The Dementia Connection

Creating Joy & Meaning for the Dementia Patient by Ronda Parsons

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Humor is the Best Medicine

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I know that there is nothing funny about a diagnosis of dementia. it feels like the end of all that is joyful and bright in the world. It signals the inevitable death of a personality and years of endless caregiving. It is a trap capable of pulling an entire family into a thick fog of black ether. It breeds worry and anxiety, and if you aren’t careful, it can swallow you whole But by now you know my anthem. You know that I believe that joy and happiness are possible despite the hardships of this disease. I believe that we have the power to stop looking through a lens of negativity and focus on the existence of courage and hope. And with this hope, joy is made possible.

If you are really honest with yourself, you will admit that caring for a dementia patient can put you in some very outrageous situations. It took me a long time to allow myself to see the comedy in many of the predicaments I found myself in, and even longer to not feel guilty for noticing them. Only after pushing aside my guilt have I been able to laugh at some of the ridiculous circumstances I have landed in while caring for Nan. Truthfully, she can be very funny. Her responses are often so comical and my attempts to gain her cooperation are so absurd, that I have no alternative but to laugh.

Let’s face it. You can’t feel sad or anxious when you are laughing. Humor embraces our entire being and dissolves disturbing emotions. It allows us to shift our perspective in order to view our situation from a different angle. it recharges our batteries and makes every obstacle seem less daunting. When my husband and I giggle over one of Nan’s funny comments, we feel less overwhelmed by her disease and we view her and our family’s situation in a better light.

No matter what you find funny, read it, watch it, do it, enjoy it. Let yourself go. Have a good laugh from time to time. Tell a joke. Go to a comedy club. Laugh with your children. I guarantee that you will instantly feel better and that the hills before you will seem less steep. As a fellow caregiver, I am giving you permission to have fun and see the humor in the amusing things that your loved one says and does. After all, we are not laughing at them, we are laughing with them. And as Mark Twain so aptly put it, “The human race has only one really effective weapon and that is laughter. The moment it arises, all your irritations and resentments slip away, and the sunny spirit takes their place.”


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How to Communicate with a Dementia Patient – Part 4

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Welcome to the final post of my 4 part series on How to Communicate with a Dementia Patient.

  • At mealtime encourage your loved one to sit at a table and with family members or other residents at their facility. Don’t relegate them to the sidelines by having them eat alone in their room or in front of the television. Mealtime is a wonderful opportunity for them to communicate and engage in social interactions. Eating with others also brings a senses of belonging into your loved one’s life. Do everything in your power to create a warm, beautiful, and loving meal setting. Make mealtime an event that they look forward to. I think that if you take my advice you will also see an increase in their appetite.
  • Stay calm and relaxed. If you feel yourself becoming stressed, walk away. Don’t overreact to anything that they say or do. Do everything in your power to remain serene. You are most likely to gain their cooperation if you maintain a gentle, quiet demeanor.
  • Change your tactics if necessary. If you find that you are not connecting, try a new strategy. If you are still unsuccessful, take time to pause and begin again tomorrow.
  • Never stop trying. This is my most important piece of advice. No matter how bad things get, keep trying to find new ways to break through their shell. Experience has taught me that they are still trying desperately to remain connected to you. Do everything in your power to help make this happen. Never stop tying to help them remain a part of the world around them.

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How to Communicate with a Dementia Patient – Part 3

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Hopefully you have read Parts 1 & 2 of my communication series. Here’s some additional advice:

  • Closely monitor any changes in your loved one’s medications. If you notice an abrupt change in their ability to communicate or assimilate data, investigate what medications they are currently taking. Make sure that they are receiving the proper dosages. If they live in a facility, make sure that there have been no medication changes made without your permission. Many times throughout Nan’s illness it has been necessary to actually reduce her dosages or omit a medication altogether. Be sure to speak to your physician anytime that you witness abrupt changes in your loved one’s personality, sleep habits, or communication skills.
  • Maintain healthy blood sugar levels. here is yet another factor that can affect your loved one’s ability to communicate and enjoy their life. Dementia sufferers are extremely sensitive to high and low blood sugar levels, resulting in heightened confusion and anxiety levels.
  • Be flexible. As you know all to too well, dementia patients have good and bad days. Don’t try to convey important information on a day when they are overly tired or are having difficulty with their normal routine. Also, choose a time of day that they are typically the most alert and mentally active. See my July 24th post: When Your Loved One has Sundowner’s Syndrome.
  • Keep a positive attitude. Remember that the patient is an emotional sponge and is affected by both your verbal and nonverbal cues.

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When Your Loved One has Sundowner’s Syndrome

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If you are caring for someone with dementia, I am certain that you have heard of Sundowner’s Syndrome. During my journey as a caregiver, dealing with change in behavior was quite possibly my greatest challenge. Almost every individual whom I have met who has dementia has at some point, suffered from some form of this syndrome. In my mother-in-law’s case, this was one of the first dementia symptoms to appear. In the last afternoon and early evening she became increasingly angry, non-cooperative, and aggressive. Although she exhibited mild variations of these behaviors throughout the day, they escalated as evening approached.

For this reason, I never planned visits or activities late in the day. I also tried to decrease her interaction with other patients and care workers during this time. Often the best remedy was to let her sit alone and not be bothered by other individuals.

Over the years I have heard many different explanations as to why this occurs. Some professionals attribute this change to the reduction of natural light. Others think that a contributing factor is the end-of-day frustrations of care workers. Personally I found this explanation ridiculous. I am not a scientist but having witnessed countless Sundowner’s episodes in a wide variety of people, I think that it all comes down to changes within their brains in relation to their internal clocks. Around the time Nan, my mother-in-law, began to experience Sundowner’s her sleeping patterns changed drastically and she began to confuse her days and nights. although there is no real cure, research has shown that increasing a patient’s exposure to light may diminish symptoms (Steven H. Zarit & Judy M. Zarit, Mental Disorders in Older Adults, 2nd edition).

As Nan’s dementia progressed, her Sundowner’s symptoms tapered off. This was a relief because for a short time it was necessary to manage her behavior with the use of a mild sedative so that she would not harm herself or others. This could be the one instance when pharmaceuticals could be the only solution. I strongly recommend that you speak with your physician if you believe that your loved one is experiencing symptoms of Sundowner’s Syndrome.

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Quill says: “This book is brilliant and most certainly one of the most heartfelt books I’ve read in some time.”.

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Creating Joy and Meaning for the Dementia Patient: A Caregiver’s Guide to Connection and Hope

By: Ronda Parsons
Publisher: Rowman & Littlefield Publishers
Reviewed by: Deb Fowler
Review Date: July 22, 2015

The role of a caretaker, particularly that of one in the throes of Alzheimer’s or other serious dementias, can be an extremely stressful and daunting one. It’s a role that if one had to choose, most would walk away from, most likely run. The emotional roller coaster of Ronda Parsons life was evident, but instead of riding it in fear, she decided to find joy in her journey. She prefaces Nan’s story, for it is ultimately hers, by stating that dealing with a severe dementia was a “demanding reality that can bring the most loving caretaker to their emotional breaking point.” Ronda’s and Nan’s journey was penned in a comforting, almost lyrical manner, but I saw flashes of anger, frustration, if not tears in certain situations.

For Ronda, as with many people I know, it was one of those “someone has to do it moments” when she took over responsibility for her mother-in-law’s care. Her beloved Nan had “lost her ability to connect the dots,” a task that now shifted to others. For Ronda the realization that helping and watching “someone you love slowly change and slip away is unfathomably sad and frightening.” What could have continued to be a desperate situation somehow became one of joy. For anyone who has ever received a call from a nursing home or other care facility asking for assistance in controlling or calming a loved one, it can truly make one’s heart turn to stone. I’ve been the recipient of some of those and my heart sank as I read a brief recounting of one.

Ronda’s recounting of their journey was a pensive one for me, but also a learning experience. It altered the way I looked at the treatment, the caretaker, and someone like Nan, a “gentle soul seated in a Geri-Chair.” It wasn’t a book that I was planning on racing through, although it would have been an easy task. I watched, listened, and learned through their loving experience with dementia. No, it wasn’t a cake walk, but when Ronda learned that she “possessed the power to alter the tempo and undercurrent of [their] relationship,” it was my wake-up call. I began to move forward, looking instead not at my needs in relationship to the afflicted, but rather theirs in relationship to mine.

Instead of becoming what Ronda dubbed a “champion of self-pity,” which any family member could be I carefully read what she had to say. Her dictate was that “You must decide how you will behave.” Indeed we have choices in life and how we conduct ourselves is one of them. In her dealings with Nan, she developed her Moment by Moment technique, one I will keep in mind if I once again find myself in a caretaker position. Little snippets such as “don’t try to drag them back into your world” will really hit home for those who need assurance.

Somewhere in the middle of the book the word “brilliant” came to mind. No, this is not a textbook nor was it ever intended to be one. It’s a book that speaks to the heart of the caretaker, giving them a soul-saving method to continue on their journey. Ronda’s statement that her “primary goal in all I do for Nan is to maintain her health and dignity.” This could be a mission statement, but certainly a must and can do for anyone. The conversational style made it quite easy to read and the book was extremely well-written. At the end of each chapter are “Insights,” brief statements I learned and will learn from.

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How to Communicate with a Dementia Patient – Part 2

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Communication Advice:

  • Speak in words and phrases that they used prior to their dementia. For example, when my mother-in-law was displeased with something she used to express her disdain by using the adjective ridiculous. So now when she refuses to let me put her dentures in her mouth, I quietly tell her that if she goes all day with no teeth she will look ridiculous. More often than not, this does the trick.
  • Don’t ever assume that they have correctly interpreted what you are trying to tell them. If they are able, retest their understanding by asking them to repeat information back to you. Remember that you are responsible for both sides of the communication equation.
  • Schedule video phone calls with family and friends who live far away. This is not only helpful for the patient, but it can also be a relief to those who do not have the opportunity to visit frequently.
  • Maintain proper hydration levels. Hydration is a key factor facilitating cognitive clarity and awareness. When my mother-in-law is dehydrated, she becomes confused, anxious, and defiantly non-communicative.
  • Monitor your loved one closely for possible infections. Because their systems are so sensitive, even a small infection can have an enormous impact on their daily life. Take their temperature regularly and if they begin to show signs of a fever, contact their physician immediately. My mother-in-law is particularly vulnerable to infections and can display drastic behavioral changes with even the slightest rise in her temperature. Sudden changes in your loved one’s demeanor can signal an infection.


How to Communicate with a Dementia Patient – Part 1

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Communication Advice:

  • Speak in short clear sentences. Don’t overwhelm the patient with lengthy explanations and reasoning. Leave the why of what you are hoping to accomplish. Remember, their ability to reason has been curtailed and additional information will only result in additional confusion.
  • When you ask your loved one to do a physical task, break the request down into small easy-to-follow steps. Don’t just say, “Get out of bed.” Instead gently guide them through the process. First tell them to “Sit up”; then “Put your feet on the floor”; then “Hold onto your walker”; and then “Stand up slowly.”
  • If they become frustrated or agitated when you are trying to convey information, stop and walk away. Do not argue with your loved one. Leave them alone for five or ten minutes so that they can calm down and relax. Most likely by the time you return they will be in a better and more cooperative frame of mind.
  • When having a conversation with your loved one sit face-to-face. I have found that I was much more likely to connect to my mother-in-law when we sat close to each other with our knees almost touching. This enabled our eyes to meet and for her to focus on my moving lips. Eye contact always helps create a connection between two individuals.

Additional advice will be coming soon in ‘How to Communicate with a Dementia Patient – Part 2″