5. Don’t think they can’t communicate just because they don’t speak.

fingerpokeThis is the fifth item from my list of things to never say to a person diagnosed with dementia.

The story that immediately pops to mind happened a little over a year ago. I hadn’t met very many individuals with dementia who had stopped speaking until my mom moved into a memory care community. While I had experienced periods with my parents when one of them would be quiet on a visit and they seemed unsure of what to say, they never stopped speaking until the last few days of their lives. So I had more direct experience with my last post on don’t assume they can’t understand you because they are silent.

I still smile when I remember my visits when Gwen would join us. She would only join us when we were sitting off to ourselves, and usually focused on a craft of some sort. She always had a relaxed way about her, but always seem to want to hide the things we were working with. She would subtly remove a paint brush, or a feather, and seemed to wait to see if anyone noticed. I was glad we used non-toxic paint when she decided to drink my cup of paint water on the table before I could stop her.She looked right in my eyes and grinned before I could get out a word. She never did want to join us in our activity, but every time she joined us, I felt like a little bit of my dad had arrived. He was always the jokester.

One day, when another resident came over to join us, Gwen stuck out her finger so that when the other resident sat down, she would get a poke to the rear. While the resident didn’t notice, Gwen burst out into giggles and I quickly joined her when I found the resident wasn’t harmed or offended (thankfully).

I never really thought about it at the time, but looking back realize how much I had learned about spending time with someone who has dementia. I was ready to accept and visit the person that was showing up to spend time with me that day. Although, I never had a conversation with Gwen, we sure did have a few laughs together. Enjoyed. 







1. Don’t tell someone diagnosed with dementia they are wrong.

doingitwrongNo one likes to be wrong. Before my mom was diagnosed with dementia, but after she had a small stroke that she never remembered, we began to get into arguments. My parents and I had a close relationship and saw each other 2 – 3 times a week. My mom and I didn’t normally get into disagreements once I moved out from under their roof.

Even before mom’s stroke that left no physical reminders and that the neurologist judged to be quite minor, we noticed some changes in her behavior and recall. It turns out that mom had an earlier stroke that apparently went un-diagnosed as much as 2 decades prior to the stroke we knew about. It’s not like didn’t see a doctor– every year she and my dad both had  comprehensive physicals. .

Dinner dates were getting missed, family history was changing, and initially I would challenge mom as I had in the past. I showed up for dinner on Tuesday, she said we were supposed to meet Thursday … our relationship degraded and I felt like I was 16 and re-enacting my teen-age years (yeah, I was right then too : >.) Some of our disagreements ended with her threatening to “pop me in the mouth.” My brother shared his experience with the same behaviors in a blog post from April 2012.

What we didn’t know then was that getting into these arguments usually made mom more combative. Who likes to be told they are wrong?  This was BEFORE our parents would consider changing their lifestyle. We were afraid for their safety and well-being. However, starting these fights only made my parents fight harder to keep their independence.

You won’t win the argument, so why fuel it? Reflected.

20 Things to NOT Say to a Person with Dementia

20-things-not-to-say-to-aperson-with-dementia-updated-6june2014.jpgThis list comes from Kate Swaffer who after being diagnosed offers a fresh perspective on how to live beyond dementia rather than only die from it, and how family, friends and dementia care professionals can more positively support people post diagnosis to do this. She has lovingly challenged, advised, and counseled me quite a few times on my journey. We even launched a Q&A blog where we peppered each other with questions.

As a follow-up to my go-to strategies for family visits, I plucked a few key tips to consider and am listing my top ten:

  1. Don’t tell the person they are wrong.
  2. Don’t say “Remember when … “
  3. Don’t correct or challenge trivial things.
  4. Don’t assume they can’t understand you because they are silent.
  5. Don’t think they can’t communicate just because we can’t speak.
  6. Don’t talk about them to someone else in front of them.
  7. Don’t remind them of a death of a loved one or pet.
  8. Don’t blame them for the changes in their behavior.
  9. Don’t assume they can’t answer for themselves.
  10. Don’t assume because they can’t tell you, that your words or actions don’t hurt their feelings.

It is easy to read the list, but not as easy to make these part of your actions when you are visiting. I am going to share my individual experiences with each of these over the next month. It time for me to learn and I hope my mistakes will help you learn faster than I did!

Be mindful of the words you use, and forgive yourself when you make a mistake — just build on what you are learning. Recognize that the person diagnosed with dementia still has the same craving for meaning and purpose that is the core of every human.

The changes in behavior are not hidden personality traits. As the brain is changing, so is the person living with dementia. When you have met one person with dementia, you have met one person.

Thank you to Kate who continues to be a beacon of hope living with dementia working to provide us with inspiration, love and truth. Admired.

Caregivers’ Circle – How to organize financial, personal and medical information on behalf of an aging relative

webtalkradioBy: Stephanie Erickson for Web Talk Radio
It is very difficult to get all of the information we need to make the right decisions on behalf or with our aging relatives. How do we organize finances? Manage investments? Gather medical information? Organize personal appointments? This week’s guest, Kay Bransford, developer of MemoryBanc: Your Workbook for Organizing Life offers her personal experience and how this led to the development of a simple method to keep track of all necessary information. She and I discuss all of the essential financial, legal household and personal information that should be collected and organized to assist you in helping another.

Caregivers struggle with knowing what to do when individuals with Dementia present with challenging behaviors and symptoms. There is an APP available that offers step by step interventions to manage a variety of symptoms such as incontinence, bathing challenges, repetitive discussions and aggressiveness. Learn more about Dementia Caregiver Solutions.

About: Stephanie Erickson is a Family Caregiving Expert and has a host of resources. She interviewed me for her show and I wanted to share the conversation with you in case we cover some new tips and resources that you may find helpful. Aired.

Better Conversations with a Parent who has Dementia / Alzheimer’s

conversationdemWhen people first meet me, they would describe me somewhere between quiet and aloof. I’m not sure if this is just part of my personality profile or became part of me because we moved around so much when I was younger that I learned my best friends developed with time. I have found in the work setting, listening to the discussion and saving up my voice until the end served me well.I share this because this blog and the ease at with which I share what’s happening in my life is very different from the woman you would meet in person.

However, I’m realizing that in general, I am very talkative and approachable on the subject of caring for a parent with dementia. More people know this about me than even the names of my husband and children. It is never I topic I start but I’ve found I’ve been in so many casual conversations that some aspect of caregiving or dementia is mentioned that I quickly find a common bond that seems to be broader than personal interest, husband or child topics.

Recently, I found this bond with a woman at Church. Her experience in caring for her mother-in-law sparked a fire and she recently jumped career tracks and is now going to be working in a local community to improve their services for their residents.The experience of caring for a parent is changing many of us in positive ways.

She sent me this article and I thought it included some great general tips on how to be a better communicator. I included the list as well as added some of the things I have learned in the past year. They include:

#1: Make it a priority to engage in “time-limit-free” conversations.  I found arriving with an agenda can turn your visit sideways. It’s more important to visit in the moment. Your calm translates to their calm, your angst translates to their angst.

#2: Use shorter sentences, and don’t ask more than one question at a time. Avoid asking questions about what they just ate or did. Since short-term memory goes first, this can create some discomfort when they are unable to recall the information. My mom would come up with logical answers, but had no relationship to factual information. 

#3: Talking is overrated. I like to bring pictures and share my memory behind the photograph. My parents were never huggers or hand-holders, but as often as I can I work in a hug, a kiss or a hand-hold. One of the most memorable moments I spent with my Dad was holding his hand last September, two weeks before he died.

#4: Try alternative means of communicating. I write my Mom notes as well as spend time just sitting with her around a puzzle. Doing puzzles are a great way to connect over a shared purpose and exchange smiles and winks when we find the right piece.

#5: Make as many connections as possible, both with your words and your body language. In general, I will avoid looking at my phone or email and just will sit quietly if my Mom and I are not doing something together. My goal is to give her my undivided attention when I visit.

#6: Be calm, and remember the past. I learned early on that my Mom would mimic my emotions. I work to redirect the conversation if we are moving into a direction that gets her angry. Quickly shake it off and consider bringing up a fun memory from your past to share.

#7: Don’t take it personally. So easy to understand, but so difficult to do.

This one poem always gives me some perspective when I’m overwhelmed, frustrated, angry and sad. It’s a reminder to be kinder and gentler.

I hope some of these tips help you on your journey. Experienced.

Some additional stories related to this topic include:

Manage a Visit with Someone Who Has Dementia
I provided a list of “Do’s” and “Don’ts” to help those just getting exposed to someone with moderate dementia. Some of these take time. Trying to connect and being present is more important than executing these perfectly. 

Three Go-to Tactics for Dementia Caregivers
These have served me well over the years.


Three Go-to Tactics for Dementia Caregivers

lionessThe holidays are hard for us all. It’s our first without our Dad. My siblings came to visit and I know my Mom enjoyed having lunch and dinner visitors.

I revisited my blog from last year talking about Christmas — the visits with my Mom were more difficult since she was almost always agitated and would get stuck on a specific thought and action.

Since she moved into Assisted Living, the visits are much easier. I have broken my visits down into two types: I’m visiting the lion or the lamb.

When I show up and I’m facing the lioness, three things that have served me well include:

  • Smile and patiently answer questions … until you can politely redirect the conversation
  • Don’t say “Remember” The lack of short-term memory is usually the first symptom to take root and pointing it out only creates bad-feelings and animosity.
  • Explaining only creates more confusion Layered with the lack of short-term memory, the idea that logic will prevail tripped me up initially. I will explain something once, then work to redirect the conversation.

My mother has always been a very independent woman. She raised four kids while my Dad was away at War in the 50s and 60s and was always the prime disciplinarian. While dementia can change behaviors, the need to independence and sense of purpose is still very alive and well in my Mom. Practiced. 

Please share with me if there are things you do that help you and the person you are caring for. 

Managing a Visit with Someone Who Has Dementia

dosdon'tsDementia changes people in different ways, but there are a few things I found that will make a visit with an old friend easier to manage. My Dad was quieter, but my Mom is feistier.

Research has confirmed that dementia doesn’t magnify traits, but in general can create wholesale personality changes. Don’t be surprised to find the person you are visiting is different than you remember. I hope you will continue to visit, dementia is isolating to those suffering from this disease.


  1. Begin with introductions. With a warm smile and relaxed posture, share a personal connection. Some suggestions that are helpful: “Hi FRIEND, It’s good to see you. You were one of the first people to welcome me into this community and it’s been a while since I’ve seen you”  or “Hi FRIEND. It’s a pleasure to see you today. I was thinking about all the fun we had when we lived in Germany together — that was over 40 years ago! Our children played together so well.”
  2. Bring pictures. It will help your friend understand your connection better if you can share pictures of you together.
  3. Speak slowly, simply and pause to allow them to talk. Some individuals will feed off of your energy so focus on being relaxed and calm. Eye contact and direct interest is important.


  1. Ask what they are up to or any short-term memory questions.  Short-term memory is the first to go and can set off emotions from frustration to anger and sadness if they are unable to answer the question.
  2. Expect them to “remember”. Be prepared to carry on a one-sided conversation.
  3. Correct jumbled memories. Allow your friend to share. Feel free to share how you remembered something, but don’t try to correct or debate facts.
  4. Show up with an agenda of what you are going to accomplish. Most people are lonely and want to enjoy the company and some conversation. Trying to get agreement or push on a topic can often lead to stress in the person with dementia.

The last don’t has been a new item for me. With my father gone, the normal routine we had has also left and now my Mom prefers to spend our time together reviewing her calendar or burial plans. We will discuss the day of the week over and over for a half hour, move onto the burial date and then go right back into the day of the week. I arrive knowing there is no agenda, and can easily sit with her with a smile on my face and calmly answer the same questions over and over until she feels more comfortable. This too will pass. Relaxed. 

Here is a post that made me consider this topic. I’m frustrated that more people don’t use the umbrella term of “dementia” but it includes some good information in a longer format that you may find useful.

Tips for Visiting a Friend with Alzheimer’s Huff Post, October 7,
 Originally shared by MomandDadCare

Six dementia strategies

This article is from the Alzheimer’s Reading Room. In short, it offers 6 strategies on dealing with difficult behavior in someone with any type of dementia from the book The 36 Hour Day.

For the cliff notes version for those of you that have been immersed and just need a refresher:

Dementia Strategy 1 — Restrict. Put a smile on your face and calmly attempt to get the person to stop the behavior, especially if the behavior is potentially dangerous.

Dementia Strategy 2 — Reassess. Consider what might have provoked the behavior. Could a physical problem (toothache, urinary tract infection, osteoarthritis) be behind the agitation? Or could it be something in the environment (noise, movement) or time of day (does it always happen around 4 PM?)

Dementia Strategy 3 — Reconsider. Put yourself in the dementia patient’s shoes. Try to imagine what it must be like to not comprehend what is happening to you or to be unable to accomplish a simple task.  Consider how frustrating or upsetting the current situation or
environment might be for a person with dementia.

Dementia Strategy 4 — Rechannel. Try to redirect the behavior to a safer, less disruptive activity. For example, if the person constantly disassembles household items, try finding simple unused devices, such as an old telephone or a fishing reel, that can be taken apart and put back together repeatedly. Distraction often works well to curtail disruptive repetitive behaviors and restlessness.

Dementia Strategy 5 — Reassure. The demented person’s brain injury and the resulting confusion and frustration can lead to anger, anxiety, and outright fear in certain situations. Calmly reassure the person that everything is okay and that you will continue to take care
of him or her.

Dementia Strategy 6 — Review. After an unsettling experience with your loved one, take time to review how you managed the problem and what you might have done differently. Think about what may have triggered the problem, how it might have been avoided, and what you
might try the next time a similar situation arises.

For a longer edition, visit the full post on Dealing with Difficult Behavior Caused by Alzheimer’s Disease and Dementia