Did you remember to validate?

I saw this sign at a parking garage and had to chuckle because validation means something different to me than to most everyone at the parking garage.

Validation is a concept developed by Naomi Feil.  It is a way of working with individuals with dementia that preserves their dignity and humanity.  It is more about exploring and expressing emotions than finding truths and reality.

The principles of validation are:

1.  All old people are worthwhile.

2. Demented individuals need to be accepted for who they are and we should not try to change them.

3.  Listening with empathy builds trust, reduces anxiety, and restores dignity.

4.  Painful feelings that are expressed and validated diminish over time, while those that are ignored or suppressed will gain in strength.

5.  There is reason behind the behavior of demented individuals.

6.  All behavior is communication of an unmet need.  These needs can include the need to: resolve unfinished issues in life, restore a sense of equilibrium, make sense out of an unbearable reality, have recognition, be useful/productive, be loved, feel like they belong, feel safe, have reduced pain/discomfort, be listened to/respected, and express their feelings.

7.  Movements and gestures are used when verbal skills and memory fail.

8.  Demented individuals use symbols in the present to represent people/things from their past.

9.  Demented individuals live on several levels of awareness – often at the same time.

10.  When the senses fail, demented individuals use their inner senses/mind’s eye.

11.  Early, well-established emotional memories can be triggered by current stimuli that are linked to past experiences.

If you want to learn more about validation, here is the official site:

http://www.vfvalidation.org

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“That’s nice.”

An eighty-eight year old female resident of an Assisted Living Dementia Unit was standing near the entrance to the dining room at the busiest time in the late afternoon right before dinner.  The CNA’s were all occupied in trying to get residents situated in the dining room, and this particular resident was standing right in the way.  Each time a CNA approached, the resident pointed at her newly curled and set hair and stated, in her broken words, “Look…this…my husband…salon.”  And, each time the CNA’s would answer with pretty much the same response, “That’s nice.”

Really?!!!

That response reminds me of a joke going around on Facebook:

Two friends who hadn’t seen each other in fifteen years, get together for lunch to catch up.  The first woman boasts, “You know, when I got married, my husband gave me a 24 carat gold and diamond necklace.”

“That’s nice,” said the second woman.

“And for our 10th Anniversary, he gave me a Mercedes-Benz,” she continued.

“That’s nice,” said her friend.

“And just this year, my husband bought me a million dollar beach house for my birthday.”

“That’s nice.”

“So, what did your husband get you?”

“He paid for me to attend finishing school.”

“Finishing school?  Whatever for?”

“So that I would learn to say ‘that’s nice’ instead of ‘who gives a damn?’.

Telling a demented individual “that’s nice” is the equivalent of saying “so what?”.  “That’s nice” is a dismissive phrase, and although, the CNA’s thought that they were communicating and acknowledging the resident, they were actually doing quite the opposite.  After all, dismissiveness is actually the antithesis of communication.  It says, “I don’t want to hear it…I don’t want to communicate.”

Although I am sure that the CNA’s had not intended to say “I don’t care” to their resident, this is the message that came across and I could tell that the woman was disappointed/saddened by it.  Interestingly enough, she was not put off.  In fact, she was quite determined to get an acknowledgement from someone, and she continued her attempt to acquire validation from anyone/everyone who walked by.

I approached this beautiful resident and stated, “Wow Beatrice!  You got your hair done today!  It looks wonderful!”

She beamed and said, “Thanks.  My husband…my hair…and he’s liking dinner.”

“Your husband paid for you to get your hair done?”

“Uh-hum…and my dinner…and he’s happy…good…no…pretty wife.”

“Oh, and afterwards he takes you out for dinner to show you off as his pretty wife?”

“Yes!” she stated excitedly with a huge grin on her face, “Bye!”

That’s all she wanted to say.

It took less than a minute for me to provide what this lovely woman was waiting for – an acknowledgement of her nice hairdo and validation of what her husband saw in her.  The exchange was short, but it made all the difference in the world to her because someone was able to help remind her of her husband’s admiration and love.

So, the next time someone with dementia approaches you with something and you are tempted to say “that’s nice”, DON’T!  Take a moment and find out what it is that the demented individual is trying to communicate and acknowledge that whatever it is is extremely important to them.  Make it extremely important to you.

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“Hey…Hello…I’m over here!”

I can just imagine that this is what someone with dementia is saying in his/her mind as his/her mouth can’t seem to find the right words in the precise moment that a caregiver is passing by.

How many times have you passed this individual on a couch at home, in an Assisted Living hallway, or in a Nursing Home doorway?  You know this person.  S/he is the one who is reaching out and grabbing at you or yelling, “Hey, hey” or “Help, help.” And what is our unfortunate tendency when this happens?  To ignore them and hope that the behavior goes away.  And this is exactly what we should NOT do!

But wait…isn’t this what all of the experts said in our child-rearing days?  “When your two year old is throwing a temper tantrum, don’t pay attention to her/him.  S/he will soon learn that s/he cannot act this way for attention.”

BUT these individuals are NOT children, they are NOT two year olds, they are NOT throwing a temper tantrum, they do NOT realize what they are doing, and they are NOT in a position of “learning”!  They are trying to communicate.  There is a need there that is not being fulfilled and if we ignore it, the behavior will only GET WORSE.  Naomi Feil teaches it best in Validation when she states, “The cat ignored becomes the tiger.”

Jim Evans stated, “Another way to lose control is to ignore something when you should address it.”  And this is never more true than when you are working with someone with dementia.  Consider the following actual scenario:

One particular Friday morning, the CNA’s at our third floor Memory Care Unit were gathering residents and readying them for the van ride.  Many of the residents looked forward to the van ride and among them were Bill and Ellie, a very attached-to-each-other married couple in their mid 90’s.  Just as the van pulled around and the elevator was being summoned to the floor, Bill decided that he suddenly needed to use the bathroom.  He summoned a CNA who wheeled him into the nearest bathroom to help him take care of business.

While Bill was in the bathroom, another CNA wheeled Ellie into the elevator and took her downstairs as one of the first group of residents to go down to the van.  Shortly afterward, Bill was wheeled out of the bathroom and situated in front of the elevator as they waited for it to return.  Bill immediately looked around and began to look anxious. The CNA’s, in the busyness of attempting to round up residents and get them onto the elevator, did not notice Bill’s demeanor as he began reaching out to the caregivers in an attempt to say something.

One CNA said, “Come on, Bill…let’s get on the elevator now.”  But Bill refused.  Again, Bill attempted to get someone’s attention, but this CNA was intent on loading the elevator and grabbed Bill’s wheelchair and began to push it.  Bill put his feet down and simply said, “No.”  Another CNA came and attempted to get Bill to agree to get on the elevator.  Bill became even more frantic and this time, he yelled, “NO!”  The first CNA re-approached Bill and politely, but firmly insisted that he get in the elevator and she began pushing the wheelchair into the elevator.  This time, Bill planted his feet, pushed himself up out of the wheelchair into a standing position and yelled, “Goddamnit!  Where’s my wife?!”

How different would this scenario have been had the first CNA not ignored Bill’s attempts at getting her attention?  Had she simply stopped and asked Bill what his concern in getting on the elevator was, she would have been able to avoid the entire situation.  She could have calmly explained to him that Ellie was already downstairs and on the van.  And, even more importantly, Bill never would have had to get upset and yell in order to get his needs met.

So…the next time you walk by a demented individual who is trying to get your attention, remember that this is a human being with human needs and emotions, that it’s no fun being ignored, and that you may just be the one who keeps that cat from becoming a tiger.

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It’s all in the approach.

How you approach people makes a HUGE difference in how they respond to you.

Think about it:  In a normal interaction…

If someone smiles at you, you smile back.  If someone approaches you with a frown, you may think that s/he is upset with you.  If someone approaches you from behind, you will likely be frightened and may even become defensive (and someone will likely end up with an elbow in their solar plexus).  If someone approaches you from the front, they will get your attention.  If they approach too quickly, you may become scared and be put on the defensive.  If someone approaches you slowly, but gets too close for comfort, you may push them back – and if they keep getting too close without permission, they may even get slapped.  If someone approaches from the side and you don’t sense them there, you will get startled.  If they approach from the side, and you know that they are there, you may put a friendly arm around them.  If you are sitting down and someone approaches you and remains standing over you, you will feel intimidated and get uncomfortable.  If someone approaches you and doesn’t say anything, you may become suspicious and not trust them.

So…why do we think that individuals with dementia are any different?!  When we do any of these negative things to a demented person and they have a negative reaction (those dreaded “behaviors”), how can we say that they are acting abnormally?!

I don’t know how many times, I have seen someone come up behind a demented individual and start pushing his/her wheelchair without first making their presence known, and without saying anything to him/her.  And then when the demented individual protests, they are shocked/surprised that there is a negative reaction/behavior!

When working with someone with dementia, we need to keep a few things in mind:

1.  Approach from the front and do so slowly.

2.  Make sure that the individual sees you/knows that you are there. (Remember that many of them have visual and auditory impairments that complicates the situation)

3.  Get on their level – if they are sitting, sit or kneel (don’t stand over them).

4.  Give them adequate personal space – don’t invade.  (More space for an angry individual and less space for a sad individual)

5.  Use both verbal and non-verbal communication – EYE CONTACT is very important.

6.  Greet them/acknowledge them as a person before trying to get them to do anything.

7.  Offer an open hand (and wait for them to accept it).

8.  Stand at an angle – not head on or squared up (at an angle is friendly and squared up is intimidating)

9.  Wait for them to accept you before proceeding.

And,  MOST importantly, be alert in reading the demented individual’s reactions to your approach/interaction and readjust accordingly.  Know when to engage and when to back off.  You may just save yourself from a confrontation, elbow to the solar plexus, or a slap in the face!

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The #1 Dementia Don’t!

Don’t ARGUE!

It always amazes me at the number of individuals that I come across who act as though arguing with someone with dementia is going to get them anywhere.  The mere fact that the person has dementia should indicate to you that s/he does not have the cognitive ability to form good judgments, to track time well, to reason out an argument, or to merge multiple variables accurately.  So what makes anyone think that arguing or attempting to orient a demented individual to reality will really work?!

Take the following true exchange that happened between mother and daughter:

Mom with dementia:  “You never call me!”

Daughter:  “Mom, I call you all the time.  In fact, I called you last night.”

Mom:  “You did not!  I never thought that I raised a liar!”

Daughter:  “I’m not lying to you, mom.  I called you last night and I even told you that I would be here to visit you today, and here I am.”

Mom:  “You’re only visiting me because you’re feeling guilty that you never call.”

The conversation went on and on this way and the mother just became more adamant and agitated.  I finally interrupted the daughter and very kindly, but firmly asked her to just listen and watch as I took over the conversation with her mother.  The conversation went as follows:

Me:  “Betty, I can tell that you really love your daughter.”

Betty:  “What’s that got to do with anything?!”

Me:  “Well, because you love her so much, it really hurts you when she doesn’t call or visit.”

At this point, the daughter tried to interrupt again with her argument that she, in fact, DID call.  I asked that the daughter not interrupt and I turned back to the conversation.

Betty:  “How did you know that?”

Me:  “It was just a hunch.  Besides, I think your daughter loves you too.”

Betty:  “If she loved me, she’d call me.” (with a darting glare at the daughter).

Me:  “What’s the worst thing about not hearing from your daughter?”

Betty:  “I’m alone.”

Me:  “So, you feel abandoned when she doesn’t call or visit.”

Betty:  Turns to her daughter, “see, SHE gets it.”

Outside of the room, I explained to the daughter that I knew that she had called her mother – that wasn’t the point of me seemingly “siding” with her mom.  I further explained that most individuals with dementia have lost the ability to reason and that attempting to reason with them just frustrates everyone. This is because our tendency as non-demented individuals is to correct and to try to bring the demented individual into our reality.  But whose reality is it?  And is it really important that we are right and they are wrong?  I didn’t believe that the daughter didn’t call – her mother did.

Furthermore, challenging a demented person’s reality only serves to put him/her on the defensive, and his/her response will put you on the defensive which only leads to anger and agitation – not a good combo – and a vicious cycle ensues.

So, what did I do that was different?  It’s called validation.  Validation focuses on emotions.

The ability to remember true events and to reason are higher cognitive functions; however, the ability to receive internal and external stimuli and to feel emotions are lower cognitive functions.  Therefore, feeling and emotions are what individuals with dementia can relate to and these are what will connect you, NOT arguing over who is right or wrong in the situation.

The moment that her mother stated that the daughter never called her, the daughter should have recognized that this was no longer a conversation about reality.  It was a conversation about her mother’s reality and what her mother was feeling – not what her mother was thinking.

So, the next time you sense an argument coming on, stop yourself and try to look for the emotion involved.  Name the emotion.  Talk about the demented person’s needs and acknowledge their feelings.  You’ll be amazed at the conversations that will take place!

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“What we’ve got here is a failure to communicate.”

The deterioration of the brain with dementia tends to also lead to a deterioration of the ability of a demented individual to express him/herself verbally.  Language becomes more difficult – both speaking it and comprehending it.  Those with dementia often mix up or omit words/phrases and /or replace other words or non-sensical speech for what they are trying to say.  The phrase “word salad” is used to explain the disjointed communication that happens with many demented individuals and those with dementia are often labeled as “verbal” or “non-verbal.”  This leads those of us in the non-demented world to assume that the failure to communicate with someone with the disease is somehow the fault of the person with dementia.  However, if we agree with communication research that normal communication is only about 10-30% verbal and about 70-90% non-verbal, then I would question who is really at fault in the communication process?!

Carl Rogers stated, “Man’s inability to communicate is a result of his failure to listen effectively.”  Are we listening effectively to those with dementia?  Probably not – especially if we are only “listening” for the verbal.  The failure to communicate is often with those of us who are non-demented because WE are the ones having the most difficulty interpreting what is being “said” to us – whether verbal or non-verbal.  And, often OUR inability to understand and respond appropriately leads to their frustration, agitation, and behaviors.  Therefore, it is important for us to develop and hone OUR communication skills and act as communication detectives when working with individuals with dementia.

I think that the best way of looking at dementia and communication is to examine what WE are doing wrong – not to discuss what those with dementia are not doing right (they can’t help it…WE can).  The following is a list of OUR communication failures – things that we do or don’t do in regards to communicating with those with dementia:

1.  We argue with them or try to correct them

2.  We use the wrong approach and/or ignore personal space

3.  We ignore them (or their requests)

4.  We are dismissive of them (or their concerns)

5.  We try to reassure them (not allowing them to express emotions)

6.  We distract them or redirect them without addressing their issues first

7.  We tell them what to do (don’t offer them choices)

8.  We bombard them with information or too many choices

9.  We talk about them or through them (not to them)

10.  We perform tasks without informing them of what we are doing

11.  We only listen to the verbal and ignore the non-verbal

12.  We fail to see the world from their perspective

13.  We use only one of the senses

14.  We don’t pay enough attention to external stimuli

15.  We use negatives

16.  We use sympathy (rather than empathy)

17.  We try to fix the problem rather than to listen to the real issue

18.  We try to get them to remember

19.  We lie to them or impose our ideas on them

20.  We are afraid of behaviors (don’t see them as a form of communication)

Each of these will be discussed in more detail in the posts to follow.  Stay tuned…

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“My father has Alzheimer’s. He doesn’t have dementia.”

This is probably one of my favorite dementia misconceptions and one that I hear quite frequently.

In order to clear up the confusion, here is my version of Dementia 101:

Think of dementia as an umbrella:  dementia is the overarching canopy of the umbrella and Alzheimer’s, which is characterized by plaques and tangles in the brain and which has a slower disease progression, is only one of the ribs.  Other ribs or types of dementia include:

* Vascular Dementia (also known as Multi-Infarct Dementia):  a type of dementia that is caused by the blockage of blood flow to the brain, usually related to strokes, TIA’s, and heart disease.  This type of dementia typically happens in a stair-step decline due to the decline happening as a result of mini-stroke incidents.  It is the second most common form of dementia (Alzheimer’s is the most common).

*Fronto-temporal Lobe Dementia (also known as Pick’s Disease):  a type of dementia that is caused by the degeneration of the frontal lobes of the brain.  This dementia is typically present in younger individuals and is characterized by bizarre behaviors, no inhibitions, deterioration of language, and loss of muscle control.

* Lewy Body Dementia:  a form of dementia that is caused by abnormal protein deposits in the brain.  It is characterized by muscle rigidity, delusions and/or hallucinations, and difficulty with REM sleep.  Lewy Body Dementia is the third most common form of dementia.

* Parkinson’s Dementia:  a type of dementia that starts with the physical deterioration of Parkinson’s disease.  Parkinson’s individuals also develop Lewy Bodies and, therefore, they have similar characteristics of Lewy Body dementia.  The difference and difficulty with Parkinson’s Dementia is that those individuals with Parkinson’s typically get the dementia late in the Parkinson’s disease process.  Their bodies deteriorate before their minds do, but people often treat them as though they have dementia long before they actually do.

* Huntington’s Disease:  a type of dementia that is caused by a defective gene and that affects the central portion of the brain.  It typically develops in younger individuals and is characterized by abnormal mood swings, irritability and angry outbursts, obsessive compulsive behaviors, and involuntary movements.

*Early Onset Alzheimer’s:  a form of Alzheimer’s that is seen in persons under the age of 65.  One of the youngest individuals that I have met here in Utah with Early Onset Alzheimer’s is in his 30’s.  The tragic thing about these individuals is that they are diagnosed at a time when their families are young, they are in the middle of their careers, and it typically has a devastating effect because the breadwinner of the family becomes unable to financially support them and there are not as many resources available to these individuals and families.

So, although you can say, “My father has dementia.  He doesn’t have Alzheimer’s,” you cannot say, “My father has Alzheimer’s.  He doesn’t have dementia.”

For those of you who are visual like I am, here is the visual to help clear things up:
Dementia umbrella

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