if you are asking whether you could go on something like medscape.com and find a study on the DAWN Method, the answer is no. I'm just beginning this spring, now, to present it publicly.

However, if you are wondering whether the principles I built the method around have been tested scientifically, the answer is yes. Regarding our rational and intuitive thought systems and the existence of the remembering and experiential selves, Dr. Kahneman's work is highly respected and accepted, although some people tell me his book is boring because it recites study after study. I wrote to him about my theories and he responded that he thought I was right. Dr. Langer's work on mindfulness is highly tested and supported. She's known as the mother of mindfulness and has long run the Langer Mindfulness Institute at Harvard.

If you're asking about the testing and validity of the habilitative care approach, Dr. Power and Dr. William Thomas are the best known in this field of research. Bill Thomas's work with the Eden Alternative is outstanding and, although we were not in contact during development, his seven domains of well-being parallel my seven tools amazingly.

There are a few studies that have been done on how mood is affected by Alzheimer's or dementia, as well as programs showing how well people experiencing dementia respond when asked to do intuitive tasks (i.e. Dan Cohen's work with Music & Memory; the In The Moment improv study reported on NPR).

If you look further afield, researchers in Australia are now proposing five emotional needs that they identify as essential to providing targeted support in dementia. In the U.S., as Dr. Gawande points out in 'Being Mortal,' we are very good at treatment and responding to disease, but have lost our sense of what it means to live with conditions -- things we cannot cure -- and providing care.

I'm sorry -- I guess I can't be brief. I could give you more examples but I'm not sure which would truly answer what you'd really like to know.

WhyOhWhyOhWhyNow1 karma

Do you focus exclusively on Alzheimer's dementia or do you deal with other types as well? (Disclosure, my step father has Parkinson's and is having early signs of dementia.). If both, what differences in the needs and skills of different types do you see?

JudyCornish1 karma

Our clients have been a real mix; we definitely see Alzheimer's, but also vascular, mixed, frontal lobe, normal pressure hydrocephalus, Parkinson's, tbi, Korsakoff. But dementia isn't like cancer. With cancer (a disease) we need to know exactly what type we're dealing with, how far along it is, what the various treatment options are ... all those diagnoses and tests are important because cancer is curable, and treatable, and we want to make an educated decision about which treatment will best bring a cure. Our point in diagnosis is to isolate the best treatment.

My focus has not been on the diseases that cause the condition (diagnosis), because at present we can't cure it. My goal was to help my neighbors, then clients, find peace and ways to continue to get as much enjoyment from their lives as possible. Books on dementia and the dementia care industry told me that it was all bad news and that dementia-related behaviors are inexplicable, but I still wanted to find a way to make life better for these people I'd grown to love.

So, although their behaviors looked random, I focused on the emotions causing them distress. Emotions cause us to act and react in predictable ways. When we approach a condition on that level there aren't differences in needs or skills to respond to. Just a person with an emotional need.

That's the core of the DAWN Method (which I wish I could call an approach). Once I began responding to my clients' emotional needs, I began to see their abilities and disabilities in patterns also. Once again, it didn't matter whether my client had dementia due to Parkinson's or an earlier head injury, they were losing rational thought but not intuitive thought, their remembering self but not their experiential self.

I would argue that when we are designing care and responding to conditions, we need to take into account not only medical science, but also psychology and philosophy. A condition is something we must learn to live with. It affects the whole person, not just their physical health.

TheMetaphysics1 karma

Hi Judy -

I've recently been blessed enough with the opportunity to collaborate with The Alive Inside Foundation. What are your thoughts on the music therapy program and it's implementation as a standard care practice?

JudyCornish2 karma

Isn't it wonderful! Our local adult day program and one of our hospitals are certified in Dan Cohen's Music and Memory program. When we bring music into someone's life, we are giving them much-needed sensory stimulation. We enjoy music through our intuitive thought processes. The way it brings people back to life and gives them happiness and peace is a perfect example of how it works when we support the abilities of dementia (intuitive thought and the experiential self) rather than ask them to use skills they are losing or have lost. For our clients, we have families load two iPod Shuffles -- one with music their loved one enjoys and one with music their loved one finds soothing or comforting. Dan's programs work wonderfully on their own, but they also coordinate and augment the work of music therapists. I think music is a critically important part of dementia care.

samwise09121 karma

On a personal level, what are some of your favorite films?

JudyCornish2 karma

Last night I saw 'Hidden Figures' and loved it. I thought it was both deeply moving and inspiring.

postecon1 karma

I know a family where the husband had dementia for years. He recently passed. But now the wife is diagnosed with dementia too. They're not related at all.

Have you come across such examples? It seems to me a freak coincidence.

JudyCornish1 karma

I think it's more an indication of the prevalence of dementia. It really is an epidemic.

You don't mention your friends' ages, but the Alzheimer's Association used to say that by the time we reach the age of 80 we have a 50 percent chance of developing dementia. I haven't checked that statistic lately.

asteroid30001 karma

How do you "successfully" treat senile dementia?

JudyCornish1 karma

The term "senile dementia" makes me uncomfortable, because to me it implies that experiencing dementia is a normal part of aging. We used to talk about senility, or people becoming senile. Now we understand that dementia is a condition that can be a result of various diseases and that aging is not synonymous with developing dementia.

In the U.S., 60-80% of the time dementia is the result of Alzheimer's Disease. In the people I've worked with, the percentage is at the lower end. Here I seem to get a lot of people with vascular dementia and mixed dementias.

We haven't talked yet (on this AMA) about the difference between diseases and conditions or the difference between treatment and care. We provide treatment for diseases -- we test, diagnose, treat, retest, re-diagnose and offer a new treatment. Diseases have symptoms (a disability) that we can change. Our focus is on the disability -- what's wrong -- not the person.

Care and conditions are different. A condition is something we can't cure or change, and at present dementia fits this category. We can't cure it so we have to learn how to live with it and care for the people who are experiencing it. When we must live with something, we need to recognize both the person's abilities and his or her disabilities. That's the definition of care -- supporting the person in both ways.

So, with the DAWN Method, I set out to find a pattern that we as families and non-medical personnel could recognize -- enabling us to support our loved ones' abilities and disabilities. It's important to understand that we don't treat dementia like a disease, expecting it to get better. We care for the whole person, loving them in ways that make the condition of dementia more comfortable.

All that being said, the way we successfully care for dementia is by recognizing the person's emotional needs (the seven tools of the DAWN Method) and recognizing their abilities (intuitive thought, experiential self, mindlessness) and working with that. The success in my approach is less stress for the caregiver and more peace and security for the person with dementia.

justapoorcollegekid1 karma

my grandfather is suffering from alzheimers and has been for more than 10 years- and he is honestly one of my best friends. What can I do to prevent or stop deterioration as much as possible?

JudyCornish3 karma

I'm sorry, but I can't say that we've determined guaranteed ways to prevent dementia or stop deterioration yet. The closest factors I've seen replicated would be the studies on exercise that showed improvements in memory and cognition. There is a study out of UCLA that showed that combined exercise and good nutrition (I think essentially the Mediterranean diet) resulted in improvement, but I don't think subsequent studies have replicated those results yet. I have seen advertisements for omega-3 and coconut oil claiming great results (note that I'm referring to advertisements).

However, you can enhance his experience and companionship with you by doing things such as telling him his happy memories and your mutual happy times together as if you're telling him favorite stories (do the remembering for him). You can also bring to him his favorite music, scenes, pictures, tastes, smells ... all the forms of sensory stimulation he finds beautiful ... and enjoy them with him. And you can bring him only positive moods so that when he's in your presence he picks up your love, acceptance and admiration of him rather than sorrow or concern.

All my efforts have been put into teaching families to recognize and support the skills not lost in dementia: intuitive thought and the ability to experience. What I'm describing above would be you joining him in the present using intuitive thought skills. When you take care of any remembering or rational thought functions for him, and join him in enjoying the present and all the good sensory stimulation we can put in the present, he can experience your love. That's the greatest gift you can give him.

justapoorcollegekid2 karma

thank you.

JudyCornish1 karma

You're very welcome. He's a lucky man to have you, a dear friend. Many people with dementia don't.

Epitaph_for_America1 karma

What are your thoughts on facilities, as reported by CNN (27DEC2013), in regards to long term healthcare, for patients with Alzheimer's type of dementia?

JudyCornish1 karma

I'm not getting an article on long-term care when I search CNN for that date, so I hope I'm responding to the aspect of long-term care that you're asking about. Please ask again if I've missed it.

My primary concern about long-term care is its cost. When I practiced elder law, I saw families being bankrupted by the cost of caring for a loved one. The average cost of a semi-private room in 2016 was over $92k/yr, which is about double what it would cost to send a child to a private university. We're seeing a generation's savings go into long-term care rather than into inheritances that enhance stability for the following generation.

So we can either make institutional care cheaper or make it less necessary. If we make it cheaper, the burden goes on government programs like Medicare or Medicaid, which really just comes out of the family pocket again. The better approach is to find a way to lower the need for institutional care, which is what I'm trying to do with the DAWN Method -- help us understand how to live more comfortably with people experiencing dementia.

My secondary concern is that group housing cannot help but be aimed at the needs of the many, hence the average need. None of us are average -- and we're all accustomed to independence and individuality -- so staying home appeals most of the time. About 1 in 10 of my clients is so gregarious that living in a group is better than living at home, and another 2-4 maybe cannot continue at home safely for various reasons. But almost everyone I've worked with has wanted to continue at home for as long as possible.

There are further discussions on the value of keeping people experiencing dementia in familiar surroundings for as long as possible, but I don't think that would have been in the CNN report.

Epitaph_for_America1 karma

http://www.cnn.com/2013/07/11/world/europe/wus-holland-dementia-village/

I apologize, I'm still relatively new with Reddit, that was the date listed on the original article citing an update, and I probably could have been a little more specific about the facility when I wrote my original question. the facility is called Hogewey and is found in the Netherlands.

The short of it is that the mental health care facility is, for all intents, its own city. The individuals filling the roles such as baker, garbage man, police officers Etc. are all Mental Health Care Professionals. I'm fully aware that the price on something like this would be exorbitant without socialized medicine, but the cost isn't what I'm asking about.

JudyCornish1 karma

Ah, now I understand your question. Yes, and Hogeway was also covered very nicely in an article in the Atlantic Monthly. I was actually appointed to the NAELA delegation that visited the village last November, but had to cancel for personal reasons.

There are now several examples of dementia villages in Europe, Britain, and Canada. I like the concept -- it's a very habilitative approach -- in theory. The villages are set up to operate like a normal community, but with no need for the inhabitants to retain factual information or knowledge to function, such as using money or payment for services. And, like you said, all the normal service people in a community are trained caregivers.

However, as we're seeing the villages being staffed and operated, issues do arise. The villages are still confined areas, so people wanting to leave to go home is still an issue. And, because they are moved out of familiar surroundings and into a home in the village, they lose the benefit of the mindlessness tools that enhance functioning. They are also living just as separately from their families and normal routines as when living in a traditional facility.

Personally, I prefer the idea of creating dementia-friendly communities through education and training of families over segregating people in dementia villages. With our clients here, we work to keep them in their own homes and as involved in their normal lives as possible, within the community.

The dementia village concept isn't really a new idea in Europe. There was a program on NPR's Invisibilia called 'The Problem With the Solution' that describes a town in Belgium (Geel) where habilitative care for the mentally ill has been in use for centuries. This program provides a great introduction into a consideration of the difference between diseases and conditions, and contrasting need for treatment and care ... but that's another lengthy topic. :-)

No worries about being new to reddit ... I've learned how to create paragraphs today. :-)

forava71 karma

what is the most misunderstood aspect of dementia? Why do people often overlook that?

JudyCornish1 karma

Your first question is a difficult one, but the second one is simpler. I think we misunderstand what someone experiencing dementia needs because the process of progressive cognitive impairment causes people to experience something different than we see in any other situation in life: the loss of cognitive skills rather than growth. We overlook or respond inappropriately because it seems counter-intuitive to not hope or expect improvement or at least constancy.

For your first question:

The most common problem I run into with families is that they understand that their loved ones are losing memories, but do not understand that they are losing the ability to use the skill of remembering. So, they think that trying to jog their memories, or test their memory, will help. This may work at first, when memory skills are not entirely gone, but eventually it serves only to remind the person that they are failing at memory, reinforcing a sense of insecurity and failure.

The most unkind misunderstanding I see is that although we all understand that people experiencing dementia are becoming unable to remember events (use their remembering selves), we fail to understand that people with dementia are still experiencing events (using their experiential selves). So, although I may no longer have the ability to recall what happened a minute ago (and may also lack the language skills to express or describe what happened), I still experienced it. I'll see an aide treating someone brusquely and if I ask for more kindness, the response is often, "Oh, she won't remember anyhow. She has dementia."

For example, someone with pain in his shoulder due to an old injury is feeling the pain and will respond to that experience even though he cannot say, "My shoulder hurts" or "When you put my shirt on it really hurt, so now I'm angry with you."

Even when we cannot express what we are feeling or recall what has happened, we live with the experience of it.

rickmuscles1 karma

What are the best charities to support Dementia research?

JudyCornish1 karma

I'm sorry, I don't have an opinion on that. I personally have donated to the Alzheimer's Association, however.

Could someone else answer this question?