dementia education

Dysphagia and Dementia

Dysphagia (dis-FAY-juh) is a medical term for a swallowing disorder. According to the National Institutes of Health, swallowing problems occur in about 45% of those have been diagnosed with Alzheimer’s and other dementias. It can occur in a person with moderate to advanced dementia.  The main risk and danger is that the person who suffers from this disorder may aspirate or inhale food or liquid into the airway and lungs, thus causing pneumonia. There is also the danger of dehydration or malnutrition with the lack of sufficient intake of liquids and food.  May 20 carrot soup-482354_640

Eating/Swallowing Process

Swallowing is a complex function involving over fifty pairs of muscles and numerous nerves. Swallowing problems are often the first indicator that dementia has entered the moderate stage of the disease. The American Speech-Language-Hearing-Association (ASHA) notes that dysphagia can occur at different stages in the eating/swallowing process:

  • Oral phase – sucking, chewing, and moving food or liquid into the throat.
  • Pharyngeal phase – starting the swallowing reflex, squeezing food down the throat, and closing off the airway to prevent food or liquid from entering the airway (aspiration) or to prevent choking.
  • Esophageal phase – relaxing and tightening the openings at the top and bottom of the feeding tube in the throat (esophagus) and squeezing food through the esophagus into the stomach.
NICHD Swallowing Chart

NICHD Swallowing Chart

Dysphagia Symptoms

Caregivers can help prevent serious complications by identifying the early stages at which swallowing problems begin. Each person with this swallowing disorder is different, but some signs and symptoms may include:

  • coughing during or right after eating or drinking
  • wet or gurgly sounding voice during or after eating or drinking
  • extra effort or time needed to chew or swallow
  • food or liquid leaking from the mouth or getting stuck in the mouth
  • chest congestion after eating
  • weight loss or dehydration from not being able to eat enough.

If any of these symptoms are present, to prevent pneumonia, consult with your loved one’s physician as soon as possible. They will likely give you a referral to a specialist such as a speech or language therapist to conduct a swallowing assessment.

Making Modifications

As the dementia progresses, you may need to make modifications to foods and liquids in order for your loved one to eat and drink safely. Here are some suggestions taken from the National Institute on Aging that might help:

  1. Alternate hot and cold foods to help trigger a swallow. Cold drinks are also easier to swallow than hot drinks.
  2. Cut the food into small pieces and make it soft enough to eat.
  3. Offer soft foods, such as ice cream, protein milk shakes, yogurt, soups, applesauce, gelatin, or custard.
  4. Thin liquids, like coffee, tea, water, or broth, are hardest to swallow. Buy Thick-It to add to liquids to make them thicker. You can purchase it at most pharmacies.
  5. Don’t use a straw; it may cause more swallowing problems. Instead, have the person drink small sips from a cup. (Check out the Teepa Snow video below.)
  6. Limit the amount of milk the person drinks if it tends to catch in the throat.
  7. Sweet taste receptors remain intact through the end stage of dementia. Persons at this stage usually favor sweets and can be enticed to eat by adding sweet thickeners to their foods.
  8. Don’t hurry your loved one. They may need extra time to chew and swallow each mouthful before taking another bite.
  9. Position your loved one in an upright, sitting position, with their neck forward and chin down when swallowing. Don’t feed them if they are drowsy or lying down.
  10. In the later stages, you may have to gently stroke their neck in a downward motion and say, “swallow” to remind them to swallow.
  11. If your loved one is on medication, find out if their pills can be crushed or taken in liquid form.

Mealtimes will not always be easy, but it helps to make these as pleasant and enjoyable as possible. There will be times when your loved one will not be hungry when you’re ready to serve food. Or they may not feel like eating much at that time but get hungry at other times. In the later stages of the disease, many people lose interest in food. Consult with the doctor if they are losing weight and ask what supplements, if any, to use.

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

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For more detailed information regarding dysphagia, check the National Institutes of Health website: https://www.nidcd.nih.gov/health/dysphagia.

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The Alzheimer Association has recommendations regarding late-stage Alzheimer’s caregiving that you might find helpful. Just click: https://www.alz.org/care/alzheimers-late-end-stage-caregiving.asp.

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Dementia care advocate and trainer Teepa Snow provides tips regarding feeding and drinking in late stage dementia patients. This is a “must see” brief video: https://youtu.be/sNPAESrllgQ.

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Morningside Ministries has a series of dementia training videos. This one is a helpful five-minute video on “Food Cuing for Appetite and Pleasure:” https://youtu.be/cqyxvHONG18.

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Laura Michael, a dysphagia specialist, has a BS degree in nutrition and owns Dysphagia Supplies Direct, an on-line store. Her website contains four instructional videos regarding the proper use of thickeners: http://www.dysphagiasupplies.com/videos.

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Check out these recipes from the NYU Steinhardt Iron Chef Dysphagia Challenge: https://speech.steinhardt.nyu.edu/dysphagia-cookbook/#recipes.

This article is about the benefits of xanthan gum thickeners vs. modified cornstarch thickeners. You can read it here: http://thickit.com/xanthan-gum-what-is-it-and-why-does-it-matter-for-those-with-dysphagia/.

Exercising Muscle Memory – Part 1

Practice — practice — practice! This was a kind of motto of mine as a young girl rehearsing for an upcoming piano recital. Little did I understand at the time that my music lessons and practice sessions were an effective way of developing “muscle memory.” Feb. 4 Braincartoon (2)

Wikipedia defines muscle memory as “… a form of procedural memory that involves consolidating a specific motor task into memory through repetition. When a movement is repeated over time, a long-term muscle memory is created for the task, eventually allowing it to be performed without conscious effort.” Muscle memory works when you drive a car, ride a bike, eat, tie your shoelaces, type on a keyboard, play a musical instrument, etc.

I recently came across two websites that discuss ways to encourage persons with dementia to exercise their muscle memories and focus on what they still can do. Both sites describe a person-centered Montessori approach. Based upon successful methods that were used by Dr. Maria Montessori, this approach attempts to keep a person as independent for as long as possible by focusing on tasks and habits related to procedural memory.

Maria_Montessori in 1913To digress for a moment, Dr. Maria Montessori (1870-1952) became the first female doctor in Italy in the 19th century. She was a physician, educator, and innovator. She worked with children with intellectual disabilities and developed a method to teach them to read and write. By 1910, her philosophy and method of teaching and nurturing youngsters was applied to students in mainstream schools. The emphasis is placed on self-determination and self-realization. As Dr. Montessori puts it herself, “Never help a child with a task at which he feels he can succeed.” Her teaching methods are still in use today in Montessori schools all over the world.

How does all this apply to care of our loved ones?  Persons with Alzheimer’s and dementia are often confronted with what they can no longer do, such as routine activities of daily living. They may struggle with simple tasks like dressing themselves or brushing their teeth. The key principles of the Montessori method can give you, the caregiver, an understanding of how better to focus on your loved one’s capabilities, engaging them in meaningful interactions and helping them remain as independent for as long as possible.

Alzheimer’s Australia, an advocacy agency, in conjunction with Monash University in Melbourne, Victoria, has developed a wonderful resource, “Relate, Motivate, Appreciate,” that details this person-centered approach. (See link below.) Here is a summary of the twelve key Montessori principles of engagement, as listed in this resource:

  1.  The activity should have a sense of purpose and capture the person’s interest.
  2.  Always invite them to participate.
  3.  Offer a choice whenever possible.
  4.  Talk less. Demonstrate more.
  5.  Physical skills; focus on what they can do.
  6.  Match your speed with the person you are caring for. In other words, slow down!
  7.  Use visual hints, cues, or templates.
  8.  Give them something to hold.
  9.  Go from simple tasks to more complex ones.
  10.  Break the task down into steps. Make it easier to follow.
  11.  To end, ask, “Did you enjoy doing this?” and “Would you like to do this again?”
  12.  There is no right or wrong. Think engagement.

I wish I had been aware of this approach when I was caring for my mother. At times I felt it was hit and miss when trying to engage her and keep her active. Be flexible and willing to adapt to what your loved one is able to do on a daily basis, as each day may be different. I hope you will share your experiences of your attempts to help your loved one regain control of aspects of their life and retain their abilities for as long as possible.

In Part 2 of this topic (an upcoming blog), I will delve further into four of the principles listed above, and detail specific things you can do in helping your loved one exercise their memory muscle.

Oh, and by the way, I never became a world class pianist, but I still play the piano for my own enjoyment and relaxation, albeit this memory muscle is a little “stiff!”

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

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Here is the link to a 72-page booklet developed by Alzheimer’s Australia, in conjunction with Monash University: http://qualitydementiacare.org.au/wp-content/uploads/AlzheimersAustralia_Montessori_Resource_WEB.pdf.

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Another website that details the Montessori methods for dementia care is: http://keepingbusy.com/learning-center/montessori-principles-for-dementia/.

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The Dementia Action Alliance has a sixteen-minute video, “Person-Centered Matters, Making Life Better for Someone Living with Dementia.” This video highlights the positive aspects about helping people live fully with dementia, told through the stories of five people living with the condition at various stages. You can watch it by going to: https://www.youtube.com/watch?v=5R3idi0e1eg.

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A Reflection on the Language of Touch

A hug can provide solace. A gentle massage can soothe and calm. Holding hands can reassure. In short, “touch” can be a powerful “therapy” that comforts a loved one with dementia.

Study of Dante holding the hand of Love by Dante Gabriel Rossetti

Study of Dante holding the hand of Love by Dante Gabriel Rossetti

Some of my best memories in caring for my mother center around sitting together on the porch of the assisted living facility, without saying much, but just gently stroking her hands and seeing her smile.

I realize that not all family members feel comfortable about touching or hugging their relatives. There can even be issues rooted in a fear or stigma that touching a person with dementia will result in “catching” the disease.

If you are caring for a loved one in your home, caregiving might inevitably involve touching intimate areas, like changing incontinent pads or panties, toileting, or bathing a relative of the opposite sex. How do you become comfortable with the vital role that “touch” plays?

The first step is to reflect on the nature of touch as one of our most basic human needs, no matter age or physical or mental condition. The second step might be in confronting your own reservations about touch. For a person with dementia, the need to be comforted and reassured by the loving, gentle touch of a hand or hug can be life-affirming, decreasing their feelings of anxiety, fear, or loneliness.

The reflection below was composed by Merle Stern, to guide in a deeper understanding of the importance of the gift of “touch” in your caregiving role. In her own words, Merle notes: “I remember many years ago, as though it was yesterday. I took the two week old baby from the arms of her mother and held her close to my heart. The synchronization of the baby’s heart beat with my own heart beat was a memorable experience, and at that moment I became aware of the power of touch.”

Jan 21 baby hugged cropped-1345736_640

To begin that inward journey of processing your personal experiences, you will need to withdraw to your sanctuary – that quiet place within you and surrounding you. Then, gently close your eyes and focus your awareness on your breathing. Experience the space around you and become at one with it.

Now, try to think of touching as a language: a language that speaks to the innermost sense of who we are; a language that has the potential to convey the depth of a relationship. The person whom you touch, and their response to your touch, has the ability to create a bond, and to build bridges that transcend words and invisible barriers. It simultaneously penetrates two different worlds.  

Take a moment now to gently stroke your arm. Feel the softness of your skin as your touch communicates gentleness and tenderness. Note how you are giving and receiving at the same time. After a few moments, and through the medium of your touch, try to communicate different issues; for example approval, objection, or whatever comes to your mind. Become aware of how and what you are feeling simultaneously, both as the transmitter and receiver of that touch.

Focus again on your breathing. After a few moments scan over some of your life’s experiences, making notes in your journal as you go along:

  •  The touch that conveys your joy and well being;
  •  The touch that conveys your appreciation/gratitude for help given by a stranger;
  •  You have not seen a person for a long time and you reach out with a spontaneous hug – a hug that enhances your bonding and friendship that transcends time and distance;
  •  The way you touched a child who came to you for comfort and solace;
  •  The touch that expresses “welcome,” and one that expresses “goodbye;”
  •  The difference in touch when you stroke a kitten or dog, or other pet animal;
  •  The touch that conveys your compassion, empathy, and understanding.

 Jan 21 grandma enbraces child-577494_640

Again, scan over your life and become aware of your own personal “touch history,” making notes in your journal as you go along:

 Visualize yourself as a baby, reaching out to touch your mother’s breast or comforting your teddy bear;

  •  As a young child, the experiences of being touched by your mother, father, brothers, sisters, aunts, uncles, and grandparents;
  •  As an adolescent and as an adult;
  •  As a parent to your child;
  •  As an adult child to your parent;
  •  As a spouse to your spouse.

Now reflect on your touch as a caregiver. Become aware that as you touch that person’s body, you are also touching his or her life. You invoke long forgotten memories of what once was and no longer is.

Throughout your caregiving, your touch conveys a variety of messages. Some of these messages include: your loved one is important; they are lovable; they do not need to be afraid; you are present with them on their journey.

Now, reflect on the possibility that the last touch in this person’s life may come from your hands. What would you like this last touch to convey, as you bid goodbye to your loved one who is transitioning to another realm?

Finally, take a look at your hands – the hands that will convey what words cannot. Feel your appreciation for your hands and the blessed gift of touch. Make a note in your journal of the value of this experience and how it can continue to enrich your life.

 hands-holding-together

Our experiences of bonding often center on the sense of touch and communicate much more than words ever could. The British-American anthropologist Ashley Montagu sums it up in his 1971 landmark book, Touching: The Human Significance of the Skin: “Touch conveys fondness, security, closeness, warmth, concern, and encouragement, and makes [older persons] feel an increased sense of trust and well-being.

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

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Sincere thanks go to Merle Stern, my friend and mentor, who composed this reflection. Feel free to pass it on to family and friends, but please give credit to Merle and this website.

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Dave Otis, a licensed massage therapist, wrote easy directions for healthy self-massage exercises for hands, face, and neck. Check these out by going to: http://www.unh.edu/health-services/sites/unh.edu.health-services/files/media/PDF/Stress/SelfMassage.pdf.

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For a comprehensive article on “How Skilled Human Touch Can Transform Person-centered Dementia Care,” go here: https://www.nhqualitycampaign.org/files/Compassionate_Touch_White_Paper.pdf.

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My sister Marcia and I published a journal called My Blessings Journal. It can be a useful tool to introduce you to the joys of journal-keeping. To order a copy through my website click here: http://caregiverfamilies.com/book/.

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Alzheimer’s and the Senses Part Five: Touch

“To touch can be to give life,” said Renaissance painter, sculptor, architect and poet Michelangelo. I was privileged in 2014 to visit the Sistine Chapel in Rome and view Michelangelo’s fresco painting of “The Creation of Adam.” You may have seen this classic painting of God’s near-touching finger reaching out to bring “life” to Adam.

The scene is unforgettable! I wonder if Michelangelo knew that touch is the first sense developed by the body.

Michelangelo's "Creation of Adam"

Michelangelo’s “Creation of Adam”

Our sense of touch is a basic human need, a lifeline that can communicate love, safety, care, reassurance, and trust. Touch is not an emotion, but emotions are formed through the physical, psychological and spiritual effects that we experience through this unique sense. Persons with Alzheimer’s or other forms of dementia do not lose their capacity for human emotion or their recognition of a caring touch.

Compared to our scientific knowledge of the other senses, our understanding of the sense of touch, and in particular how it is processed in the brain, is limited. According to neurobiologist Dr. David Linden, “genes, cells and neural circuits involved in the sense of touch have been crucial to creating our unique human experience.” Yet, writes Dr. Linden, the body’s touch circuits are “a weird, complex and often counterintuitive system.”

How the Brain Processes Touch

Our sense of touch does not have a specific place on the body where it is located, for it is found all over the body in our skin. Our skin is the largest organ in the somatic sensory system. The somatic sensory system has nerve endings and receptors that help us feel when something comes into contact with our skin.

Chart of skin

Chart of skin

When the touch, pain or heat sensors in our skin are stimulated, they send electrical impulses to our neurons. The neurons then act as a relay team, passing the electrical pulse from neuron to neuron until it reaches our spinal cord. Our spinal cord then takes the signal and sends it to our brain to translate it.

Neuroscientists have discovered that there are two distinct but parallel pathways in the brain for processing “touch” information. The first pathway is in the region of the brain called the primary somatosensory cortex. This is the region that analyzes and processes information about the “facts” of a touch, such as vibration, pressure, texture, temperature and location.

The second pathway processes social and emotional information and activates brain regions associated with social bonding and our pleasure and pain centers.

Aging and Touch

Humans crave touch. Just as babies thrive and respond to being held, as we age our need for touch remains. Unfortunately, our sense of touch steadily deteriorates as we get older. Every year, starting at around age eighteen, we lose about one percent of our tactile sense. Some researchers explain that this could be the reason elderly people are so prone to falls – they get less tactile information from the soles of their feet when wearing shoes.

The Physical and Emotional Benefits of Touch

Research studies document physical and emotional health benefits of using “touch” in caring for a person with dementia. The physical benefits include:

  • Lowering of blood pressure
  • A decrease in pain
  • An improvement in mood
  • A decrease in stress-related cortisol
  • A decrease in heart rate
  • An increase in sensory awareness.

As to the emotional benefits, touch can communicate multiple positive emotions such as love, safety, care, reassurance, trust.  Hugs, holding hands, a caress, or other physical gestures of affection can ease your loved one’s mind, help them feel less isolated, decrease their anxiety. Studies have shown that a person giving a hug gets just as much benefit as the person being hugged. For a person with Alzheimer’s, compassionate touch is a language of the human heart.

How You Can Help

1.  Active Tactile Stimulation

The brain “feels,” so tactile stimuli is brain stimulation. The most sensitive parts of our body and those with the most nerve endings are our fingertips and mouth. Each of our fingertips has about 3,000 nerve receptors.

A person with dementia naturally gravitates toward tactile stimulation when they explore the fabric of their clothing or the smoothness of an object in front of them. Every solid object has texture, temperature, and shape. They can benefit from activities that involve handling a variety of objects to experience texture. These could include: squeezable balls, sensory “blankets,” activity muffs, finger painting, “clay” work with Play-Doh.

Go for a walk in a garden or woods and let your loved one touch leaves, tree bark, and flowers. Bring the feel of the outdoors inside by filling a tray or basket with similar objects like shells and coral to replicate the seashore, or acorns, pine cones, and various branches.

Incorporate “touch” into their daily routine, like folding warm laundry, sweeping the floor, arranging flowers in a vase, drying dishes, brushing a dog’s fur coat, knitting or crocheting.

2. Passive Tactile Stimulation

My Mom always seemed to want a handkerchief in her hand. She told me it gave her a feeling of reassurance. She also enjoyed carrying around a small purse that had a few items tucked in it like a comb and coin purse.

One of the ways I found to calm and comfort Mom when I visited her in the assisted living facility was to give her a weekly manicure. A pedicure and combing/brushing hair are other forms of passive tactile stimulation.

Giving a hand, foot, neck, or upper back massage is also a way to connect and communicate. Make sure your loved one gives you permission to do so. Do not surprise them. hands-holding-togetherUse a little massage oil like lavender or lemon balm to add to the sensory experience.

When temperatures change in the fall and winter months, make sure your loved one is kept warm both inside and outdoors. They may not be able to tell you when they are hot or cold. Sitting wrapped in a soft blanket can provide comfort and warmth to an anxious person. Cover sofas or an armchair with fake fur or sheepskin.

3. Pain

Be on the alert to pain in your loved one at all stages of the disease. Pain often goes undetected, under-recognized, and under-treated in persons with dementia. Most studies suggest that the experience of pain is elevated in persons with mild to moderate Alzheimer’s disease. However, pain sensitivity in the late stages is unclear, according to Sciencedaily.com.

Beside facial expressions like grimacing or frowning, some signs that your loved one is in pain include: guarding, bracing, moaning, sighing, aggressive behavior.

The bathroom and kitchen are places where scalding and burns happen. Adjust the water heater to 120 degrees Fahrenheit, and/or install anti-scald devices for water taps. Check into automatic shut-off devices for stoves and ovens. Unplug appliances when not in use.

Michelangelo symbolized the power of touch in his magnificent painting of the act of creation.  Create opportunities each day to “give life” to your loved one. The sense of touch is truly fundamental to human communication, bonding and health.

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

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Read more about touch and the elderly at: http://www.comfortkeepers.com/home/info-center/senior-care/the-power-of-touch-and-what-it-means-for-the-elder#sthash.f1NaePg5.dpuf.

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Dacher Keltner, UC Berkeley psychology professor and faculty director at the Greater Good Science Center, shares insights into touch therapies in this eight-minute YouTube video: https://youtu.be/GW5p8xOVwRo.

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The Alzheimer’s Association of Australia has a “Help Sheet on Pain.” You can find it here:

https://www.fightdementia.org.au/files/helpsheets/Helpsheet-CaringForSomeone11-Pain_english.pdf.

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For easy directions about giving a hand massage, check out: http://www.wikihow.com/Massage-Someone’s-Hand.

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End-of-Life Decisions and Care

Let’s begin at the end. What do most of us wish for at the end of our lives? Dignity? Comfort? Respect? Love? These are the things I want for myself and my loved ones. If caring for my mother taught me anything, it was to be as prepared as possible for when that time came for her. november-luminous-sky-1107952_640

My experience with death in our family has been very limited. Neither I nor my siblings were present when my father passed away in the hospital in the early morning hours. Fortunately, I was present when Mom drew her last breath while she lay in a coma in a local hospital’s emergency room ten years ago. It was a peaceful passing!

I asked a friend of mine, Fr. Thomas Schroer, S.M., Ph.D., to share his thoughts and experiences with death and the dying. Fr. Tom’s mother was attended by hospice staff while in a nursing facility. He also has accompanied several dying individuals in their last hours. Fr. Tom shared   that it is important to have well-trained and caring professionals assisting families at the crisis time of a loved one’s impending death. It’s an exhausting emotional roller-coaster ride. Family members are bound to experience a range of emotions, even conflicting ones, when caring for a dying individual. In such a situation, caregivers are in need of support, as well as the dying person. “I remember so well the relief I experienced when hospice care providers arrived to assist my family during my mother’s last days,” writes Fr. Tom. “The healthcare professionals were committed to making her as comfortable as possible. We could now focus completely on supporting one another and my mother with the confidence that she was in good hands.”

Fr. Tom highly recommends reading the book, Final Gifts, by Maggie Callanan and Patricia Kelly, two hospice nurses. “As nurses for the dying,” write these two authors, “we see ourselves as the counterparts of birthing coaches or midwives, who assist in bringing life from the womb into the world. At the other end of life, we help to ease the transition from life through death to whatever exists beyond.”  As family caregivers, we increase the probability of the dying process taking place in the most lovable and caring manner possible, if we are able to envision the dying process as a “second birthing process.”

Since you want the best care possible for your loved one, a hospice provider can assist you in making that vision a reality, even in the familiar surroundings of one’s own home, if that is preferred. Health insurance will usually cover the expenses. It is important to check out in advance the reputations of the hospice providers in your vicinity. Fr. Tom notes that not all organizations are equal in terms of their professional excellence and care.

Death is part of everyone’s life cycle. However, it is rarely a topic for serious family conversation until a crisis. My family was so fortunate. Our parents took the initiative early in their retirement years to meet with a family lawyer to draft all the necessary papers for wills and advanced directives. They prepaid for plots at their local cemetery. My oldest sister was designated executor of their wills, while I was made their health-care surrogate. Following Mom’s diagnosis of Alzheimer’s and vascular dementia, I arranged for our parents to meet with a geriatric care manager/financial planner. My parents discussed these plans with all the family members. Dad kept all their important papers in a portable metal file case, with copies at the lawyer’s office. This made it easy for us to know where to look if anything happened to either one of them.

nov-writing-1149962_640Legal advanced planning is the best plan to have. This ensures the decisions you and your loved one wish will be honored without the expense, delay, or loss of legal rights that can go along with the court appointment of a guardian. If someone dies without a will, their estate goes into probate. The probate court then uses the laws of the state to decide who inherits what. If you already have formal documents in place, take a few minutes to review them now, in case they need updating.

My recommendations to caregivers include:

  1. Start the conversation with your loved one while they are still able to tell you what kind of end-of-life treatment they would accept or not accept. “The Conversation Project” offers a free starter kit online to help family members begin these discussions. (See resources below.)
  2. How would you/they want to be remembered? What matters most to you/them?
  3. What level of medical interventions do you/they want? CPR? Feeding Tube? Artificial nutrition? Pain control?
  4. Make sure end-of-life wishes are honored, not only with a living will or advanced directive, but also a POLST (Physician Orders for Life Sustaining Treatment). The POLST is a medical form that is legally recognized in many It spells out end-of-life treatments that you want or don’t want. Medical personnel, especially EMT’s who come by ambulance in a crisis MUST follow the instructions on a POLST. (See resources below.)
  5. Designate a health care surrogate for yourself and your loved one, as well as a person you trust who can serve as your agent with durable power of attorney. Consult with an attorney before making or revoking a Durable Power of Attorney.
  6. Look into what your local hospice services may have to offer if and when it comes time. If you think your loved one is nearing that time, discuss this with your family doctor. You can request an evaluation by a hospice organization yourself, but the formal request for services will usually have to come with a physician’s request.
  7. What type of spiritual practices and memorial traditions would you/they want?

Endings are extremely important and deserve our loving attention to details. Maggie Callanan notes, “Our dying is the ultimate signature on our life’s story.” Talking with family and friends, consulting with health and legal professionals, bereavement experts, and spiritual advisors can help you work through the grief and loss issues you will inevitably face. Knowing you have done all you can as a caregiver to be prepared will help you get on with life and loving and making wonderful memories in the current phase of your loved one’s life journey.

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

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Many thanks to Fr. Thomas Schroer for taking time out of his busy schedule to share his thoughts about end-of-life care!

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The Conversation Project is a nonprofit organization devoted to helping families have conversations about end-of-life wishes. Their website is: http://theconversationproject.org.

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The National POLST Paradigm is a website that provides information about Physical Orders for Life-Sustaining Treatment: http://polst.org.

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Here is an interview with hospice worker Maggie Callanan, one of the authors of Final Giftshttps://youtu.be/kojj-OrS5Jk.

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Dr Jennifer Bute has released a series of short videos discussing dementia issues from her inside perspective as a person diagnosed with early onset dementia. Watch her seven-minute video about end-of-life issues: http://gloriousopportunity.org/dementia-issues.php.

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The Alzheimer’s Association has information to help with end-of-life planning at their website: http://www.alz.org/care/alzheimers-dementia-planning-ahead.asp#ixzz2lDd6TML2.

 

Eyes: A Reflection on our “Windows” to the World

The human senses are our contact to our environment. Perhaps the most important organs of sense are our eyes. An English proverb attests: “Eyes are the window of the soul.”  

Eyes: Our Windows to the World

Eyes: Our Windows to the World

In Part Two of my blog series on dementia and the senses, I focused on eyesight. Our eyes not only connect us with our surroundings, but help us maintain sharpness of our minds.

I often take my eyesight for granted. But the eyesight of persons with Alzheimer’s and dementia may change as the disease progresses. This will cause them to perceive and interpret their environment differently.

One of my favorite poets, Rumi, wrote, “Everything that is made beautiful and fair and lovely is made for the eye of one who sees.” With the following reflection, I hope to focus your awareness as a caregiver on seeing, appreciating, and “experiencing” objects in your daily life and surroundings. It was composed by my mentor and friend, Merle Stern.

Take a few moments to relax. Let your worries drift away as you dwell in appreciation of our remarkable sense of sight.

Find the time of day when you know that your life will be without distractions, not easily disturbed, and therefore an opportunity for reflection. Find a spot where you know there will not be any external intrusion. Take a comfortable position whether sitting or lying down.

After you have settled, focus your awareness on your breathing. Experience the movement of your breath as you quietly breathe in and out. Now feel your entire body in rhythm with your breathing.

With your eyes still open, scan your surroundings. Allow your eyes to settle on something to which you feel drawn. Depending where you are, it might be a flower, an arid landscape, a tree, an empty vase, a piece of furniture that you hope to refinish, a precious memento like a trophy, plaque, or favorite painting. september-20-vase-of-flowers-with-book-1329155_640

Become aware of what you are experiencing as your eyes settle on this object. What is your sight communicating to you? Even though you have seen this object before, somehow it is as if you are seeing it for the first time. Feel yourself drawn to connect to what you are seeing. Become aware of the feelings generated within you. Do you feel relaxed, serene, anxious, restless, or distracted by suddenly remembering you had something else to do?

Now engage in a dialogue in order to develop a relationship with your chosen object.  Formulate your own questions that specifically apply to that object. For example, had I chosen an empty vase, these are some of the questions I would pose:

  • I notice you do not have any flowers. Are you often without flowers?
  • Do you like having water and flowers in you?
  • How do you feel when you do not have any flowers?
  • Do you feel you are just on display?
  • Do you feel that there is a purpose to your existence? If so, what is it?
  • Are you here because you were given as a gift? Are you appreciated as a gift?
  • Do you have any favorite flowers, and if so what kind?
  • How do you feel when the flowers are gone?
  • How do you feel when the flowers have died but not removed, and the water emits an unpleasant smell?

After you have had all your questions answered, and you feel that you know your chosen object, take a moment and absorb what you are experiencing.

Now gently close your eyes. You are deliberately closing out light. Notice how your environment changes? Take a moment and absorb what you are experiencing. What is it that resonates with your being, e.g., the emptiness of the vase? What has awakened inside of you? How has the sight of the chosen object connected with what you are experiencing at this given moment in time? In the darkness you cannot see the object, but you know it is there. What are you experiencing? What is the difference between seeing the object in light, and knowing it is there in the darkness even though you cannot see it?

When you are ready, gently open your eyes and come back to the room.

What is the value of this experience for you? How can you be more sensitive to your loved one’s changing perception of their environment? Take a few minutes to write your reflections in your journal.

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

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Many thanks to Merle Stern, my friend and mentor, for composing this meditation. Feel free to pass it on to friends and family, but please give credit to Merle and this website.

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Here is a unique version of the song, “What a Wonderful World,” sung by the English boys’ chorus, Libera. The lyrics describe seeing the bountiful beauties of this world: https://youtu.be/b4nmVhnGtDw.

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My younger sister Marcia and I recently published a journal called My Blessings Journal. MyBlessingsJournalIt can be a useful tool to introduce you to the joys of keeping a journal. You can order a copy through my website: CaregiverFamilies.com/book/.

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If you found this blog beneficial, please share it with others to spread the information. Also “like” us on our Facebook page: https://www.facebook.com/CaregiverFamilies/.

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Alzheimer’s and the Senses/ Part One: Hearing

Dementia is not just about memory loss. It impacts many different brain functions including the sense of hearing. The Better Hearing Institute advises us: “Listen to your ears. They might be telling you something.” Hearing loss should be the number one red flag, a sign of developing dementia or Alzheimer’s disease.

The Human Ear

The Human Ear

The ear was considered the seat of memory in antiquity, particularly in Latin literature. This was an era when books were scarce. The ear was thought to be the natural avenue of information. The ancients understood that a person who does not listen attentively does not remember well. Hence, we have the adage, “In one ear and out the other.” (The Classical Weekly, vol. XII, No. 4, p. 28.)

My husband and I recently attended a presentation on the effects of hearing loss sponsored by a local hearing aid company. I came to realize the close association of hearing loss with dementia. It also shocked me enough to schedule a hearing test. What I learned about our incredible sense of hearing was enlightening. Here’s a synopsis of that presentation, along with further research I did in this regard.

Our Amazing Sense of Hearing
Hearing is one of our most extraordinary processes. Our auditory system is completely intact in the womb by twenty weeks gestation. At twenty-three weeks a fetus can respond to loud noises, and may jerk or even hiccup after hearing a loud sound. (babysense.com)

The auditory system is comprised of two subsystems: the peripheral system (the outer ear, middle ear, and inner ear), and the central auditory system, (from the cochlear nucleus up to the auditory cortex of the brain). When these parts all work together, we can hear and process sounds. We rely on our hearing for many things:
• understanding speech which educates, informs, and entertains us;
• recognizing sounds that can warn and alert us to danger;
• recognizing background noises of nature and the world around us;
• appreciating pleasurable, beautiful sounds.

Diagram of the Ear

Diagram of the Ear

It is the cochlear, a spiral shaped tube filled with fluid and hair cells, which creates the electrical signals that pass through the auditory nerve to the brain. Sound is processed in different regions of the auditory cortex, part of the temporal lobes located on both sides of the brain. Here these electrical signals are interpreted as music, speech, or other sounds such as laughter, thunder, etc. The meaning of words is also processed in the temporal lobes.

The Brain and Hearing Loss
Studies at Johns Hopkins University, the University of Utah Health Care, and the National Institute on Aging show a link between hearing loss and mental decline. “Making sense of sound is one of the most computationally complex tasks we ask our brains to do: process information in microseconds,” says Nina Kraus, Ph.D., neuroscientist and director of Northwestern University’s Auditory Neuroscience Lab. The strain of decoding sounds over time may begin to overwhelm the brains of people with hearing loss. This forces the brain to devote too much energy to processing sound, and leaves the person more vulnerable to dementia. “Adults with hearing loss are more likely to develop problems thinking and remembering than adults with normal hearing.” (Starkey.com)

Statistics by the National Institute of Deafness and Other Communicative Disorders (NIDCD) reveal that one out of three persons between the ages of 65 and 74 have some degree of hearing loss. This number increases to almost 50% for those who are over 75. However, less than 25% of those who need hearing aids actually get them.

Dementia and Hearing Loss
Hearing impairment can make cognitive dysfunction worse. If a person can’t hear the words, their brain won’t remember the words, and those words start to become confusing. Hearing loss can bring on anxiety, social isolation, reduced alertness, and compromised personal safety. These are factors for developing dementia.

Research shows the following:
1. Adults with mild hearing loss (greater than 25 decibels) are two times more likely to develop dementia.
2. Adults with moderate hearing loss are three times more likely to develop dementia.
3. Adults with severe hearing loss are five times more likely to develop dementia.

Hearing and Quality of Life
It is recommended that every person over fifty years of age get their hearing tested every three years. A hearing evaluation should also be part of any assessment of cognitive function. Persons with Alzheimer’s and hearing loss can use and benefit from hearing aids. Improved sensory perception won’t stop the progression of Alzheimer’s disease, but increasing their ability to hear can help reduce the person’s confusion.

Making Adjustments for Communicating with a Person with Hearing Loss and Dementia
1. Get their attention. Always face the person when speaking. Get to their level. Gain attention by speaking their name or gently tapping them on the shoulder or arm.
2. Provide good lighting. Take care that bright light is not shining directly in the person’s eyes.
3. Reduce sudden unexpected or loud background noises as this may cause sensory overload. Avoid having too many people speak at the same time.
4. Slow down. Speak slower, more distinctly, but don’t let your speech become too exaggerated.
5. Speak in a normal tone. Don’t shout, as shouting can distort your voice and make it more difficult to understand. Don’t chew gum or have candy or food in your mouth while talking.
6. Simplify the message or write it down. Rephrase if needed. Give visual cues and gestures, such as moving your hands to your mouth to show eating food, brushing teeth, etc.
7. Give them time to hear what you are saying. Allow time for their brains to process and think of the answer.
8. If you are out in a restaurant, choose a table or booth away from a lot of noise. Have the person sit at the end of the table or lean with their back against the wall. These things reduce noise levels.

There is still much that we don’t know about the connection of hearing loss with dementia. But researchers are working diligently to find the answers. In the meantime, we can be more mindful of our incredible sense of hearing. Take time to listen and appreciate the wonderful sounds of nature, music, and the human voice.

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

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Hearing loss is not a joke. But try this forty second hearing loss simulation featuring the Flintstones and Barney: https://youtu.be/ar1Dq-M2ok4

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Here is a ten-question hearing quiz to take: https://www.nidcd.nih.gov/health/do-you-need-hearing-test-quiz

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Hearing aids are expensive. Read about two cheaper but effective “hearing amplifiers” recommended by an audiologist at Johns Hopkins University: http://dailycaring.com/affordable-hearing-aid-alternatives-for-seniors-hearing-amplifiers

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Bird lover, Lang Elliott, has a lovely website filled with the “Music of Nature.” Check it out by going to: http://musicofnature.com/listening-room/.

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If you found this blog beneficial, please share it with others to spread the information. Also “like” us on our Facebook page: https://www.facebook.com/CaregiverFamilies/.

Steppingstones of a Caregiver’s Journey

We live in a world filled with change and crisis. I live in South Florida. The recent shootings and deaths in Orlando continue to pre-occupy the local news media. Multiple theories were advanced about the shooter’s motives in committing such a horrible crime. Many families experiencing tragedies in the USA and abroad, are mourning the loss of their loved ones and are in crisis. A friend of mine, Angel A., recently wrote a sentence on Facebook that continues to reverberate with me: “The mettle of a human being is proven by how well he deals with and overcomes challenges.”Stepping_stones_3 Wikimedia.org by Alethe (1)

Professionals say that a crisis may be a turning point or a breaking point. The theory of crises concerns how people are able to handle major disrupting changes in their lives and their impact on that person and others surrounding them. We can either “move ahead” or “move backward” and regress.

Receiving the diagnosis of Alzheimer’s disease for a loved one is certainly a crisis in their life and our own. I can still remember sitting in the neurologist’s office with my Mom and Dad when he shared the results of her neurological testing. All her tests pointed to a probable diagnosis of Alzheimer’s and vascular dementia. My heart was pounding; my hands were sweating. I felt numb inside. That was sixteen years ago! It was a crisis in my life and that of my parents. After my father’s death three years later, I became my mother’s primary caregiver. I was cast into a daunting role that caused another crisis within me. Would I have the ability to meet her needs?

Researchers note that three factors play a role in determining how effectively a person copes in a crisis. The first factor relates to your personal characteristics. These include: your age, where you live, how you solved problems in the past, how mature and confident you are.

The second group of factors relates to the crisis. These factors are: what the crisis is, how sudden was it, how controllable is it.

The third group includes your social and physical environment. How supportive are your family and friends? How accessible are community support services?

As I reflect back to that crisis period, I realize that I was somewhat prepared to take on this role. I was privileged to have had training as a counselor back in the mid-70’s. As part of that training I was introduced to the “Progoff Intensive Journal Program for Self-Development.” Dr. Ira Progoff was a psychologist who pioneered the therapeutic use of writing as a tool for ongoing self-growth. This program provides a method for keeping a journal to gain awareness about the diverse areas of one’s life and to develop a more meaningful life. Workshops are conducted throughout the USA and Canada.

stepping stones pexels-photo-86364One of the exercises in that journal program is called “Steppingstones.” This exercise asks us to reflect on eight to twelve steppingstones. These are periods of significant events throughout our life which, in hindsight, were marks of change for us. For each steppingstone event, you then outline the emotions, persons, fears, and hopes affiliated with it.

Caring for my mother was indeed a steppingstone event in my life. As I reflect on what previous life experiences and inner resources prepared me for this, I see that it was not only a crisis time, but became a period of transformation.  It helped shape me to be the person I am today.

To those of you who are thrust into a similar caregiver role, and feel you are in a crisis situation, try to analyze the crisis. Break it down into the smallest components possible. Each of these components may not seem so threatening. It will also make it easier to develop specific strategies to deal with those smaller components one by one. Here are some recommendations to prepare yourself for dealing with the crisis:

  • First, learn as much information as you can about the disease. By increasing your knowledge and understanding, you also increase your ability to cope successfully. There are numerous books, videos on line, and websites filled with resources and ways to handle a variety of stressful situations. Check out some of these at the “Resources” section of my website.
  • Second, build up a support network for yourself of family, friends, co-workers, and neighbors. If possible, attend a caregiver support group, talk to a professional counselor, or join an online group. A solid support network is critical. Not only is this support necessary for your emotional stability, but it may be helpful when you need to make objective, rational decisions.
  • Third, preserve a reasonable emotional balance by managing upsetting feelings aroused by this crisis. Work through your feelings by restructuring your thinking, such as telling yourself, “I will not let the negative things that happen today affect my mood or behavior.” Processing your feelings allows you to deal with them and let go of the negative ones. You may not be able to control what’s going on, but you can control how you react to it.
  • Fourth, maintain a satisfactory self-image and a sense of competence. Once the initial shock has worn off, get back to performing those everyday routine basic life functions. Attempt to maintain a sense of pride in doing the best you can as a caring person.
  • Fifth, take care of yourself. It’s the responsible thing to do.

Here is a reflection that will help you review your life’s journey and what has prepared you for your role of caregiver, care partner. Find a quiet place where you will be free from any distractions. Make yourself comfortable and spend a few minutes just focusing on your breathing. As you breathe in, feel your body relax. As you breathe out, feel the tensions leaving your body. Let your body and mental state become calm and relaxed.

grassy slope trees-167761_640

Visualize yourself sitting under the shade of a tree, on a grassy knoll overlooking a brook. Visualize removing your shoes. In doing so, you can feel your body relax as your feet make contact with the grass. Feel the wind in your hair and on your face.

You are aware that you have been on life’s journey for a long time. Therefore, give yourself permission to take a rest and savor the journey upon which you have embarked. You are reflecting upon where you have come from, where you are going, and what has been the purpose of your life. You envision your life’s experiences as an education—an experiential education.

You begin to look at your past life through telescopic lens and you can see a path of steppingstones leading from the house/hospital/place where you were born to the grassy knoll where you are now sitting. You see how each steppingstone has brought you to where you are at this given moment in time. Through the telescopic lens you can see the sequence of your life’s experiences in which one stone connects to the other. It is like a thread that weaves itself in and around each stone, connecting one to another. In the process, the patterns and meanings of your life unfold. What up until this time has felt like a random disconnected series of events, now seem like the necessary steps in a journey towards enlightenment.

Do you wonder what lies ahead? In the distance you can see a hairpin curve obliterating what lies around the corner and beyond. Do you wonder whether you would be able to navigate the journey that lies ahead?

You remember that there have been significant turning points along your life’s journey. There were roads taken and roads not taken. Can you identify which moments were the important  turning points in your life? There were many obstacles along your journey, but now you envisage them as opportunities for growth.

 Each steppingstone is uniquely yours, to guide you, to define your pathway or journey through life. It is a way of creating yourself, defining who you are. There are times when you may feel as though you are “between a rock and a hard place” because the choices are limiting. Remember, you do have the choice to change your attitude.

How would you like your continued journey to unfold? It is like portaging – what do you carry with you, and what do you leave behind? What do you choose to bring with you to the next place? What is the baggage that is weighing you down…slowing you down and depriving you of enjoying your journey?

When you are ready to end this time of reflection, slowly bring yourself back to the present. Write a few lines about the journey taken and the journey still to come. What has been the value for you in mapping your steppingstones?  What strengths have you discovered that you possess to deal with a crisis?

Caring for a loved one has its joys, its sorrows, its high points, and low periods. The nature of the progression of Alzheimer’s disease is ever changing. Having the confidence in your ability to take on this caregiver role will help you better cope with the changes. One of my favorite bloggers, Maria Popova, puts it this way: “It is when life bends us to its will and we don’t break that we learn what we are made of.” Realize that you possess the qualities, the “mettle,” and resourcefulness that will help you through the crisis periods.

May you experience peace, patience, courage, and joy in your caregiving journey today and everyday!

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Many thanks to Merle Stern, my friend and mentor, for composing this meditation. Feel free to pass it on to friends and family, but please give credit to Merle and this website.

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Here’s a song that will hopefully bring you some joy today. “Happiness is here and now. I have dropped my worries.” https://youtu.be/Q5kteKBfQ0I

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For information about the “Progoff Intensive Journal Program for Self-Development,” go to: http://intensivejournal.org/.

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If you found this blog beneficial, please share it with others to spread the information. Also “like” us on our Facebook page: https://www.facebook.com/CaregiverFamilies/.

Depression and Dementia

Fact #1: Depression is a real illness. Fact #2: Depression is not a normal part of aging. Fact #3: Depression is treatable. Fact #4: Depression and dementia can occur together.  July 9 blue forest ab61c8cfe8839edbca449dea38c53c21

According to the National Institutes of Health, most people who experience depression need treatment to get better. Up to 40% of people with Alzheimer’s suffer from significant depression, notes the Alzheimer’s Association. It is particularly common in the early stages of dementia, and for those with vascular dementia or Parkinson’s disease dementia. However, identifying depression in a person with Alzheimer’s can be difficult since dementia can cause some of the same symptoms. Dementia does complicate matters. What is a caregiver to do?

I have a wonderful niece who is currently caring for her mother-in-law who has dementia. She called recently to ask me what to do, as she thought her mother-in-law might be experiencing depression. There were several circumstances that would cause her mother-in-law to be depressed:  her husband had died during the previous year; her house was sold and she moved into a new home with her son’s young family; her sister with whom she was close was moving out of state to be with her daughter.  These were reasons enough for anyone to become depressed.  I commend my niece for suspecting that her mother-in-law was suffering from depression.

How do you know if a person is depressed? Depression is not just a low mood of feeling sad but a complex disease. It is a persistent condition in which feelings like sadness and hopelessness dominate a person’s life and make it difficult for them to cope. Depression has serious effects on one’s physical and mental functioning. Some of the triggers leading to depression include:

  • Loss of the ability to do things that you used to do that give you pleasure;
  • Loss of loved ones;
  • Changes in health;
  • Major changes in life circumstances;
  • Feelings of low self-esteem, worthlessness, undue guilt;
  • Traumatic events.

Depression also has a number of causes common to people of all ages. These include genetic factors, ongoing stress, social isolation, drug interaction, drug and alcohol use. That is why it is so important to get a diagnosis so the depression can be treated.  The organization called Alzheimer’s Australia notes: “Dementia can contribute to depression through the slow erosion of confidence and self-esteem as a person’s ability to manage their physical and social environment is affected.”  Other changes that can contribute to depression in a person with dementia are:

  • Loss of independence and increasing reliance on others;
  • Inability to go out alone;
  • Loss of ability to undertake enjoyable activities;
  • Loss of ability to carry out everyday tasks
  • High anxiety and agitation;
  • Confusion and loss of memory.

July 9 cut Jeremy Thomas StocksnapINA1ZTZAX7

Why can depression be difficult to diagnose? There is an “age bias” that it’s normal for older people to be depressed, so it’s easier to go unrecognized. Persons with dementia can have problems communicating their own symptoms to their caregivers or doctors. If there is a noticeable change in behavior and functioning over a period of a few weeks, depression might just be the reason. If you see signs, discuss this with your loved one’s primary care doctor or a geriatric psychiatrist who specializes in the treatment of depression. Proper diagnosis requires a thorough evaluation, and treatment can improve your loved one’s sense of well-being and daily functioning.

What can be done to treat depression in persons with dementia? Once it is diagnosed, there is a range of treatment options depending how severe and long-standing the depression is. It is  important to understand the cause to determine what is most appropriate. If the depression has a physiological basis, an anti-depressant medication may be required. Making a decision about which medication to use is complex. There could be possible side effects, especially if the person is taking a medication for Alzheimer’s or other physical ailments. If the primary cause is psychological or environmental, the person may be more responsive to strategies such as: a reassuring daily routine, regular physical exercise, time spent doing enjoyable activities, regular social contact, reducing exposure to overstimulating or threatening situations, art and music therapy, pet therapy.

Do caregivers experience depression? It is not unusual for you the caregiver to develop mild or more serious depression as a result of the challenges you face in providing care day in and day out. According to the Alzheimer’s Association, one third of caregivers report symptoms of depression. My father, who was caregiver for Mom for several years, took a mild anti-depressant prescribed by his gerontologist. He told me it “took the edge off” his depression. Regardless if you are a caregiver or not, everyone has negative feelings from time to time. However, if you find yourself crying frequently, are easily angered by your loved one or others, are totally drained of energy, have unrelenting negative feelings like unexpressed anger, — these may be warning signs of depression. Please pay attention to them and seek help and support for your own sake and that of your loved one. Silence about depression only makes it worse.

May you find peace, patience, and joy in your caregiving journey today and every day!

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Here is a booklet to read and download: “Depression, what you need to know”: http://www.nimh.nih.gov/health/publications/depression-what-you-need-to-know-12-2015/index.shtml.

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For more information about depression and dementia check out: https://www.alz.org/care/alzheimers-dementia-depression.asp#symptoms, and

https://fightdementia.org.au/national/support-and-services/carers/behaviour-changes/depression-and-dementia.

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For information regarding depression in caregivers, please read: https://www.caregiver.org/depression-and-caregiving.

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This song combines the glory of a setting sun and music of ocean waves with a song to calm you, “Happiness Is Here and Now”: https://youtu.be/vTnZVjioahI.

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If you found this blog beneficial, please share it with others to spread the information. Also “like” us on our Facebook page: https://www.facebook.com/CaregiverFamilies/.

A World without Alzheimer’s Disease

Memory loss is not a normal part of the aging process. Let me repeat that. Memory loss is not a normal part of the aging process. You don’t become forgetful because you are aging. Permit me to rant, as I observe the first anniversary of the launch of my website and blog.

We are the world!

We are the world!

I attended a local arts event recently and introduced myself to a young woman who was with her teenage son. We shared a small table while munching on appetizers. I mentioned that I was an author who had recently self-published my memoir of caring for my mother who had Alzheimer’s (AD). The woman’s face lit up. She said she was caring for her father who had mild cognitive impairment. Her parents had divorced years ago, so the role of caring for him fell to her as an only child. She told me that several years’ prior, her father was exhibiting some strange behavior. She took him to his family doctor at that time who said his memory loss was just part of the aging process. Only recently the doctor put him on Aricept. She explained that he was having some difficulties in the late afternoons.

I asked if her father had been diagnosed by a neurologist and was told that he hadn’t. I encouraged her to have him tested, and gave her information about our local memory disorder clinic where my mother was tested and diagnosed with Alzheimer’s and vascular dementia. I also mentioned that the clinic offered a support group for family members.

The earlier a medical professional can diagnose AD, the more time there is for long-term planning by the individual and family, and putting support and structures in place to care for the person with the disease.

I gave the woman my card and my e-mail address. I hope she has been able to get her father the help that he needs, and the support and information she will need to make her caregiving journey more effective and fulfilling.

In this day and age, I think it is a crime that family doctors who deal with elderly patients aren’t more aware of symptoms of Alzheimer’s or other forms of dementia. Age-related memory changes are not the same thing as dementia. Permit me to try to make the distinction between temporary forgetfulness and memory loss in those of us who are aging.

Age-related Forgetfulness                                            Memory Loss

Forgetting names at times  vs Forgetting what your relationship is to that person
Forgetting temporarily where you put your car or house keys  vs Forgetting what the key is used for
Forgetting briefly while in the car where you need to turn to get to the store  vs Not finding your way home
Momentarily forgetting the day of the week  vs Not knowing the month or year
Walking into a room and forgetting why you entered  vs Not remembering where your bathroom is

Stress, infections, and medications can also cause memory issues. But further testing, rather than assumptions, is what’s really needed to determine the source of this memory decline. Don’t let your doctor get away with this age bias. It is important to pay attention to patterns of forgetting information. They can be markers to help determine the difference between normal aging and pathological aging.

Alzheimer’s is a fatal disease. Yet, according to a study published March 5, 2014, in the journal Neurology, researchers found that the number of deaths in 2010 due to AD in people 75+ could be six times higher than the official count. This would have made AD the THIRD leading cause of death behind heart disease and cancer. Instead, it was listed as the SIXTH cause of death in this age group. By 2050, the number projected to die of AD is 1.6 million, or 43% of all older adult deaths.

A study by The National Institute on Aging* notes: “Underreporting of AD as a cause of death on death certificates is a well-known phenomenon. Many others have dementia-related conditions, such as aspiration pneumonia listed as the primary cause of death, while the underlying disease, AD, is never reported.”  When I read this, I went to check my mother’s death certificate. Cardiopulmonary arrest/arterosclerotic heart disease is listed as her immediate cause of death. Hypertension, dementia, and osteoporosis are given as “significant conditions contributing to death.”

Alzheimer’s now afflicts about 35 million people worldwide. Until we as a society face the need to advocate for Alzheimer’s research and a cure, we will not come close to a world without the disease. The Alzheimer’s Association reports that only 45% of people with Alzheimer’s or their caregivers report being told of their Alzheimer’s diagnosis.

To be part of a solution is empowering. I promise to do my part to continue to inform and advocate. Here are a few considerations for all of us to come together to help create a world without Alzheimer’s:

  • Help break the “stigma” of living with AD. Don’t be afraid or embarrassed to talk about the disease and how it impacts your loved one and your family. Keep informed of the latest research in the field.
  • Help advance vital research. Check out the clinical trials and studies in your area and participate. You don’t need to have dementia to qualify. The Alzheimer’s Association has a free service called TrialMatch that will send you information about research near where you live. You can decide if you want to participate or not. There’s no obligation when you register.
  • Raise funds for important research. The Alzheimer’s Association plans annual walks and other fundraising efforts that you can support through participating and/or with a financial donation.
  • All parts of our communities can organize to adopt dementia friendly practices for the good of all. Talk to your pastor, rabbi, imam, your congressional representatives, and to local business owners to make our religious institutions, local communities, and businesses more “dementia friendly.” This website has information how to get started: http://www.actonalz.org/dementia-friendly-toolkit.

I will observe the first anniversary of launching this website on June 30. It is also my Mom’s ninth death anniversary. In the past year, I have covered a variety of topics from sundowning, to caregiver guilt, to the role of music, from communicating with children and teens, to the communication challenges of aphasia. You can check out these and other topics by going to my website’s archive at the right hand side of this article. Then choose a past blog by topic or month. I encourage you to pass along any of the links to help your family and friends share in your caregiving journey.

Thank you to all who have been following my blog as subscribers, making comments, and sharing your own journeys. Thanks also goes to my husband for his love and support, to my sister Marcia for providing editorial and artistic support, to Merle Stern for her beautiful meditations, and to my friend Priscilla Dunning for sharing her poems.

I look forward to another year of providing information and resources so you know that you are not alone. This reminds me of a popular song I used to sing as a child, “Side by Side.”  One of the lines of the lyrics goes: “We don’t know what’s coming tomorrow, maybe it’s trouble and sorrow, but we’ll travel the road, sharing our load, side by side.”

It’s going to take all of us to spread our knowledge and experience, and to advocate on behalf of those who cannot. I have great hope that someday in my lifetime there will be a world without Alzheimer’s disease!

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Frankie Lane and Kay Starr perform her hit song, “Side by Side:” https://youtu.be/xuWFdxmJNgg.

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Dr. Jennifer Ashton explains some of the early warning signs of Alzheimer’s in this video: https://youtu.be/EGHdHsAfmdQ.

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Check this recent news release from John Hopkins about the need for early diagnoses: http://www.hopkinsmedicine.org/news/media/releases/lack_of_diagnosis_creates_added_risks_for_those_with_dementia.

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If you haven’t seen my webinar with Mike Good of “Together in This,” with tips on managing caregiver stress, check it out here: http://togetherinthis.com/trove-tips-managing-stress/.

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If you found this blog beneficial, please share it with others to spread the information. Also “like” us on our Facebook page: https://www.facebook.com/CaregiverFamilies/.