Tag Archives: Dementia Live

Renewal, Rebirth and Regrowth…Hope for Caregivers

Despite our disappointments, struggles, and unknowns, we must cling to hope – for renewal, rebirth, and regrowth.  This season brings hope as we witness new blossoms, trees budding and renewed faith.  Caregivers need to above all, cling to their hope that this journey you are on will bring new blessings, opportunities for personal growth, and strength to carry on your important work.

I certainly know from personal experience that this is not easy, and the journey is often long, hard and often anything but hopeful.   I have a dear friend now who is going through the depths of darkness in her own caregiving journey with her husband and life partner who is losing his battle with stage 4 glioblastoma.  Being there as a friend, mentor, confidant and soundboard is probably one of the most helpful roles I can play right now.  I certainly cannot fix today, but I can lend small nugget of hope and assurance to her that she needs to get through today and the difficulties that she may face tomorrow.

As caregivers, we belong to a larger community.  When we connect with others we can lend that ear, or hug, or shoulder to cry on or laugh with.  When we do that for others, we offer one another the assurance that they are not alone on this often lonely journey.

This simple message today is to encourage all of you to reach out- to a family member, neighbor, friend, colleague, or even a stranger.  We all know someone struggling.   Just your presence can brighten another’s day, whether they are caring for someone else or themselves.  Just your presence, warm smile and a gentle touch can lend strength to another in ways that are often immeasurable.

Pam Brandon is President/Founder of AGE-u-cate Training Institute and a passionate advocate for older and adults and those who serve them.  www.AGEucate.com

 

Communicating with Terms of Endearment – A Big NO NO

Dear, Honey, Hun, Sweetie, Buddy, Chief, That’s a good boy, Let’s go potty now.  No, I am not talking to my 18-month-old, I am repeating terms of endearment and phrases I hear in memory care and assisted living every day. There is so much research behind the use of this type of language researchers refer to it as elderspeak. I know I am guilty of using terms like these and I know you are too but explore the impact it may be having on our residents.

Although our intentions are generally well-meaning, communicating in such a way with a resident conveys a message of vulnerability, frailty, and inferiority. In fact, communicating with terms of endearment can be viewed as a caregiver trying to control or take charge of the situation rather than providing help and support to their resident.   You may be thinking “this doesn’t matter to me, my resident has dementia, they won’t remember anyway”. And while it is true that your resident may have little to no short-term memory, they are capable of associating feelings with interactions. They will pick up on the tone of your voice and the inflections that you are using.

I feel it’s important to mention that not all residents will respond negatively to the use of elderspeak, but to keep things consistent for all our residents we should stop using terms of endearment, they can be viewed as belittling, condescending and can trigger negative behaviors.  Did you know that using terms of endearment with a resident could lead to a state citation?

Let’s talk about some negative and positive examples:

When helping Ann, a pleasantly confused woman, after lunch the caregiver says “Sweetie” let’s go change your shirt, you spilled juice all over it, and then we will go potty, OK Annie?” The caregiver reaches out her hand to guide Ann to her room and says, “that’s a good girl, come this way” While the caregiver only means to help Ann and show that she cares for her the impact of her words could have a negative effect on how Ann will respond to the care she is about to receive. She may pull away from the caregiver and the caregiver will think that Annie is just being resistive when really Ann is feeling disrespected or confused.

The caregiver’s tone and language may remind Ann of a time when she was young, and her mother would call her Annie when she was caring for her, it could help to create feelings of a safe environment for “Annie”. OR depending on where Ann is at in her current reality it may trigger negative feelings. She could be reminded of a time after she was physically abused by her spouse when he would use terms of endearment to control or belittle her, maybe he only called her Annie after a nasty fight. OR consider this Ann was a high school principal and the use of a term like this offends her! She demanded that her students and staff respect her and the education she worked hard to achieve, and they called her Mrs. Brown, never Ann and most certainly never Annie!

The immediate impact of Elderspeak may not always be apparent and we must never assume that using a term of endearment is appropriate. Always call a resident by their proper name and if they have a title like Dr. or Professor until you have gained permission to call them by another name. If they have a nickname that they prefer to be called it must be documented in their ISP. For example, John has been called Bub his entire adult life, this is ok! If fact Bub might respond negatively to be calling John.

Research has shown there are 3 main factors on a caregiver use of Elderspeak.

  1. Familiarity with the resident- The more comfortable we are with the resident the more likely we are to use elderspeak.
  2. Whether the resident has dementia- the level of dementia plays a huge role in our use of elderspeak, the further progressed the dementia is the more likely we are to use a term of endearment. Maybe we view the resident as helpless or frail and in our effort to show or convey caring we may use elderspeak.
  3. If the resident is alone with the caregiver or if there are others present during the interaction. In the presence of family, other residents, or other caregivers we are less likely to use elderspeak, maybe because deep down we know it is disrespectful and we are more aware of what others would think if we used endearing terms.

So, have you ever caught yourself addressing a resident with Elderspeak? I know I have. And the only way we can change this behavior is to be aware of it then stop it.

My challenge to you is to be more aware of not only your communication methods but of those around you.  Maybe you need to remind a co-worker, in private that they shouldn’t use endearing terms. Or you may need to be reminded yourself on occasion.  After you catch yourself using elderspeak you may need to apologize to your resident when you call her Sweetie and correct your actions by using her preferred name. I challenge each of you to focus on the strengths of your residents and not their inabilities or weaknesses. Remember that everyone has value and should be treated in a respectful way.

Emmy Kaczmarksi, RN is a Master Trainer for AGE-u-cate® Training Institute, Dementia Educator, Behavioral Specialist, and works at White Pine Senior Living in Hudson, WI.  

http://www.AGEucate.com

Unravelling the Mysteries of Challenging Behavior

Challenging behavior is a catch-all term that, in the context of dementia, includes one or combinations of things like shouting, wandering, biting, throwing things, repetitive talking repetitive movements, destroying personal possessions and other objects without regard for whom it belongs, agitation and general anger, physical  or verbal attacks on others, waking others at night, making sexually inappropriate comments, disrobing inappropriately, and urinating or defecating in undesirable locations. This is not an all-inclusive list and I am sure you can think of many more examples that fit under the umbrella term of challenging behavior.

These behaviors are often surprising and disruptive, and we want the behaviors to stop, we do not understand them, and we see that the problem is with the person having the behavior…. but what we need to remember is the person who is living with dementia and is displaying the challenging behavior is really only trying to communicate an unmet need to us, and we are getting it!

As dementia progresses it limits and impairs the way a person once knew how to communicate, and their attempts to make us understand what they are seeing, feeling, smelling, tasting, or sensing. They may express themselves in a negative way, a way that we call, you guessed it – a challenging behavior.

Let us take a step back for a minute. Maybe if we thought of the challenging behavior as a form of communication we would not be so quick in trying to stop the behavior, maybe we would take a step back, and take time to understand the behavior and then realize it is a behavioral expression.

A person living with dementia may express through their behaviors what they like or do not like about whats going on around them, about their environment or what a caregiver is doing right or wrong for them and often without us knowing we are the cause of the challenging behavior. Mind blowing right!?

Let’s think about this example

Sally is a pleasantly confused woman who is a newer resident living in a memory care facility. She is unable to fully communicate needs verbally but if cued and given enough time she can complete most ADL’s without out hands-on assistance, she generally is very cooperative with staff. However, every morning staff has reported to their manager that when they are getting Sally ready for the day she will bite them when they are trying to assist her. The staff is now refusing to provide care to Sally in the morning because of her biting problem and they want to give her medicine to calm her down.

OK…Now let us think. What is the problem here? I’ll give you a clue…It is not Sally’s biting problem. If you said the staff’s approach you were correct, clearly Sally is not appreciating the help she is receiving in the morning to get dressed.    To understand why Sally is biting we need to try and figure out what she is is trying to tell us.

Here are some things to consider

  • Maybe residents feel they are being rushed
  • Maybe the staff is not giving clear one step directions
  • Maybe it is cold in the room and Sally doesn’t like being cold when she dresses
  • Maybe Sally doesn’t like to get up until 9 am and we are trying to get her up at 6

Or

  • Maybe her behavior is because we don’t understand the uniqueness of Sally and we haven’t take the time to get to know her. If we had talked to her family, we would have discovered that Sally always got up, put her robe and slippers on, made her coffee and enjoyed a cup while reading the newspaper before starting her day.

In this case, Sally just wanted to follow her routine, a routine she had done for years, a routine that felt normal and safe. When caregivers came into her room to get her dressed Sally may have felt out of sorts because she was used to doing things a certain way, she may have felt uncomfortable not following her routine and she may have felt threatened if staff was trying to rush her or if she didn’t understand.

When we seek to unravel the mysteries of behavioral expression in dementia we are not only going to help our resident, but we will be helping ourselves! Start putting the pieces together to help create that person-centered environment we all long to be a part of.

Emmy Kaczmarksi, RN is a Master Trainer for AGE-u-cate® Training Institute, Dementia Educator, Behavioral Specialist, and works at White Pine Senior Living in Hudson, WI.  

http://www.AGEucate.com

 

 

Creating Neighborhoods for Life – What Research Tells Us

The number of older people is rising dramatically, particularly those in the 85 years and above age group.  Because the likelihood of developing dementia increases with age, reaching a one in 3 chance by the time a person reaches 85, we must turn our attention to eldercare, age-friendly initiatives to be that of dementia-friendly initiatives.  Let’s look at what research tells us about how our neighborhoods can be transformed to age-friendly, dementia-friendly places for people to live as they grow older.

The Wellbeing in Sustainable Environments Research Unit of the Oxford Institute for Sustainable Development in the UK concluded a three-year research project, examining how the outside environment could be more dementia-friendly.  These findings are enabling designers to consider criteria in developing dementia-friendly neighborhoods, whether that is in urban, suburban or rural areas.

Summary of their key findings include:

  • Older people with dementia, particularly in mild to moderate stages, continue to go out alone, many times daily.
  • Older people with dementia tend to limit their outside activities to relatively undemanding situations, such as going to the corner shop, posting a letter or going for a walk.
  • Older people with dementia tend to use cars or public transport only when accompanied by others os that independent outside activity is restricted to the immediate neighborhood within walking distance of home.
  • Although the interaction of older people with dementia with the outdoor environment is limited, it is clear that it provides some sense of independence and self-respect at a time when they are losing control over their own abilities and lives.
  • Older people with dementia generally enjoy going out but anxiety, disorientation or confusion can occur in complex, crowded or heavily trafficked places or when startled by sudden loud noises.
  • Older people with dementia tend to be less aware of physical and social dangers in the outdoor environment and of the possibility of losing the way than older people without dementia.
  • Older people with dementia cannot always interpret the cues that signal the use of buildings, the location of entrances or the behavior that is expected in different places.
  • Older people with dementia continue to plan and visualize proposed routes and tend to use landmarks and other visual cues rather than maps and written directions as wayfinding techniques.
  • Older people with dementia tend to prefer mixed-use, compact local neighborhoods, quiet pedestrian streets and welcoming open spaces, simple explicit signs with large, dark, unambiguous graphics on a light background.
  • Older people with dementia prefer smooth, plain, non-slip, non-reflective paving and easy to use street furniture in styles familiar to older people.

These guidelines provide us with valuable insight in creating neighborhoods of the future.  As the dementia-friendly initiatives sweep our country, it is important that leaders gain the education and knowledge about dementia and how we might best work collaboratively to allow as much safe independence for our older adults as possible.

Pam Brandon is President/Founder of AGE-u-cate Training Institute and a passionate advocate for older adults and those who serve them.  She is the creator of the internationally recognized Dementia Live® Program, enabling those who care for and serve older adults to gain a first-hand understanding of living with dementia.  

http://www.AGEucate.com