How big is your bubble, and who hangs out in it with you? As an adult with full mental capacity. You typically get to choose how close you get to others. Or you can at least move or react appropriately when someone tries to invade your personal space.
But what if you couldn’t?
Some forms of help when it come to caring for the dementia patient is invading personal space. It may at times undermine the patient’s dignity. Behavioral and psychological symptoms of dementia may include self-protective responses from the patient. Responses maybe in the form of aggression or violence.
Understanding the Behavior
But it’s important for the caregiver to understand that every behavior has its meaning. And that is to explore underlying causes and to respond in the right way.
[su_note note_color=”#2c30cb” text_color=”#fbfcfb”]According to the American anthropologist Edward Hall, whose 1960s research on personal space still stands. We envelope ourselves in bubbles of four different sizes. And each applying to a different set of potential interlopers.
For the average American, “intimate space” extends outward from our bodies 18 inches in every direction. And only family, pets and closest friends may enter. Moving outward, the bubble Hall actually deemed “personal space” extends from 1.5 feet to 4 feet away.
Friends and acquaintances can comfortably occupy this zone. But strangers are not. Extending from 4 to 12 feet away from us is “social space”. That’s where we feel comfortable conducting routine social interactions with new acquaintances or total strangers. Beyond that is “public space” is open to all.
Little things can make the biggest difference. Appropriate communication such as verbal and non-verbal. They are the basics in helping a patient maintain his or her self-identity.
For example, establishing eye contact and smiling are easy. But most people tend to easily forget about it. A “supportive stance”, relaxed and open with arms at the sides, instead of crossed shows respect. And it is much less threatening.
All these and more additional tips for caring for those with Alzheimer’s disease and other dementias. They were shared by speakers and elder care professionals. It happened on a recent Time Out Workshop at Pine Bluff Country Club. It was sponsored by the Elder Law Practice, the Davis Life Care Center and the Trinity Village, Inc.
Sponsors and vendors did provide lovely door prizes, drinks, snacks and a delicious lunch. The event was offering 6.5 Continuing Education Units to those social workers, case managers, geriatric nurses and nursing home administrators in attendance.
Brian Miller is the Executive Director of Davis Nursing Home Association. He is focused on personal space and communication Primarily kinesic communication, or body language. While it’s not the only way to communicate without words. Body language is the most well-known form of non-verbal communication.
The way of holding the body can communicate many different messages. In fact, 93% of communication is non-verbal, he said. It also provides a first impression. And as caregivers we must be able to use and read it well.
“Thinking about what will make the patient more comfortable is key,” he added. If that means kneeling down next to a wheelchair in order to establish good eye contact. Then, that’s what we should do.
Miller also mentioned paraverbal communication. It is the channel of speech that encompasses tone, volume and cadence. “It’s how you say what you say,” he explained. It’s also important to practice empathetic listening. That’s by offering the patient your full attention, being non-judgmental and asking questions to clarify the message.
Keep it Positive
Patrice Moody, RN, RAC-CT, PACAT with the Arkansas Innovative Performance Program (AIPP) also presented on the Positive Approach to Care (PAC) technique. PAC was established by Teepa Snow. Who is a well-known occupational therapist and advocate for those living with dementia.
Teepa’s programs are widely used throughout the elder care community. Several of her training videos and seminar clips are available here: https://www.youtube.com/user/teepasnow.
The purpose of AIPP is to enhance person-centered care in Arkansas’ nursing homes through training, education and evaluation.
Moody shared the PAC philosophy. Sharing some facts about the brain and cognitive change occurring with dementia. As well as some care partnering strategies and techniques. She also shared a surprising fact in that the nursing home industry. That it is one of the most highly-regulated in the U.S. Second only to nuclear power.
Positive Approach includes the following recommendations:
• Come from the FRONT. Let the patient know you are coming.
• STOP at six feet out. Get permission to enter personal space.
• Use the patient’s NAME. Make a personal connection.
• Give basic information. “It’s time to…”
• Give simple choices. This or that (orange juice or milk / eat or go to the restroom first).
• Ask the patient to HELP you. It’s better to give than to receive!
• Give POSITIVE feedback. “Good job!” Smile or nod.
“Remember that you have control,” said Moody. Keep it calm, keep it positive, keep it simple, and avoid flight, fright or fight.
In discussing cognitive changes, “this is brain failure”, she explained that The person’s brain is actually dying. It is chronic and can’t be fixed. It is also progressive, will get worse and terminal.
There are big changes in the learning and memory centers and the formal speech and language centers in the brain. “There is no place to store new information,” said Moody. Old information is all that’s in there. Thus I’m six years old.
And with regards to the uncharacteristic bad language that dementia patients often spout. Storing those words only in the back of the brain and still unused. But now, that pat is all that’s left.
Resources for Caregivers
As dementia progresses, a patient will start to exhibit new behaviors. In which can be confusing for his or her caregiver. The Alzheimer’s Association offers a variety of education programs to increase knowledge and to support families facing the disease.
“Our programs help caregivers better understand dementia-related behavior,” said Tina Hunter. She is the Director of Programs for the Alzheimer’s Association, Arkansas Chapter. “These behaviors are a form of communication. They are essential to understanding the needs of the person with dementia.”
The association’s programs cover behaviors common with dementia, processes for assessing and identifying challenging behaviors, and coping strategies. A complete list of classes can be found at http://www.alz.org/arkansas/.
Palliative Care and Hospice
Dr. Dale Terrell with UAMS’ South Central Center on Aging shared insight on palliative care and hospice.
Palliative care focuses on relieving symptoms that relates to chronic illnesses. And which include cancer, cardiac disease, Alzheimer’s and other dementias, including AIDS, ALS and other neurological diseases.
It is interdisciplinary care that aims to relieve suffering, improve quality of life, optimize function and assist with decision-making for patients with advanced illnesses and their families.
It is one of the offering along with the other appropriate medical treatment. And it can be use at any stage of illness. Not just during the advanced stages. The treatments are not within palliative care. It can range from conservative to aggressive and/or curative.
Hospice care is palliative by nature. But it is for patients with limited life expectancy. The illness is progressing to a point where curative treatment is no longer beneficial.
Hospice care supports the patient and their families while they are focusing on relieving symptoms. Consequently offering comfort from pain, shortness of breath, fatigue, nausea, anxiety, insomnia, constipation, etc. The goal is no longer to cure. But it is to promote comfort.
[su_pullquote]“Elder Abuse is a violation of human rights and a significant cause of illness, injury, loss of productivity, isolation and despair.” – World Health Organization[/su_pullquote]
Sadly, no community is immune from the mistreatment of older adults.
John Hadley, field manager for the Southeast Arkansas Adult Protective Services (APS) Unit was telling about the types of maltreatment and reporting suspected abuse, neglect or exploitation.
Abuse is any intentional and unnecessary physical act that inflicts pain or causes injury to an endangered or impaired adult. Some of the examples of these are, fractures, broken bones, sprains or rope marks.
Neglect is an act or omission by a caregiver of an endangered or impaired adult. Self-neglect is self-imposed neglect. Such as not eating or wearing appropriate clothing or not seeking medical care.
Exploitation is the illegal or unauthorized use or management of an endangered and impaired adult’s funds, assets or property. Examples are selling property or coercive changes in wills or contracts.
Call the APS Hotline to report suspected abuse, neglect or exploitation at 1-800-482-8049. For more information visit www.aradultprotection.com.
The Elder Law Practice – Putting the Pieces Together
Attorney Cynthia Orlicek Jones (Cindy) shared the following:
“Having been my momma’s primary care partner for several years. I felt it was important to discuss Advance Care Planning from a more personal, real-time point of view. I want others to make prepare themeselves to make the choices. The same choices that I had to make regarding Momma’s care as her health starts to fail. Experience is always the best teacher.”
Seven “puzzle pieces” to connect as you are doing Advance Care Planning:
Puzzle piece #1 is to prepare your Life Care Plan. Decide, among other things, where you want to live. How you want to live. And who you want be around you. Design the quality of life that you want and make sure to put it in writing.
Puzzle piece #2 is to incorporate your sustainability program. That is to ensure that you will have enough money to pay for the care and quality of life that you desire.
Puzzle piece #3 is to determine your most important values that are relative to the decisions that you’d be making. About your health and the care to provide if you can no longer decide for yourself. Will be basing this personal step upon your religious beliefs. It will also include your family and your personal health experiences.
More puzzle pieces…
Puzzle piece #4 is to determine who will make healthcare decisions for you if you can’t. Who is the best person to carry out your wishes? And who is the alternative one?
Puzzle piece #5 is putting the proper documentation in place. These include a Healthcare Power of Attorney, a Private Living Will and a HIPAA Authorization. For that way, your healthcare agent will have the authority to make decisions on your behalf.
Puzzle piece #6. It is important that your Healthcare Agent have a copy of your Healthcare Directives. You also need to have the copies near the phone. In case that you need to use an ambulance when going to the hospital. Give copies to your primary care physician. These documents become a part of your medical records.
Puzzle piece #7. Keep your Plan updated. You may consider changes in your Life Care Plan if new alternatives in care becomes available to you. Or probably any changes to your Healthcare Directives if you have a significant decline in your health, receive a serious diagnosis, or even experience a change in finances.
When it comes to every contingency in life, you really can’t prepare for it all the time. But if you have a plan and you know your agents named who will make the decisions, then they can help. That way you can make decisions for yourself. You and your agent(s) will sleep a lot better at night.