Walking the Journey: When a Loved One has Dementia

“Memory Matters for ALL Ages (Program Link)

How does someone enhance the quality of life of an older adult diagnosed with Alzheimer’s disease or other dementias while supporting their friends families and caregivers? It starts with meeting them where they are in the journey and by modifying your communication strategies and offering activities of interest that are within their current level of functioning.

Too often my home health care patients have gradually discontinued many activities of interest because of the complexity and inability to make the needed modifications. The role of a speech-language pathologist includes working with care partners to help them to better understand the changes that have taken place and what are possible changes that may occur in the future. By assessing where their loved one is currently functioning, recommendations can be made specific to the current situation including safety concerns, communication strategies, activity modifications and some of the more appropriate resources.

Some things to consider:

 1.  Observe: What really matters is knowing what interests and does not interest the person with dementia. For example, I never had an interest in playing Bingo but if you paired me with a young child who was learning letters and numbers, it is likely I would be happy to participate. It is also important to notice what frustrates a person or makes them feel anxious. I have patients who did crossword puzzles for years and still were doing them even though none of the answers are correct. It was part of their routine for a long time and now it was familiar though too complex. In several cases, introducing them to reminiscence puzzles in larger print with cues was the answer. Or doing them with someone else where they copy the answers after picking from a few choices is another possibility.

2. Activities are everywhere: How often have some of the simplest things made your day? Maybe it was that sunset, a walk in the park, sharing coffee and homemade cookies together, hearing children laughing in the background, or having someone you care about drop in for a visit. I have repeatedly seen children or pets change the energy in the room. If you have thought about what matters to that person, it may be easy to create something related to that interest.

3. Modify then modify again: When a person has changes in hearing, vision, speech, memory, or mobility, there still may be an opportunity to bring a modified version of some of their favorite activities to their day. One gentleman was no longer safe using tools to make his bird houses but one of the older grandchildren decided to make that the focus of his visits. He learned how to make them because his grandfather was still able to explain the steps.

My mom was a letter writer to friends from her youth and eventually was having some problems with her handwriting but it was more than that. So for awhile she wrote postcards. Then it came to the Christmas cards and I offered to write down what she told me. Basically she had me write it and I left some space at the end so she could jot down a few words. Eventually all she did was sign the letter I had created with her permission. First of all it was important to me because it was important to her. I wanted to help her stay connected with long distance friends but not have to struggle to make it the perfect ones she always did.

4. Learn how to be in the moment: Everyone is busy and so often I hear that care partners run in to do a few things, have a quick conversation then go on to the next thing on their to do list.  Keep the activities adult-like but don’t forget about involving the children. Build on the things that work and do not worry about perfection. If it has to be a short visit, give the person your 100% undivided attention. Turn off the phone and appreciate that time you are together. These moments add up and when you reflect on your journey there will be unexpected special moments. One of my favorites with my mom was after she fell, broke her hip and had to use a walker. It was a beautiful fall day so we went to the gazebo on the grounds of her assisted living and sat there for the longest time just chit chatting and people watching. Nothing special but more meaningful looking back that words can express since she passed away a few months later. Additional ideas for creating meaning visits

Tips to consider: Setting the stage for your time together

1. First of all assess your energy level. You are likely not at the top of your game every time you visit. If you are stressed about your day, leave it at the door.

2. Notice your attitude especially if it starts to shift. Make a choice to elevate the level of your interaction if your frustration increases. Shift gears unless a serious concern arises. Understanding the level of their dementia is very helpful as you find ways to modify your approach under those circumstances.

3. Remember sometimes it is the little things that can make a meaningful visit. One daughter made her mom a smoothie while she was there so she could have it with her breakfast the next morning. It became a ritual. One grandson would read his grandfather the information he wanted to have about his investments from the newspaper because the print was now too small for him. A close friend brought the church bulletin and read it to her friend who was legally blind over tea and homemade cupcakes.

4. Remember to include something that has a special meaning to you.  One of mine was to go though one of the photo albums and reminiscence about the pictures. When mom got stuck on a person’s name, I just gave it to her and we continued on.

5. Consider offering to bringing others who are more reluctant into the circle. Some people are more comfortable visiting than others. Sometimes others find it difficult to see the changes in a loved one over a period of time or perhaps do not know what to say and do. I had such admiration for my sister-in-law who offered to have her siblings join her when she visited or brought the grandchildren to see her mom in the later stages of her Alzheimer’s disease.

TO DO THIS WEEK: Here are some things to consider at some point as your reflect back on the journey with someone you know who had Alzheimer’s disease or a related dementia:

  • What did you learn?
  • What helped you cope?
  • How can you enlighten others?
  • If you had to walk this path again, what would you do differently?
  • If this were you,what would you want others to do for you?
  • What were your gifts in the journey?

  “It is not how much we do, but how much love we put in the doing.
It is not how much we give, but how much love we put in the giving.”  Mother Teresa

This is the last Cable TV show “Memory Matters” for all Ages.
Hope you have enjoyed the 8 months series of programs and blogs.
Please share this link of the entire series with others.

For more information on memory fitness for successful aging,
here is the complete listing of prior memory fitness blogs.

Look for occasional blogs in the next few months on related topics as I make some exciting  personal lifestyle changes and want to reduce the multitasking/tasking switching for awhile. Need to walk my talk! Thanks for your interest and support.

Information on Kathryn’s products and links to sample pages.   
Kathryn is available for private consultations as well as
educational and training programs. 

About Kathryn Kilpatrick

Kathryn Kilpatrick received her Master's degree in Speech-Language Pathology in 1968 from the University of Massachusetts. She has worked in a variety of settings, primarily in Ohio, including hospitals, rehabilitation centers, and for decades in the area of home health care. Kathryn is president of Memory Fitness Matters (www.memoryfitnessmatters.com) and Communication Connection(www.connectionsincommunication.com). She offers memory coaching for all ages and has a geriatric consulting practice. She is a national motivational speaker and author of more than 30 products to enhance communication and connection as well as a Memory Fitness Toolkit. Kathryn brings her decades of experience as a speech-language pathologist to all those wanting to enhance their quality of life, particularly when there are communication, memory and cognitive challenges. Her websites offer information on a wide variety of topics related to elder care concerns as well as memory fitness and successful aging.
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