Hello,
re: memory loss request
On the AAM Alliance Blog, an article was posted on July 17, 2019, titled Memory Cafe: Creating a Museum Program for People with Dementia. It was written by Norman Burns, then President and CEO of Conner Prairie, a Smithsonian Affiliate Living History Museum in Fishers, Indiana. You might the article helpful or be able to contact the author, Mr. Burns, directly.
As a museum professional and occupational therapist who has worked with thousands of people who have memory loss and various types of dementia. Presenting information in short sentences, a simple way and in an environment free of distractions is important. I know this is counter to most of our museums! If you have quiet hours at your museum for visitors who find that useful, that's a start.
Sources of information about memory loss could include a local neurologist, agency on aging or caregiving, some occupational therapists since they deal with people with memory loss and are charged with helping them be as independent as possible in activities of daily living and functional tasks. Some hospitals or rehabilitation centers, skilled nursing facilities or continuum of care communities often have a memory loss unit with professionals that might help advise you.
AAM has a terrific Museum Health and Wellness Compendium that highlights various programs offered by museums in partnership with healthcare entities. It can be found on the AAM website (
Museums, Health, and Wellness Compendium ).
There is also a grass roots initiative started by Annie Thomas-Buble of about 100 museum professionals who have developed and implemented programs for patients in hospitals and healthcare settings. Museum professionals are from all types and sizes of museums including art, historic houses and estates, gardens, etc. There are various committees related to this initiative; I am on the Patient Programming Committee. Feel free to contact me as well for additional information. We are working with AAM's EdCom to present an EdConversation, hopefully later this year, on some of these museum-healthcare partnerships.
I share here an excerpt from a Caregiver's Guide to Understanding Dementia Behaviors: Communication written by a social worker at the Family Caregiver Alliance. Although it speaks to people with dementia, memory loss is often the beginning of dementia. And, sometimes, some of the same approaches apply.
Caregiver's Guide to Understanding Dementia Behaviors: Communication
By Family Caregiver Alliance and reviewed by Beth Logan, M.S.W.
https://www.caregiver.org/resource/caregivers-guide-understanding-dementia-behaviors/
Part 1: Introduction
Part 2: Handling Troubling Behavior
Part 3: Handling Troubling Behaviors cont.
Introduction
Caring for a loved one with dementia poses many challenges for families and caregivers. People with dementia from conditions such as Alzheimer's and related diseases have a progressive biological brain disorder that makes it more and more difficult for them to remember things, think clearly, communicate with others, and take care of themselves. In addition, dementia can cause mood swings and even change a person's personality and behavior. This fact sheet provides some practical strategies for dealing with the troubling behavior problems and communication difficulties often encountered when caring for a person with dementia.
Ten Tips for Communicating with a Person with Dementia
We aren't born knowing how to communicate with a person with dementia-but we can learn. Improving your communication skills will help make caregiving less stressful and will likely improve the quality of your relationship with your loved one. Good communication skills will also enhance your ability to handle the difficult behavior you may encounter as you care for a person with a dementing illness.
- Set a positive mood for interaction.Your attitude and body language communicate your feelings and thoughts more strongly than your words do. Set a positive mood by speaking to your loved one in a pleasant and respectful manner. Use facial expressions, tone of voice, and physical touch to help convey your message and show your feelings of affection.
- Get the person's attention.Limit distractions and noise-turn off the radio or TV, close the curtains or shut the door, or move to quieter surroundings. Before speaking, make sure you have her attention; address her by name, identify yourself by name and relation, and use nonverbal cues and touch to help keep her focused. If she is seated, get down to her level and maintain eye contact.
- State your message clearly.Use simple words and sentences. Speak slowly, distinctly, and in a reassuring tone. Refrain from raising your voice higher or louder; instead, pitch your voice lower. If she doesn't understand the first time, use the same wording to repeat your message or question. If she still doesn't understand, wait a few minutes and rephrase the question. Use the names of people and places instead of pronouns (he, she, they) or abbreviations.
- Ask simple, answerable questions.Ask one question at a time; those with yes or no answers work best. Refrain from asking open-ended questions or giving too many choices. For example, ask, "Would you like to wear your white shirt or your blue shirt?" Better still, show her the choices-visual prompts and cues also help clarify your question and can guide her response.
- Listen with your ears, eyes, and heart.Be patient in waiting for your loved one's reply. If she is struggling for an answer, it's okay to suggest words. Watch for nonverbal cues and body language, and respond appropriately. Always strive to listen for the meaning and feelings that underlie the words.
- Break down activities into a series of steps.This makes many tasks much more manageable. You can encourage your loved one to do what he can, gently remind him of steps he tends to forget, and assist with steps he's no longer able to accomplish on his own. Using visual cues, such as showing him with your hand where to place the dinner plate, can be very helpful.
- When the going gets tough, distract and redirect.If your loved one becomes upset or agitated, try changing the subject or the environment. For example, ask him for help or suggest going for a walk. It is important to connect with the person on a feeling level, before you redirect. You might say, "I see you're feeling sad-I'm sorry you're upset. Let's go get something to eat."
- Respond with affection and reassurance.People with dementia often feel confused, anxious, and unsure of themselves. Further, they often get reality confused and may recall things that never really occurred. Avoid trying to convince them they are wrong. Stay focused on the feelings they are demonstrating (which are real) and respond with verbal and physical expressions of comfort, support, and reassurance. Sometimes holding hands, touching, hugging, and praise will get the person to respond when all else fails.
- Remember the good old days.Remembering the past is often a soothing and affirming activity. Many people with dementia may not remember what happened 45 minutes ago, but they can clearly recall their lives 45 years earlier. Therefore, avoid asking questions that rely on short-term memory, such as asking the person what they had for lunch. Instead, try asking general questions about the person's distant past-this information is more likely to be retained.
- Maintain your sense of humor.Use humor whenever possible, though not at the person's expense. People with dementia tend to retain their social skills and are usually delighted to laugh along with you.
Handling Troubling Behavior
Some of the greatest challenges of caring for a loved one with dementia are the personality and behavior changes that often occur. You can best meet these challenges by using creativity, flexibility, patience, and compassion. It also helps to not take things personally and maintain your sense of humor.
To start, consider these ground rules:
We cannot change the person. The person you are caring for has a brain disorder that shapes who he has become. When you try to control or change his behavior, you'll most likely be unsuccessful or be met with resistance. It's important to:
- Try to accommodate the behavior, not control the behavior. For example, if the person insists on sleeping on the floor, place a mattress on the floor to make him more comfortable.
- Remember that we can change our behavioror the physical environment. Changing our own behavior will often result in a change in our loved one's behavior.
Check with the doctor first. Behavioral problems may have an underlying medical reason: perhaps the person is in pain or experiencing an adverse side effect from medications. In some cases, like incontinence or hallucinations, there may be some medication or treatment that can assist in managing the problem.
Behavior has a purpose. People with dementia typically cannot tell us what they want or need. They might do something, like take all the clothes out of the closet on a daily basis, and we wonder why. It is very likely that the person is fulfilling a need to be busy and productive. Always consider what need the person might be trying to meet with their behavior-and, when possible, try to accommodate them.
Behavior is triggered. It is important to understand that all behavior is triggered-it occurs for a reason. It might be something a person did or said that triggered a behavior, or it could be a change in the physical environment. The root to changing behavior is disrupting the patterns that we create. Try a different approach, or try a different consequence.
What works today, may not tomorrow. The multiple factors that influence troubling behaviors, and the natural progression of the disease process, mean that solutions that are effective today may need to be modified tomorrow-or may no longer work at all. The key to managing difficult behaviors is being creative and flexible in your strategies to address a given issue.
Get support from others. You are not alone-there are many others caring for someone with dementia. Locate your nearest Area Agency on Aging, the local chapter of the Alzheimer's Association, a California Caregiver Resource Center, or visit the Family Care Navigator (www.caregiver.org/family-care-navigator) to find support groups, organizations, and services that can help you. Expect that, like the loved one you are caring for, you will have good days and bad days. Develop strategies for coping with the bad days.
Best wishes to you for providing programs of this audience; they are sorely needed and successful when planned mindfully!
With kind regards,
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Terrie Nolinske, Ph.D.
Principal, TNI Consultants LLC
813. 973. 2102
tni@tniconsultants.comTampa, FL
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Original Message:
Sent: 07-20-2022 10:45 AM
From: Andrew Schlauch
Subject: Tours for memory loss
Hi Courtney,
I'm not sure how helpful this is or maybe you've already researched it. But, MoMA created a great program and openly shares it on their site https://www.moma.org/momaorg/shared/pdfs/docs/learn/GuideforMuseums.pdf It's probably not relevant but it may lead you to think about your tours in different ways.
I had created a program that ended up scuttled due to the lockdown and ongoing concerns about the safety of the seniors. But, I would recommend reaching out to a local Memory Cafe if you have one. They can provide a lot of great insight! One thing to your advantage could be incorporating smell into your tours. It's well established that certain scents can have an effect on recalling memories.
Hope this is somewhat helpful.
Best,
Andy Schlauch
Executive Director
Cafesjian Art Trust
Shoreview, MN
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Andrew Schlauch
Original Message:
Sent: 07-13-2022 11:42 AM
From: Courtney Allen
Subject: Tours for memory loss
Hello colleagues, Arnold Arboretum is reflecting on ways we can design greater accessibility in our tour offerings, particularly for visitors who are experiencing memory loss. If your site has a relevant tour/training model you would like to discuss, please contact me. Thank you!
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Courtney Allen
Head of Public Programs
The Arnold Arboretum
Jamaica Plain MA
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