Dementia was the key topic for our first Retired Chaplains Conference.
Our guide was the Rev. Colette Wood, whose father had dementia. In response, she wrote Do This, Remembering Me: Spiritual Care of Those With Alzheimer's and Dementia. You can review and order it by clicking here.
What is dementia?
In two words: Cognitive decline.
More completely: An overall term for a wide variety of conditions relating to a decline in the brain's ability to function, with symptoms such as memory loss, confusion, difficulty communicating, mood changes, challenges in planning, and physical decline, including mobility issues and vision problems.
Of people with dementia: 70% live alone, 25% are undiagnosed, 81% are over 75 years old.
There are many kinds of dementia— depending on whom you ask, anywhere from 50 to 100.
Alzheimer's is the most common, accounting for 60% to 80% of all cases. According to the Centers for Disease Control and Prevention [CDC], it's the 6th leading cause of death in the United States, and someone is diagnosed with it every 67 seconds.
Vascular Dementia is the second most common, usually associated with a stroke or transient ischemic attack [TIA]. The symptoms are similar to Alzheimer's, with a better ability to recognize people.
Others include dementia related to Parkinson's, Lewy Body, and Huntingdon's diseases; Frontotemporal Dementia; and traumatic brain injury, including post-traumatic stress disorder [PTSD] and Chronic traumatic encephalopathy (CTE)— e.g., from football injuries.
The New York Times published an article titled "Dementia May Never Improve, but Many Patients Still Can Learn." You can read it by clicking here.
Recognizing the Signs of Dementia
The following information comes from Dementia Friendly Massachusetts, a public education campaign by Senior Living Residences. Here's their website: https://mcoaonline.com/. [Bracketed supplementary comments are mine]
Dementia Friendly Massachusetts begins with this Note:
Our job is not to diagnose, it is our job to understand. While dementia affects every individual differently, there are some common signs that can be recognized. Should you see someone exhibiting one or more of these symptoms, be patient, communicate clearly, and listen. Here are some of the most common signs:
1. Balance and mobility issues: Dementia can physically affect someone, too, causing poor balance while standing or sitting, difficulties walking on uneven surfaces (like a weathered parking lot or grassy area), a need for assistance sitting or standing or walking, and even frequent falls.
[see also 6. below: Vision problems]
2. Memory loss that disrupts day-to-day activities: More than simply misplacing keys, individuals with dementia may not remember things like the reason for being where they are. Often someone with dementia will recall things from their past more easily than something very recent.
3. Challenges in thinking and planning: You may find someone with dementia struggling with decision making. Handling money falls into this category (making change, paying bills, or even understanding the cost of things). They may appear confused or have trouble following directions or instructions.
4. Poor judgment: Dementia inhibits a person's ability to assess risk or safety, and causes an inability to understand correctly the intention of others or even their own ability. They may also use unsuitable language or display inappropriate behaviors.
[3. and 4. above are also key reasons that some seniors fall for scams: before their cognitive problems are obvious to others, they may already lack enough of their executive functioning to make them vulnerable to scam artists.]
5. Confusion about time or place: It is very common for someone with dementia to be unaware of the date or confused about the time of day. They may find themselves lost in a well-known place.
6. Vision problems: Dementia can cause difficulty with identifying colors, faces, or objects. Patterns, reflections, and spatial relationship can also become hard to comprehend.
[A. Dementia patients often lose their peripheral vision, so the range of their vision isn't much different than seeing the world through binoculars, or having tunnel vision.
[That means you should approach them head on rather than from the side, which may surprise and startle them.
[Get at eye-level and say "hi," and don't touch them because their impaired vision won't give them the visual cue that they are about to be touched.]
[B. It is harder for people with dementia to distinguish black and white, so it helps to use bright colors and to dress colorfully.
[A black mat in front of a door can deter them from leaving, because visually it looks like a hole.
[For men with dementia, it's a good idea to remove baskets from the bathroom and use a red or blue toilet seat.]
7. Difficulties in communication: Someone with dementia may experience an inability to find the right word, difficulties following a conversation, or find oneself easily distracted by background noise.
[A. Because the left brain deteriorates more quickly than the right brain, language is affected earlier, sometimes losing about every 4th word.]
[B. And because conversation is more difficult, actions are more important than words.]
[C. Rather than explain what you are going to do (which may sound like "blah blah blah"), use body language and demonstrations.]
[D. When you do talk, don't yell or use baby talk.]
8. Restlessness or disorientation: In unfamiliar or noisy environments, people with dementia may become confused or ill at ease, fidgety, or even agitated.
9. Unusual behavior, mood, or personality changes: This covers a wide range of activities, such as withdrawal from social activities, inexplicable sadness, anxiety, or frustration, a lack of confidence, obsessive behaviors, or insensitivity toward others.
[A. The right brain, which deteriorates more slowly than the left brain, governs emotion, singing, prayer, and emotional memory.
[It also governs our language filters, so as these deteriorate, a person with dementia may use bad words and racial or misogynous slurs stored in memory.]
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The Conversation Project includes another useful resource for people and families of those living with dementia. On the left side of their home page at https://theconversationproject.org/, under Get Started, click on the Alzheimer's/Dementia Starter Kit button.
Here are three articles about dementia from The New York Times.
(If you don't subscribe to The New York Times, you may be allowed free access for several articles each month.)
The first, titled "Supplements Won't Prevent Dementia. But These Steps Might," you can read by clicking here.
To read the second article, titled "Magic Table," please click here.
And the most fascinating article, about the possibility of future breakthrough therapy, was originally and better titled, "A Moonshot for the Brain"— which you can read by clicking here.
Dementia Friendly Communication Tips
Note: How you choose to communicate with someone exhibiting symptoms of dementia will shape your interaction. Responding with kindness, compassion, and understanding, can diffuse a confusing or aggravated situation.
1. Be aware of your body language: 55% of what we are communicating comes from stance, gestures, and facial expressions. Be caring, smile, and never cover your mouth or face when communicating.
2. Choose your words: The words you choose should be clear and in simple sentences.
Speak slowly. Remain calm while speaking. Allow time for your words to be processed and understood.
Use "can" phrases rather than "can't" phrases.
3. Watch your tone: The tone and pitch of your voice will be perceived before the words you say.
4. Use visual clues when possible: Point to specific objects or use pictures on a chart or menu to help communicate and aid in their decision making.
5. Be patient: Some extra time is sometimes all it takes, whether that time is needed for counting money, comprehension, or making a decision.
Don't rush, and don't make them feel they are holding you up.
6. Be respectful: Never treat the adult as though she or he were a child.
Don't be condescending.
Don't argue.
Don't command.
7. Assist, don't take over: Offering help and support can be very positive experiences, but don't take over.
If someone needs help with a task or direction, do it with them, not for them.
Completing a task for someone can reduce confidence and the feeling of independence.
A few miscellaneous tips from the Rev. Colette Bachand-Wood:
1. If a person is able to have conversation, consider what kind of topics you might bring up.
2. Remember to drop the word "remember!"
Don't use phrases like "Remember how. . . ?" or
"Remember when. . . ?" or
"Remember N.?"
Otherwise, they may feel shame or confusion or lose their dignity when they can't remember.
3. If on first approach the interaction doesn't go well, leave for a short time, and when you come back, try something different.
4. Look for things in their environment that might engage them in conversation: photographs; paintings; objects on a table, like a paperweight; objects on a chair or sofa, like a pillow or quilt.
5. Be aware of their scope of vision and limited peripheral vision: don't "sneak up" on them.
6. To wake someone, touch them below the knee and say her or his name.
7. Forget your agenda, and go with theirs.
The Experiencing Self and the Remembering Self
Here is a summary of what Daniel Kahneman writes in his book Thinking, Fast and Slow (New York: Farrar, Strauss and Giroux, 2011:
There is an experiencing self, who lives in the present and knows the present.
There is a remembering self, who keeps score and maintains the story of our life.
The experiencing self is the one who answers the question, "Does it hurt now?"
The remembering self is the one who answers the question, "How have you been feeling lately?"
My Insight about the Experiencing Self and the Remembering Self
Kahneman's distinction between the remembering self and the experiencing self is important because a person whose remembering self is impaired by dementia still has an experiencing self, so I need to forget my desire to correct or confront that person's faulty remembering self, and concentrate on giving that person's experiencing self the very best experience she or he can possibly have in the present moment.
Ambiguous Grief or Loss
The grief or loss we experience when someone dies is definitive: a life has ended, and we have public rituals and private ways to help us process our grief and cope with our loss.
Not all grief or loss is definitive: with divorce, the ex-spouse is still at large; with missing children, hope is in a constant struggle with fear; with dementia, we stand on shifting sands of engagement. In short, ambiguous grief happens when the other person is still alive.
You can read more about this here, and here, and here.
My Insight about Ambiguous Grief or Loss
This concept helped me recognize an aspect of my experience of aging.
Often unbidden, I experience my six-year-old self, and my ten and thirteen, and my twenty-five and forty and . . . older-year-old selves— and at the same time, I know and feel my diminishing powers and confront my inexorable ascent up the existential escalator to my final floor.
The experience of aging is also the experience of ambiguous grief and loss, because I, too, am still alive.
What's the difference between forgetfulness and dementia?
Two representative differences:
1. Losing things:
People with dementia lose things frequently and have no idea how to go about finding them.
People without dementia lose things occasionally and are able to develop strategies for finding them, like deciding to retrace their steps.
2. Having conversations
People with dementia frequently forget or misuse words, repeat phrases or stories, and have difficulty holding a conversation.
People without dimension occasionally forget words, and still carry conversations easily.
Lifestyle Behaviors May Help Prevent or Slow Dementia
NBC News recently published an article, which you can access here, which suggest not smoking, exercising at a moderate to vigorous level for at least 150 minutes a week, consuming a brain supporting diet, light-to-moderate alcohol consumption, and engaging in late-life cognitive activities.
A complementary article, which you can read here, offers the acronym SHIELD for lifestyle factors that appear to help reduce the risk of developing Alzheimer's. They include developing good Sleep habits; getting a Handle on stress; Interacting with friends; Exercising daily; Learning new skills; and eating a healthy Diet.
In conclusion, here are some links to additional resources:
For the Alzheimer's Association, "the leading voluntary health organization in Alzheimer's care, support and research," please click here.
For our Federal Government's "portal to information on Alzheimer's disease and related dementias care, research, and support," please click here.
For the Eldercare Locator, "a public service of the U.S. Administration on Aging" which helps locate "services for older adults and their families, please click here.