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Tips for a Relaxing and Joyous Holiday Season

The upcoming holiday season can cause caregivers mixed emotions. When the music, commercials and ads are all focusing on how to make the season “merry and bright,” you might be filled with dread for what you anticipate will be an extra drain on your energy, your emotions, and your preparation time.   Dec 2 Star on treeIt is also very common to experience a sense of loss for the way things “used to be.” At a time when you believe you “should” be happy, you could instead find that stress, disappointment, and sadness prevail. Get rid of the “should” in your thinking!

Take a deep breath and realize that you already are a gift to your loved one. Here are a few suggestions that I have culled from a number of sources to help you stress less, keep your sanity, and experience the true meaning of the season – LOVE!

Adjust your expectations!

Begin by taking a good look at what you can realistically do to celebrate the season. Consider what may be expected of you, both socially and emotionally. What does the holiday season mean to you, your loved one, and your family? Give yourself permission this year to do less. Pick and choose what traditions and activities are most important. How much of the planning and execution can be done together with your loved one and family members? Perhaps it’s time to modify or start new traditions.

Keep your sanity by keeping celebrations simple. You may need to schedule and limit holiday visits of family and friends to certain times or days. Consider having gatherings with a few people at a time. Plan a slow-paced brunch or noon meal, rather than a late dinner when you and your loved one are apt to be tired.

Help manage others expectations!

Prepare your loved one for any upcoming events. Try to keep to their daily routine as much as possible. Let them help with decorations, baking, icing cookies, wrapping presents, signing holiday cards, or whatever they are still capable of doing that they might enjoy. Build in rest/quiet times for them, especially if you will be visiting in others’ homes. Keep in mind that it is exhausting for a person living with dementia to try to make sense of everything around them, especially when the noise and activity levels are overwhelming.

Prepare family members or friends who will visit ahead of time as to what to expect. If they haven’t seen your loved one in a while, familiarize them with your loved one’s condition and any behavior changes. An easy way to do this is via an e-mail letter where you express that you are eager to see them, but to make it a rewarding experience for all concerned, you need to update them on some of the changes in your loved one’s condition.

Let them know that you intend, as much as possible, to control stress this holiday. Let them know your wishes. Remind them not to ask a lot of questions, especially “Don’t you remember….?” Discuss the need for them to be patient, to speak slowly in a relaxed tone, one person at a time, and not to argue.

Schedule their visits at your loved one’s best time of day. Ask them to bring photos or their favorite traditional holiday foods to share. Delegate tasks that will give you some relief, such as setting the table, helping cook, doing dishes.

Play holiday music and sings carols together. Music is a great way to enjoy each other’s company. Music also stimulates long-term memories.

Take care of yourself!

Dec 2 GiftThe holidays are opportunities to share time with people you love, but trust your instincts. Resist the pressure to celebrate the way others might want or expect you to. Make these celebrations easy on yourself so that you may concentrate on enjoying the time together with your loved one, your family and friends.

You might want to arrange for someone to stay with your loved one while you attend a holiday religious service, or take a few hours of a break away to meet up and enjoy time with your friends.

It is so important that, as a caregiver, you not only take good care of your loved one, but you also take good care of yourself. Whether you celebrate Christmas, Hanukkah, Kwanzaa, or Feast of the Three Kings, remember that the only ideal one is when you decide to make the holiday season a reflection of your values, dreams, affections, and traditions. You are the gift that keeps on giving day in and day out as the primary caregiver, not just during the holidays, but all year round.

May you and your loved ones experience the true joys of a memorable holiday season! I wish you peace, patience, love, and joy today and every day!

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Dementia advocate and trainer, Teepa Snow, offers additional tips for the holidays: http://myalzheimersstory.com/wp-content/uploads/2015/12/Teepa-Snows-Holiday-Tips.pdf

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The Midlands Chapter of the Alzheimer’s Association, Omaha, NE, prepared a booklet with more holiday suggestions: https://www.alz.org/documents/midlandschapter/holiday_tips_for_caregivers_booklet_web-11.pdf.

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To help put you in the holiday mood, watch this YouTube video from The Piano Guys that combines Beethoven’s “Ode to Joy,” with Handel’s, “Joy to the World:”  https://www.Youtube.com/watch?time_continue=3&v=JyVEKsNFDjw.

A Reflection: Counting our Blessings at Thanksgiving

At this Thanksgiving season, there is so much for which we as caregivers can express gratitude. Nov 18Gratitude enables us to see the many blessings all around us. The more we find to give thanks, the more things we find to be grateful for. Here are just a few examples:

  • GRATITUDE for the grace to care for someone who is no longer able to care for himself/herself, and in so doing provide ripples of security and peace to relatives and friends;
  • GRATITUDE for the opportunity to actualize our potential, and reinforce the virtues of patience, compassion, forgiveness and mercy, just to name a few;
  • GRATITUDE for the gifts that we possess whether through genetics or birthright;
  • GRATITUDE for the innate gifts and positive qualities that we possess but often take for granted, like creativity and resourcefulness;
  • GRATITUDE for the people we have encountered on our life’s journey. No matter how brief the encounter, it has enabled us to experience our dignity and self-worth.
  • GRATITUDE for the people who believe in us when we were unable to believe in ourselves;
  • GRATITUDE for the unexpected beautiful moments in life, like the kindness of a stranger, the smile from a baby, the helping hand of a neighbor or relative;
  • GRATITUDE for the gifts we have taken for granted, our parents, clean water, shelter, well-stocked supermarkets, etc.
  • GRATITUDE for the many opportunities available as we navigate through difficult times;
  • GRATITUDE for the memories we cherish.

Take time out to reflect on your own personal blessings, and perhaps even write these in your journal.

The Thanksgiving holiday provides not only an opportunity to be grateful for the blessings in our lives, but also to look at the challenges we faced this past year from a different perspective – a perspective of grace embedded in a silver lining.

Shift your focus now to recall a CHALLENGE that you once faced as a caregiver, one that was a painful experience, perhaps one which left you with some unfinished business. At the time when you were dealing with the CHALLENGE, you may not have had the resources to deal with it then, as you do now. What were your emotional assets at the time of that CHALLENGE? What made it difficult for you to draw on these assets?

Find a quiet place and a comfortable position to sit and reflect. Make sure that the chair is comfortable. Sit in an upright position with your shoulders relaxed. Place your feet flat on the floor, with your knees a few inches apart. Your hands are open, with palms down and resting on your thighs. Gently close your eyes and focus your awareness on your breath. As you breathe in, visualize drawing your breath from the universe, the same air that is available to all human beings, plants and animals. As you breathe out, visualize and feel your breath going into the universe, — a process of giving and receiving.

Allow thoughts of your personal CHALLENGE to come and go, without any embellishments, recriminations, or judgments. In retrospect, you are giving yourself the freedom to experience that CHALLENGE in a different way. You will now be looking at that CHALLENGE through new sophisticated lens which you have acquired for this specific purpose. In the process you have found a “gold nugget” amid the “debris.”

What does the “gold nugget” symbolize in your life at this moment in time? How has the “gold nugget” enhanced your life and enabled you to grow?Nov 18 gold-nugget

Had you been deprived of that CHALLENGE, would you be the same person you are today?

What important lessons have you learned from that experience? How has your experience enabled you to connect or empathize with people of similar experience? How will it enable you to face the CHALLENGES of today and the CHALLENGES of tomorrow?

Take a few moments now to write down your reflections from this meditation. What is the light that emerged from that darkness and for which you can truly give thanks this holiday season?

I wish you peace, patience, compassion and joy in your caregiving today and every day!

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Many thanks to my friend and mentor, Merle Stern, who composed this Thanksgiving litany and its accompanying reflection!

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My wishes and prayer for you this Thanksgiving are in a hymn composed by one of my favorite British composers, John Rutter. Please take a moment to listen to this blessing, “The Lord Bless You and Keep You:”  https://youtu.be/PaLBndhralI.

 

Veterans and the Risk of Developing Dementia

My father was a proud World War II Army veteran. I have a nephew in his twenties who recently served in the Army in Iraq and Afghanistan. Another nephew is currently serving in the Marine Corps and intends to make it a career. I have often wondered about the likelihood of soldiers returning from their tours of duty, eventually developing Alzheimer’s or other forms of dementia. I came across some recent articles that gave me disturbing answers.  Nov 4 soldier-996536_640

Veterans’ Unique Risk Factors

There are currently about thirteen million veterans over the age of 55. This represents two-thirds of the veteran population in our country. The Department of Veterans Affairs (VA) estimates that more than 770,000 older veterans have Alzheimer’s disease or associated dementias. The National Institute of Health published a study in which they estimate that 420,000 veterans will have developed Alzheimer’s between 2010 and 2020.

According to Dr. David X. Cifu, a researcher and traumatic brain injury specialist at the VA, veterans are at a higher risk for developing Alzheimer’s for several reasons. There is a higher prevalence of mental health disorders in the veterans’ community which creates more likelihood of developing dementia.

The unique risk factors include: post-traumatic stress, depression, traumatic brain injury, and blast-induced neurotrauma.

  • Post-traumatic Stress Disorder and Depression

According to a study that appeared in the Journal of the American Geriatrics Society, the risk of Alzheimer’s doubles for veterans with post-traumatic stress disorder (PTSD). The VA estimates that thirty percent of Vietnam veterans suffer from post-traumatic stress. This is four times the rate of the general U.S. population. More than one-third of our Iraq veterans suffer from PTSD or depression. PTSD and depression are also associated with suicidal ideation and the rising rate of suicide among veterans.

Symptoms of PTSD may include:

Unwanted and repeated memories of the life-threatening event;

Flashbacks where the event is relived and person temporarily loses touch with reality;

Avoidance of people, places, sights, or sounds that are reminders;

Feelings of detachment from people, even family, and emotional numbness.

  • Traumatic Brain Injury

Traumatic brain injury (TBI) also increases the risk of dementia. TBI is a nondegenerative, noncongenital insult to the brain from an external mechanical force, possibly leading to permanent or temporary impairment of cognitive, physical, and psychosocial functions, with an associated diminished or altered state of consciousness. Veterans with TBI are sixty percent more likely to develop dementia than other veterans, according to a 2014 study by the American Academy of Neurology.

Because of the prominent use of improvised explosive devices, blast exposure has been the most common cause of TBI. Iraq and Afghanistan veterans are at a higher risk to develop Alzheimer’s because they have sustained more brain injuries. If you were to count all combat wounds veterans suffered in the Iraq and Afghanistan conflicts, twenty-two percent were brain injuries. This is nearly double the brain injuries sustained by US soldiers during the Vietnam War.

There are physical, emotional-behavioral, and cognitive symptoms that are common consequences of TBI. Here are some of the symptoms:

Physical:  fatigue, headaches, difficulty with speech, decreased muscle movement, and disruptions to sensory symptoms.

Emotional-behavioral:  depression, irritability, anxiety, disturbed sleep, impulsivity.

Cognitive:  word-finding problems, difficulty multi-tasking, difficulty remembering and concentrating.

  • Blast-induced Neurotrauma

The use of body armor is allowing soldiers to survive blasts that would otherwise be fatal. Blast-induced traumatic brain injury (bTBI) is a major medical concern and has been called the “signature wound” of the Afghanistan and Iraq wars. During the Iraq conflict, nearly half of the soldiers who were injured experienced blast exposure resulting in neurotrauma.1

According to a variety of scientific studies, high rates of blast injuries and blast-induced neurotrauma are associated with irreversible, chronic brain tissue damage, including neurodegeneration, long-term neurological deficits, and memory loss.

  • Successive Concussion Syndrome

The post-concussion syndrome (PCS), a common sequel of traumatic brain injury (TBI), is a symptom complex comprising of headache, sleep disturbance, neuropsychiatric symptoms, and cognitive impairment.

Mayo Clinic defines post-concussion syndrome as “a complex disorder in which various symptoms, such as headaches and dizziness, last for weeks and sometimes months after the injury that caused the concussion. Concussion is a mild traumatic brain injury that usually happens after a blow to the head. It can also occur with violent shaking and movement of the head or body. You don’t have to lose consciousness to get a concussion or post-concussion syndrome. In fact, the risk of post-concussion syndrome doesn’t appear to be associated with the severity of the initial injury.”

Barriers to Effective Diagnosis, Treatment and Care

A timely and early diagnosis of Alzheimer’s is critical to care. Veterans may face several barriers to getting effective care. These include: a complex VA health system; a lack of understanding of available benefits; and a stigma related to brain and mental health problems.

Dr. Sandra Bond Chapman, Founder and Chief Director, Center for Brain Health at the University of Texas at Dallas, notes: “Stigma about the brain keeps them (veterans) from seeking the help they need causing the problems to worsen over time. We must get ahead of the growing risk of Alzheimer’s for the increasing number of veterans who served our country.”

Alzheimer’s disease can not only take a devastating toll on veterans, but also on family members who provide their care. Social isolation and depression are possible negative effects of caregiving, but support is available.


Nov 4 veteran-1807121_640

A New National Network

The advocacy group, USAgainst Alzheimer’s, recently launched a new network called “Veterans Against Alzheimer’s” to specifically spotlight the challenges faced by veterans and their families. It will focus on raising awareness, and advocating for increased resources, programs and funding for needed research. This group also hopes to increase veteran participation in clinical trials. They are working in collaboration with the VA, Veterans of Foreign Wars, and the Department of Defense funded Chronic Effects of Neurotrauma Consortium.

Help Is Available

If your loved one is a veteran experiencing difficulties concentrating, has recurring headaches, or any of the symptoms described above, make an appointment to see a primary care provider who can then recommend a neurologist for more in depth diagnosis if needed.

Caregivers play an important role in the health and well-being of veterans. The VA offers a free six-week online workshop, “Building Better Caregivers.” Check out the other resources available at the VA website: https://www.caregiver.va.gov/. The Veterans Crisis Line phone number is 1-800-273-8255.

Additional Resources

The U.S. Department of Veteran Affairs has information on their website regarding Alzheimer’s and dementia care: https://www.va.gov/geriatrics/alzheimers_and_dementia_care.asp.

For more information and to become involved in Veterans Against Alzheimer’s, go to their website: http://www.usagainstalzheimers.org/veterans-network.

Brainline.org is a website that focuses on brain injuries and TBI. It has a section devoted to veterans and their caregivers: https://www.brainline.org/military-veterans. The website also has a resource directory where you can find help near where you live: https://www.brainline.org/military-resource-directory.

The ancient Greek physician Hippocrates is said to have remarked in 400 BC: “No head injury is too severe to despair of, nor too trivial to ignore.” As we approach the observance of Veterans Day, November 11, let us all join to help fight and win the battle against Alzheimer’s. We owe it to our veterans!

I wish you peace, love, compassion and joy in your caregiving today and every day!

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To read the brief, “Veterans and Alzheimer’s: Meeting the Crisis Head On,” published by Veterans Against Alzheimer’s, October 3, 2017, go to: http://www.usagainstalzheimers.org/sites/default/files/USA2_Veterans%20Issue%20Brief_October%2010%202017%20%282%29.pdf.

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Dr. David Cifu discusses brain trauma in this brief YouTube video: https://youtu.be/pXjmX1WKxRI.

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Patients are an integral part of the interdisciplinary polytrauma team at the Washington, D.C., VA Medical Center: https://youtu.be/PPD3KLc-q08.

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An Army veteran discusses his symptoms and treatment of PTSD and TBI in this brief YouTube video: https://youtu.be/mEVA0T7QR1E.

 

Will We Get Alzheimer’s Disease? Maybe/Maybe Not!

Alzheimer’s is the second most-feared illness in the USA, following cancer. Studies suggest that our short-term memory peaks at age 25 and begins to decline at age 35. By age 65, approximately one person in seven experiences changes in their brain that may ultimately lead to the symptoms of Alzheimer’s disease (AD) or some other form of dementia. At age 72, one person in three experiences measurable cognitive loss. At 85, up to half of us will be living with some form of dementia.  Oct 14 DNA Strand 1

This data is frightening!! In a few weeks I will turn 71. So far, (knock on wood and thank my lucky stars?) I am not experiencing measurable cognitive loss – YET! My Mom was diagnosed at age 82 with mixed dementia: late-onset AD and vascular dementia. So will my siblings and I develop this disease, too? I ask myself that question from time to time. I have tried to do the things that research indicates to keep my body healthy and my mind active. Here is what I have discovered that gives me some comfort, and I hope also answers my siblings’ concerns.

Scientists are still trying to determine the underlying causes of Alzheimer’s disease. It is a complex and complicated illness. However, it basically comes down to a combination of genetic and environmental factors, and lifestyle choices. Of course it is entirely possible to do everything “right” and still develop dementia, but there is growing evidence that lifestyle choices can make a difference in many cases.

There is hope on the near horizon for identifying and treating the underlying causes of AD. Dale E. Bredesen, MD, who, with his colleagues, has conducted years of cutting edge research and identified new, previously unrecognized causes of AD. More about that later in this article.

Hereditary Genetic Mutation

It has been consistently reported that there are two types of AD: 1) early-onset AD which is rare, affecting people age 60 and younger (less than 5 % of AD cases); and 2) late-onset AD that develops in persons over the age of 60. Researchers have identified two categories of genes that influence whether a person will develop the disease: deterministic genes and risk genes. Deterministic genes directly cause early-onset AD.

One type of early-onset AD is known as familial AD (FAD), also called autosomal dominant AD (ADAD). This type affects less than 1% of all persons with AD. It is unusual because it is caused by a hereditary genetic mutation to one of three deterministic genes: PSEN1, PSEN2, or APP. Mutations are located on one of three chromosomes: 21, 14, and 1.

According to Banner Alzheimer’s Institute, “If a child whose birth mother or birth father carries a genetic mutation of one of these three genes, then the child has a 50% chance of inheriting that mutation from the affected parent.” If they do inherit that mutation, then the chance of them developing AD is nearly 100% certain. The genetic mutation is usually passed down from generation to generation.

APOE Gene and Late-onset AD

Geneticists have identified genes associated with an increased risk of developing AD, but the apolipoprotein E (APOE) gene is the best known risk factor for developing late-onset AD. However, carrying the gene does NOT necessarily mean that the person will develop AD.

Oct 2 DNA Strand 2The APOE gene comes in three forms: e2, e3, and e4. Each of us inherits an APOE gene from our birth mother and an APOE gene from our birth father. This makes for six different combinations. It is when the person inherits the e4/APOE gene from both father and mother that the likelihood of that person developing late-onset AD by age 85 is 30-55%. Persons with e3/e3APOE genotype have a 10-15% risk of developing AD by age 85. Individuals with e3/e4 APOE genotype are at a 20-25% risk of developing mild cognitive impairment or AD by age 85.  The e2/APOE genotype is rare and there is not a lot of information about the risk with this form.

It is important to note that just because an individual has 1 or 2 copies of the e4/APOE gene does NOT mean that they will necessarily develop AD. Likewise, just because a person does not have a copy of the e4/APOE gene, does NOT mean they will NOT develop Alzheimer’s.

Risk Factors Besides Genes

In my research, I have surmised that everyone who has a brain is at risk for developing the disease as they age, whether or not they carry a genetic predisposition. Age is the number one risk. Race is another. Latinos and African Americans are 1½ to 2 times more likely to develop AD than Caucasians. However, there are environmental and health lifestyle factors that can increase or decrease one’s risk.

Factors that MAY decrease risk: 1) no family history of dementia; 2) a high level of education; 3) good cardiovascular health; 4) being male.

Factors that MAY increase risk: 1) a family history of dementia; 2) a low education level; 3) cardiovascular disease and conditions such as high blood pressure and Type 2 diabetes; 4) being female; 5) obesity; 6) depression; 7) smoking; 8) a severe head injury or repeated head trauma.

The Reversal of Cognitive Decline May Be at Hand

Every day, researchers are learning more about our amazing brains and what factors contribute to the risk of developing this dreaded disease. One neuroscientist and neurologist, Dale E. Bredesen, MD, offers real hope to anyone looking to prevent and even reverse Alzheimer’s Disease and cognitive decline. Dr. Bredesen seems to have proof that AD is not one disease, as it is currently treated, but several different diseases, and each has a different optimal treatment. His new book, The End of Alzheimer’s, The First Program to Prevent and Reverse the Cognitive Decline of Dementia, outlines 36 metabolic factors (eg., certain micronutrients, hormone levels, sleep) that can trigger “downsizing” in the brain. Bredesen’s protocol rebalances these factors using lifestyle modifications, like taking B12, eliminating gluten, or improving oral hygiene.

After decades of research, the results have been so impressive that Dr. Bredesen published his extensive study and the results on ten patients in 2016 in the journal Aging (June, Vol. 8, No. 6). The therapeutic approach/protocol used was dubbed metabolic enhancement for neurodegeneration (MEND). Patients who had to discontinue working, were now able to return to work. Those patients struggling at work were able to improve their performance. Of the first ten patients on the protocol, nine displayed significant improvement with 3-6 months. Since that time, the protocol has yielded similar results in over a thousand patients now.

Dr. Bredesen’s protocol brings new hope to a broad audience of patients, caregivers, physicians, and treatment centers. His book provides a fascinating look inside the science, as well as a complete step-by-step plan that fundamentally changes how we treat and even think about AD. I have ordered the book and will share some of the insights I glean in upcoming blog articles.

Everyone is at risk of developing AD, even without a family history, and if you are at risk to develop AD from genetics and family history, as in my case, there are still many things that we can do to decrease our risks. Here are several recommendations mainly in the areas of lifestyle and health choices that will help you take control and take charge:

  • Eat a healthy diet;
  • Maintain a healthy weight;
  • Exercise regularly;
  • Don’t drink too much alcohol;
  • Stop smoking (if you smoke);
  • Get adequate sleep;
  • Be conscious about safety by regularly using seat belts;
  • Make sure to keep your blood pressure at a healthy level.

We can choose lifestyles that accelerate brain vitality rather than those that promote brain atrophy and dementia. What are we waiting for? It’s never too late to start!

I wish you peace, patience, compassion and joy in your caregiving today and every day!

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Disclaimer: This article is strictly an informational one. It is not meant to provide medical advice, diagnosis, or treatment. It is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of a qualified health professional.

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You can watch an interview with neurologist David Perlmutter, MD, discussing with Dr. Dale Bredesen the breakthroughs that this pioneer in Alzheimer’s research has documented in treating and reversing Alzheimer’s in 1,000 patients: https://www.drperlmutter.com/the-empowering-neurologist-david-perlmutter-md-and-dr-dale-bredesen/.

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The Alzheimer’s Association offers a 14-minute video, “Genetics in Alzheimer’s,” by John Hardy, Ph.D., of the National Institute on Aging, and Gerard Shellenberg, Ph.D., University of Pennsylvania. They discuss how genes cause disease, the difference between deterministic and risk genes, and which genes of each type are implicated in early-onset and late-onset Alzheimer’s: https://www.alz.org/research/video/alzheimers_videos_and_media_genetics.asp.

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“Early-onset AD and Genetics” is a video that offers a profile of the DeMoe family, in which five of six siblings carry one of the rare genetic mutations that cause inherited, early-onset Alzheimer’s disease. The family is partnering with doctors at the University of Pittsburgh to understand the course of early-onset Alzheimer’s. Watch the video here: https://www.alz.org/research/video/alzheimers_videos_and_media_early.asp.

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The video, “Late-onset AD and Genetics,” profiles the Nanney-Felts family, in which all seven siblings in the mother’s generation had late-onset Alzheimer’s disease. The family is working with Columbia University’s Richard Mayeux, M.D., to help understand the complicated genetics of late-onset Alzheimer’s. Go here to watch it: https://www.alz.org/research/video/alzheimers_videos_and_media_late.asp

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AARP published an article by Elizabeth Agnvall, March 1, 2011, titled, “Mother’s Alzheimer’s Increases Your Risk.” Agnvall  reports on a study that was published at that time in the journal Neurology. To read the article, go here: http://www.aarp.org/health/brain-health/info-02-2011/health-discovery-mothers-alzheimers-increases-your-risk.html.

Music and a Memorial Tribute to Our Dad

Music can elevate mood, promote relaxation, reduce anxiety, depression, and agitation. Music therapy, including singing, dancing, playing an instrument, or even clapping or tapping rhythmically, has been used in the field of dementia care for many years.  Oct. 7 Violin

October 2 marked our beloved father’s fourteenth death anniversary. When I reminisce about him, I think Dad would want us to remember him for his devoted love of family, his gentle love of people, and his love of music. Dad did not have dementia, but he was a devoted caregiver for our Mom who was diagnosed in her early 80’s with Alzheimer’s and vascular dementia.

Music was the soundtrack of Dad’s life. He was a musician and a singer. As a young man in his twenties, he played violin and entertained at a local radio program as a member of a trio with his two brothers, Ed, the pianist, and Henry, the cellist.

It was music that brought our parents-to-be together. Dad met our mother at the Polish Hall in Lansing, MI while performing there. I can imagine them getting to know each other, and enjoying dancing to polkas and the other popular dances of their day. They married just before Dad was sent overseas to the front to head up a trucking division supplying the Army troops during World War II. While Dad was still stateside at Ft. Leonard Wood, he was a member of an all-soldier cast that produced a musical comedy, “Ready on the Firing Line!” This production was a fundraiser for the Army’s emergency relief fund.

When the war ended, Dad returned to the USA and settled in to raise a family. Music filled our home. My siblings and I were “encouraged” to take up a musical instrument as youngsters. Four of us chose to learn to play the piano, while my youngest brother played the drums. For twenty-five years, Dad and Mom were the choir director and organist at our local parish.

When they retired to Florida, they organized a choral group, the Choraliers, at their local Village Green retirement community. Dad directed the chorus while Mom accompanied on the piano. For about fourteen years, the Choraliers entertained residents, as well as patients in the local hospital and nursing homes.

Dad prepares to direct the Choraliers. Mom is the accompanist.

Dad prepares to direct the Choraliers. Mom is the accompanist.

We are rhythmic beings by nature and are “wired” to respond to music. Music engages the part of the brain called the hippocampus, the area that stores long-term memories, and the part of the brain that isn’t affected in the early or middle stages of Alzheimer’s. Research is currently being conducted on how music can improve the mood in those affected with dementia, even in the late stages of the disease.

You don’t have to be a music therapist or have an extensive background in musicology to make music an essential element in the quality of life for your loved one. Here are a few tips to spark joy through music:

  • Pick styles of music your loved one enjoys.

Research indicates that music that was familiar and popular at the time musical memories develop (between the ages of eight and twenty) resonates with persons with dementia and produces favorable outcomes. Do they have favorite musicians or singers, favorite songs, or favorite styles of music (classical, operatic, country western, rock and roll, hymns, etc.)?

  • Think about how the tempo, speed, and rhythm of the music can affect your loved one.

If you want them to become more relaxed, select music that is calming with a slow beat. If you want them to feel upbeat, select a lively song.

  • Observe how your loved one responds to the song or the particular kind of music.

Every person resonates with different music and song preferences. A song might trigger painful memories or emotions. If they appear agitated, it may be that they don’t want to listen to music at that moment but can’t let you know this. Soft classical music, lullabies, or non-rhythmic instrumental background music can reduce agitation and anxiety during periods of sundowning.

  • Pay attention to volume.

Music must be loud enough for your loved one to hear it, but not so loud that it’s uncomfortable. Persons with hearing loss or using hearing aids often have trouble hearing music in the higher ranges. Pick music that is in a lower range and has a strong beat.

  • Make connections with music.

Music can bring you and your loved one closer together. Use music as a tool to get to know them better. Music can trigger feelings and memories that aren’t expressed at other times. Use photographs and pictures along with the music to help bring back memories of good times and persons in their lives that will allow them to share their pleasant experiences.

  • Sing along or dance with your loved one.

You can usually search for lyrics on Google or YouTube music. A 2014 study in the Journal of Music Therapy specifically looked at the impact of singing familiar songs. It found that they could elicit memories, spontaneous conversation, and generally positive feelings of belonging and accomplishment.

I’m so grateful that my musical parents provided a foundation and exposed me to a variety of musical experiences that have enriched my life. I can just imagine Dad in heaven directing a choir of angels in a joyous rendition of George Frideric Handel’s “Hallelujah Chorus!”

I wish you peace, patience, compassion, and joy in your caregiving today and every day!

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My blog article of April 9, 2016, also focused on the benefits of music. To read “Orange for the Ear, Tonic for the Soul,” click here: http://caregiverfamilies.com/category/music-and-alzheimers/.

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Ted McDermott, 80 years old, has dementia and loves to sing. His son taped him singing carpool karaoke, and put those tapes on YouTube. A producer from Decca Records heard Ted singing and offered him a record contract. Check out the story here: https://www.youtube.com/watch?v=qT22tFsPPUA.

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Wikipedia maintains a list of top American pop songs from 1940 to 2016:  https://en.wikipedia.org/wiki/List_of_Billboard_number-one_singles.

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Mary Sue Wilkinson, a music therapist, began a website, www.singingheartotheart.com, that shares how music can enliven lives. You can download her free e-resource, “Finding Memories through Music – A Family Interview,” by going to: https://www.singinghearttoheart.com/home.

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I came across an a cappella vocal interpretation of Edward Elgar’s, “Nimrod: Lux Aeterna,” sung by the British group VOCES8. It is a moving rendition that I think my father would have loved. May he rest in eternal light and peace. You can listen here: http://www.cmuse.org/elgars-nimrod-vocal-performance-will-make-you-so-emotional/.

The Brain Autopsy Option

In 2000, when neurologists at the local Memory Disorder Clinic diagnosed our mother with the “probability” of Alzheimer’s (AD) and vascular dementia, we were told that the only definitive way to confirm that diagnosis was to have an autopsy done on her brain. While the diagnosis of AD is about 90% accurate, it can only be positively confirmed through a brain autopsy.  Sept 18 brain blueA brain autopsy is the study of tissue removed from the brain after death. No other body organs are autopsied unless specifically requested. Shortly after Mom’s death in 2006, my siblings and I discussed this option. We all agreed to proceed as we wanted a confirmation of the diagnosis one way or the other.

A brain autopsy will not complicate the family’s plans for a funeral, cremation, or burial and will not interfere with a family’s ability to have a viewing. The funeral home we chose for Mom’s funeral arrangements helped us a great deal. The funeral director gave me the name and contact information of a local pathologist, now deceased, who had a laboratory to conduct the autopsy. The pathologist needed to have access to mom’s body at the mortuary within a few days from her passing, before the embalming would take place.

The Autopsy Procedure

The autopsy was scheduled for July 3, three days following Mom’s death. The pathologist removed her brain through an incision at the back of her head just behind and above the ears. Her face was left untouched and there was no apparent disfigurement. The procedure involved sending ten slices of sections of Mom’s cerebral cortex (8) and cerebellum (2), along with the pathologist’s findings to the Armed Forces Institute of Neuropathology in Washington, D.C. for its evaluation and second opinion. I signed the necessary papers and paid the fee. I read recently that some private pathologists, medical centers and funeral homes charge between $1,000 – $1,500 for harvesting, transporting and examining the tissue. If the autopsy is done within a research study, typically the family will not be charged.

Within ten days, the pathologist called to tell me he had received the report from the Institute’s lab, and would send a final written report for the family. He discussed by phone, that both he and the Institute’s lab staff found evidence that Mom did indeed have Alzheimer’s.

This is what the final report indicated:

1)  Her brain weighed 1150 grams, or about 2.53 lbs. The average healthy female brain weighs about 3 lbs.

2)  There were no tumors, and no sign of Lewy bodies which might indicate Parkinson’s disease.

3)  The cerebral cortex areas showed frequent neuritic plaques.

4)  Neurofibrillary tangles were noted.

5)  The blood vessels showed atherosclerosis. This condition is a hardening and narrowing of the arteries in which plaque builds up inside the artery walls. However, the arteries at the base of Mom’s skull showed no atherosclerosis.

The accumulation of amyloid plaques and tau tangles are abnormal protein deposits. Research investigators still cannot confirm just how much these deposits contribute to Alzheimer’s disease. However, their presence is a sign of Alzheimer’s.

According to criteria published by CERAD, the Consortium to Establish a Registry for Alzheimer’s Disease, Mom’s brain samples indicated an age-adjusted plaque score of “C,” a diagnosis of definite Alzheimer disease, which in all likelihood manifested itself eight years prior to Mom’s death. Mom’s diagnosis was six years prior to her death at age 88.

A Family Decision

My siblings and I were in agreement to have a confirmed diagnosis through a brain autopsy. It gave us a sense of closure. It was an important part of the grieving process. Having this information now will also help our families to be on the lookout to determine the likelihood of Alzheimer’s, in case family members begin to exhibit early signs of the disease in the future. Other than advanced age, having a family history of Alzheimer disease is the biggest risk factor for developing this disease.

Religious and Cultural Considerations

According to the Alzheimer’s Society of Ottawa and Renfrew County, “In some religions or cultures, the body must be “whole” when buried. Families can request that the brain be returned to the body for burial purposes. In this case, only small specimens will be retained for processing and future diagnosis. This is not the optimal method for diagnosing Alzheimer’s disease, and the final diagnosis may not be as definitive, but it offers the opportunity for those with religious considerations to obtain a post-mortem diagnosis.”

Steps to Take

  1. The Need to Plan Early

Timing is a critical factor for a brain autopsy to be conducted, ideally within six to forty-eight hours after death. Therefore, begin the discussion    with your family members early on when it has been determined that your loved one has dementia. Explore their questions and wishes. Your neurologist may be able to help you determine the procedures needed and where the autopsy would be conducted.

  1. Persons Authorized to Give Consent
  • The individual if mentally competent (verbal consent requires two witnesses);
  • The legal next of kin in this order of priority: 1) The spouse; 2) If no spouse, any adult child (16 years or older); 3) Parent; 4) If no spouse, adult child, or parent, any adult sibling (16 years or older); 5) If no spouse, adult child, or adult sibling, any other next of kin (16 years or older) such as grandchild, nephew/niece, uncle/aunt;
  • If no available next of kin, the person lawfully in possession of the body for burial and who is knowledgeable of the person’s preferences and values;
  • The coroner.

    3.  Pre-arrangement and Legal Authorization Is Required

All states require a signed authorization, so there will be forms to complete and signatures required. Enroll in a program through a brain bank, university, medical school or hospital where research is conducted. This makes the process easier.  Specific advice will also be given on how to make final arrangements. The registration process can take approximately six to eight weeks or longer.

A brain autopsy is often done in conjunction with donation of the brain for scientific research. As mentioned earlier, if an autopsy is done within a research study, there may be the possibility that the autopsy would be done at no cost to the family.

Copies of the authorization forms should be given to all medical professionals who care for your loved one to keep on file. A nursing home, assisted living facility or hospice program will also need a copy if your loved one resides there.

  1. Coordinate with a Funeral Home

Select a funeral home to initiate discussion and plans for the autopsy. Since it is important that a brain autopsy be done shortly after death and before embalming procedures begin, the funeral home will need to carry out your family’s wishes in this regard. They will also likely need a copy of the authorization to keep on file. At the time when the death of your loved one takes place, the funeral director will likely ask for a verbal confirmation before proceeding.

  1. Final Report

Families can expect to receive a final report within a reasonable amount of time.

A Gift to Medical Research

A brain autopsy is one of the best ways of knowing what goes on in the brain. A brain autopsy is the only definitive way to diagnose the forms of dementia: Alzheimer’s, Lewy body dementia, and frontotemporal degeneration (FTD).

Families may not only choose to have a brain autopsy, but also decide to donate the brain for medical research. A brain donation is the ultimate gift. It will not provide information about family members’ risk of developing the disease, but it will assist researchers who seek answers to the many questions regarding Alzheimer’s disease and other age related diseases of dementia find a cure. We can only hope that answers and a cure to combating these diseases of dementia come soon!

I wish you peace, patience, joy, and compassion in your caregiving today and every day!

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 A segment of the above article was taken from Chapter 18 of my memoir, Elegy for Mom, A Memoir of Family Caregiving, Alzheimer’s, and Devotion. The book is available for sale through this website.

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The Alzheimer’s Association Autopsy Assistance Network has a good handout that answers questions about brain autopsies. You can check it out here: http://www.alz.org/alzwa/documents/alzwa_resource_eol_the_alzheimers_asso_autopsy_assistance_network.pdf.

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Here is a five-minute video, courtesy of the Manchester Brain Bank, showing a brain dissection and the difference in how a normal brain looks compared to a brain of a person with Alzheimer’s: https://youtu.be/cqmZFoGvzfU.

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The Association for Frontotemporal Degeneration has helpful information about brain autopsies on their website: http://www.theaftd.org/life-with-ftd/participate-in-research/autopsy.

Detecting Pain in Persons Living with Dementia

It was a scream that I’ll never forget! My mother had dislocated her shoulder, or so it appeared. Mom was probably in the mid-stages of her dementia at that time. I could see that she was physically in pain, but not so much that it seemed unbearable. I quickly made an appointment to take her to my orthopedic doctor for a diagnosis and treatment. Fortunately, he could see her early the next day. At the doctor’s office an attendant took x-rays. Then the orthopedist examined her. He said that he could make an adjustment to put her shoulder back in place. He asked me to step out of the exam room and return to the waiting area, and it would take only a few minutes. I was sitting in the waiting room when I heard this “blood-curdling” scream. I rose quickly to check what was happening. The doctor came out of the exam room with Mom and said that she would be okay. The pain stopped once her shoulder joint was back into place. Mom seemed to be all right after that, thank goodness!  Sept 9 Man in pain

What Is Pain? 

The International Association for the Study of Pain (IASP) defines pain as “an unpleasant sensory and emotional experience associated with actual or potential tissue damage.” We feel pain when a signal is sent through nerve fibers to the brain for interpretation. Pain, however, is not just a physical sensation. It can affect a person’s emotional and mental wellbeing and quality of life.

Pain can be a serious problem for the elderly. They often suffer from problems such as: osteoarthritis, dental pain, mouth ulcers from poorly fitting dentures, hemorrhoids, constipation, fibromyalgia, diabetic postherpetic neuralgia, urinary tract infections. When combined with dementia, it can be difficult to locate the source of the pain, especially if the person is at the stage in the dementia where they are unable to communicate that they hurt or are feeling ill.

It is a myth that people with dementia do not feel pain. In fact, it is estimated that 50% of persons with dementia suffer chronic pain that goes undetected. I’ve also read statistics reporting that about 80% of persons living in long term care facilities have pain.

According to one of our local neurologists, Dr. Hilary P. Glazer, “Pain is often a big part of any stage of Parkinson’s type of Dementia (Lewy Body, Corticobasal, Progressive Supranuclear Palsy, Parkinson’s Dementia) because of their stiff body and not moving. Pain is also often a big part of late-stage dementia, as people are often sitting or lying in bed most of the day. Inactivity often leads to pain.”

Determining if your loved one is experiencing pain may be up to you. This takes becoming a bit of a “detective” and observing the signs. When they can’t self-report, observation and detection of pain-related behavior is a valuable approach to identifying pain. I am not a medical professional, but I hope that these tips I’ve garnered from a number of resources (American Geriatrics Society,  Australian Pain Society, and the University of Alberta) can help you to identify if your loved one is suffering.

Sept 9 Woman in painWays to Recognize Pain

Pain is a subjective experience. Your loved one may not remember that they have done something to cause pain. You have observed that something is wrong. Where do you begin? Here are some clues that something is wrong.

  • Their Past Reactions

Your knowledge of their typical reactions is very important. You can begin by asking yourself how did they react in the past when they were in pain? Did they hold or rub their arm or head? Did they pace, find it difficult to settle, become angry or swear? Do they seem depressed?

Constant pain can be the cause of the depression. Are they fearful of you touching a particular part of their body? Are they running a temperature? Do they have a history of migraines, mouth ulcers, urinary tract infections, etc.?

  • Three Simple Pain Questions to Ask

Your loved one may only be able to tell you that they are in pain at the moment you ask them, but can’t give you details about when it occurs, or how severe it is. You may want to point to areas of your body and ask simple questions that they can answer “yes” or “no.” Here are three suggestions of questions to ask:

Do you have any aches or pains today?

Can you tell me about your pain, aches, discomfort, soreness?

Would you say your pain was mild, moderate, or severe?

  • Facial Expressions

These are some common facial expressions that could indicate the person is in pain:

Frowning, grimacing, wrinkled forehead, rapid blinking, scowling, clenched teeth, frightened look, tears, closed/tightened eyes, any distorted expression.

  • Verbalization, Vocalization

Sighing, moaning, groaning, grunting, calling out, screaming, swearing, noisy breathing, being verbally abusive, asking for help, or being unusually quiet.

  • Body Movements

Rigid, tense body posture, guarding parts of their body, strange body positions when moving, fidgeting, increased pacing, rocking back and forth, changes in how they walk, legs/arms drawn up in a fetal position.

  • Changes in Daily Activities

Refusing care, becomes disruptive or combative, becomes withdrawn, becomes more aggressive, appetite changes, changes in rest periods, increased wandering, socially inappropriate behavior.

  • Changes in Mental Status

Deterioration in normal cognitive status, increased confusion, irritability or distress.

  • Physiological and Physical Changes  Sept 9 thermometer

Do they have bruising or skin tears? Are they running a temperature, perspiring, flushing? Do they have pallor?

 Keeping a Pain Log

Keep careful notes and record anything you do that seems to reduce or alleviate their pain behavior. Bring your log with you when you take your loved one for a diagnosis so that you can describe in detail how it seems their pain is experienced. Also note what, if anything, relieves the pain for them. Write down all medications and dosages they take. These notes can be helpful to a health care provider, especially if your loved one can’t describe it to them.

Assessment and Treatment 

If you discover what is causing their pain, do whatever you can to eliminate the source, if possible. Take action before their pain becomes unbearable by getting them to a doctor as soon as possible for an assessment. Assessment of pain may require a multifaceted and comprehensive assessment by medical professionals, sometimes involving extensive testing, x-rays, MRI’s, pain medication, etc.

When treating people with pain and dementia, Dr. Glazer indicates that in her practice they try to avoid opiates and sedatives: “The best interventions are often relaxation exercises, stretching, physical therapy, and non-drug interventions (such as joint injections).”

Let your loved one know that you are aware of their pain and are going to help them. Try to make them as comfortable as possible when they sit in a chair or lie in bed. You want to do all you can to ensure that they are as pain free as possible.

I wish you peace, patience, joy and compassion in your caregiving today and every day!

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The University of Iowa’s website, www.Geriatricpain.org, has sixteen “Fast Facts” sheets on a variety of types of pain. Check it out here: https://geriatricpain.org/caregivers-and-patients/fast-facts-and-pain-guidelines.

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MDCalc is a medical reference for clinical decision tools and content. Here is a pain tool you might find helpful: https://www.mdcalc.com/pain-assessment-advanced-dementia-scale-painad.

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The University of Alberta has a PAINAD Tool Questionnaire available to download: http://www.painanddementia.ualberta.ca/downloads/PAINAD%20and%20painlog.pdf.

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Watch this Alzheimer’s Medical Advisor YouTube video on pain and detecting pain: https://youtu.be/crU74KegLac. Then download a checklist of “Common Signs of Pain in Persons with Limited Ability to Communicate Using Words:” http://alzmed.unc.edu/images/uploads/general/pain-assessment-checklist.pdf.

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Dementia-care education specialist Teepa Snow demonstrates how to recognize pain in persons in late stage Alzheimer’s: https://youtu.be/9kSjHtHSJCw.

Tips for Relieving Travel Anxiety

Do you recall the 1950’s Chevrolet commercial sung by actor and singer Dinah Shore? I‘m dating myself, but I do. The ad began: “See the USA in your Chevrolet. America is asking you to call. Drive your Chevrolet through the USA. America’s the greatest land of all.” Yes, the ad romanticizes auto travel. Aug 19 car on mapBut what do you do as a caregiver if your loved one living with dementia is afraid to travel by car or becomes anxious at the thought of leaving home?

Caregivers often have to face a variety of such challenges. Travel, especially to new places can be exciting, but the novelty of unfamiliar places, interaction with strangers, and the disruption of daily patterns and routines may lead to confusion on the part of persons living with dementia. Confusion and disorientation cause distress that might result in potentially disruptive behaviors or even trigger wandering.

Please don’t misunderstand. Many people living with dementia find travel fun. This month I followed the recent excursion via Facebook of one of my favorite bloggers, Harry Urban. He and his family make plans annually to vacation in Colonial Williamsburg, VA. Harry looked forward to this trip and even made videos of it, posting clips on his Facebook page. You can see the sheer delight in his face as he strolls through this historical town! Harry was diagnosed with Alzheimer’s about thirteen years ago.

If you are planning to travel a long distance with your loved one, you may want to ask their doctor if they are at a stage where they can tolerate all the stresses of such a trip. The California Central Chapter of Alzheimer’s Association recommends, “As a rule of thumb, (persons in) stages six and seven are too advanced and vulnerable and should not travel. NO person with dementia should ever travel unaccompanied. There are too many decisions to make, directions to follow, unfamiliar surroundings to navigate.”

Hopefully the suggestions I offer here will be helpful and generic enough, whether you and your loved one will travel by car, taxi, bus, plane, ship, or train. Some of these tips are based on my own experiences traveling with my mother who had dementia.

Advance Preparation and Precautions

I can’t stress enough how important it is to plan all the possible details of any trip in advance. Anticipating the needs of your loved one, preparing them, and helping them stay calm and occupied while in transit, can go a long way in making for an enjoyable trip.

If you’ve noticed that your loved one gets anxious about the thought of even getting into a car, perhaps they were in an accident in the past or got lost while driving. Perhaps these memories resurface when they think about traveling. If it’s possible, at an opportune time, ask if they can help you understand what it is that they fear might happen? Is there something specific that brings them discomfort; e.g., the destination, the time of day, the length of the outing? If they can’t answer and don’t remember, don’t force the issue. Perhaps there is another family member who can recount an issue from the past.

Make sure your vehicle is in tip top shape if you are driving. Even a trip to the nearby doctor’s office could be ruined if your car runs out of gas, breaks down, or a tire goes flat. Keep an emergency kit in the trunk. Take comfort items along, like a neck pillow, favorite soft blanket, sweater, snacks, water, continence care items, extra set of clothes. For longer trips, don’t forget to take medications that they require. Keep in mind that persons with dementia are more sensitive to tiredness, discomfort, and hunger.

Aug 19 AirportIf you are flying, use a travel agent who can help you with details and notify the airlines about your situation. Minimize layovers and length of the trip. Reserve a wheelchair to help navigate going through TSA security screening and getting to the gate. Also note that beginning January 22, 2018, certain state ID cards will no longer be enough to board a domestic flight. You may need passports. The Alzheimer’s Association has a document devoted to travel safety, including travel by air. You can download it at the link below this article.

The Day of the Trip

Talk about the trip in an upbeat manner. If you use a “reminder” board, post the information and time on it so they don’t have to keep asking you where they’re going.  Aug 19 Note card

Give yourself enough time to prepare your loved one. Factor in time to use the bathroom, dress or change clothes, grab a snack, put on a sweater or coat. Feeling rushed may make you and them anxious and frustrated, especially if you think you’ll be running late for an appointment. The calmer you are, the better.

Immediate Preparation

Your loved one may be at the stage where they have forgotten how to get into the car. This can cause them anxiety. Try to let them do as much as they can for themselves while you guide them. (See below for the link to Teepa Snow’s video for helpful tips.)

Ensure that their seatbelt is securely fastened. Some organizations recommend that your loved one sit in the back passenger side seat for safety purposes while you drive and that you use the child safety door locks. Many also recommend that you bring along a travel companion. I think you need to be the best judge of this. You don’t, however, want to risk that they become frightened and try to get out by opening the car door while the vehicle is in motion. Pull over as soon as possible to a safe spot and try to calm them if they become agitated.

If your loved one becomes upset during the ride about where you’re going and why, simply accept what they say. Don’t argue. Appeasing them is in the best interest for safety sake. You might simply say that you are taking a different route because you want to avoid a traffic jam. Play soothing music on the radio or bring a favorite CD of theirs and encourage them to sing along.

Keep a Travel Journal

If you need to do a lot of travel with your loved one, keeping a travel journal to record details of both good and bad trips can be helpful. You will need, at times, to be creative and patient. Have a backup plan.

There may come a time when your loved one can no longer tolerate the stress of travel. Be sensitive to this. When this happens, sharing photos and videos of past trips may still bring them pleasure and joy. Happy trails!

I wish you peace, joy, patience, and compassion in your caregiving today and every day!

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To hear Dinah Shore singing the famous 1950’s Chevrolet ad song, just click here: https://youtu.be/iK43-ERSwwM.

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Here is the link for the Alzheimer’s Association sheet on travel safety: https://www.alz.org/national/documents/topicsheet_travelsafety.pdf.

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Marie Villeza, of ElderImpact.com, shared a wonderful resource with me. This article is from an auto dealer, Lagrange Country Dodge. I used it as a basis for my article. Thank you, Marie! To read it, go here: http://www.lagrangecountrydodge.com/blog/2017/april/4/the-caregiver-s-guide-to-car-travel-with-your-loved-one-with-alzheimer-s.htm.

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This nine-minute video by dementia-care education specialist, Teepa Snow, offers caregivers tips for helping their loved ones get in and out of a car: https://youtu.be/te4SW_0Af8k.

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Lori La Bey, radio host and founder of the “Alzheimer’s Speaks” website, has coordinated a special team for a one-of-a-kind “Cruise of Hope, November 11 -18, 2017. This Eastern Caribbean cruise leaves from the port of Ft. Lauderdale. It is designed for persons diagnosed with early to mid-dementia and their care partners. Cabins are booking quickly. For information, go to: https://alzheimersspeaks.com/cruise-with-us.

 

Malnutrition and Dementia

A popular adage goes, “We are what we eat.” A good diet is vital to everyone’s health and well-being. Cognitive function and nutrition are thought to have strong correlations. Aug 5 Scale

Ensuring that my mother was getting balanced nutritious meals and enough food to eat was a consistent worry of mine, even when she was residing in an assisted living facility. This effort was complicated because Mom also wore dentures. I had to replace them when we couldn’t find them. Eventually the new dentures also became lost.

In the later stage of the dementia, Mom became less able to chew. She was thin to begin with and was losing weight. Before I headed off to work on weekday mornings I tried to be at the facility to ensure Mom ate her breakfast. At the end of the day before going home after work, I re-visited to help feed her supper. The pureed food she was served not only looked unappetizing and unappealing, but tasted bland to me.

Dietary issues are influenced by diverse factors, from food availability and preparation, to appetite, to taste, to depression, to swallowing problems common in advanced dementia. These are only a few of the many difficulties that caregivers can face. Malnutrition may occur at any stage of dementia. It is important to detect it and try to remedy this as early as possible.

What is malnutrition?

Malnutrition is a lack of proper nutrition, caused by not having enough to eat or not eating enough of the right things. It can happen in people with dementia for a range of reasons including loss of appetite, forgetting to eat, or not being able to feed oneself. In some cases, the brain’s regulation of appetite and the person’s metabolism is actually disturbed because of the disease. Malnutrition comprises both overnutrition (excess food/calorie intake) and undernutrition (the depletion of body energy stores and loss of body mass.) Alzheimer’s International organization reported, “Undernutrition is particularly common among people with dementia in all world regions. It tends to be progressive, with weight loss often preceding the onset of dementia and then increasing in pace across the disease course.”

Practical Tips 

There are things you can try to help your loved one get sufficient daily nutrition. Here are some suggestions, based on the United Kingdom’s Alzheimer’s Society website.

  • Ask them to help you with meal preparation, if they are still able to do so. Help them maintain as much independence as possible. Involve them with various tasks such as washing vegetables, stirring the pot of soup, making a sandwich, setting the table, etc. Aug 5 kitchen-utensil-2462504_640
  • Serve five or six very small meals each day. A plate full of food can be overwhelming to them. Make food look and smell appealing. Use different tastes, colors, and smells.
  • Make mealtimes simple and relaxing. Ambience with soft music might help, but too much noise can be distracting.
  • Make sure dentures fit comfortably. Check for other dental problems such as sores in the mouth. These can be painful and interfere with their ability to eat.
  • Eat with your loved one, using mealtime as an opportunity for social stimulation. Describe and talk about the food that is being served.
  • Place the dish and a utensil about six inches back from the edge of the table so they are more likely to see them.
  • Set out only one utensil – either a fork or a spoon. You may have to cue them to start eating by spearing an item with the fork or placing the spoon under the food. aug 5 fork-1280701_640
  • If they have problems with coordination, and difficulty using cutlery, chop up the food into smaller pieces so they can use a spoon or their fingers.
  • Ensure that there is a visual contrast between the color of the food and the plate; e.g., rice pudding in a white bowl may be difficult to see.
  • Don’t assume that your loved one has finished their meal if they stop eating. They may just find it difficult to concentrate on the task. Gently encouraging them may allow them to finish the meal. You may have to prompt them by merely saying, “Eat your food,” or “Here are your favorite mashed potatoes and gravy.”
  • Don’t assume that when your loved one does not eat, that they do not want to eat. They may not be able to recognize food or be able to feed themselves any longer. Giving them a choice of food or using prompts and pictures of the food may help.
  • If your loved one is agitated or distressed, don’t put pressure on them to eat or drink. Wait until they have calmed down.
  • Provide nutritious snacks, such as fresh fruit, raw vegetables and cheese. Ensure that access to food and drinks are visible and available throughout the day so that they can eat and drink whenever they feel hungry or thirsty.
  • Difficulties in swallowing can lead to risk of aspiration. It is important that your loved one is alert, comfortable, and sitting up in a good position before feeding is attempted. The advice of an appropriate specialist (speech and language therapist, occupational or physiotherapist) may be needed.

Aug 5 soup-1706438_640Over time you may find that your loved one’s appetite declines or the taste of food doesn’t appeal to them. Sensory changes in sight and smell can impact their ability to enjoy food and mealtimes. Their likes and dislikes for food and drink may be quite dramatic and different from the ones they held for many years. They may also find it difficult to tell you what they want to eat. Try your best to determine what foods will deliver the most nutrients. If nothing seems to be working, consult a nutritionist for suggestions.

Should you give your loved one vitamins or dietary supplements? Check with their doctor before doing so. Some vitamins and supplements interfere with medicines your loved one may be taking.

If you are concerned about the nutrition needs of your loved one, the Nestle Nutrition Institute provides caregivers of elderly persons a tool called “The Self Mini-MNA.” This is a nutrition screening and assessment tool used to identify if persons 65 and above are malnourished or at risk of malnutrition. You complete the six questions and share the results with a doctor to help guide the discussion about your loved one’s nutrition needs. It is available in ten different languages and there is even a free app for use with an I-phone. (http://www.mna-elderly.com/mna_forms.html). I have not used this tool nor do I advocate that you do, but I wanted you to know that this is available so you can judge for yourself how helpful it will be regarding your situation.

I wish you peace, patience, and joy in your caregiving today and every day!

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The National Institute on Aging has a handout on healthy nutrition that you can download: https://www.nia.nih.gov/alzheimers/publication/healthy-eating.

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The Alzheimer’s Association website has detailed information regarding nutrition: https://www.alz.org/care/alzheimers-food-eating.asp#minimize.

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The Social Care Institute or Excellence (SCIE) has an article on “Activities for People with Dementia based around Food:” http://www.scie.org.uk/dementia/living-with-dementia/eating-well/activities-around-food.asp.

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In this brief video, Teepa Snow, noted dementia care trainer and advocate, describes visual processing problems that might affect persons with dementia getting proper nutrition: https://youtu.be/KGhPkV2roVc.

Re-Imagine Dementia

In his 1971 best-selling solo, “Imagine,” John Lennon encourages his listeners to imagine a world at peace without barriers, borders, or divisions. I attended the Dementia Action Alliance (DAA) Conference held in Atlanta June 25-27. The theme was “Re-Imagine Life with Dementia.” This motto set the tone for the workshops, interactive learning sessions, and special interest groups.

DAA Conference Button

DAA Conference Button

I was particularly moved by the Monday morning plenary panel discussion. The five panelists are active advocates and either Advisory Council Members or Board Members of the DAA. All are living with a diagnosis of some form of neurodegenerative disorder. They spoke from the heart about their day-to-day experiences. In the hope that it opens your mind and heart as it did mine, I’d like to share their answers and discussion to three of several main questions posed by the commentator, Dr. G. Allen Power.

Questions: How do you live with a chronic disability? What are your biggest challenges?

Brian LeBlanc, diagnosed with younger-onset Alzheimer’s in 2014, explained that there are many hurdles to overcome. There are zigs and zags in an hour, a day, a week as he often can’t remember how to do things. He asked the audience to picture themselves driving down a road and encountering a thick fog. You put on the brakes and creep through. Then you may go another five miles or so until you hit another fog bank. He goes through this on a daily basis, sometimes twenty or thirty times. There are days when the “fog” lasts all day.

Paulan Gordon, living with vascular dementia, noted that her loss was progressive. She went through the grieving process each time she was at a point of not being able to do some things any more, like driving, cooking, her hobby of reading novels. She felt isolated until she finally got to the point of acceptance. She found a sense of purpose as a mentor and a whole new world opened up for her.

Robert Bowles, a pharmacist for forty-two years, felt like “a convicted felon.” He came to the realization after his diagnosis of dementia with Lewy bodies (DLB) that he had two choices: to give up or to live. He decided to become a mentor for dementia cafes and encourage others. “My diagnosis simply gave me a different venue to do the things that I had tried to do all my life – to make a difference.”

Phyllis Fehr mentioned that she was a nurse. In 2010, at age 54, Phyllis received a diagnosis of mixed dementia in the form of early onset Alzheimer’s and Lewy body dementia in 2012. She had to grow to re-trust herself. She knew that she had to make a difference and so joined advocacy groups. The support of her family has made a big difference. Phyllis hopes that her grandchildren will educate their peers about the disease.

Susan Suchan has fronto-temporal disorder/primary progressive aphasia (FTD/PPA). She explained that it feels at times like she is walking in tar – as the tar gets thicker, communication becomes more problematic for her. She worries that others will not understand her.

Question: What was your experience when you received your diagnosis?

Brian reported that the doctor never looked at him or his wife. She asked, “Does he have Alzheimer’s?” The doctor paused and then said that Brian had early onset dementia. The couple sat there for two minutes crying before the doctor said, “I’ll be right back,” and left the room. When he came back to them, he gave Brian a prescription for Aricept and Namenda and told them to come back in three months. He didn’t have anything else to offer but a prescription. Brian was 54 at the time. (Younger-onset Alzheimer’s is also known as early onset Alzheimer’s.)

Phyllis knew something was wrong throughout three years of waiting and roadblocks. Then after testing, the neurologist looked at her husband and said, “She’s got Alzheimer’s, but is doing well. Come back when she can’t dress herself.” She eventually found a neurologist who was supportive and put her on a medication patch that helped her. Phyllis wants to educate doctors how to give a diagnosis.

Robert noted that one of his daughters diagnosed something was wrong with him two years’ prior to the “official” diagnosis of dementia with Lewy bodies (DLB). He went through eighteen months of hell and depression.  Robert told the audience that it is important to find a doctor who will listen to you about your symptoms and not rush to diagnosis. Like so many others with this disease, Robert received a number of incorrect diagnoses ranging from depression, to heart disease, to Parkinson’s disease before he finally heard the words “Lewy body dementia.” DLB symptoms are similar to those of Parkinson’s disease.

Susan knew something was wrong when she began experiencing balance problems and was frequently falling over. She realized she had to get help when she felt “trapped and lost” inside a shower stall. She consulted with a general practitioner who began tests. Susan was enthralled with the testing process, ruling out what she didn’t have. The audience laughed when she said she was fascinated that she didn’t have syphilis. However, she was anxious during the testing process for fear that they would tell her she was psychotic or schizophrenic. Her diagnosis came back as fronto-temporal dementia. A doctor told her that he was so sorry she had a pacemaker, that she would consequently live longer than she would want to.

Paulan reported that it was her daughter who documented her symptoms and took the list to a psychiatrist. This doctor diagnosed that Paulan was suffering from depression and anxiety. Following more extensive testing, the doctor handed her a fourteen-page report and coldly told her, “Here it is.” She wrote an e-book about her experiences. It is available on Amazon.

Each panelist spoke of the importance of finding meaning and purpose in their everyday life. They did not allow dementia to define who they are. In fact, for many of them, having dementia brought about a higher purpose. It was clear to me that all of them want to be seen as “whole” persons. In their own ways, they have learned to thrive. They look for opportunities to share their experiences with others in the hope that talking about dementia will change people’s misconceptions.

July 22Reimagining dementiaCan we re-imagine dementia? Robert Bowles can: “I dream of the time when there is no stigma about having dementia. I dream of better education and understanding about dementia for care partners. Individuals with dementia can still do lots of things. We need support to find our new purpose and develop strategies for living with our condition well.” (Taken from DAA’s website)

This is the challenge for our society– that a diagnosis of dementia not be a “death sentence.” It means inclusion and reasonable accommodations on the job for employees, in housing, and medical care. It requires advocacy and collaboration in our communities, our businesses, our churches, our neighborhoods. How can we re-imagine dementia in our own families and homes?

Here are core principles that the Dementia Action Alliance offers to get us started. These were posted by Deborah Shouse on DAA’s website:

Person-Centered Dementia Values and Principles

  • I am a person living with dementia. Spend time getting to know me and relating to me as a person with a unique background, life history, interests and capabilities.
  • Help me stay connected to what is important to me. Although aspects of my personhood may become increasingly hidden, I am still here.
  • A reciprocal relationship is important to me. Autonomy, choices, dignity, privacy, self-determination are fundamental to my well-being.
  • Support my holistic emotional, social, physical, cultural, sexual, and spiritual dimensions.
  • Promote my personal growth and development.  Help me continue to experience purpose, meaning, relationships and enjoyment in my daily life.
  • Partner with me, utilize my strengths, and provide the right amount of support and opportunities I need to achieve my goals.
  • Some dementia symptoms may interfere with my communication. I communicate the best I can; assume positive intent. Attempt to understand my needs and my reality. Please be compassionate.

I hope I’ve done justice to the personal stories that the five panel members willingly shared during the DAA conference. It is also my hope that, in the not too distant future, John Lennon’s lyrics will ring true throughout the world for those living with dementia and their care partners.

“You may say I’m a dreamer

But I’m not the only one.

I hope some day you’ll join us

And the world will live as one.”

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Check out the Dementia Action Alliance’s (DAA) website to find out what you can do to advocate for persons living with dementia by going to: http://daanow.org/what-you-can-do/.

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Listen to Susan Suchan, one of the panelists, share her dreams in this three minute YouTube video: https://www.youtube.com/watch?v=U5qWuHMi0Sg.

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Paulan Gordon describes her symptoms of vascular dementia in this five-minute “Dementia Mentors” video: https://vimeo.com/111343974.

To buy the Kindle version of Paulan Gordon’s book, Vascular Dementia, An Inside Perspective, go here: https://www.amazon.com/Vascular-Dementia-Inside-Perspective-Paulan-ebook/dp/B01CR8UIDG.

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I’m eager to hear your thoughts about how you “re-imagine” dementia. You can e-mail me at: Vicki@CaregiverFamilies.com. Thank you!