New Coping Strategy for the Memory Impaired and Their Caregivers

One of my best tools as a caregiver is the practice of mindfulness.

I mention mindfulness today because I’ve just read about a study of mindfulness training as a way to help people with early-stage dementia and their caregivers. You can read the article below, but first, some background.

How Mindfulness Helps Me in Caregiving

According to the scientists at the Greater Good Science Center, “Mindfulness means maintaining a moment-by-moment awareness of our thoughts, feelings, bodily sensations, and surrounding environment.” It sounds simple, and it is, though it’s also complex, and subtle. Mindfulness takes practice.

Practicing mindfulness, for me, means paying attention to what happens in the moment and just noticing my responses, without judging myself for what I think and feel. As I learned in holistic nurse Pamela Katz Ressler’s Mindfulness-Based Stress Reduction course a few years ago, mindfulness is not about setting and achieving a goal, but about repeatedly practicing an attitude of nonjudgmental awareness. I can practice mindfulness formally, in meditation, or informally, in my everyday life.

Mindfulness, for me, is a simple three-step process:

  1. I notice what is happening, both in my mind and body, internally, and outside me, in the world.
  2. I watch as my mind slips away into thoughts and feelings about the past and the future.
  3. I bring my mind back to the present moment and notice what is happening again.

As a caregiver, mindfulness helps me because it helps me stay focused and attentive in challenging moments, no matter what is happening. When I’m shocked or startled by a sudden symptom that one of my clients is experiencing, mindfulness helps me regain my balance. When I’m slogging through a rough patch in my personal life, mindfulness helps restore my energy and courage.

Mindfulness Training for Early-Stage Dementia Patients and Their Caregivers     

Given how helpful mindfulness training has been for me, I heartily recommend it for caregivers. But what about people with memory issues? Can mindfulness training be adapted to help dementia patients, too, despite their cognitive impairments? Northwestern University researchers are reporting success, at least for people in the early stages of the disease. Below is Northwestern’s article describing the study results, which are receiving wide attention in the news.

Mindfulness training can brighten outlook on life for person with memory loss and caregiver

CHICAGO — Mindfulness training for individuals with early-stage dementia and their caregivers together in the same class was beneficial for both groups, easing depression and improving sleep and quality of life, reports new Northwestern Medicine study.

“The disease is challenging for the affected person, family members and caregivers,” said study lead author Ken Paller, professor of psychology at Weinberg College of Arts and Sciences at Northwestern and a fellow of the Cognitive Neurology and Alzheimer’s Disease Center at Northwestern University Feinberg School of Medicine. “Although they know things will likely get worse, they can learn to focus on the present, deriving enjoyment in the moment with acceptance and without excessive worry about the future. This is what was taught in the mindfulness program.”

The study will be published August 25 in the American Journal of Alzheimer’s Disease and Other Dementias.

Neurodegenerative diseases such as Alzheimer’s are particularly hard on caregivers, who are often close family members. They tend to have an increased incidence of anxiety, depression, immune dysfunction and other health concerns as well as an increased mortality rate, according to prior studies.

This is the first study to show that the caregiver and the patient both benefit from undergoing mindfulness training together. This is important because caregivers often don’t have much time on their own for activities that could relieve their emotional burden.

The training also helps the patient and caregiver accept new ways of communicating, scientists said.

“One of the major difficulties that individuals with dementia and their family members encounter is that there is a need for new ways of communicating due to the memory loss and other changes in thinking and abilities,” noted study co-author Sandra Weintraub, a professor of psychiatry and behavioral sciences at Feinberg and a neuropsychologist at Northwestern Memorial Hospital. “The practice of mindfulness places both participants in the present and focuses on positive features of the interaction, allowing for a type of connection that may substitute for the more complex ways of communicating in the past. It is a good way to address stress.”

The study included 37 participants including 29 individuals who were part of a patient-caregiver pair. Most of the patients were diagnosed with dementia due to Alzheimer’s disease or mild cognitive impairment, often a precursor to dementia. Others had memory loss due to strokes or frontotemporal dementia, which affects emotions as well as speaking and understanding speech. Caregivers included patients’ spouses, adult children, a daughter-in-law and a mother-in-law.

Although the individuals with Alzheimer’s had mild to severe memory loss, they still were able to use other cognitive functions to participate in the mindfulness training and to experience emotion and positive feelings, Weintraub noted.

The participants attended eight sessions designed specifically for the needs of patients with memory loss due to the terminal neurodegenerative illness (dementia) and for the needs of their caregivers. Both groups completed an assessment within two weeks of starting the program and within two weeks of completing it.

Paller had expected mindfulness to be helpful for dementia caregivers based on previous research in the field. But he was uncertain whether a program would be successful for patients with memory impairments and whether patients and their caregivers could be trained together.

“We saw lower depression scores and improved ratings on sleep quality and quality of life for both groups,” said Paller, director of the cognitive neuroscience program. “After eight sessions of this training we observed a positive difference in their lives.”

“Mindfulness involves attentive awareness with acceptance for events in the present moment,” Paller said. “You don’t have to be drawn into wishing things were different. Mindfulness training in this way takes advantage of people’s abilities rather than focusing on their difficulties.”

Developing mindfulness is about learning different habits and a person has to practice a new habit for it to stick, Paller noted.

Paller said he hoped the study findings would encourage caregivers to seek out resources for learning mindfulness for themselves and the individuals with illness.

SOURCE: New coping strategy for the memory impaired and their caregivers.

THE STUDY: Read the study.Editor’s Note: Thanks to Marc Onigman of Stone Hearth News for calling my attention to this study. — MAB 

 

Notebook: International Harvester Memory

International Harvester Truck photo by Christopher Ziemnowicz

International Harvester B-120 Flatbed Truck, Red, photo (cropped) by Christopher Ziemnowicz, via Wikimedia Commons.

Editor’s Note: Cars and trucks are vehicles of memory as well as transportation. When you look back at your life, what cars do you remember? This is a fruitful topic of conversation with our elderly loved ones, as well as a tool for our own thoughts. I wrote this little piece in an online writing class I’m taking at GrubStreet, the creative writing center in Boston. — MAB

I am riding in a red International Harvester truck in Ensenada, Baja California, Mexico, on the way to some scenic location that Norman thinks we should visit. I am twelve years old. I am angry.

It is full sun coming through the window, sun on my arm, sun bouncing up and down through the glass window, off Norman’s face and my mother’s face and my sister Katherine’s braids.

My mother sits between me and Katherine and Norman. The truck is painted the kind of bright red that you see in Spanish paintings of bullfighting, which is a red flag in my eyes. I taste salt on my lips because I am evaporating in the sun. I can’t see Katherine but I feel she is not as angry as I am.

“I’m going to throw up,” I say. I open the door and fall down off the step of the truck and slam the door behind me, out there in the sun in Mexico. I start walking back to our house at Estero Beach. I will walk all the way home so Norman can’t tell me what to do the way he does.

I’m walking.

Norman’s driving past me. He steers his truck right in front of me, cutting me off.

I see the barbed wire fence along the side of the road. If I climbed it, I could escape to the sea. There would be sand, air, sun, salt.

“Come back, Mary Ann,” my mother says. “Come back.”

Looking back, riding, what emerges is this precise memory. Sorry heat. Dry sweat. Salt.

PS: For another post inspired by family memories, see “Dear Judy, When My Mother Read the Part of Job’s Wife.” — MAB

 

 

Demystifying Home Care

Editor’s Note: The following essay began as a guest post for OpenPlacement, a company that links seniors and their families with providers of senior housing and home care services. In writing this piece, I’ve relied on my experiences as a professional caregiver, but the views expressed are my own, not those of my employer, and I did not receive any compensation for the essay. The client in the story, Mrs. Josie Delancey, is not a real person, but the issues underlying her fictional character are drawn from real life. — MAB

Woman Sitting by the Window (detail) by Tivadar Kosztka Csontváry

Woman Sitting by the Window (detail) by Tivadar Kosztka Csontváry, via Wikimedia Commons.

Every few months, I find myself standing on the doorstep of a new client, ringing the doorbell.

Who will she be? I wonder, this new member of the community of elders whom I meet in my work as a certified nursing assistant and companion to elders.

What family photographs will I see on her walls, what medicines on the table by her bed?

Will I have the skills she needs? Will she accept help from me, a person she’s never met?

Looking back on these moments of mystery on the doorstep, I’m struck by how high the stakes are when we try to help frail and vulnerable people as they grow older. When a family calls my agency to ask about home care, chances are this is just one step in a long journey. Perhaps their mom is struggling to cope at home with illness or injury. Perhaps their World-War-II-veteran husband has escalating memory problems that trigger agitation or even rage. Even in more fortunate circumstances, asking an elderly person to consider home care is a big step.

My hope in this essay is to demystify home-care by telling you something about it from my point of view as a practitioner with eight years of experience in the field. This work is by its very nature private, yet as the baby-boomer generation ages, there will be more and more elders who need the assistance of direct-care workers in order to live safely at home. That’s why I write about my experiences — taking care, of course, to preserve client confidentiality by changing any identifying details about my clients and their families.

Client Story: Mrs. Josie Delancey

Suppose you are an adult daughter named Alicia, and I’m here to help your mother, Mrs. Josie Delancey. You and your mother have met with my agency’s staff to discuss her situation. At age 85, Mrs. Delancey has been living alone in your family home since your dad died five years ago. But lately you and your three siblings have seen a big decline in her health. She was hospitalized twice in the past year, once with pneumonia and more recently with a fractured wrist. Her arthritis makes it difficult for her to stand up from a seated position. She’s no longer able to drive, and has become increasingly sad and listless. Her once-immaculate house fills up each week with discarded newspapers and used cat-food cans. She’s been losing weight and needs help with using the toilet as well as cooking, cleaning, medication reminders, and rides to the grocery store.

As you can see in this scenario, you and your mother have already given us lots of information that will help me do a good job. My supervisor has worked with you to set up a care plan that specifies what tasks your mother does independently, where she needs a little help, and where she needs substantial assistance.

Home Care Map

Indeed, since my agency uses secure email and web-based documentation tools, the information flows quickly and easily between the family and the client, agency supervisors, and caregivers like me in the field. Today, as I meet your mother and set about making her breakfast, I have a mental Home Care Map in my head that will grow and change with each visit.

Home Care Map for Mrs. Josie Delancey

Client Home Care Map

Tools of Support

Included in my mental Home Care Map is a list of intangible Tools of Support. It’s been my experience that the emotional support a caregiver can offer is just as important as the assistance we provide our elderly clients in the activities of daily living. As caregivers, we need both strong arms and kind smiles. When clients or family members resist care, or when something about our presence triggers some negative response from a client, we need to be able to work with the situation as tactfully as possible.

I remember visiting a friend of mine who was under hospice care, years ago, before I embarked on my career as a caregiver. I noticed that the hospice caregiver would help my friend get situated on the toilet and then wait outside the bathroom, with the door barely ajar. It was a small detail, but my sense was that in respecting my friend’s privacy at this vulnerable moment, the caregiver was supporting her independence and autonomy.

Appreciating Family Caregivers

Finally, I would like to express my appreciation for the family caregivers with whom I have worked over the years. A couple of years ago, I worked with a family caring for their 82-year-old father. He loved baseball, so for Father’s Day his son bought him a tablet device with a link on the home page to the Baseball Hall of Fame website. He especially loved the online exhibit, Picturing America’s Pastime. Looking at the pictures and telling stories about games he remembered gave this elderly man hours of enjoyment. I’ll always remember the thoughtfulness of the son’s gift and the joy it gave his father.

About the Author

Mary Ann Barton is a certified nursing assistant, elder companion and blogger who writes about health, healing, and caregiving for elders, their family members, and their paid and volunteer care partners. She finds joy in singing and is writing a book about finding rest and renewal as we care for others. See more by clicking here.

The Biology of Fleshly Pleasure

 

Purple paisley stretching out from yellow ground, by Mary Ann Barton. Inspired by Zentangle: 06/25/2012

Purple Paisley Stretching Out from Yellow Ground by Mary Ann Barton

Dear Readers,

Awhile ago I published a poem about love and sex called Today Love Asks Questions. While the poem was inspired by a real moment of intimacy and happiness in my marriage, it wasn’t at all explicit, or even erotic, since I’m an old-fashioned and somewhat reticent woman. After all, the last time I wrote about sex for publication was an article about a sex therapy conference for the newsletter of a women’s health clinic thirty years ago.

Still, the topic of sensuality and bodily pleasure remains relevant and interesting to me. As my doctor said to me a few years ago, “Sex is a quality of life issue no matter how long a life we have.”

Plus, in doing research for my recent conversation with my urogynecologist about surgery for pelvic floor problems, I learned that sexual activity and orgasm can have a beneficial impact on a woman’s physical health. (See, for example, Pelvic Floor Health for Women by Ellen Braatz, PT and Erin Alft, PT.)

As a professional elder-care provider who writes about aging and caregiving, I’m aware that sexuality and sensuality are extremely sensitive topics. I’m not sure how to approach this area of human experience, or even what I think about aging and sex. I just think that as I grow older and move closer to the end of my earthly journey, I’m becoming more aware of how much I treasure all the pleasures of the body.  The biology of fleshly pleasure is such a gift, such a remarkable thing in itself and such a remarkable element of an intimate relationship. I have an anticipatory nostalgia for the expansive silliness of playful interaction with a loving partner: the jokes we tell each other, the stories we remember about how we met, the pet names we murmur in the middle of the night.

Sex and love aren’t always delicious, of course. Sometimes, in our lives, there’s tragedy and betrayal, or tragedy and pain, or tragedy and loss, or just plain tragedy. But the pleasure-and-happiness part of sex is still important.

What do you think? Is it possible to write about aging and sex without awakening the Internet trolls? Will my spam-filters be working overtime at WordPress this week? I hope not!

In any case, I trust that many of you will enjoy a chance to think deeply about aging and the fundamental pleasures of sex. Let me know how we can keep this topic in mind in ways that respect the boundaries of privacy — our own, and that of others — while acknowledging that the biology of fleshly pleasure is a fascinating part of our common inheritance.

Sincerely,

Mary Ann

PS: My poem “Today Love Asks Questions” appears below.

Today Love Asks Questions: A Prose Poem by Mary Ann Barton

Image credit: Koekkentrappestor (Kitchen Stairs) by Kristian Zahrtmann, 1908, via Wikimedia Commons.

 

 

 

 

 

Dementia Communication Strategies (INFOGRAPHIC) by Alyssa Chan

Editor’s Note: The following post was originally published by OpenPlacement, a California healthcare company. I’m sharing it here because I like the focus on finding positive ways to communicate with people affected by Alzheimer’s disease and other dementias. — MAB

It is critical to have dementia communication strategies. Because dementia gradually diminishes a person’s ability to communicate properly, it can become very difficult and complex. This requires patience, understanding and good listening skills. Below are a few suggestions in an infographic that we created on how to overcome that barrier between you and the person with dementia.

Please share this infographic if you found it [helpful]. In addition, make sure to check out and share our previous infographics with the latest featuring tips on Healthy Aging.

Dementia Communication Strategies (INFOGRAPHIC)

Dementia Communication Strategies:

  • Some signs of dementia progression affecting communication – using familiar words repeatedly, inventing new words to describe familiar objects, easily losing his or her train of thought, reverting back to a native language, having difficulty organizing words logically, and speaking less often.
  • Suggestions on communication:
    • Identify yourself and call the person by their name.
    • Offer comfort and reassurance.
    • Avoid criticizing, correction, or arguing.
    • Help with unfamiliar words.
    • Turn questions into answers.
    • Turn negatives into positives.
    • Give visual cues.
  • Most importantly be patient – It is important to keep calm and talk about the communication issues you are having. By questioning or arguing, this will cause unnecessary frustration and stress and will possibly heighten the level of agitation for the person with dementia.

Visit these sites we used to create this graphic for more information: Alzheimer’s Association and AARP.

– Alyssa Chan

You Might Also Enjoy…  Dementia Greetings: How to Say Hello to Someone with Alzheimer’s Disease