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.

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.

Identifying Frontotemporal Dementia

In 1892, the German neurologist and psychiatrist Arnold Pick described a case involving an elderly patient with progressive loss of speech and Dementia. Later, when the patient had died, the autopsy showed that certain parts of the brain had shriveled. Unlike the widespread shrinkage associated with Alzheimer’s Disease, this type of Dementia appeared to target the frontal and temporal lobes.

The two frontal lobes, located on the front of each half of the brain, contain the structures that control our executive functions such as planning, organizing, and solving problems. The frontal lobes also control behavior, emotions, and personality.

The two temporal lobes, located on each side of the brain just above the ear, give us the ability to perceive and recognize faces and objects and transfer short-term memories into our long-term memory banks.

It is not surprising to discover that people who have Frontotemporal Dementia may no longer seem like the people we once knew. A parent who was once friendly, polite, and careful about their appearance may say and do socially unacceptable things. Emotional blunting, or the inability to express verbal and non-verbal feelings, is another characteristic of this type of Dementia.

Another clue that can indicate Frontotemporal Dementia is difficulty in using and understanding spoken and written language. Language difficulties include repeated mispronunciations, and the inability to make appropriate associations between objects and their name. Frontotemporal lobe patients may use words and phrases like “this,” “that” and “over there” in the place of specific nouns and descriptions. People who have Frontotemporal Dementia are not aware of how they have changed.

Scientists do not know the cause of Frontotemporal Dementia. However, research demonstrates that genetics often plays a role in its development. Some studies show alterations in genes that code for specific brain proteins in nearly 45 percent of people who have family members who have certain types of Frontotemporal Dementia.1 These altered proteins form insoluble deposits in brain neurons. The deposition of the proteins causes the neurons to swell, burst open and die.2

It appears that genes play a role in nearly 45 percent of people who have Frontotemporal Dementia.1 However, it is also important to remember that for more than in 50 percent of Frontotemporal Dementia families, genetics either does not play a role or is not yet an understood factor.

Tests are available to determine if the Frontotemporal Dementia that you, or another family member, have is genetic in origin. Making the decision to undergo testing is not always easy. It is important to consider how you and other family members might feel if you should receive positive results. Will knowing make you anxious, relieved, or empowered? Will other family members also want testing? How might this information affect family planning for you or your adult children? Will having a positive test influence your employer or make it more difficult to receive health or life insurance?


Anybody would find these and many other questions difficult to answer. Often, people find talking with a genetic counselor can make the decision to test – or not – easier. The genetic counselor, by explaining the technical and emotional issues associated with genetic testing, can help you make a comfortable decision. Afterwards, the genetic counselor can explain the test results to you and guide discussion about any further steps you may want to take. 

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.

#frontotemporaldementia #emotionalblunting #genetictesting #dementiasocietyBLOG

References:
1.     HS Kirshner, “Frontotemporal lobe dementia: Genetic Distribution and Variation,” http://emedicine.medscape.com/article/1135164-overview#aw2aab6b4 (accessed March 5, 2016).
2.     W Leonard, MpH“Causes of Dementia,” http://www.healthline.com/health/dementia (accessed March 6, 2016).