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!


When the Going Gets Tough – Tips for Caregiver Resiliency

There were times during the three years when I cared for my mother when I felt utterly helpless. July 8 dandelion-729693_640Most of those were times when I could see that she was suffering from an illness or was in pain recovering from a broken bone. I knew I had to remain strong for her.

Taking care of a loved one with dementia may be one of the most difficult challenges you encounter in life, especially as their health declines and they require more care. There will inevitably be setbacks and struggles along the way. Resilient caregivers let themselves become transformed by their experiences and develop strengths and abilities they didn’t know possible. I was one of them.

“Resilience is the process of successfully adapting to difficult or challenging life experiences. Resilient people overcome adversity, bounce back from setbacks, and can thrive under extreme, ongoing pressure without acting in dysfunctional or harmful ways,” writes Dr. Al Siebert, Ph.D., a researcher and author. He studied this topic for over fifty years. Dr. Siebert believed that everyone is born with a unique combination of inborn abilities to develop resiliency to handle life’s difficulties.

I’d like to share some of what I learned in the process of developing caregiver resiliency, together with insights drawn from research, especially from Dr. Siebert’s recommendations:

  • Find meaning, purpose, and value in difficult circumstances. Put aside the useless and debilitating “why me” thoughts. Instead, reflect on such useful questions as: “Is there anything good about this experience for me? How is this changing me?”
  •  Constantly learn from the experience. Wisdom and new strengths do not come from adversity itself, but from attempting to make sense of what one is going through. Ask yourself: “What is the lesson here? What can I learn from this?”
  • Accept and embrace what life has handed you. No one would wish this disease on their worst enemy. If you don’t truly want to be in the caregiving role doing what you are doing, you will more likely become psychologically drained and exhausted.
  • Maintain a playful, curious spirit. Enjoy things as children do. Experiment. Laugh. Be curious. Even though Alzheimer’s and other forms of dementia are no laughing matters, a dose of humor is good from time to time.
  • Adapt easily. Try to be as non-judgmental and emotionally flexible as possible. You can be both strong and gentle, sensitive and tough, logical and intuitive, serious and playful.
  • Try to maintain a strong positive self-concept, self-confidence, and solid self-esteem. This may be difficult when family members or friends feel you are not doing enough or criticize the care you provide.

    Photo by Fr. Tom Dynetius

    Photo by Fr. Tom Dynetius

  • Maintain good friendships, loving relationships. Lonely people are more vulnerable to distressing conditions. Find outlets and persons to share your feelings who will be supportive. If you don’t have family or friends to whom you can express your emotions, seek a professional counselor or group who can be your support.
  • Express feelings honestly. Optimistic individuals tend to have better health, are more stress resistant and persist longer. Learn to be aware of the cues that trigger a negative stress response. Choose to suppress feelings when you believe that is best to do. Release emotions like anger and frustration in a positive, creative way such as through art, music, journaling, etc.
  • Develop open-minded empathy. Try to see things through the perspectives of others. Ask: “What is it like to be them? What is legitimate about what they feel, say, and do?”
  • Question authority. Don’t be afraid to ask questions about medications or treatment plans. Keep the discussion and dialogue going with medical professionals and researchers in your community. You can be an advocate for your loved one, as you ask the questions they can’t ask anymore.
  • Develop a talent for serendipity. Convert a difficult situation that could be emotionally and physically toxic into a blessing in disguise.
  • Learn all you can about the disease and the stages that your loved one might endure. Poet and author Maya Angelou has a helpful hint in this regard: “Do the best you can until you know better. Then when you know better, do better.”

Resilient caregivers let themselves be transformed by their experiences. You have it in you to determine whether you will emerge from the caregiving experience exhausted and bitter, or strengthened and better for it.

For me, being a caregiver was a pathway to new levels of grace, courage, creativity, and love. As I write in my memoir, “Please share with others what you have learned, as that is the best way you support and lighten others’ burdens, and, in turn, feel connected to those in similar situations.” (Pages 112-113) Here is an affirmation to write out and put on your mirror to remind yourself daily: “Always remember, you are braver than you believe, stronger than you seem, smarter than you think, and twice as wonderful as you ever imagined.”

July 8 Resilience

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

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Take a look at this checklist designed by Dr. Siebert for professional caregivers and emergency care workers: http://www.survivorguidelines.org/articles/sieb15caregiver.html.

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The AARP Foundation has a nineteen-page document available to download. “Prepare to Care, A Planning Guide for Families,” provides a comprehensive planning tool so that you are prepared to take action when it is needed. To download it, go to: https://assets.aarp.org/www.aarp.org_/articles/foundation/aa66r2_care.pdf.

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The website, AgingCare.com, collected stories from caregivers that they shared in a recent post. I hope you get a good laugh to tickle your funny bone:  https://www.agingcare.com/Articles/Top-caregiver-stories-143989.htm.

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Ted McDermott has dementia but loves to sing and remembers the lyrics to every song her learned. His son found a way to bring Ted happiness and a sense of purpose by filming his father singing in the car. Click here to hear Ted sing, “Lonely Is the Man Without Love:” https://youtu.be/-zZAAY85JQg?list=RDYbw9Y6FCkF4.

Why Hydration Is So Important

Not getting enough fluids can become problematic, not only in the summer but all year round. Becoming slightly dehydrated can have an effect on mood, memory, and attention, according to research conducted at UK Swansea University. Dehydration can pose serious health problems for everyone, but especially for older adults and persons with dementia. 

As with all medical advice, please consult your physician for your individual situation. The information here is for educational purposes only.

What is dehydration?

Dehydration happens when your body does not have the amount of water or fluids it needs in order to carry out its normal functions. Fluids are lost when we breathe, sweat, urinate, have bowel movements, and vomit.

Water makes up about two-thirds of our bodies. It lubricates our joints and eyes, it facilitates proper digestion, it keeps our skin healthy. Water lessens the risk of constipation, as it helps move food waste through our intestines and ultimately out of our body. Dehydration may lead to loss of muscle tone, slow metabolism, increased toxicity, chronic constipation, and in extreme cases to organ failure. Inadequate fluid or water can also cause kidney stones, while adding stress to the kidney organ. Severe dehydration is a medical emergency and needs to be treated immediately.

Aging and dehydration

Aging causes people to lose their sense of thirst and their kidney function is often somewhat diminished. “From a physiological standpoint, as aging occurs, the water content of our bodies decreases,” says Kelly O’Connor, RD, LDN, CDE, of Mercy Medical Center in Baltimore. “Research indicates the total body water content of a 75- to 80-year-old person is nearly 50% less than a young person. For some reason not yet clear, the decline in water content is even greater in elderly women.” Certain medications, like diuretics, antihistamines, blood pressure drugs, antipsychotics and corticosteroids, as well as medical conditions can also affect the elderly’s ability to retain fluids.

According to BBC News, research indicates that one in five seniors is not getting enough water/fluids on a daily basis. This same research also notes that persons who are living with dementia are even more at risk. They have a six-fold increased risk of dehydration. They may forget to eat and drink, not know when they are thirsty, may not be able to get beverages by themselves, or may have swallowing difficulties in the advanced stages. Dehydration is also a factor in the occurrence of urinary tract infection (UTIs).

What are the signs of dehydration?

Signs of mild or moderate dehydration include:

  • Thirst
  • Dry or sticky mouth
  • Dizziness
  • Not peeing very much
  • Dark yellow urine
  • Dry, cool skin, headache,
  • Muscle cramps

Signs of severe dehydration that may require emergency treatment include:

  • Extreme thirst
  • Not urinating
  • Very dark or orange-colored urine
  • Very dry skin
  • Rapid heart rate
  • Drowsiness
  • Confusion or irritability
  • Delirium
  • Rapid breathing
  • Fainting or unconsciousness

Two quick tests to check for dehydration

The website, EverydayHealth.com, indicates that there are two simple ways to check for possible dehydration.

  1. Skin test. Use two fingers to grab a roll of skin on the back of your hand between where your watch sits and where your fingers start. Pull the skin up to about a half to one centimeter high. Then let the skin go. It should spring back to its normal position in less than a couple of seconds. If the skin bounces back slowly, it may be that you are dehydrated. (This test is not foolproof, however.)
  2. Checking urine color. If you are well-hydrated, your urine will be mostly clear with a tinge of yellow color. When your body is about 3% dehydrated, the color will be noticeably yellow. When your body is more than 5% dehydrated, urine will appear orange.

Prevention is key

June 17 cold-water-1431859_640The best way to prevent dehydration is to consume an adequate amount of fluids during the day. Studies have shown that elderly adults who drink five 8-ounce glasses of water per day experience lower rates of fatal coronary heart disease. If your loved one is taking medication that requires it to be taken with water, it is critical to do so.

Drinking water at room temperature is recommended for quicker absorption, but in the summer, your loved one may prefer a cool drink. Water flavored with citrus or other fruits, as well as sparkling water are options to try. Coffee and tea act as diuretics, so avoid drinking a lot of these. Avoid alcohol and caffeinated drinks if the person is dehydrated. If your loved one has difficulty swallowing, try pulpy orange juice or prune juice.

About 20% of our fluid intake comes the food we eat. Eating the following foods which have a high water content will help with fluid retention. Strive to include one or two of these at each meal:

  • Vegetables: tomatoes, cucumbers, zucchini, lettuce, celery, cooked asparagus, raw or cooked broccoli, spinach, carrots, red bell peppers
  • Fresh Fruits: watermelon, pineapple, cantaloupe, grapes, strawberries, honeydew melon, papaya, apples
  • Soups: chicken or beef consommé or broths

Tips to help keep your loved one hydrated

  • Create a schedule for daily intake of fluids.
  • If your loved one has limited coordination or dexterity, and struggles to drink from a cup, serve drinks in a two-handled cup with a sturdy base.
  • Provide a variety of choices of fluids in easy-to-drink glasses; e.g. fresh lemonade, Gatorade, water with citrus, herbal teas without caffeine.
  • Make a spritzer by pouring a half cup of club soda or seltzer water to a half cup of desired fruit juice. Stir in plenty of ice.
  • Leave “kid-size” water bottles near where they sit and at the bedside.
  • Offer small amounts of water with medication unless more is required to be taken with the particular medication.
  • Prepare Knox unflavored gelatin with orange juice for a “natural” jello.
  • Prepare popsicles with fruit juice for a summer treat.
  • Keep a small bottle of water in the car for sips while traveling to and from doctor visits and while on errands.

Lastly, make sure that you also take care of yourself and get plenty to drink throughout the day. Your loved one depends on you to stay healthy and hydrated.

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 helpful tip sheet on hydration, “Drinking Enough Fluids.” Check it out here: https://go4life.nia.nih.gov/tip-sheets/drinking-enough-fluids.

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For several more ideas to prevent dehydration, these come from the Alzheimer’s Association of Western and Central Washington State Chapter: http://www.alz.org/alzwa/documents/Techniques_for_Prevention_of_Dehydration.pdf.

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The website, “Eating Well.com,” has a slideshow, “How Much Water to Drink? Eight Water Facts and Questions Answered:”  http://www.eatingwell.com/nutrition_health/nutrition_news_information/how_much_water_to_drink.

What’s in a Name?

Do you at times wrestle with the questions “Who am I really?” and “What am I doing with my life?” A caregiver’s personal identity may become overshadowed by the loved one with dementia as the disease progresses.  

In speaking to caregivers, some have shared that they feel  they have lost their personal identities. Their lives became so totally focused on their loved ones, that when the person dies, they are at a loss as to who they are and how to move on with their own lives.

When I was in college I loved studying psychology. I found the writings of Dr. Erik Erikson on the concept of core identity fascinating. In retrospect, I believe I was trying at that time to come to grips with my own sense of identity and purpose in life.

Erikson proposed a psychoanalytical theory of human development comprising eight stages from infancy to adulthood. “According to Erikson, the ego develops as it successfully resolves crises that are distinctly social in nature. These involve establishing a sense of trust in others, developing a sense of identity in society, and helping the next generation prepare for the future,” writes Saul McLeod.*

During major milestones and crisis situations in our lives, I think we wrestle with identity questions. The answers to these may change significantly over the course of our lifetime. Being a caregiver for my mother became a part of my identity when I was in my mid-fifties. In hindsight, I now realize what a major milestone it was in my life, and how this role helped fashion who I am today.

My friend and mentor, Merle Stern, composed the following meditation to help caregivers reflect on the basics of self-identity – our name.

Find a place and a time when you can quietly follow this meditation. Sit comfortably and gently close your eyes. Become aware, as you close your eyes, of the darkness replacing the light.

Listen to the sound that emanates from silence. Become aware of the sounds coming from the vibrations of your body when you are at peace; when you are angry; when you feel resentful; when you have a heavy heart; when you feel impatient; when you are singing; when you are crying; when you are laughing; when you are engaged in an argument; when you are dancing; when you are walking; etc.

Now take a few moments to reflect on your name. How it has come to define you, influence you, shape your identity? Take a few moments to reflect how you have evolved over the years and are still in the process of evolving.

What is the history surrounding your name? Who gave you your name? Try to imagine yourself as a baby and hearing your name being called by the people who surrounded you at that particular time in life. How would you have felt as a baby hearing your name being called?

When you think of your name, what story, memory, or experience flows out of it? How are your story, memory, or experience and your name interconnected?

How has your name grown with you over time: childhood, adolescence, adulthood, family relationships, different relationships along your life’s journey?

Identify some major life tasks that hinge on using your name, for example, when you went for your driver’s license, signing your name to a lease or mortgage, signing a marriage license, etc. How are these defining you?

What traits and values are important to you? What makes you different from any other person?

Lastly, gently close your eyes again and become aware of your breath, your body. Feel energy emanating from your body as you slowly say your name in a gentle, loving way. Feel the energy emanating, detoxifying any negative feelings that emerge physically, emotionally, and mentally. Let a sense of peace and contentment surround you.

Take a few minutes now to write out what you have experienced in this reflection on your name.

I hope this meditation helps affirm who you are, and that what you are doing as a caregiver has meaning and purpose. Thich Nhat Hanh, a Buddhist monk who was exiled from Vietnam, wrote a book, Going Home, in which he discusses what it means to be human: “Live your daily life in a way that you never lose yourself. When you are carried away with your worries, fears, cravings, anger, and desire, you run away from yourself and you lose yourself. The practice is always to go back to oneself.”

Keep in contact with others for respite and support. I encourage you to regularly visit a support group in your local community. Support groups can offer a safe environment to express your struggles, anxieties and fears. They can offer help in reclaiming your identity if you feel lost at times in the caregiving role.

As Erik Erikson puts it, “The more you know yourself, the more patience you have for what you see in others.” Every bit of self-care and self-understanding improves your ability to care for your loved one.

I wish you peace, patience, and joy in your caregiving today and every day!
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If you found this meditation helpful, I hope you will share it with family and friends. Please remember to credit Merle Stern and this website. Thank you!

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To read the full article about Erik Erikson by Saul McLeod, go to: https://www.simplypsychology.org/Erik-Erikson.html.

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Lizzie Velasquez is a motivational speaker, not a caregiver, but she gives wonderful insights in this TED talk about “What defines who you are as a person?” Watch it here: https://youtu.be/QzPbY9ufnQY.

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To find a support program near you, check out the Alzheimer’s Association website: http://www.alz.org/care/alzheimers-dementia-support-groups.asp#chapter.