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HealthIamA, writer and speaker, Judy Cornish, believer in supporting the abilities of dementia. AMA!

Feb 19th 2017 by JudyCornish • 8 Questions • 464 Points

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

Q:

I'd read your book. I bet it would be really accessible.

A:

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. :-)


Q:

I'd read your book. I bet it would be really accessible.

A:

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.


Q:

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?

A:

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?


Q:

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.

A:

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.


Q:

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?

A:

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.


Q:

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

A:

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


Q:

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?

A:

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.


Q:

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?

A:

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).