At Every Turn, Choose Togetherness

At one time or another, everyone has reason to feel isolated within their surroundings. Sometimes, people purposely isolate themselves to get the quiet time they need to focus and concentrate. Other times it is circumstance, such as being the caregiver for a loved-one, that causes isolation.

People who seek isolation usually do not feel lonely. However, involuntary isolation can make people feel entrapped and very, very lonely.

Feelings of loneliness can occur with or without the presence of other people. Parties and other social events can be lonely if the need for interaction and inclusion is not met. At the most basic level, loneliness is missing  cues that remind us of who we are.

There are many things caregivers can do to lessen their feelings of isolation and loneliness. First, self reflection. Frequently, the family caregiver, believing he or she is the only one who can give their loved-one the proper care, seems unable to accept offers of help from family members, friends, community or faith-based organizations. 

When help is accepted, regularly scheduled getaways, hours or days long, can give caregivers the respite they need to relax, reconnect with friends, or to participate in a favorite activity. 

People living with Dementia also experience isolation and loneliness. Friends and family may disappear, and with their disappearance, there are even fewer opportunities for socializing. Eventually, as the condition progresses, isolation and loneliness become inevitable. 

For those in early stages of dementia, living life to its fullness - saying yes to life more than no -  can help them cope with the emotions that come with their diagnosis. Join your loved-one on their “I’ve always wanted to visit or do" lists. Do silly things together, and encourage activities that preserve family history. 

It is equally important to give your loved-one the pleasure and challenge of arranging activities and extending invitations to family and friends. Doing so becomes a declaration of “I am still here.” 

With symptom progression, efforts to reduce isolation and feelings of loneliness require help from family, friends, and professional caregivers. Visits to their home or assisted living community or conversations by phone or video can help your loved-one recall the roles he or she played within the extended family and community. 

Other ways include encouraging your loved-one to leave the confines of their room and spend time where people congregate in common-use areas. Interactions with babies, children, pets and therapy animals may also reduce feeling of lonesomeness. 

Finally, opportunities for self-expression can help people living with Dementia to feel less isolated and alone. There are many simple ways that range from arts, crafts, and music activities to writing poetry and visiting a near-by nature preserve, to connect people who have Dementia to their authentic or most essential self.

Content Contributor: Janet Yagoda Shagam, PhD, is a freelance medical and science writer and the author of "An Unintended Journey: A Caregiver's Guide to Dementia." Available through Amazon. (Modified by K. Ogden, team member Dementia Society of America)

The opinions expressed by contributing authors are not necessarily the opinions of the Dementia Society, Inc. We do not endorse nor guarantee products, comments, suggestions, links, or other forms of content contained within blog posts that have been provided to us with permission, or otherwise. Dementia Society does not provide medical advice. Please consult your doctor. www.DementiaSociety.org

"Life is Uncertain, Eat Dessert First" -Ernestine Ulmer

Let's talk about food, eating, and Dementia. A person's eating habits will change as their Dementia symptoms change. In the early stages, those living with Dementia may be able to prepare, consume, and enjoy their meals as they always had. But, they may not be able to recall the foods they ate with which meal on a given day.

Middle stages of Dementia present different challenges. As symptoms progress and memory worsens, it may become difficult for the person to recall if or when they ate at all. Meals are skipped or repeated. Navigating the kitchen with all of its appliances, tools, cabinets, and drawers becomes nearly impossible. Failing memory may lead to eating utensils left on the table, unused.

At this stage, the sense of smell may become impaired, altering taste and food preferences. Favorite foods become intolerable while an uncharacteristic interest in sweet or salty foods takes their place. Complicating the process, fine motor coordination involved in chewing and swallowing may deteriorate. Behavioral changes like hoarding and hiding food as well as eating non-food items such as soap can also develop in mid-stage Dementia.

Over time, meals may become nothing more than cereal and milk. It remains important to encourage healthy eating habits, both for adequate nutrition and to maintain regularity. Still, recognize and respond to your loved one's food choices- prepare small amounts of their favorite snack foods, made available in a way that respects their independence. 

Later stages of Dementia may leave a person unable to recognize food nor know what to do with it. The person in your care may lose the ability to synchronize chewing, moving food to the back of the mouth, and then swallowing. Pocketing is a related difficulty that occurs when food accumulates between the teeth and cheek.

Many methods used to help people with swallowing problems require an ability to follow and remember directions. Often the only solution is for you or other caregivers to hand-feed small amounts of soft or liquefied foods. Be sure to seek advice regarding the types of foods that work best, as well as receive instructions for safe hand-feeding methods and what to do if your loved one does gag and choke.

For caregivers, how to address feeding problems may be the first of many end-of-life decisions. The immediate goals are to provide enough calories to prevent weight loss and malnutrition and to devise ways to prevent the aspiration of food into the lungs. 

Some doctors believe tube feeding is the best way to address this stage of decline. However, research shows that using feeding tubes in patients with late-stage Dementia neither prevents complications nor improves quality-of-life. 1

Respect for and the preservation of your loved one's dignity figure into these decisions. While thin lines separate methods to- maintain the quality of life, to save life, and to prolong life -it is for each family of caregivers, hopefully guided by a living will, to determine the appropriate path at the end of life.

1.    Li, I, MD. "Feeding Tubes in Patients with Severe Dementia," American Family Physician http://www.aafp.org/afp/2002/0415/p1605.html, (accessed September 21, 2016).
  
Content Contributor: Janet Yagoda Shagam, PhD, is a freelance medical and science writer and the author of "An Unintended Journey: A Caregiver's Guide to Dementia." Available through Amazon. (Modified by K. Ogden, team member Dementia Society of America)
The opinions expressed by contributing authors are not necessarily the opinions of the Dementia Society, Inc. We do not endorse nor guarantee products, comments, suggestions, links, or other forms of content contained within blog posts that have been provided to us with permission, or otherwise. Dementia Society does not provide medical advice. Please consult your doctor. www.DementiaSociety.org

Finding New Pathways to Cognitive Resilience

Imagine a woodland, blanketed with knee-high snow. On foot, you need to cross. Those first few crossings are tough, lifting your feet high, then crushing the snow underneath. With repetition, you’ve built a path and your crossing is made faster and easier. One day an interesting birdsong catches your attention and you stray from your worn path, starting a new one. 

For several days, you follow the new path hoping to catch a glimpse of the elusive bird. Now you have two worn paths. Every so often, exploring the reaches of the woodlands, you create and then retrace new paths. A large tree breaks under the weight of the snow, completely blocking your first, main path. Because you branched out, explored new areas, you have options.

Applied to the brain in a general way, this scenario represents the real-world value of neuroplasticity. Our brain function relies on fast and accurate communication of sensory inputs and responses, traveling through chains of brain cells (neurons) where chemical neurotransmitters serve as the language of that communication. Well-used neuron chains are in effect the snow-packed paths in the woodland.

Neuroplasticity describes how experience and environment trigger the brain to form new connections and pathways. Should a brain injury occur - stroke, trauma, or other - neuroplasticity allows for workarounds that can compensate for impaired function.  This capacity is crucial to rehabilitative therapies. 1 

But neuroplasticity is also key to managing risk and slowing the progression of neurocognitive disorders, including those resulting in Dementia.  New and novel experiences, no matter the type, lay down new pathways connecting different areas of the brain. These pathways allow for learning a new task or committing to memory the sights, sounds, and sensations of a new destination. They open up a network of routes for neuro-communication that can be used for a range of functions much broader than the original task or experience would suggest.

While repetition builds stronger pathways, a recent investigation suggests that prolonged experiences such as physical exercise or stress can change the language of communication between neurons, substituting one neurotransmitter for another. 

A study of mice running in a wheel demonstrated both the switch-up in neurotransmitters and an overall improvement in coordination and motor learning.2 Not only did they run faster, but the mice also had an improved ability to walk a tightrope and balance on a rotating rod. 

This process, the neurotransmitter switch, is of interest to researchers examining mechanisms behind stress-induced diseases. It will also be important as we learn how targeted exercise might be used as a treatment for other diseases. 

Another related area of study with great potential is neurogenesis- the creation of new neurons.  Neurogenesis is regulated by neurotransmitters – think of the study of mice in the running wheel. While neurogenesis is slowed by stress and aging, rates can be accelerated by physical exercise and brain exercise, for example learning new concepts or skills. Of course, many other molecular mechanisms also affect the process of neurogenesis.3  

Neuroplasticity is as complex as it is crucial to our cognitive health. A technical summary would be that curiosity, physical activity, and novel experiences enhance neuroplasticity through mechanisms such as the neurotransmitter switch and neurogenesis. A practical summary though - while the main path may be easy, it would serve us well to tread more paths. Even better, use different tools like skis, snowshoes, or crampons, and skills like using a bird guide, binoculars, and journaling your experiences. 

1 Ackerman, Courtney E., MA. What is Neuroplasticity – A Psychologist Explains. Accessed 4/15/2020 from https://positivepsychology.com/neuroplasticity/

2 University of California Television. 30 June 2017.  “Neuroplasticity: Our Adaptable Brain with Nick Spitzer”. [Show ID: 32521] Accessed 15 April 2021 from https://www.youtube.com/watch?v=DXA_iTG3XSM

3 Ming, Guo-Li, and Hongjun Song. “Adult neurogenesis in the mammalian brain: significant answers and significant questions.” Neuron vol. 70,4 (2011): 687-702. doi:10.1016/j.neuron.2011.05.001 Accessed 15 April 2021 from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3106107/

Contributor: Karen R. Ogden, team member, Dementia Society of America.

The opinions expressed by contributing authors are not necessarily the opinions of the Dementia Society, Inc. We do not endorse nor guarantee products, comments, suggestions, links, or other forms of the content contained within blog posts that have been provided to us with permission, or otherwise. Dementia Society does not provide medical advice. Please consult your doctor. www.DementiaSociety.org

Wishes and End of Life Conversations

Many people find talking about their end-of-life wishes extremely uncomfortable. Yet, when asked, nearly everyone has strong convictions about their end-of-life care. Some might say, “Do everything possible to prolong or save my life." Others might say the same, so long as they have a "good quality of life." Your loved ones want what's best for you, but they cannot read your mind. Such difficult decisions require your guidance.

Meaningful end-of-life choices require both introspection and research. For some, religion is their guide - for others, their decisions come from life experiences. Making decisions about treatments such as tube feeding and cardio resuscitation require that you learn why and when doctors may opt to use or not use these procedures.

Palliative and hospice care is another facet of your end-of-life care. Another word for palliative care is comfort care. Patients continue to receive standard treatments for their conditions. However, as the disease progresses, patients receive increasing amounts of comfort care. An example of comfort care is using medication to relieve pain rather than treating the source of pain surgically.

Hospice, an extension of palliative care, provides patients and their families care and support from a team of healthcare providers and counselors. Volunteers may give families time they need to attend to their personal needs and other matters. Palliative and hospice care are not, as many believe, "pull the plug." Rather, it indicates the recognition that a patient will not be cured of their condition, that it will ultimately cause their death.

There are several ways to get the information you need to write realistic and meaningful end-of-life wishes. The Conversation Project is an initiative by a non-profit organization that provides tools for individuals to self-evaluate their end-of-life wishes.  Downloadable guides provide helpful suggestions to prepare and initiate conversations with family members. 1

The advance directive, or a living will, is a set of instructions that details the types of medical and life-sustaining measures you may want. This document includes the instruction to "keep me clean, comfortable, and free of pain or discomfort so that my dignity is maintained, even if this care hastens my death." This last phrase gives permission to family members and clinicians to evaluate your wishes in the context of humane care. For example, it would be inhumane to give last-ditch cardio-resuscitation to a person who has severe osteoporosis as the procedure would crush the patient’s ribcage.

Your advance directive is a legally-binding document that requires your signature and the signature of at least one other witness or a certified notary depending on where you live. Advance directive forms are available from your healthcare provider, local agency on aging, or your state health department.

Five Wishes is a product of the non-profit organization, Aging With Dignity.2 They designed an advanced directive template that also addresses personal, emotional, and spiritual issues in addition to meeting medical and legal criteria. 

Your family members must know where to find your end-of-life care documents. To make it as easy as possible, do not put your documents in a bank safety deposit box. Also, give a copy to your doctor so that he or she can include it in your medical records file.

And yes, you may amend your end-of-life documents.

Notes:

1. The Institute for Healthcare Improvement, http://www.ihi.org/Engage/Initiatives/ConversationProject/Pages/default.aspx (accessed, September 11, 2020)

2.  Aging with Dignity, https://www.agingwithdignity.org/five-wishes (accessed September 11, 2020)

For Further Reading: Frontline: Facing Death,

 http://www.pbs.org/wgbh/pages/frontline/facing-death/educational-module/decisions-near-end-life/ (accessed Sept, 11, 2020)

Contributor: Janet Yagoda Shagam, PhD, is a freelance medical and science writer and the author of “An Unintended Journey: A Caregiver's Guide to Dementia.” Available through Amazon.

The opinions expressed by contributing authors are not necessarily the opinions of the Dementia Society, Inc. We do not endorse or guarantee products, comments, suggestions, links, or other forms of content within blog posts provided to us with permission or otherwise. Dementia Society does not provide medical advice. Please consult your doctor. www.DementiaSociety.org

6 Interesting Facts About Lewy Body Dementia

Lewy body Dementia, or Dementia with Lewy bodies, is the second most common type of progressive Dementia following Alzheimer’s disease. The disease is characterized by protein deposits in nerve cells in the brain regions that control thinking, memory, visual processing, and motor control.

In this article, we’re taking a deep dive into Lewy body Dementia to explore its origins, symptoms, and treatments and therapies that can help you or a loved one navigate your Dementia journey.

Fact #1: Lewy body Dementia is one of the primary causes of Dementia in older adults.

Usually beginning after age 50, Lewy body Dementia affects more than one million people in the United States. Experts have discovered that it appears to affect more men than women, making gender one of the primary risk factors. Other risk factors include advancing age and a family history of Lewy body Dementia or Parkinson’s disease.

Fact #2: Lewy body Dementia is named after the scientist Fredrich H. Lewy.

While researching Parkinson's disease in the early 20th century, the German-born American neurologist Friedrich H. Lewy discovered abnormal protein deposits on the brain later called Lewy bodies. When these Lewy body proteins build-up, they can disrupt the brain's normal functioning and cause problems with how the brain works, affecting memory, movement, thinking skills, mood, and behaviors.

Fact #3: Lewy body Dementia is a progressive disease with a range of cognitive and physical symptoms.

The symptoms of Lewy body Dementia emerge slowly and gradually worsen with time, making it a progressive disease. In the early stages, people living with this type of Dementia may experience mild symptoms that allow them to function relatively normally. As the disease advances, people may notice changes in alertness and attention or movement and posture, including confusion, hallucinations, and muscle stiffness. In the later disease stages, people living with Lewy body Dementia often depend on others for assistance and care.

• Fluctuating alertness and thinking functions
• Repeated visual hallucinations
• Parkinsonian symptoms
• REM sleep behavior disorder, where people act out dreams while sleeping

Fact #4: Lewy body Dementia can be hard to diagnose.

There is no single test to diagnose Lewy body Dementia. Doctors diagnose the disease by ruling out other conditions with similar symptoms. For instance, Lewy body disease shares similar symptoms with Parkinson's and Alzheimer's diseases, causing experts to speculate that it might be related.

Lewy body Dementia diagnostic testing may include neurological and physical exams, mental ability assessments, blood tests, brain scans, and heart tests. In addition to the test findings, a Lewy body disease diagnosis requires a progressive decline in thinking abilities and two of the following:

Fact #5: Currently, there is no cure for Lewy body Dementia, but treatments and therapies can help alleviate the symptoms.

Doctors often use medications to help people living with Lewy body Dementia. Alzheimer’s and Parkinson’s disease medications can treat neurological and physical symptoms, while other medications can offer relief from sleep and movement problems.

Some people living with Lewy body Dementia find non-drug approaches helpful, such as modifying the environment to reduce distractions, receiving soothing responses for reassurance and following daily routines with simple tasks.

Physical, occupational, speech, and mental health therapies can also play a role in symptom relief.

Our Ginny Gives grant program provides other healing therapies that help people connect through art, music, dance, and touch.

Fact #6: There are many supportive resources available to help people living with Lewy body Dementia and their families and caretakers.

Our supportive resources provide much-needed information, local resources, and life-enrichment programs to enhance the lives of individuals and families affected by Lewy body and other types of Dementia, including:

• Truthful definitions to expand your vocabulary

• Care education to guide your decisions

• Dementia help resources to further your understanding and learn how to help

• Brain health information from reliable and trustworthy sources

• Relevant and topical streaming program for individuals and caregivers.

• No-fee memorial registration to pay tribute to a life well-lived

To learn more about our programs and offerings that can help people living with Lewy body disease and other types of Dementia, contact us online or call 1-800-DEMENTIA (1-800-336-3684).

Important Notice: Dementia Society of America (DSA) does not provide medical advice. The contents are for informational purposes only and are not intended to substitute for professional medical advice, diagnosis, or treatment.

Do You Remember When?

 

“I see trees of green- Red roses too, I see them bloom- For me and for you... “

“You may say I'm a dreamer, But I'm not the only one…”

"Almost Heaven, West Virginia. Blue Ridge Mountains, Shenandoah River…"

“Bye, bye Miss American Pie- Drove my Chevy to the levee but the levee was dry... ”

“Born down in a dead man's town -The first kick I took was when I hit the ground…”

“Woah, we're halfway there -Woah, livin' on a prayer -Take my hand, we'll make it I swear… "

Surely while reading these lyrics, you experienced a trickle or a flood of memories or maybe the tingle of emotion not born of the present moment.  You may recall a moment in time - where you were, who you were with, and what was going on. Or you may be transported back to a period in your life filled with joy, romance, frustration, even grief. How does this happen, and how can we harness that power to enrich and enliven lives those living with Dementia?

Much academic study has focused on how background music affects cognitive processing. Because listening to music elevates arousal (or physiological activity), mood, and the listener’s enjoyment, cognitive performance is also increased.(2) Working memory is tasked with interpreting a series of sounds into the rhythms and melodies that make it music. This helps explain why memories associated with particular songs are often permanently etched in our brains – our cognitive processing was on overdrive when those memories were being recorded and transferred to long-term memory. 

Music and emotion are intertwined. Not only does heightened arousal fortify memories made while listening to particular pieces of music, but the same is also true for emotions. Increased blood flow to areas of the brain involved in generating and controlling emotions activates the functions of emotion, attention, and memory.(4) Further, consider how rhythm compels us to move. A slow dance with your partner, or the exuberance of singing and dancing with friends. We, as humans, are moved emotionally by music.(3)  

Early adulthood is filled with new emotions and experiences gained as we move towards independence- these experiences are a big part of how we see our “selves”.  So it is not surprising that people most prefer and are most stimulated by music that was popular when they were young adults.  Past romantic relationships and experiences with friends and family are most often recalled with the replay of music.(1)

As Dementia progresses, using music to help individuals remember their vibrant, youthful “selves” can bring joy to caregivers and patients alike. When one hears a piece of music from years gone by, the pleasant memory and emotion can be experienced again and again. Recognizing that "remembered joy" in your loved one living with Dementia can be just the uplifting moment a caregiver needs. Dementia or not, you can transport back to happy times through music is a reprieve from everyday stresses and frustrations. It's free. It's easy. It’s fun.

Do you remember when- we used to sing Sha la la la la la la la la la la te da, la te da?

1  Baumgartner, Hans. 1992. Remembrance of Things Past: Music, Autobiographical Memory, and Emotion, in NA - Advances in Consumer Research Volume 19: pp. 613-620. Accessed September 22, 2020 at https://www.acrwebsite.org/volumes/7363/

2  Bottiroli, Sara et. al. Frontiers in Aging Neurosci., 15 October 2014. The cognitive effects of listening to background music on older adults: processing speed improves with upbeat music, while memory seems to benefit from both upbeat and downbeat music. Accessed September 22, 2020 at https://www.frontiersin.org/articles/10.3389/fnagi.2014.00284/full

3  Proverbio, A. M. et al. The effect of background music on episodic memory and autonomic responses: listening to emotionally touching music enhances facial memory capacity. Sci. Rep. Accessed September 22, 2020 at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4606564/

4  Lutz, Jäncke. Music, memory and emotion. J Biol. 2008; 7(6): 21. Published online 2008 Aug 8. Accessed October 5, 2020 at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2776393/

Contributor: Karen R. Ogden, team member, Dementia Society of America.

The opinions expressed by contributing authors are not necessarily the opinions of the Dementia Society, Inc. We do not endorse nor guarantee products, comments, suggestions, links, or other forms of content contained within blog posts that have been provided to us with permission, or otherwise. Dementia Society does not provide medical advice. Please consult your doctor. www.DementiaSociety.org

Then and Now: A quest for information

 

Imagine your loved one is showing symptoms of cognitive decline or was diagnosed with Dementia. You have a deep need to investigate, learn how they came to this point, what their future may look like, and how you can support them as their loved one.  

Say it's 1980. Where would you start? You might pick up the phone to talk with your  friend whose mother had Dementia.  Or you’d head to the public library. Pulling open the long drawers of the alphabetical card catalog, you would flip through the titles and copy call numbers of books that might help. Next, scan the shelves, find the books, peruse their table of contents, take them to a table, scan, read, and take handwritten notes. 

In 1995, you may supplement the card system with a computer that helps you find articles in physically bound periodicals stacked on library shelves. You may find yourself sitting in front of a boxy machine, through which you view items stored on microfilm. These tasks take attention and patience, time, and persistence.

Jump ahead to the year 2000. Computers have made their way into homes, schools, and public libraries. Instead of reading books and magazines, you search the internet for “Dementia” and read the resulting information- book excerpts, news articles, journal publications, credible scientific research, and statistics right there on your screen. 

Return to the present—a new Dementia diagnosis. So much has been learned and shared. So much information is available to you, so much so that it may feel overwhelming. Where do you start? Of course, all the printed resources remain available at your library and local bookstore. Streaming video content has become a fixture. Documentaries, non-fiction television series, university lectures, courses, and professional presentations are all available with a point and with a click. The key is to find sources that are credible and trustworthy.

A great starting place is our own website Dementia Society of America. In an easy to use format, it will guide you to the practical information a family member or caregiver needs to understand and manage day to day concerns while caring for a loved one with Dementia. 

Should you want to take a deep dive on the types of, treatments for, and current research on Dementia, the site will connect you to useful, credible sources. One such source is found at the National Institute on Aging: Alzheimer's Disease and Related Dementias page, compiled by the U.S. Health and Human Service Department. 

To examine specific topics like palliative care, agitation in your loved one, communication techniques, and so much more, explore the Dementia specific presentations offered at Dementia Unplugged. Hearing the thoughts and experiences of experts and practitioners in the field can make a lasting impression on your care and understanding of those living with Dementia. 

A monthly conversational / interview approach will be introduced in upcoming episodes of Dementia Unplugged. This approach is not unlike that phone conversation you may have had in 1980. The difference is that the questions and the answers come from knowledgeable sources, experts, or first-hand experience. This mix of information and personal connection is informative and reassuring, like a conversation with a trusted friend.

Finally, when it comes down to caregiving logistics, the Dementia Answers Directory will help you find the professionals and organizations who can help you along the way. Organized into categories of care needs, searchable by location or keyword, it connects you to the resources you’ll need. Like the Internet, the directory’s content will expand over time. 

Help and answers are available. You have options for how and where to find it; choose the media that works best for you. The journey is, after all, yours, but not yours alone.  There is a community of people with the same worries, joys, challenges, and successes - at the ready to help you along the way.

Contributor: Karen R. Ogden, Dementia Society of America team member. 

The opinions expressed by contributing authors are not necessarily the opinions of the Dementia Society, Inc. We do not endorse nor guarantee products, comments, suggestions, links, or other forms of content contained within blog posts that have been provided to us with permission, or otherwise. Dementia Society does not provide medical advice. Please consult your doctor. www.DementiaSociety.org