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

5 Online Dementia-Help Programs You Can Access From Home

Now more than ever, accessing helpful Dementia resources from home is essential. With an internet connection, computer, and proverbial click of a button, you can discover many free and low-cost tools.

We’ve rounded up our top five favorite Dementia help trainings and video libraries designed to inform and comfort people living with Dementia and their caregivers. Discover more about them below, including what you’ll learn, the cost (if any), and how to watch.

(1) UCLA Caregiver Training Videos

This online dementia help video library by UCLA is geared for caregivers of people living with dementia. It covers a range of helpful topics that can make it easier to respond to common behaviors and scenarios. Each video comes with a written narrative featuring expert explanations and recommended caregiver responses.

What you’ll learn: This comprehensive Dementia help video library walks you through everyday challenges for people living with Dementia, such as alcohol abuse, driving, lack of eating and paranoid thoughts. Additional caregiver video topics include:

·         Bathing

·         Depression and apathy

·         Hallucinations

·         Home safety

·         Sleep disturbances

·         Taking medications

·         Repetitive behaviors

Cost: Free

How to watch: Browse UCLA’s online video library and select your desired topic. Most videos are available with multi-language subtitles, and English and Spanish audio.

(2) Morningside Ministries Caregiver Training Videos

Morningside Ministries is a San Antonio-based non-profit senior care organization dedicated to “caring for those who cared for us.” They provide care for more than 800 residents in assisted living, memory care, rehabilitation, retirement, and skilled nursing care. 

They’ve produced over 300 caregiver training videos since 2007, demonstrating its commitment to deliver quality and consistent resources.

What you’ll learn: Morningside Ministries features an extensive Dementia help video library on various caregiving topics ranging from finding elder care and combatting loneliness to music therapy and the latest Alzheimer’s research. 

The video, "The Difference Between Dementias," is particularly beneficial to help caregivers understand the top four types of dementia.

Cost: Free

How to watch: Browse the Morningside Ministries video library to explore featured and other dementia help videos by topic.

(3) Living with Dementia Five-Week Online Course

Johns Hopkins School of Nursing offers a free, five-week online Dementia help course on living with Dementia. It’s geared for health professionals and students, people living with Dementia, friends and family caregivers, and others interested in Dementia and quality care.

The course’s goal is to explore the global challenge of living with Dementia for individuals, their families, communities, and society.

What you’ll learn: Each of the five weeks in the course syllabus includes video segments and structured exercises and activities covering:

·         Week 1: The Brain
·         Week 2: The Person
·         Week 3: The Home and Family Environment
·         Week 4: The Caregiving Community
·         Week 5: Social and Policy Changes

Cost: Free to people who want access to the materials without earning a certificate. The fee is $49 for those who would like to earn a certificate upon course completion.

How to watch: Learn more about the dementia help course on the Johns Hopkins School of Nursing website and enroll at Coursera.org to access the videos.

(4) The Dementia Action Plan Workshop

Presented by founder and nationally recognized spokesperson, Kevin Jameson, this approximately one-hour Dementia help video is a recorded live talk filmed with a studio audience at the Philadelphia PBS® station affiliate, WHYY-TV.

What you’ll learn: This engaging Dementia help seminar covers what to know when dealing with Dementia, including straightforward and empowering steps for navigating life as a caregiver or the person living with Dementia.

Cost: Normally a $9.95 mission-related donation, but please be our special guest and use promo code "FREE" to watch at no cost.

How to watch: Click here to access this on-demand Dementia care planning workshop or contact us to request a free DVD.

(5) Dementia Unplugged ™ Webinars

Dementia Unplugged is a monthly educational and conversational webinar developed in cooperation with Jeannine Forrest, Ph.D., R.N. 

It offers dementia help and support for caregivers of people living with Dementia.

What you’ll learn: Covering topics such as housing and living options, caregiver grief, meaningful activities in the home, agitation triggers, and responding to hallucinations and delusions, Dementia Unplugged is a well-rounded Dementia help forum where audience participation is encouraged.

Cost: Free

How to watch: Register to access the monthly sessions via Zoom on the first Mondays of every month at 10 am CST.

Beyond the Dementia help videos and trainings featured on this list, you can find dozens of helpful dementia videos available on our YouTube channel at no cost. We also, invite you to browse our extensive collection of media on our website, including feature films and documentaries for caregivers and people living with dementia to enjoy from the comfort and safety of your home.

Normal Aging or Something More?

It can be difficult to separate the normal aging process from the progressive and steep declines typical of Dementia. Examples of genuinely age-related changes are thinning and graying hair, sagging skin, and alterations in vision, hearing, and taste. Other changes, such as heart disease and certain types of memory loss, are not a normal part of aging.

The normal aging process may affect memory by changing the way the brain stores and retrieves information. While healthy aging does not affect long-term memory, it may affect short-term memory by making it difficult to remember such things as the name of a new acquaintance or misplacing keys or eyeglasses. Occasional word-recall difficulties, rather than frequent ones, are another indicator of healthy aging.

How people evaluate isolated events as one way to distinguish normal memory lapses from those caused by dementia. At one time or another, everybody loses a car in a parking lot. We chalk up those moments of frustration to the number of look-alike cars or having our thoughts elsewhere with normal forgetfulness. A person who has Dementia is sure someone has moved the car.           

Name recall and word-finding are other ways to distinguish memory losses caused by the normal aging process from those resulting from Dementia. A person with occasional age-related memory difficulties might ask for a reminder or wait a moment for the right word to show up. A person with Dementia frequently has trouble finding and using the right word. To compensate, he or she may use either an awkward substitution or a description in place of the word. For example - a furry animal that purrs to replace the word “cat.” Further, there may be a noticeable decline in his or her capability to maintain a conversation.
Clinicians use the term “impoverished “to describe the Dementia-related changes in language complexity and vocabulary.

The ability to use household items is another indicator of Dementia. Most people find it annoying or frustrating when upgrading a home appliance to one that is heavy in technology or with new features. The source of annoyance often stems from changes in vision or the reduction in dexterity that arthritis may cause. However, people who have Dementia no longer know how to use their familiar dishwasher or drier.

When considering whether a set of symptoms indicates Dementia or normal aging, one must evaluate whether the symptoms are a nuisance, problematic, or debilitating. This is best accomplished with the help of appropriate medical professionals and input from caregivers and loved ones.

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

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

Sleep Helps Your Brain Repair Itself

At one time or another, everybody has bouts of sleeplessness. House noises, screaming babies, caffeine, or a bed partner who snores, often make it difficult to fall asleep and stay asleep. Eventually, you learn to limit the amount of coffee you drink, the screaming babies grow up, and the snoring bed partner, well ... still snores. Other causes of chronic sleeplessness are sleep apnea, acid reflux, jet lag, swing-shift employment, and ongoing stress that causes sleeplessness. 

Discoveries made by Oregon Health and Science University researchers show that sleep deprivation increases the risk of Dementia later in life and may quicken its progression for those who already have the disease.1 Their data show that insufficient sleep increases the production of beta-amyloid proteins that compose the plaques associated with various kinds of Dementia.1

Taking a different approach, the University of California Berkeley Sleep and Neuroimaging Lab researchers have evidence demonstrating the importance of deep non-REM (rapid eye movement) sleep in preventing memory loss. 2 The deep non-REM sleep phase, among other functions, appears to prevent the buildup of beta-amyloid proteins. Their work shows there is a correlation between the accumulation of beta-amyloid proteins, sleep disorders, and Alzheimer disease. 2
Also, insufficient sleep is a risk factor associated with other health conditions that include obesity, heart disease, and diabetes - all of which increase the likelihood of Dementia later in life.

What to do??
First of all, remember that risk factors do not cause disease but increase the likelihood of having Dementia sometime in the future. Second, and most importantly, modifying behaviors and habits associated with dementia, such as smoking and obesity, can reduce risk.

Sufficient sleep depends on the age of the individual. For adults, seven to 10 hours of sleep per night is considered healthy. 3  However, for adults older than 65-years of age, six to eight hours of sleep per night is both normal and healthy. 3
Many older people, believing less than 8 hours of sleep per night, is abnormal, resort to using sleeping pills. Unfortunately, using medication to assure sleep both increases the risk for dementia and worsens Dementia for those who have the disease.

People acquire habits and behaviors that unknowingly make it difficult to fall asleep and stay asleep. The National Sleep Foundation offers the following tips to get a good night’s sleep.3

⦁ Stick to a sleep schedule – even on the weekends.
⦁ Develop a relaxing routine to prepare your body for sleep. 
⦁ Use your bed only for sleep and sex. 
⦁ If you have trouble sleeping, avoid afternoon and early evening naps.
⦁ Exercise daily.
⦁ Make the room where you sleep comfortable and free from disturbing noise or other distractions. 
⦁ Sleep on a comfortable mattress and pillows. 
⦁ Avoid alcohol, cigarettes, and heavy meals in the evening. 
⦁ Wind down - an hour before bed, choose a calming activity such as reading. 
⦁ If you can't sleep, go into another room and do something relaxing or immensely boring until you feel sleepy. 

Notes:
1. How a lack of sleep can increase YOUR risk of dementia: Lack of rest prevents the brain from clearing out toxins that trigger Alzheimer's', http://www.dailymail.co.uk/health/article-3387246/How-lack-sleep-increase-risk-dementia-Lack-rest-prevents-brain-clearing-toxins-trigger-Alzheimer-s.html (accessed May 17, 2016)
2. Lack of Sleep May Lead to Dementia: New Research Finds It Makes Brain Vulnerable, http://alumni.berkeley.edu/california-magazine/just-in/2015-06-02/lack-sleep-may-lead-dementia-new-research-finds-it-makes (accessed May 17, 2016)
3. Healthy Sleep Tips, https://sleepfoundation.org/sleep-tools-tips/healthy-sleep-tips (accessed May 17, 2016)

Contributor: Janet Yagoda Shagam, Ph.D., 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

Medications: Help, Hurt, or Both?

In the United States, more than seven million people have mild cognitive impairment (MCI) or have dementia. According to Xueya Cai and colleagues, nearly half of these individuals have two additional chronic diseases that require they take five or more medications.1

As a consequence of age-related decreases in kidney and liver function, older people tend to excrete medications at a slower rate and are therefore more likely to experience stronger, and not always reversible, drug-induced side effects. Another factor is the potential for complicated interactions with the other prescribed and over-the-counter medications that older people may take. Research indicates that as people age, they become more sensitive to drugs that act on the central nervous system.2 

One group of medications, the anticholinergics, have recently come under increased scrutiny. This class of drugs slows or prevents the transmission of nervous system information to and from the brain. Some commonly used over-the-counter (OTC) medications, such as antihistamines for cold and allergy symptoms are anticholinergics. Prescription anticholinergic medications relieve symptoms associated with depression, muscle spasms, motion sickness, as well as those used to modify the behaviors associated with mental illnesses such as schizophrenia and bipolar disorder.

It is important to understand that memory loss and confusion along with dizziness or drowsiness may be symptoms of medication side effects, rather than dementia.  Therefore, the clinician must receive from the patient or his or her family a list of ALL prescribed and over-the-counter medications, as well as any dietary supplements and herbals, he or she may take.

 Anticholinergics can also interfere with the effectiveness of medications used to slow memory loss or long-term use, putting people at higher risk for MCI and dementia later in life.1,3 One example are the drugs used to treat overactive bladder: the “gotta go gotta go” kind of urinary incontinence. Medications such as Detrol® and Cymbalta® slow transmission of nervous system information to and from the brain and thereby quiet the unrelenting sensation of “gotta go."

The medications used to slow the memory loss associated with dementia do just the opposite. Drugs such as Aricept® and Namenda® increase communication between nerve cells in the brain. Taking both types of medications at the same time can worsen dementia.

A Wake Forest University of Medicine study shows that nursing home patients receiving individual medications to modify dementia symptoms and improve continence lost the ability to perform basic living skills, such as dressing and feeding themselves, 50 percent faster than those receiving dementia medications alone.4 

One must evaluate the overall risks and benefits of taking a medication known to affect the risk for dementia later-in-life or, in the short-run, worsen the disease. Be sure to discuss with your doctor any concerns about taking a medication that may increase dementia risk. Do not stop taking prescribed or recommended over-the-counter medicines without first consulting with your doctor.

Notes: 

1. Cai Z, N Campbell et al, “Long-term Anticholinergic use and the Aging Brain”, http://www.ncbi.nlm.nih.gov/pubmed/23183138, (accessed April, 25, 2016)

2. Drug-Induced Cognitive Impairment: Delirium and Dementia, http://www.worstpills.org/includes/page.cfm?op_id=459 (accessed, April 25, 2016)

3. Higher dementia risk linked to use of common drugs, GroupHealth Research Institute, https://www.sciencedaily.com/releases/2015/01/150126124721.htm (accessed April 25, 2015). 

4. Dual Treatment to Treat AD Symptoms and Behaviors, https://www.sciencedaily.com/releases/2008/04/080430134230.htm (accessed, April 25, 2016)

For Further Reading

Medications to Avoid in the Elderly, http://www.virginiageriatrics.org/consult/medications/medsList.html (accessed April 24, 2016) 

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 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

Fortify Your Brain through Use

“Use it or lose it" is a common expression we hear referring to physical and athletic abilities, maintaining hands-on skills, or the capabilities that come with formal education. Similar to how physical fitness and improves health and quality of life, brain fitness as a product of intellectual stimulation may reduce risk or help slow or lessen the impacts of Dementia.

Researchers and healthcare professionals use the terms “brain reserve” and “cognitive reserve” to describe the protective factors that brain anatomy and education have on the onset and progression of dementia. Often, researchers and clinicians do not distinguish between the two and use the term cognitive reserve. However, there are subtle differences between the two kinds of reserve. One can think of brain reserve as computer hardware and cognitive reserve as operating software.

Brain reserve, rather than reducing risk for Dementia, is brain resiliency or the ability to maintain adequate function in the face of increasing brain damage. In this case, researchers believe it is inborn brain architecture along with the number of neurons and connections between brain structures that create resiliency.

Physical methods such as using microscopes to examine pieces of brain tissue and medical imaging technologies to locate areas of high and low brain activity are the ways researchers assess brain reserve. 

Cognitive reserve is the affect brain exercise has on making the brain better able to resist the behavioral and intellectual declines Dementia cause. Researchers and clinicians use behavioral assessments, such as the mini-mental status exam, to evaluate cognitive resiliency. 

Brain fitness is one of the best ways to reduce the risk of age-related dementia. And should Dementia enter your life, brain-fitness may help to slow or lessen the impacts of the disease. Participating in physical activities such as baseball, flying radio control airplanes, hiking, or dancing requires both coordination and the ability to make split-second decisions.

 

Hands-on learning refers to making something or acquiring a new skill. Whether self-taught or with the assistance of a knowledgeable person learning how to build furniture, watercolor, construct a raised-bed garden, or to become proficient at using Photoshop, requires high-level thinking and problem solving, concentration, and creativity. 

Levels of participation in both physical, hands-on activities and formal education reduce the risk for Dementia and make the brain better able to resist the behavioral and intellectual declines of Dementia. 

Sadly, the progressive nature of Dementia eventually overwhelms the cognitive reserve that once supported adequate behaviors and abilities. When this happens, there is a rapid decline in cognition as well as in the ability to perform tasks of daily living such as getting dressed without assistance.

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 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

Caring Touch as a Way to Communicate

A crying baby elicits a predictable response from its parents or grandparents. An adult swoops in, lifts the baby in their arms, and snuggles, cradles, maybe even rocks the baby as the cries diminish, their breathing settles, the baby calms. As babies become children and even young adults, soothing and reassurance comes by way of hugs, pats on the back, a quick shoulder rub, or a hand laid on a forearm. These seemingly simple touches have enormous effects because they are hard-wired in human development. It should not be surprising then, that physical contact is a vital tool for those caring for loved ones with Dementia.

No matter one’s age, human touch enhances communication by expressing emotion and offering reassurance. In a scientific study, a “sender” was asked to convey a range of emotions - happiness, sadness, surprise, disgust, anger, fear, etc. – by touching the “receiver’s” forearm from behind a curtain. Receivers were able to accurately identify the emotion 48 - 83% of the time(1). No words spoken, no facial expressions visible – only variations in touch!

As a caregiver, the suggestion “Let’s get ready to go” may be easier to accomplish if accompanied by a warm hand on a shoulder. A gentle touch by a caregiver can improve compliance with requests, and offer reassurance when fear or concern is detected. Human touch increases the feeling of wellbeing by decreasing cortisol levels (the "stress“ hormone) and increasing oxytocin levels (the “love” hormone). If our goal is to care, comfort, and protect our loved ones with Dementia, the power of simple touch cannot be ignored.

From simple to professional, therapeutic massage intensifies the benefits of simple touch and introduces several more. Regular therapeutic massage lessens physical pain, decreases the physical symptoms of stress, reduces depression symptoms, improves immune function, and enhances attentiveness1. Because of these benefits, therapeutic massage should be on the menu of options for a loved one living with Dementia.

Lastly, we must not overlook the value of social interaction and connectedness delivered by a caring human touch. Humans are, after all, social animals. No matter the advances in technology, it is clear that when human touch is withheld, a void remains that cannot easily be filled with spoken words or digital screens.  

Note 1: Field, Tiffany. 2011. Developmental Review. (30) 2010 367-383. Touch for socioemotional and physical wellbeing: A review.    Accessed May 29, 2020, from https://www.radboudcentrumvoormindfulness.nl/wp-content/uploads/2019/02/artikel-4.pdf

Contributor:  Karen Ogden, DSA 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

A Little Help Here! Assistive Technologies for Caregiving

For many of us, the words “medical alert” immediately brings to mind the campy 1980s television commercial where “Mrs. Fletcher” cries out her trademarked line. It is a grim reminder that, according to the National Safety Council, falls are the leading cause of accidental deaths among people seventy-five years of age and older. 1

Older adults fall when they lose their footing, trip on rugs, or miss a stair. Changes in balance, vision, and muscle tone, resulting from or in addition to medication side effects, are other risk factors. Dementia adds another layer of risk when your loved one no longer associates wet floors with falls, the odor of burnt food with fire, or connects landmarks to location. 

Caregivers worry about these and other safety issues. When a caregiver does not live nearby, these concerns become especially worrisome. 

There have been remarkable improvements in alert systems since the days of "I've fallen and cannot get up." Modern assistive technologies include a suite of smartphone apps communicating with video and other monitoring systems. These apps can notify a caregiver their loved one is less active than expected, has left a defined area, if a home appliance has not been turned on or off, even when their blood pressure has exceeded their normal range. 

 

Other kinds of assistive technologies help people in the earlier stages of Dementia stay in his or her home for as long as is possible. Video calling allows for virtual check-ins while smartphone apps and voice-activated assistants can remind people to take their medication.  

Some assistive technology systems use recorded verbal reminders, while others provide visual instructions and larger key-pad buttons. Therefore, it is crucial to choose a system or device that matches your loved one's ability to use them.

Older, less advanced technologies continue to provide a safety net. Stand-alone GPS tracking devices can provide location information for your loved one, should wandering be an issue. Some states continue to provide a public service using television, radio, and the internet to broadcast missing person information. The value of simple medical identification bracelets or accessories shouldn’t be underestimated. They offer peace of mind that your loved one will receive appropriate care and assistance if in trouble.

Assistive technologies, though they may keep your loved one as safe as is possible, they do not replace friends and family, a warm smile, a calming hug, or a gentle touch.

Caregivers welcome the respite from unrelenting worry and stress assistive technologies can provide. However, ethical issues must be considered, including seeking informed consent to install assistive technologies in a person's home. The dignity of the individual, respect for privacy, as well as acknowledgment of his or her advance directives are other areas of ethical concern. 

For More Information:

Silver Alert https://nationalsilveralert.org/silveralert.htm

AARP. June 2018 Tech Solutions That Make Life Easier for Dementia Care. https://www.aarp.org/health/dementia/info-2018/technology-caregiving-dementia-patients.html

Notes:

1. Slip, Trip and Fall Protection for Older Adults, http://www.nsc.org/learn/safety-knowledge/Pages/safety-at-home-falls.aspx (accessed March 26, 2016) 

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 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

Read! Exercise for Your Brain

Most people have an innate desire to learn, and language is the primary tool for learning. Reading is an important mechanism for the delivery of information to the brain to be solidified as acquired knowledge. Reading is critical for your own personal and cultural development because it relates to so many factors in your life. The benefits are broad and significant.

First, the mental stimulation of reading is vital for brain health. It is quite literally exercise for the brain. Synapses fire, neurotransmitters are released, and hormones begin circulating. Reading material that evokes an emotional response actually stimulates the brain to produce hormones specific to the physical expression of those feelings. 

Next, memory is improved by reading. When you read a novel, for it to make sense, you must remember different characters and plot elements. Keeping all of these things in play has your short term memory working hard. This also requires, and so with repetition improves, the focus and concentration you need to follow the action through the course of the story. 

And don’t forget that the escapism offered by novels can also be an excellent stress management tool.

Analytical skills are also engaged through reading. Stimulating novels keep you involved - trying to figure out where the story is going. Technical books, however, require that you reason out how all the different pieces of information come together as a concept, procedure, or system. 

Reading also improves writing ability as vocabulary and variations in sentence structure are introduced or reinforced.  

The bottom line is that reading to learn something new is better for your brain than simply reading for entertainment. Still, even an entertaining novel offers the mental stimulation you wouldn't find passively watching TV or streaming media.

Contributor: Dr. Michael Trayford is a Board-Certified Chiropractic Neurologist and Founder of APEX Brain Centers in Asheville, NC. For more information, please visit https://apexbraincenters.com/cognitive-decline-asheville-nc/.

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

Art as a Spice to Life

It's so easy for family caregivers to get stuck in the daily routines of their loved one's care. Each new day brings the same as the last– make breakfast, dole-out medication, struggle with their hygiene, and manage challenging behaviors. The sameness can contribute to your emotional and physical exhaustion and strain your capacity to be a warm and loving son, daughter, husband, wife, or friend. Taking the time to be mindful of creative needs can give both of you a refreshing mini-vacation from illness. 

Making and finding art opportunities for your loved one may not be as difficult as it may appear. Watercolors, paper, brushes, and a kitchen table and you are good to go. Share the creative process with your loved one. Making art together also makes memories.

Many community and senior centers offer art classes for people in early and mid-stage dementia. Contact your local Agency on Aging or other organizations that provide local support and counseling services for people who have dementia and their families.

Another easy way to find art programs is by searching the internet using keywords such as "art and dementia". Narrow your search by including the name of your state, city, or town. If you come up empty-handed, just ASK. You have everything to gain when you explain to senior center directors and directors of other organizations the need for art programs customized to meet the needs of people who have dementia.

Other options are the art education programs that many museums and, some galleries, offer. The Museum of Modern Art (MoMA), in New York City, has set the standard for making art accessible to those with Dementia. With the guidance of specially trained museum docents, visitors explore selected museum collections where they can see and, when appropriate, touch wall art and sculpture. Interactive installations may invite viewers to experience sight, touch, and sound. The conversation about art and the environment is another facet of the MoMA program. However, feelings and memory – not art history – are the inspirations for meaningful interactions and conversation

The MoMA website gives a complete description of the MoMA Project. (https://www.moma.org/meetme/modules/index ) Search the internet to locate nearby programs. Type in the name of the state followed by descriptive words such as “museum,” “Alzheimer,” “Dementia,” and “outreach.”

The year after my mother’s death, I decided to volunteer some of my newly-realized free time to the dementia community. I developed a curriculum that I hoped the “artists” would find satisfying and challenging. The outcome was a brief presentation to a local support group was four eager participants and their spouses. The three men and one woman had various types of dementia. Over the year, the artists learned basic design principles, made relief prints, painted self-portraits, and designed and printed T-shirts for themselves and their family members. Donations covered the cost of supplies.

I expected the spouses would take their off-duty time to run errands. But as it turned out, they formed an impromptu support group and spent the class time in a nearby coffee shop. Soon, “just coffee” morphed into family dinners. One of my most precious moments was when one man told me that the art class made him feel that he was becoming something rather than losing what he had once been.

Want to Know More?

1. “I Remember Better When I Paint.” https://www.youtube.com/watch?feature=player_embedded&v=54AtoQVGfwU (Accessed February 26, 2016)

2. Hayes, J. and S. Povey, The Creative Arts in Dementia Care: Practical Person-Centered Approaches and Ideas. London, England: Jessica Kingsley Publishers, 2010.

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 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

Make the Time, Don’t Find the Time

If you've been a regular reader of the Dementia Society of America blog, you know that better heart health can lead to better brain health. Exercise is just one way to increase heart health, so, how do we make exercise a priority in our daily habits and among our countless distractions?

Most people are just kind of trucking through their day, trying to get through their tasks and to-do lists. That might involve getting their kids from school, work-related tasks, and hopefully having some time to spend time with friends or make a quick appearance at the gym.

One very telling trend is the number of people that buy a gym membership, yet fail to use it. While several different studies are posting similar statistics, it is estimated that 73% of people with a gym membership either fail to use it at all or use it so infrequently that it imparts no long term health benefits.

The usual trend is that there are a lot of people who sign up for a year-long gym membership as part of a New Year’s resolution. They get this membership with the best of intentions, but by the middle of January or early February, the vast majority of them have stopped going to the gym. One of the most common excuses use is that their lifestyle doesn’t allow them the time to work out regularly.

I have found that the key to developing a successful long-term exercise routine is to develop a mindset of making the time, instead of finding the time.

You should approach it with the same mentality you would if you were scheduling an office meeting every Monday, or making sure that you’re picking up your kids from school at the same time every day.

Some talk about how juggling their career and family, along with other responsibilities, can be a huge obstacle. While this does present challenges and imposes demands on our time, there are those with even more on their plate that still make it a point to make the time to exercise.

The bottom line is that you need to make the time to exercise, because if you try to find it; the day will get by you and you’ll end up sitting on your couch worrying about our waistline while your brain and everything else suffers as a result of not exercising the way you should.

Contributor: Dr. Michael Trayford is a Board-Certified Chiropractic Neurologist and Founder of APEX Brain Centers in Asheville, NC. For more information, please visit https://apexbraincenters.com/

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