Generally speaking…

One of the most difficult things to deal with when communicating with someone with dementia is a demented individual’s tendency to speak in generalities and ambiguities.  This creates an environment in which the non-demented individual has to act as a communication detective and a typical guessing game ensues.  This can be very frustrating for both parties and can cause arguments and anger, but what if it doesn’t have to be such a struggle?  IS there a way to make this communication easier?  Absolutely!

First of all, it is important to understand that just as language and understanding develops when we are children, it disappears in a similar way in dementia.  In childhood, we first learn the name of a particular item, then we learn that similar items also have the same name.  We then learn to distinguish these items from others and what their specific features or uses are.  In dementia, we tend to lose the ability to know the specifics about an item, we then lose the ability to distinguish items, and finally we lose the words for the item and how they are used.

I’ll give an example that I recently encountered with a demented client and her daughter to illustrate the issue and how to resolve it:

My client’s daughter was frustrated that her demented mother was constantly looking for something, but couldn’t get the right words out to tell her what she wanted.  The daughter would sometimes try the “guessing game”, but this tended to frustrate her mother and then her mother would get upset with her.  Often, her mother would use a word that was not even related to what she was looking for which made the “guessing game” even more difficult.  What made things even more trying was that her mother would always put things where they didn’t belong so keeping track of her mother’s things was difficult.

The exchange would often sound something like this:

Demented mother:  “I can’t find it!  Have you seen the…um…you know…”

Daughter:  “Seen what, mom?”

Mother:  “You know…the thing!  I can’t find it.”

Daughter:  “I don’t know what you’re talking about.”

Mother:  “Yes, you do!  I had it last night!”

Daughter:  “You had a lot of things last night!  Which thing are you talking about?!”

Mother:  “Oh you’re no help!”

Daughter:  “Is it the pen?”

Mother:  “No!”

Daughter:  “Is it the telephone?”

Mother:  “No!”

Daughter:  “Is it the remote control?”

Mother:  “No!  Nevermind!  You don’t know anything!”

The resolution:

1.  Use ambiguity and generalities back to them.  For example, if she says, “I can’t find ‘it’,” reflect back this statement in a form of a question using the general term that she did, “You can’t find ‘it’?”  This opens the ability for her to either describe ‘it’ or to possibly find the word for ‘it.’  At this point it doesn’t really matter what ‘it’ is – what matters is that you have allowed her to try to find a way to describe ‘it’ or find the right word for ‘it.’ on her own.

2.  Maintaining the ambiguity, ask him/her to describe ‘it’.  “What does ‘it’ look like?” or “Where did you see ‘it’ last?”  This will help give you clues as to what ‘it’ is and/or will allow her to come up with the word on her own.

3.  Use visual cues.  Sometimes, just showing the demented individual a picture of an item will help them to find the word.  For example, I had a recent client who could not remember her son’s name in a conversation until I showed her a picture of her son.  She then, immediately was able to come up with his name.

4.  Label things.  Sometimes, labeling items with words or pictures helps demented individuals to be able to remember their names or to put things where they belong.  For example, labeling the garbage can as “trash” and the clothes hamper as “dirty clothing” may help to remind what goes where.

5.  Don’t correct them.  If the demented individual says that the dog is a “cat”, use a generality to reply such as, “Yes, that is a very nice animal, isn’t it?”  Oftentimes, they will catch their own mistake and if they don’t, what does it matter anyway?  Self esteem is more important than correctness.

Here’s what the exchange would sound like using these resolutions:

Demented mother:  “I can’t find it!  Have you seen the…um…you know…”

Daughter:  “You can’t find it, mom?”

Mother:  “Yeah, it was here last night.”

Daughter:  “What does it look like and I’ll help you find it.”

Mother:  “It’s brown and it has these pointy things…”

Daughter:  “Pointy things?  What do you do with it?”

Mother:  “I need it to fix my hair.”

Daughter:  “Oh…are you looking for your hairbrush?”

Mother:  “Yes…have you seen it?”

Daughter:  “Let’s look in the bathroom near the sink where the hairbrush basket is.”

Mother:  “Ok…  There it is!”

This was a very simplified example, but it shows the difference in using ambiguities rather than the guessing game.  Do you have any other suggestions?  Send them to me via my contact page.

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MCI (Mild Cognitive Impairment) or Dementia?

Mild Cognitive Impairment (MCI) is a relatively new diagnosis that is leaving family members of loved ones’ with this medical determination very confused.  This is because MCI is not a diagnosis of dementia.  It is a medical finding suggesting that there are some cognitive impairments that may indicate a precursor for dementia down the road.  Not all MCI’s become dementia; however, all dementias begin as MCI.

A phrase that I often hear from family members of a loved one with MCI is “But mom doesn’t have dementia, she has Mild Cognitive Impairment”, as if the diagnosis is a stagnant one – you get one test and diagnosis and that’s it.  The harm in this way of thinking is that it encourages denial and ignores important help and services that could be beneficial once a dementia diagnosis is reached.  Think of it this way:  MCI is like pre-diabetes and dementia is like diabetes.  If you know that you have pre-diabetes, wouldn’t you want to continue to get tested periodically to be sure that you have not crossed over into a diagnosis of actual diabetes?  With dementia, it is the same.  Once there is a diagnosis of MCI, there should be periodic follow up medical appointments to look for any further signs of dementia.

When does MCI become actual dementia?  According to the Alzheimer’s Association, the definition of MCI is a “noticeable” and “measurable” decline in memory and thinking skills that does not interfere with a person’s normal daily functioning.  This means that MCI becomes dementia when the individual’s cognitive decline begins to interrupt that person’s ability to normally function in his/her typical daily routine.  In other words, someone with MCI may forget what goes into making a spaghetti dinner, but can follow a recipe to make one.  Whereas, someone with dementia will tell you that s/he had a great dinner last night, but couldn’t tell you what it was and you will not be able to find evidence that s/he cooked anything.

The important thing to remember about MCI is that it should not simply be accepted and then disregarded just because it is not a dementia diagnosis.  It is a recognized condition that should be seen as a potential precursor to dementia and it needs to be further monitored, tested, and followed up on regularly.

http://memory.ucsf.edu/education/diseases/mci

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When is it time to find help?

Many families miss the signs and symptoms of when it is time to find help for a loved one who has dementia and is living at home.  The following are a few things to look for:

If your loved one is living at home alone, s/he may not be as independent as you think s/he is.  Some concerning cues to look for with someone who is living at home alone are:

1.  Are you finding medications around the house or that the pills in the pillbox have not been taken every day or in the right order?  There are high-tech electronic pill boxes that can dose out the right medications and will signal the individual to take them, but even these have their drawbacks – the person has to hear the signals or s/he may take the pills out of the box and put them down elsewhere, forgetting to take them.

2.  Is your loved one still wearing the same clothing that you saw him/her in when you visited 2 days ago?  Not changing clothing may be a sign that your loved one is not appropriately taking care of his/her own hygiene.

3.  Is your loved one losing weight?  Weight loss is a sign of malnutrition which means s/he is not eating appropriately.  Other signs of your loved one’s inability to take care of his/her own nutrition are:  perishable food sitting out on the counter for long periods of time; snack-type foods disappearing quickly, but food in the refrigerator or that needs to be cooked being untouched; your loved one telling you that s/he is eating “whatever is in the cupboards” or “the usual” but cannot tell you specifics regarding what s/he had for breakfast, lunch, or dinner; not finding dirty dishes, clean dishes sitting in the dish drain, or that the dishwasher has been used.

4.  Is your loved one in bed every time you visit or call?  This may be an indication that s/he is no longer capable of structuring his/her own day.  Other signs of this are:  ceasing to be involved in social activities that are in his/her regular routine; declining offers from friends or loved ones to go out or to get together – avoiding social contact is often a way of trying to hide his/her cognitive deficits; getting phone calls at odd times of the day/night – s/he may be experiencing some time confusion.

5.  Are you finding odd things around the house where they don’t belong or is your loved one’s surroundings suddenly very messy when s/he used to be such a fastidious housekeeper?  This may be an indication that your loved one is having difficulty taking care of his/her surroundings.  Some things to look for are:  garbage not being put in the trash can and/or trash not being taken out; wet, mildewing clothing being found in the washer or dryer; items belonging in the bathroom being found in the kitchen or vice versa.

(As a side note, many of these concerns may be an indication of depression as well so it is still very important that you seek help).

If your loved one is living at home with a caregiver, the signs of when help is needed may be harder to recognize because the caregiver tends to cover for the debilities and needs, and the caregiver is often not likely to admit that there are problems or that s/he needs any help.  This is often because they feel that doing so is admitting failure.  Some concerning signs to look for when your loved one is living with a caregiver are cues from your loved one and some are cues from the caregiver.  These may include:

1.  Is your loved one looking disheveled or have a smell to him/her?  This may indicate that personal hygiene is becoming too much for the caregiver to handle.

2.  Is your loved one in bed or sitting in the same spot each time that you visit?  This could be an indication that the caregiver is having a difficult time managing either the physical care or the need for activity for your loved one.

3.  Does the caregiver look worn, tired, or admit to not sleeping well?  This is often an indication that the individual with dementia being cared for is not sleeping regularly and/or is very active, creating a situation that is wearing out the caregiver.

4.  Is the caregiver complaining of increased medical issues or is s/he having increased trips to the doctor or emergency room for his/her own physical issues?  This is a good indication that the caregiving is taking a physical toll on the caregiver and that s/he is trying to do too much on his/her own.

5.  Is the caregiver telling you that s/he needs more help?  If so, please LISTEN!  Caregivers have a tendency to minimize their situation and to cover up the truth when it comes to their needs because they do not want to look like failures or admit that they cannot do it all.  So, if a caregiver is asking for help, s/he desperately needs it and needs it NOW.

Where do you get help?  From your loved one’s physician, your local Area Agency on Aging, your local Alzheimer’s Association, private Geriatric Care Managers, and personal care agencies.  If you need help in finding any of these in your area, just contact me…I am happy to help!

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Home for the Holidays

The holidays can be a difficult time for those with a loved one with dementia for several reasons:

1.  The holidays are a natural time of reminiscing and therefore a reminder of better times with and for your loved one.

2.  The holidays are a reminder of losses related to the disease process – for example, grandma was the best pie maker or grandpa was the best Christmas lights decorator, etc.

3.  The holidays are a time for families to get together and having grandma at the family Christmas celebration typically becomes more difficult to manage as the disease progresses due to cognitive as well as physical declines.

4.  Having the family together can mean the expression of multiple viewpoints on grandma, her disease, and what to do about it.

So, how do we make the holiday gathering and celebration a positive one?  By learning to adapt.  Adapting means acknowledging loss and accepting change, adjusting our goals and expectations, and modifying our mindsets and traditions.

Here are a few tips on how to do this:

1.  Let go of the past – it’s gone.  Do not hold onto roles and expectations that your loved one fulfilled in the past.  Instead, involve him/her in more realistic activities such as wrapping gifts, decorating cookies, rolling out dough for the pies.  One family had their mother wash the potatoes that would be transformed into mashed potatoes for Christmas dinner.  She was so thrilled to be part of making the dinner that the potatoes were scrubbed so well that they almost didn’t have to be peeled.

2.  Embrace the past – it’s part of who you all are.  Pull out the past Christmas albums and videos and share them.  Positive memories equals positive thoughts and feelings – and emotion is the most basic of cognitive functions.  Your loved one may not remember the particulars of each Christmas (and be very careful not to play the “You remember” game), but s/he will definitely be attuned to the feelings.

3.  Minimize – it will decrease your stress and theirs.  Overstimulating lights, sounds, and activity causes stress and agitation for those with dementia.  Consider turning everything down a notch.  And, if you have a really large family with tons of little children who will be running around and screaming, maybe it would be better to consider having grandma there after they have all dispersed or possibly in a separate area/room while they are there.  One family decided to have their grandmother with dementia celebrate Christmas by having the little children (her great grandchildren) come to the Assisted Living to sing carols to all of the residents on Christmas Eve day – which everyone loved.  Afterwards, the children went home and the adult children took her to a quiet Christmas lunch.  This was a perfect solution and it also took into consideration the amount of time that grandma could handle being around the children and being out and about.

4.  Make a plan – to care for grandpa and for his caregiver during the Christmas get together.  One of the biggest complaints that I have heard from a home client was that her family seemed to converge upon her at Christmastime, only to use the family get together as a time to eat her food and to tell her how to take care of her husband who has Alzheimer’s.  What this caregiver really needed was support.  Family meetings about grandpa are best to be held outside of holiday functions, and family members should focus on creating a pleasant experience during the holiday by taking turns watching after grandpa while others are assisting grandma in the kitchen.  Save the serious talk about the caregiving situation for another day and time.

5.  Create new traditions – or maybe adapt the old ones.  One family always looked forward to their Christmas tradition of traveling downtown together to see the beautiful Christmas lights, but this year would have to be a bit different since grandpa’s health was not good and grandma’s Alzheimer’s made it difficult for her to be in the cold and the crowds.  So, this year, the family decided to change up their Christmas tradition.  In this age of digital media, the family decided to have each of the children’s families visit Christmas lights around town and take pictures of them.  These pictures were then digitally sent to one member of the family who put them together and put Christmas music behind them.  This year, the family will be seeing Christmas lights in the form of a Christmas video and instead of going out in the cold to enjoy them, they will be watching from the comfort of grandma and grandpa’s home when they gather for Christmas dinner.

Whatever the adaptations you or your family decide to make this holiday season, just remember that with Alzheimer’s and other dementias, it is more important to create the positive moments for your loved one than it is to stick to the standards of past Christmastimes and traditions.

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Haul out the Holly!

Or maybe not!

As I was doing some of my own holiday decorating and listening to my Christmas music, it occurred to me that maybe many of you are not familiar with some of the holiday decorating do’s and don’ts for dementia, so here are a few tips:

1.  Are you aware that many of the popular Christmas plants are actually poisonous?!  From most toxic to least toxic are:  Christmas Cactus, Holly, Mistletoe, Amaryllis, Poinsettias, and Christmas Trees.  Yes, even Christmas Trees are poisonous!  The ill effects of these plants range from mild stomach issues to vomiting, diarrhea, blurred vision, heart arrithmeas, blood pressure changes, heart failure, and even death.  So, depending upon your loved one’s level of cognitive loss and potential to see a holly berry as a tasty treat, you may want to consider purchasing a fake version of these or at least make sure that these plants are out of harms way/reach.

2.  What would Christmas be without the scents of the season?  A lot less toxic.  As with the plants listed above, I would also caution in using many of the overpowering Christmas scents in liquid or candle forms for several reasons:  the temptation to drink them is there, the temptation to eat them is there, the temptation to light them is there.  Scent is important and the olfactory nerves are fantastic gateways to memory so use them wisely and safely.  There are many ways to get the Christmas scent in your home without the safety issues including: electric candles, automatic scent machines/sprayers (keep these out of reach), spraying scents on dryer sheets or other materials, and nothing beats the natural scents of cooking (homemade apple pie comes to mind).

3.  Put away some of the lights.  The Christmas season would not be the Christmas season without all of the lights, but sometimes we can go a bit overboard.  Remember that individuals with dementia are already dealing with an overwhelming and over-stimulating world – don’t make it worse by putting up all of the colorful flashing lights!  Use softer lights and fewer of them.  And, although you may think that the lights and sound reindeer that sings “Grandma got run over…” is funny, your loved one is likely to get annoyed/irritated easily by it (so skip it please).

4.  If your loved one lives in a community setting such as a nursing home or an assisted living, remember that these places have their own rules about decorations (usually mandated by the State and the building’s fire codes).  Some places do not allow for real trees or wreaths and have restrictions on lights, extension cords, and fragrance machines.  Make sure that you know what these rules are and follow them.

5.  Allow your loved one to be part of the decorating process.  If s/he cannot physically decorate, ask for his/her opinion on where to put things, etc.  If s/he cannot mentally assist in decoration but physically can, hand him/her an item and point where it goes.  The beauty in decorating is not in the finished product, but in the memories made in the process.

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“Calling all Superheroes…” (I mean, Caregivers)

According to the Caregiver Action Network, there are approximately 65 million superheroes, uh…unpaid caregivers, providing an average of 20 hours per week of care to a disabled and/or aged loved one across the United States (http://caregiveraction.org/statistics/#CaregivingPopulation).  If we put all of those caregivers in one place, that would equal more than the population of all of the states west of the Rocky Mountains combined!

To say that caregivers are superheroes is an understatement!  The list of duties, chores, and responsibilities that they have on a daily basis is enormous and many of them are doing so with their own frailties (in the case of an elderly spouse), or their own immediate family duties and responsibilities (in the case of a middle-aged daughter caring for her elderly mother), and at their own personal and financial expense.  These superheroes juggle doctors appointments, obtain mail and pay bills, assist with medications, help with bathing and dressing, provide laundry services, cook and serve meals, and clean dishes, floors, and front porches.  And let’s not forget that they provide socialization, daily activities, and outdoor lawn and garden care and leaf and snow removal!  AND then, some of them go across town to their own homes to do it all over again!  Whew!  It’s exhausting just to think about it!

Most of these Superhero caregivers take on these duties not by choice, but by chance or circumstance.  Unlike Superman, who knew from youth that he would be a Superhero, few caregivers knew that they would grow up to be caregivers, and unlike the X-Men, who had their School for the Gifted, none of these caregivers were fortunate enough to have a School for the Caregiver to give them the training that they would need to succeed.  And yet, caregivers everywhere somehow have heaped the idea on themselves that they should be everything, know everything, and do everything for their loved one.  This Superhero mentality is what leads to caregiver burnout and stress.

If there is anything that I could say today that would be of benefit to caregivers, it would be this:  Superheroes only exist in movies and comic books, and NO ONE expects you to be a Superhero!  I’ll say that again, “You don’t have to be a Superhero!”

Even if you were a Superhero, have you forgotten that they had help?!  Have you ever heard of the Fantastic Four, the Super Friends, the Justice League, and the Avengers? Even Batman had Robin.  In other words, you are not alone and you do not have to do this job all by yourself!  Not only is it ok to ask for help, but it is expected that you will need help and there are many programs and services available to assist you like:  Support and Education Groups, Financial Planners, Chore Services, Personal Care Attendants, Adult Day Centers, Home Health, Hospice, Respite Services, Assisted Living Communities, Dementia Care Facilities, Geriatric Psych Facilities and Services, Rehabilitation Centers, Skilled Nursing Communities, and Specialty Physicians.

So, how do you know what help is right for you and your loved one, and how do you find this help?

A Superhero would contact S.H.I.E.L.D.  Fortunately, Caregivers also have organizations that can help them wade through the options.  These include, but are not limited to:

Seniors Care Source (serving Utah, Salt Lake, Davis, and Weber counties):   http://www.seniorscaresource.com

Your local Area Agency on Aging – in Salt Lake County, that is: http://www.slco.org/aging/caregiverSupport

The Alzheimer’s Association:  http://www.alz.org

If you need more information, feel free to reach out to me through the “Contact Me” tab.

Related articles:

http://www.utsandiego.com/news/2013/oct/15/tp-5-things-to-know/

http://compassionvann.wordpress.com/

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Excuse me, how do I get my validation?

So, now that we’ve discovered what validation is and the principles behind it, the question is:  “How do we do it?”

To validate someone is to show that what s/he is saying and feeling has meaning and deserves to be heard, understood, and accepted.

Techniques in validation include:

1.  Centering – you must first let go of your own concerns and needs in order to be open to communication from others

2.  Using “Who, What, When, Where, How” questions to explore further, staying away from “Why” – they don’t know why and this will just frustrate them

3.  Rephrasing – use their statements back to them by rephrasing the statements in order to get more information – sometimes, doing this in the form of a question is helpful

4.  Using their preferred sense – if they are visual, you use sight words; auditory, use hearing words; kinesthetic, use feeling words

5.  Using polarity – asking the extremes like “what is the best thing” or “what is the worst thing” about a situation can give you good insights

6.  Asking the opposites – asking the person to imagine the opposite can sometimes be helpful

7.  Reminiscing – “Has there ever been a time when xyz happened before” can give you insights in possible past issues that have not been resolved or can give an example of how s/he dealt with something like this in the past

8.  Using ambiguity – if a demented person uses ambiguous phrases or talks about ambiguous people, go with the ambiguity by using the same he/she/it phrases used and don’t try to guess who they are talking about

9.  Using eye contact – don’t use direct eye contact with someone who is angry or feels they are being verbally invaded; definitely use eye contact with individuals who are more confused, sad, and withdrawn

10.  Using empathy – not sympathy, don’t say you’re sorry because that doesn’t mean much; statements like “That’s rough” or “It must be frustrating when…” are very helpful; I call it “Name that Emotion”

11.  Matching and mirroring emotions and actions – doing so helps you connect with what they are doing and potentially why

12.  Using touch – all human beings need physical touch, whether it’s a hug, a kiss on the cheek, holding a hand, a hand on the shoulder, etc; do not, however, touch an angry individual

13.  Using music when appropriate – music is stored throughout the brain and because of this, it can be accessed at any time in the dementia disease process; music is a very powerful tool

The important thing about validation is that we are picking up on nonverbal communication and emotions – you cannot take what the demented individual is saying at face value.  In fact, validation is really about trying to get underneath what is being said to the true need that the individual is trying to communicate.

The following conversation using validation with a 78 year old demented male Assisted Living resident is an example of this:

Resident:  When are you going to help me get my money back?

Me:  (Rephrasing) You need me to help get your money?

Resident:  Yes, she has it and I need it back.

Me:  (Ambiguity) She does have it, doesn’t she?

Resident:  Yes, you need to tell my daughter to bring me my money.

Me:  (Empathy) Your daughter has your money and that is obviously frustrating you.

Resident:  It’s very frustrating…no…it’s making me mad.

Me:  (Polarity) What’s the worst thing about your daughter having your money?

Resident:  I can’t pay the doctor.

Me:  (Using the W questions) What do you need to see the doctor for?

Resident:  (grabbing his stomach)  So he can give me something to stop this from hurting!

Me:  (Empathy)  That’s horrible that you are hurting so badly.  Let’s go find the nurse and see if she has some medications from the doctor for this.

Resident:  I knew I came to the right person.

As you can see in this example, the resident came to me angry at his daughter for taking his money, but the real concern was that he was in pain, and I never would have gotten to the bottom of that without using validation.

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