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

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.

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

Take into Consideration: Planning for the Long Term

Much of Dementia care boils down to anticipating and planning for challenges you will face.

As a first step, the person or persons responsible for a loved one's care must have the legal rights to do so. Legal permission involves becoming the designated power of attorney (POA), or under certain circumstances, the conservator and guardian.

The amount and type of long term care your loved one needs is one of the first decisions you and your family will make.

Concerning home care, who will be the primary caregiver? What happens if it becomes neither realistic nor safe to shoulder caregiving responsibilities alone? Is the next step hiring a paid caregiver? Is the paid caregiver one that you hire or one contracted through a home care service? What are the criteria that make it necessary to transition your loved-one from home to an assisted living facility?

Some individuals fervently believe they will be his or her loved one’s caregiver throughout the illness. However, as is often the case, circumstances change. Therefore, you must anticipate and plan for modifications in the type and amount of care your loved one may eventually need. 

Research the options before you need them!

Contact your friends to discover if they know of a reliable caregiver or affordable homecare support. Look into non-profit organizations that provide various types of home care services. Visit assisted living facilities, speak with the director, ask about the services included in their monthly fees, view their inspection reports, and tour the facility. Learn the differences between a continuum of care, independent living, assisted living, and memory or dementia care. Become familiar with the steps you must take before you can place your loved one in an assisted living facility.

It may be months or even years before you come to this cross-road. However, doing your homework will minimize the time and stress of needing to take, often on short notice, this big step.

Developing the “what, if then, or buts” of medical care is another feature of a long-term care plan. Will your loved-one receive care from his or her family doctor or a Dementia care specialist? Research palliative and hospice care to be sure that preconceived ideas do not color your views. Learn about the purposes for palliative and hospice care, the best time to initiate them, and how they impact quality-of-life and end-of-life care. These last decisions are prone to family conflict and long-lasting feelings of ill-will.

A long term care plan includes funeral arrangements as well as various estate considerations. It’s not ghoulish to plan for the funeral. Cremation, embalming with or without embalming fluid, and burial location – are a few of many examples of the difficult and emotional decisions families make.

Prepare yourself for the eventual transition from caregiver to the representative of the estate. What are the responsibilities and the steps you must take to close the estate?

A long term care plan helps families navigate the challenges that dementia care present. Be sure to frequently review, update, and revise your loved one’s long term care plan.

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 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

Further Your Understanding: Dementia and Mood

Some people say Dementia turned their once loving and upbeat loved-one into an angry tyrant. Others may describe the changes in behavior and mood as “the same person, only more so.” Usually, “more so” is not good. Rarely does one hear that Dementia turned a difficult person into a pleasant one.

The behaviors associated with early-stage Dementia can be the most difficult. Your loved-one is fighting the imposed changes the diagnosis has brought to his or her life. And you, the family caregiver, do not have the experience to both calm your loved-one and cope with the disquiet this new relationship brings into your life.

As Dementia progresses from early to late-stage, moods, and behaviors worsen. In addition to increasing memory loss, depression, belligerence, apathy, physical aggression, wandering, repetitive questioning enters the picture.

It is useless to try to convince your loved one that what they truly believe is not what it seems. You will never win the argument.

“Distraction and redirection” is one helpful strategy to diffuse the situation. Rather than trying to prove his or her hat was misplaced and not stolen, make a comment about the nice weather and suggest going for a walk. Another way to address your loved one’s concern is to listen and tell him or her you will look into the matter. This simple tactic tells your loved-one you are there; you care, and you will make things right.

“Therapeutic deception” is another approach to managing difficult behaviors. Telling your loved one, “you will make things right,” isn’t a lie. It’s a kindness that gives him or her, and you as well, a few moments of peace. You will find a therapeutic deception is an approach you can apply to various difficult circumstances.

Dementia behaviors may also include some weird and scary things. More specifically, your loved one may experience hallucinations. How you respond to these unsettling behaviors has the potential of turning uncomfortable moments into situations that may necessitate assistance from your local police department or a trip to the emergency room.

Managing the difficult behaviors associated with hallucinations involve a different set of challenges. Telling your loved one, there isn’t any blood on the walls or bugs crawling up his or her back is fruitless. Hallucinations are sensory tricks. Your loved-one sees, hears, or feels something without the stimulus of light, sound, or touch. To prevent a difficult situation from escalating into one you cannot manage, you might say something like, “I cannot see what you see, but I am sure it is very scary.”

You might remind your loved one that you are there and that you will make sure they are safe. Sometimes a hug or a gentle touch will have a calming effect. Other times, when hallucinations cause overwhelming fear, the only thing you can do is take your parent to the emergency room.

Medication to reduce mood and behavioral difficulties is a controversial issue. Some people believe the drugs used to manage behavior are “chemical straight-jackets” meant only to make things easier for the caregiver. Other caregivers subscribe to the philosophy that providing meaningful activities for the person with Dementia, establishing a structured routine, and creating an enriching and pleasant environment can reduce the need for behavior modifying medications. In either case, one has to consider quality-of-life. Medication can reduce pain and suffering. If depression becomes overwhelming, belligerence creates a dangerous environment for the caregiver, or when hallucinations cause unrelenting terror, medication is both the humane and one that supports a better quality-of-life.

All of this is easier said than done, but do try to remember it is the disease that is speaking and not the person you once knew.

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 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

Exercise in Nature to Build a Better Brain

Research has found that there are benefits imparted by exercising in the natural world or a setting that is rich with the things we find in nature; like plants, fresh air, and wildlife.

While gyms serve a great purpose, and some people love them, I prefer to exercise in nature. The natural world provides a deeper and more dynamic level of stimulation for your brain that you simply cannot find at any gym.

One study conducted by Richard Louv, coined the phrase 'Nature Deficit Disorder'.

At first glance, this might sound a bit contrived. However, Louv asserts that human beings are hardwired by evolution to have a connection to nature. Unfortunately, the modern world and the trend for people living in large urban and suburban places reduces the opportunities for people to spend time in nature.

This sentiment that exposure to the natural world has an impact on us has been echoed by many people throughout the generations. The father of the National Parks system and one of the first naturalists, John Muir, said: “Civilized man chokes his soul.”

Although Muir himself lived a significant amount of his life in Martinez, California just outside of Oakland, the goal in his eyes was not that man needed only urban or natural settings, but that both were of equal value and that people who only embraced urban life were indeed cutting themselves apart from the very therapeutic aspects of a direct relationship with the natural world.

'Green Exercise' involves hiking in nature, or getting involved in other activities in the natural world. For people who live and work deep inside urban areas, this could also extend to things like taking a walk in the park, or along a natural stretch of river, or even getting involved in something like a community garden.

When you’re in nature, there is a lot of multimodal stimulation. You’re smelling the trees, flowers and the other scents in the air. You start to notice things like changes in humidity and the presence of birds and other creatures around you.

When you’re in the gym you’re going to have certain smells but you can usually predict what those smells are. It’s old gym equipment and rubber mats on the floor.

When you’re exercising in nature there is a greater sense of self-awareness, improved mood, increased sense of self-esteem, and even an increase in creativity. People exercising in nature tend to have creative thoughts come to them and find it easier to express those ideas with greater clarity.

The bottom line is that exercising in nature does, in fact, elevate the level of your brain and body functions. It’s a win-win for you and nature, and an important way to help build a better brain. I recommend that everybody get out there and do it!

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

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

Brain Healthy Diaphragmatic Breathing

Relaxing diaphragmatic breathing focuses on breathing by engaging the diaphragm. Your diaphragm is basically a series of big round, long broad muscles that sit under your lungs. They’re positioned about halfway between your neck and your pelvis.

When they go down (breathing in) they fill your lungs up with air that feeds oxygen into your bloodstream. The diaphragm muscles then go up (breathing out) and it forces that air out. 
Sometimes people have a tendency to suck in their gut, sit improperly in their chair, or have poor posture, which causes them to breathe more from the chest. Chest breathing should be secondary to stomach breathing.

If you look at the way a baby breathes, they breathe through the stomach. Then they breathe in with the help of the chest and the neck muscles. Those secondary muscles of the chest and the neck should come into play after the diaphragm activity.

There’s a simple exercise to show how much you’re incorporating your diaphragm in your breathing. Start by lying on your back, then put your hands on your stomach and take a nice deep breath. You’ll feel your stomach move up towards the ceiling. Your hands will rise and fall.

The goal is to draw about 75% of your breath from the stomach by expanding the lower lobes of the lungs fully. Then the end of the breath "in" should be through the chest. It’s like filling up a sponge with water and then squeezing it out. We’re filling up the lungs with oxygen and squeezing all of it out into our bloodstream.

When you’re breathing in and out really quickly or breathing more through the chest, you’re not getting as much oxygen into your lungs. You end up utilizing about half your lung capacity, and you’re only getting out about half of the carbon dioxide that needs to be expelled. 

There was a great book written in the 1970s by Dr. Benson, called the Relaxation Response. The book is still widely read today. It talks about diaphragmatic breathing, and what he calls Paced Breathing; where we have to breathe through the stomach in order to get the best oxygen exchange. It’s a great book to look at and still relevant today.

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

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 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

Risk for Dementia: Head Trauma

Traumatic brain injury (TBI) describes situations in which an external force, such as a fall or a blow to blow to the head causes extreme pain that is often accompanied by a short or a long period of unconsciousness. People who experience multiple traumatic brain injuries are at high risk of developing dementia later in life. (Note 1)

However, the key phrase “increase risk for” means that TBIs do not cause dementia but do increase the likelihood of having dementia sometime in the future.

In a recent and extensive review of the research literature, Sharan Shively, MD, Ph.D., and colleagues report that a history of moderate and severe TBIs increases the risk of having late-life dementia 2 - to - 4 times that of people who have never experienced a traumatic brain injury. (Note 2) To come to this conclusion, Shively and colleagues reference earlier studies that compare the presence or absence of later-in-life dementia in people who suffered concussions of sufficient severity to cause loss of consciousness to individuals who report never having experienced that degree of head trauma. (Note 2) People who experience multiple traumatic brain injuries are at high risk of developing dementia later in life. (Note 1)

The syndrome, associated with having multiple traumatic brain injuries was originally described in 1928. Called dementia pugilistica or “punch drunk” was first observed in boxers who suffered repeated knock-outs. (Note 3) It took many more years of casual observation before medical researchers linked a history of repeated sports and military-related head injuries, to the onset of dementia symptoms later in life. The condition, chronic traumatic encephalopathy, (CTE) now receives considerable coverage in the public media.

Signs and symptoms of CTE usually begin eight to 10 years after the traumatic brain injuries and include difficulty in thinking, impulsive behavior, memory loss, substance abuse, as well as suicidal thoughts or behavior. (Note 4) Over time, the changes caused by CTE worsen as well as progress to aggressive behaviors, tremor, and speech and language difficulties. (Note 4) More than one-third of people with CTE eventually show signs of other degenerative brain diseases such as dementia and Parkinson disease. (Note 3)

Undoubtedly, ongoing and future research will improve our understanding of traumatic brain injuries and their relationship to later-in-life dementia. In the meantime, you can reduce the likelihood of receiving a head injury by trip-proofing your home, being observant of hazards such as low tree branches and open kitchen cabinet doors, as well as by wearing a helmet to prevent sports-related injuries.

Even if you have experienced multiple head injuries, you may be able to reduce your overall risk of developing dementia by implementing lifestyle changes that include such things as maintaining a healthy weight, eating a heart-healthy diet, as well as participation in an assortment of physical, social and mental activities.

Notes:
1. Alzheimer’s: Can a head injury increase my risk?”, http://www.mayoclinic.org/alzheimers-disease/expert-answers/faq-20057837 (accessed March 21, 2016)
2. Shively et al, “Dementia Resulting from Traumatic Brain Injury” https://www.researchgate.net/publication/229011632_Dementia_Resulting_From_Traumatic_Brain_Injury_What_Is_the_Pathology (accessed March 22, 2016)
3. What Is Chronic Traumatic Encephalopathy?, http://www.brainline.org/content/2010/12/what-is-chronic-traumatic-encephalopathy.html (accessed April 7, 2016)
4. Chronic Traumatic Encephalopathy, http://www.mayoclinic.org/diseases-conditions/chronic-traumatic-encephalopathy/basics/definition/con-20113581 (accessed April 6, 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 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

Dementia is Person-Centered

This may surprise you, but it summarizes the impact Dementia may have on our families: we believe that more than 9 million Americans live with some form of Dementia today. Moreover, although the scientific community is attempting to shed additional light on the numbers, Alzheimer's-type Dementia alone is currently considered to represent more than half of the cases.* Even more shocking, according to the World Health Organization, when all forms of Dementia are combined, they are globally thought to be the 3rd leading cause of death, behind heart disease and stroke in high-income countries.*

Did you know? Dementia is not a disease. It is the umbrella term we apply to those cognitive diseases, e.g., Alzheimer’s, Vascular Dementia, Lewy Body, Frontotemporal and other conditions that can cause Dementia, which is the progressive loss of two or more basic brain functions and the accompanying activities of daily living. Yet, how you outwardly express Dementia is unique to you. People living with Dementia are still whole human beings and can experience joy, sadness, creative expression and much more.

Some would say that the number of deaths attributable to Dementia is significantly underreported due to the stigma associated with the various diseases, lack of education, or other coexisting health issues that can often occur at the end of your life. No matter what the numbers are, Dementia is costly in every way possible, both financially and emotionally.

Rich or poor, or somewhere in-between, you can die prematurely just because of Dementia. Alzheimer's disease, along with many other causes of progressive Dementia, cross cultural and socioeconomic divides. Today there are no cures or effective long-term treatments for almost all forms of Dementia.

However, you can get great satisfaction, and increased inner strength and sense of well-being in caring for someone living with Dementia, but it is still not easy. Even professional caregivers who are paid to give a helping hand, and assist those living with Dementia, experience occasional burnout. Person-centered care, and going further if possible to person-directed care, requires that we always treat individuals uniquely, with respect, and with dignity to the end of their lives. These are just a few of the keys to an optimal quality of life and the best possible tomorrows.

*Sources: see www.dementiasociety.org/home

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 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

Understanding Memory and Language

In the broadest sense, memory is the ability to retrieve information from specific areas of the brain. Types of memory fall into two categories – long-term memory and short-term memory. The kinds of information associated with long-term memory are the names, places, and dates that compose our personal history. Long-term memory also includes such things as the skills we have learned as well as the acquisition and use of language. 

When Dementia damages our long-term memory banks, we forget such things as our address and birth date, and may no longer remember how to drive the car or to use the washing machine.

When we lose access to our collection of learned information and built-in skills, we require assistance to live safely at home. Short-term memory, or working memory, is the ability to retain small bits of recently learned information, such as phone numbers, login codes, and street addresses.

People who have short-term memory deficits may not remember they have already taken their medication or, just an hour ago, ate lunch.

The ability to recall and use language is one of many ways to assess the progression of Dementia. In addition, specific kinds of language difficulties can help clinicians differentiate Frontotemporal Dementia (FTD) from other types of Dementia such as Alzheimer’s disease.

Language difficulties most often associated with Alzheimer’s disease are difficulty in finding the right words, describing objects rather than calling them by name, repeated use of familiar words, relying on gestures to express ideas, and reverting back to speaking a native language.

Unlike Alzheimer’s disease, people who have FTD often have difficulty in using and understanding spoken and written language. Language problems include repeated mispronunciations, such as “sork” for “fork” and the inability to make appropriate associations between names and objects. If your parent is not able to associate an object with a word, he or she may point to a sandwich and call it a baseball. People who have FTD are not aware of how they have changed.

Using words and phrases such as “this,” “that” and “over there” in the place of specific nouns and descriptions are language deficits typical of many types of dementia.

Memory loss and language difficulties often make communication awkward, difficult, and frustrating. It doesn’t take long before “never mind” replaces your efforts to engage in conversation.

Here are a few tips you can use to improve communication between you and your loved one. As you will read, most are expected norms of polite conversation.

· Give your loved-one the time to formulate a response
· Engage in one-on-one conversation
· Converse in a quiet space with few distractions
· Maintain eye contact
· Avoid criticizing or correcting misinformation
· Listen
· Avoid arguments
· Speak slowly
· Give step-by-step instructions
· Use written notes to prevent the frustration and confusion of remembering details.

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.

Dementia Can Affect Motor Skills

There is accumulating evidence that Dementia has a long pre-clinical phase that may begin years, or even decades prior to a clinical diagnosis.(1) In addition, there is data indicating the pre-clinical signs of Dementia, in addition to declines in memory and other cognitive skills, also include motor skill difficulties.

It’s difficult to tease out normal age-related changes in coordination and balance from those motor skills that put people at increased risk for Dementia. Measures of pre-clinical impairments include changes in gait and walking speed, loss of muscle mass and strength, as well as reduced manual dexterity and balance.

Once Dementia becomes part of the picture, friends and family members become increasingly aware of the changes in their loved one's memory and organizational skills. They may also notice their loved one has difficulty dressing or walking without assistance. Like the worsening cognition we associate with Dementia, losses in stamina and coordination also reflect more widespread brain damage.

Research shows that physical exercise plays an important role in helping to protect, maintain, and improve the health and well-being of people in either the pre-clinical or the clinical stages of Dementia. As is true for everyone, physical exercises must be safe, interesting, as well as give a sense of accomplishment. However, before embarking on new or increased amounts of physical activity, it is important that you first get approval from your loved one’s doctor.

A physical therapist (PT) is often a good place to start. He or she can devise an exercise plan to improve stamina, flexibility, balance as well as exercises that can prevent falls. You can find information about local physical therapists on the American Physical Therapy webpage. Your loved one's doctor, nurse, or medical social worker are other good sources of information.

Exercise also includes activities such as walking, dancing, gardening, and housework. All are inexpensive, do not require specialized equipment, and come with the satisfaction of having done something useful. As an added benefit all of these, and similar activities are sources of social and cognitive stimulation.

Exercise also includes activities that improve small or fine-muscle motor skills. The ability to button a shirt, open a cereal box, or use eating utensils, helps people who have Dementia maintain their independence for as long as it possible. An occupational therapist (OT) can suggest helpful exercises and adaptive equipment that can make it possible to live at home for as long as is possible. Go to The American Occupational Therapy Association webpage to learn more about occupational therapy and the many ways occupational therapy can help people who have Dementia.

Small muscle exercises include pastimes such as craft projects, scrapbooking, baking, working with clay, painting, and drawing. These simple and inexpensive small muscle activities encourage socialization and maintain or improve cognition. An added benefit and perhaps the most important one is making things to share with others creates mementos of a life together and affirms the whole person. 

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.” 

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 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. 


Reference: (1) Buchman AS and D Bennett. Loss of Motor Function in Pre-clinical Alzheimer's Disease. Access; September 25, 2016.

Have Fun, But be Mindful of Summer's Dangers

Who doesn’t love summer? For many of us it means trips to the beach, longer daylight hours, more socializing with family and friends, picnics, outdoor activities and more. But the lazy, hazy days that summer brings – specifically in sizzling temperatures – also can pose some serious health risks to seniors. Here are some tips to allow for a safe summer season.

Hydrate, Hydrate, Hydrate!

Keep your water bottle near you (and filled) at all times. Seniors are more susceptible to dehydration. As we age, our body naturally loses water, so that by the time we reach 80 years of age, we have 15 percent less water than that of a 20-year-old. Aside from that, our kidneys function less efficiently, and we tend to lose our sensation of thirst. Dehydration can manifest itself as dry mouth, troubled speech, lack of sweat, or confusion.

To counteract that, seniors should drink at least a half-ounce of water for each pound they weigh. So, a person weighing 160 pounds should drink 80 oz., or 10 8-oz. glasses of water, to stay hydrated. If spending time outside, seniors should up that quantity.

Sunburn Woes

Older skin is more susceptible to the effects of sun exposure. It’s thinner and has a reduced healing factor when it comes to sunburn. Also, certain medications that seniors take can make them more vulnerable to unsafe sun exposure.

To guard against sunburn, apply sunscreen heavily and often, using a product with an SPF of at least 15. If you must spend time in the sun during the hottest part of the day (10 a.m. to 4 p.m.), reapply more often.

Preventing Heat Exhaustion and Heat Stroke

As we age, our internal temperature regulation system doesn’t work as good as it did during our days of youth. As a result, heat exhaustion – when our core temperature reaches 100 degrees – can come about quickly and unexpectedly. Symptoms may include nausea, dizziness, a rapid pulse and muscle cramps. If left untreated, that condition could quickly escalate to heat stroke, a life-threatening condition.

Seniors are particularly vulnerable to these heat-related conditions. To prevent them from occurring, drink plenty of water and wear loose-fitting, breathable clothing – cotton and linen are great options – when going outside.

Making the right choices when it comes to your health will allow you to enjoy all the best that summer offers.

Source: Visiting Angels, a national agency, providing families with in-home elder care services.

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 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.

Helpful Tips When Escorting Those With Dementia in Public Places

Being in public with a loved one who lives with some form of Dementia can be stressful for the care partner if that person suddenly starts to express themselves in a way which others find out of the norm. Hey, it can happen, it's life, and it's okay. But, if Uncle Ned starts to take off his clothes in a shopping mall, or your wife, Alice, falsely accuses a stranger of stealing, what do you do? Worse yet, many businesses interfacing with their customers don’t understand the special needs of those living with Dementia, and instead of being supportive, may firmly ask them to leave the establishment.

If you dread the thought of taking your loved one out in public, you’re not alone. In a recent survey conducted by Home Instead Inc., franchisor of the Home Instead Senior Care® network, 74 percent of surveyed family caregivers caring for an individual with some form of Dementia said they and their loved ones had become more isolated as a result of the risks. Caregivers said the unpredictable behavior that can sometimes accompany Dementia made the idea of going out in public taxing.

Fortunately, more businesses are becoming “Dementia-aware,” and you can promote this trend by supporting these forward-thinking stores. Using some helpful tips will equip you with the knowledge and skills you need to venture confidently into a public setting.

Seek Out Dementia-friendly Businesses

These establishments have completed specialized training to better serve customers with Dementia illnesses and their caregivers. Employees of these businesses have been given insight into the various types of Dementias, how to respond to agitation in a customer with Dementia, how to use re-direction to regain focus of the customer who becomes disruptive, and how to help with decision-making by offering simple choices.

Prepare Explanations in Advance

If your loved one is prone to getting loud or agitated in public, plan in advance how you will explain this behavior to the strangers around you. Let them know they’re witnessing a disease process at work. Some caregivers print small cards to hand out that state the individual has a form of Dementia and to please forgive the outburst. The Dementia Society of America is about to publish it's useful and practical Aware Share Card™. Please send us a note here if you would like some mailed to you upon their availability. Discretely handing a stranger an explanation card can also help preserve your loved one’s dignity.

Keep a “Go” Bag on Hand

Make outings easy on yourself by keeping a tote bag at the ready. Stock it with items your loved one routinely needs, including a couple of incontinence briefs, wipes, sunscreen, magazines, books or anything you normally find yourself reaching for when you take a short trip. By having this bag constantly at-the-ready, you can pick up and head out at a moment’s notice.

Pack Portable Snacks and Water

Keep healthy, grab-n-go snacks on hand, like apples, small containers of grapes, energy bars, cheese sticks or crackers. This benefits you as well as your loved one since frazzled caregivers often go for hours without eating as they attend to their family member’s needs. And don’t forget to take a couple of bottles of water to stay hydrated.

Learn How to Handle  Various Behavior

You can start by understanding the underlying need beneath a behavior. For instance, a person who tries to take her blouse off may be indicating she is too warm. Dealing with challenging behaviors associated with Alzheimer’s disease or other Dementias can put a strain on the caregiver, but knowing what to do - whether by distracting the person or changing the environment or activity - can make all the difference in the world.

Pat Yourself on the Back

Each time you take your loved one with Dementia out in public, you provide interactions that can lift his or her mood and soothe that person’s soul—and yours, too. You also perform a valuable service by showing other people (including businesses) the true face of Dementia and by educating them about how to interact with these special people. So pat yourself on the back. You deserve it!

Source: Caregiverstress.com, a resource of Home Instead Senior Care. Modified slightly from the original to present a more pan-Dementia perspective and to remove words and phrases that are not part of our communications. 

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.

How to Keep Communicating

Dementia is a set of conditions, which can be caused by a variety of known neurodegenerative diseases*, and some still-yet-unknown triggers, which progress over time, and will likely affect a person's ability to remember and understand basic facts, such as names, dates, and places. Aside from that, it may gradually affect the way a person communicates as well. His or her ability to present rational ideas and to reason clearly could change, and it is up to those surrounding their affected loved one to modify their ways of communication to reach out and still have a connection.

If you are a caregiver to a person with Dementia, you may find that as the illness progresses, you'll have to start discussions to get the person to make conversation. This is common. The person’s ability to process information gets progressively weaker and responses can become delayed.

Encouraging someone with Dementia to communicate

Try to start conversations with the person you're looking after, especially if you notice that the person with Dementia is starting fewer conversations on his or her own.

Ways to encourage communication include:

• Speaking clearly and slowly, using short sentences.
• Making eye contact with the person when talking, asking questions or having other conversations.
• Giving the person time to respond, because he or she may feel pressured if you try to speed up answers.
• Encouraging the person to join in conversations with others, where possible.
• Letting them speak for themselves during discussions about their welfare or health issues, as they may not speak up for themselves in other situations.
• Do not patronize, or ridiculing what he or she says.
• Acknowledging what is said, even if your question has not been answered, or what is said seems out of context – show that you've heard the person and encourage the person with Dementia to say more.
• Giving the person simple choices when conversing.
• Using other ways to communicate – such as rephrasing questions because the affected person can't answer in the way he or she used to.

Communicating through body language and physical contact

Communication isn't just talking. Gestures, movement, and facial expressions can all convey meaning or help you get a message across. Body language and physical contact become significant when speech is difficult for a person with Dementia.

Communicating when someone has difficulty speaking or understanding can be made easier by:

• Being patient and remaining calm, which can help the person with Dementia communicate more easily.
• Keeping the tone of voice positive and friendly, where possible.
• Talking to the person at a respectful distance to avoid intimidation – being at the same level or lower can also help.
• Patting or holding the person’s hand can provide reassurance and make you feel closer, but watch the person’s body language to make sure the person with Dementia is comfortable with you doing this.

Listening to and understanding someone with Dementia

Communication is a two-way process. As a caregiver of someone with Dementia, you will probably have to learn to “listen” more carefully. You may need to be more aware of non-verbal messages, such as facial expressions and body language. You may have to use more physical contact, such as reassuring pats on the arm, or smiles, as well as speaking.

When communicating with someone with Dementia, “active listening” skills can help. These include:

• Using eye contact to look at the person, and encouraging that person to look back at you.
• Trying not to interrupt the affected person, even if you think you know what that person is saying.
• Stopping what you’re doing so you can give the person your full attention while he or she is speaking.
• Minimizing distractions that may get in the way of communication, such as the TV or radio playing too loudly.
• Repeating what you heard back to the person and asking if it’s accurate.
• “Listening” in a different way – shaking your head, turning away or murmuring are alternative ways of saying no or expressing disapproval.

It’s important to encourage the person with Dementia to communicate wants and needs – however, he or she can. Remember, we all find it frustrating when we can’t communicate effectively, or are misunderstood.

*More common diseases which have been identified: Alzheimer's, Vascular Dementia, Lewy Body Dementia, Frontotemporal Dementia, Chronic Traumatic Encephalopathy, among many others.

Source: This article was provided by the UK National Health Service (NHS), revised in December 2017. All rights reserved.

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 of America does not provide medical advice. Please consult your doctor.