Personal Space – How Big is Your Bubble?
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 if someone invades your personal space.
But what if you couldn’t?
Some forms of help when caring for the dementia patient invade personal space and may even undermine the patient’s dignity. Behavioral and psychological symptoms of dementia may include self-protective responses from the patient – responses commonly referred to as aggression or violence. But it’s important for the caregiver to understand that the behavior has meaning, to explore underlying causes, and to respond in the right way.
Little things can make the biggest difference. Appropriate communication – verbal and non-verbal, is basic in helping a patient maintain his or her self-identity.
For example, establishing eye contact and smiling are easy – and easily overlooked – steps to take before touching. And a “supportive stance” – relaxed and open, with arms at the sides instead of crossed – shows respect and is much less threatening.
These and additional tips for caring for those with Alzheimer’s disease and other dementias were shared by speakers and elder care professionals at a recent Time Out Workshop at Pine Bluff Country Club, sponsored by the Elder Law Practice, Davis Life Care Center and Trinity Village, Inc.
Sponsors and vendors provided lovely door prizes, drinks, snacks and a delicious lunch. The event offered 6.5 Continuing Education Units to those social workers, case managers, geriatric nurses and nursing home administrators in attendance.
Brian Miller, Executive Director of Davis Nursing Home Association, 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 that the body is held can communicate many different messages. In fact, ninety-three percent of communication is non-verbal,” he said. “It 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 to establish good eye contact, that’s what we’ll do.”
Miller also mentioned paraverbal communication, which 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 by offering the patient your undivided 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) 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, some facts about the brain and cognitive change occurring with dementia, and care partnering strategies and techniques. She also shared a surprising fact in that the nursing home industry 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, she explained that “This is brain failure. The person’s brain is actually dying. It is chronic and can’t be fixed, it is progressive and will get worse, and it is 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 is there, thus I’m six years old.”
And with regards to the uncharacteristic bad language that dementia patients often spout, “Those words are stored way in the back of the brain, unused, but now that part is all that’s left.”
Resources for Caregivers
As dementia progresses, a patient will start to exhibit new behaviors that 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, Director of Programs for the Alzheimer’s Association, Arkansas Chapter. “These behaviors are a form of communication and 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 are related to chronic illnesses, such as cancer, cardiac disease, Alzheimer’s and other dementias, 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 offered simultaneously with all other appropriate medical treatment and can be used at any stage of illness — not just the advanced stages. Treatments are not limited with palliative care and can range from conservative to aggressive and/or curative.
Hospice care is palliative by nature, but is for patients with limited life expectancy. The illness has progressed to a point where curative treatment is no longer desired or beneficial. Hospice care supports the patient and their families while focusing on relieving symptoms and offering comfort from pain, shortness of breath, fatigue, nausea, anxiety, insomnia, constipation, etc. The goal is no longer to cure, but to promote comfort.
Sadly, no community is immune from the mistreatment of older adults.
John Hadley, field manager for the Southeast Arkansas Adult Protective Services (APS) Unit, spoke on 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. Examples 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 or 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 be prepared to make the choices that I had to make regarding Momma’s care as her health failed. Experience is the best teacher.”
Seven “puzzle pieces” to connect as you do Advance Care Planning:
Puzzle piece #1 – prepare your Life Care Plan. Decide, among other things, where you want to live, how you want to live, who you want around you. Design the quality of life that you want and put it in writing.
Puzzle piece #2 is to incorporate your sustainability program 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 relative to the decisions that will be made about your health and the care provided if you can no longer decide for yourself. This personal step is typically based upon your religious beliefs, your family and your personal health experiences.
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 alternate to be named?
Puzzle piece #5 is putting the proper documentation in place – a Healthcare Power of Attorney, a Private Living Will and a HIPAA Authorization – so that your healthcare agent has the authority to make decisions on your behalf.
Puzzle piece #6 – It’s important that your Healthcare Agent have a copy of your Healthcare Directives and that you have copies near the phone in case you are taken to the hospital via ambulance. Give copies to your primary care physician so 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 become available to you, or changes to your Healthcare Directives if you have a significant decline in your health, receive a serious diagnosis, or experience a change in finances.
You can’t be prepared for every contingency in life, but if you have a plan and you have agents named who will make the decisions that you would make for yourself, you and your agent(s) will sleep a lot better at night.