caregivers

Mindfulness training can improve quality of life for memory impaired and their caregivers

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Medical News Today: 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 was published 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.

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Yoga can enhance quality of life and slow cellular aging in caregivers

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For every individual who’s a victim of Alzheimer’s — some 5.4 million people in the United States alone — there’s a related victim: the caregiver. Spouse, son, daughter, other relative or friend; the loneliness, exhaustion, fear, and most of all stress and depression, takes a toll

While care for the caregivers is difficult to find, a new study out of UCLA suggests that using yoga to engage in very brief, simple daily meditation can lead to improved cognitive functioning and lower levels of depression for caregivers.

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Dr. Helen Lavretsky, professor of psychiatry at the UCLA Semel Institute for Neuroscience and Human Behavior, and colleagues report a further benefit as well: a reduction in stress-induced cellular aging.

The report appears in the current online edition of the International Journal of Geriatric Psychiatry.

As the U.S. population continues to age over the next two decades, the prevalence of dementia and the number of family caregivers who provide support to these loved ones will increase dramatically. Currently, at least five million Americans provide care for someone with dementia. The detrimental burden on them, in terms of their own lives, can be severe.

For example, says Lavretsky, who also directs UCLA’s Late-Life Depression, Stress and Wellness Research Program, “We know that chronic stress places caregivers at a higher risk for developing depression. On average, the incidence and prevalence of clinical depression in family dementia caregivers approaches 50 percent. Caregivers are also twice as likely to report high levels of emotional distress.” What’s more, many caregivers tend to be older themselves, leading to what Lavretsky calls an “impaired resilience” to stress and an increased rate of cardiovascular disease and mortality.

While medication can improve depression, many caregivers may be opposed to the use of medication because of the associated cost and drug side-effects. That consideration motivated Lavretsky and her colleagues to test a brief mind-body intervention for stress reduction.

The researchers recruited 49 family caregivers who were taking care of their relatives with dementia. Their ages ranged from 45 to 91 years old and included 36 adult children and 13 spouses. The participants were randomized into two groups. The meditation group was taught a brief, 12-minute yogic practice that included an ancient chanting meditation, Kirtan Kriya, which was performed every day at the same time for eight weeks. The other group was asked to relax in a quiet place with their eyes closed while listening to instrumental music on a relaxation CD, also for 12 minutes every day at the same time for eight weeks.

At the end of the eight weeks the researchers found that the meditation group showed significantly lower levels of depressive symptoms and greater improvement in mental health and cognitive functioning, compared with the relaxation group. In the meditation group, 65 percent showed a 50 percent improvement on a depression rating scale, and 52 percent of the group showed a 50 percent improvement on a mental health score. This compared to a 31 percent depression improvement and a 19 percent mental health improvement for the relaxation group.

The researchers also found that meditation increased telomerase activity and thus slowed cellular aging. Telomerase is an enzyme that maintains the DNA at the ends of our chromosomes, known as telomeres. Telomeres are associated with a host of health risks and diseases, which may be regulated in part by psychological stress. In the absence of telomerase activity, every time our cells divide, our telomeres get shorter and shorter, until eventually, they become so short the cells die. If high telomerase can be maintained or promoted, though, it will likely promote improvement in telomere maintenance and immune cell longevity.

In the study, the meditation group showed a 43 percent improvement in telomerase activity compared with 3.7 percent in the relaxation group.

“Although the relation between mental and physical health has been previously documented, the mechanistic links are beginning to be understood at the cellular level,” said Lavretsky.

“To a varying degree, many psychosocial interventions like this have been shown to enhance mental health for caregivers,” she said. “Yet given the magnitude of the caregiver burden, it is surprising that very few interventions translate into clinical practice. The cost of instruction and offering classes may be one factor. Our study suggests a simple, low-cost yoga program can enhance coping and quality of life for the caregivers.”

The pilot results were “striking,” she said, given the improvements that were shown in mental health, cognition, and telomerase activity over a short eight weeks at a mere 12 minutes a day. “We found that the effects on cognitive and mental functioning and telomerase activity were specific to the Kirtan Kriya. Because Kirtan Kriya had several elements, including chanting, mudras (hand gestures) and visualization, there was a ‘brain fitness’ effect in addition to stress-reduction that contributed to the overall effect of the meditation.” Lavretsky plans a follow-up study to provide further confirmation of this potential mechanism in a neuroimaging study of Kirtan Kriya.

Recently, UCLA launched its new Alzheimer’s and Dementia Care Program, which provides comprehensive, coordinated care as well as resources and support to patients and their caregivers. Lavretsky has incorporated yoga practice into the caregiver program.

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“Ten Thousand Joys and Ten Thousand Sorrows”: an interview with Olivia Ames Hoblitzelle

Ten Thousand Joys and Ten Thousand Sorrows,

This book is intensely personal. Was it difficult to write?

Yes, at times it was difficult to write, but I felt a great sense of purpose. just before Hob died, I promised him that I would write a book and his voice would be in it. That became like a covenant between us. Also, I felt compelled to write the book. I realized that our background with meditation and the wisdom traditions gave us valuable perspectives which could be helpful to others. I hadn’t seen any books about how spiritual perspectives or practices could help with Alzheimer’s, and that’s what had helped us more than anything. In fact, the book can be helpful for people dealing with any serious illness and no matter what their spiritual tradition.

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How did Buddhism and meditation help you and Hob to deal with his illness?

More than anything else, our Buddhist practice and understanding made a profound difference to both of us in handling his decline. Through meditation one learns to find an inner refuge – a place of stillness – in the midst of all the changes and challenges. When we accept how much we can’t control, that everything is impermanent, we can begin to step out of our struggle with life. Meditation helps one develop equanimity and acceptance of whatever comes up, and that is a great help in dealing with the losses and heartbreak of Alzheimer’s. To be realistic, meditation is not a panacea, but it is a tremendous support for which both of us were very grateful.

Title: Ten Thousand Joys and Ten Thousand Sorrows: A Couple’s Journey Through Alzheimer’s
Author: Olivia Ames Hoblitzelle
Publisher: Tarcher/Penguin
ISBN: 978-1-58542-827-4
Available from: Amazon.co.uk or Amazon.co.uk Kindle Store, and Amazon.com or Amazon.com Kindle Store.

How did Hob’s way of viewing his illness – and the world – help you to accept the situation?

He had a great sense of humor and a wry outlook on life. That helped a lot. Humor breaks the tension of difficult situations. It’s a gift because it shifts perspectives and allows you to laugh. On one level, he couldn’t believe he had this diagnosis. Even quite far along, he kept saying he was going to beat it. On another level, he was totally open and told everyone he had Alzheimer’s, which bowled people over. Many people don’t know there is something wrong with them or else never talk about it. I think Hob’s openness was a great help to him and everyone around him. Certainly it was for me.

Were any positive shifts in your relationship brought about by Hob’s illness?

The most important shift was the deepening of our love for each other. I kept reminding him that we were in this together, and that I would stand by him to the end. I tried to feel into his situation, to walk in his shoes, as the expression goes. Often my heart broke open with compassion and love for him. The frictions of relationship pretty much fen away, and you realize that you’re mainly living with the love. That’s a hidden blessing.

There was also a big shift from his fierce independence to his needing to become more dependent on me. I both accepted that reality and suffered with it. Both of us went through a gradual process of surrender – for him, to the inevitability of his losses; for me, to accept that those losses were “in the natural order of things,” one of my favorite expressions for keeping a balanced perspective.

Being Hob’s primary caregiver, was it difficult to balance his needs with your own? How did you work though frustration?

Keeping one’s balance is a constant issue! Burn out is a huge hazard for all caregivers, so was determined to honor my own needs. I arranged for regular time away to write, meet a friend, be in nature, or just let down. I asked good friends to come and be with Hob, take him for a walk, have lunch with him. I thought about this balance issue a lot and plenty of times I lost it!

When I got worn out and frustrated, I’d do anything to get a tiny respite; go to the garden, just sit and breathe, or be alone for a cup tea. Sometimes I was so exasperated, I’d drive off and in the privacy of my car, I’d shout or roar — any sound that helped to release my pent-up feelings. Sometimes I broke down, and it turned out tears were the most important relief.

Or I’d do exactly the opposite, surprising even myself. I’d choose to move toward him, push through my own feelings, and say, “I need a hug.” That would totally soften the frustration. I came to see that as a kind of spiritual practice, because I was choosing to make a loving gesture instead of collapsing into my own feelings.

How did you and Hob handle tough subjects like death and loss?

We were really fortunate here. First of all, we had our meditation background. Meditation is about acceptance and letting go, invaluable qualities in the face of loss. Then we had both been involved with hospice work where you’re constantly living with issues of death and dying. Finally, we could both talk about the subject of death relatively easily, and we did. Even with some of our closest friends when he was talking about wanting to end his life early.

With Alzheimer’s, loss seems to be a constant reality. Sometimes Hob grieved his losses, but given his nature, he usually made light of them. Other times he simply couldn’t believe what was happening to him As for me, I grieved quietly because my sadness upset him, and why add that to his burdens? Anybody dealing with Alzheimer’s will tell you what a heartbreaking illness it is. I think we do a lot of our grieving as we go along in both little and big hits. It’s important to acknowledge and feel the grief That’s human, after an, and if you don’t, it’s apt to come out in physical symptoms.

What is the ‘doorway practice’ and how did it help you during Hob’s last months?

The doorway practice evolved after he began passing out unexpectedly, and I realized that any of these episodes could be the final one. So whenever I came to the door of the room where he was resting, for example, I’d prepare myself for the fact that he might have died. This inner preparedness came to me naturally. Mysteriously, it wasn’t heavy at au. Rather, it intensified the preciousness of life, of our time together, and yet let me be prepared for whatever might happen. I know it helped me deal with his passing out episodes with equanimity That doorway practice would arise spontaneously. I’d feel remarkably calm determined and strong. Again meditation helped me a lot. One could say meditation is a preparation for crisis management!

What general advice would you offer to someone who is caring for a partner with Alzheimer’s?

  • Accept that this is one of the most difficult challenges you’ll ever face.
  • When you realize that you’re their lifeline in a dissolving world, every supportive and loving gesture is a gift to them.
  • For me, when one of my spiritual teachers suggested that caregiving was an opportunity for me to practice the positive qualities of compassion, patience, generosity, and kindness, it helped give meaning to the humblest of tasks.
  • Have compassion for yourself when you feel frustrated, impatient, or angry, because caring for an Alzheimer’s patient is a Herculean task.
  • Ask friends and family for help! People want to help out, and there’s a real risk in becoming isolated.
  • Know what gives the patient comfort or reassurance. For us, it was always touch, physical closeness, music and beauty.

There are many more answers to this question in the Reflections, Suggestions, and Seed Thoughts at the end of each chapter.

How has your life changed since Hob’s death?

Obviously losing one’s spouse is a heart wrenching loss, but I was determined to continue living as fully as possible. And I did. By writing the book, I was integrating the enormity of the experience and harvesting the insights that come with retrospect- a complex mix of grieving, creativity, and honoring our last chapter together. My greatest wish is that the book continues to be helpful, and hopefully our gift to others facing similar challenges.

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“Ten Thousand Joys and Ten Thousand Sorrows,” by Olivia Ames Hoblitzelle

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Ten Thousand Joys and Ten Thousand Sorrows

To be clear from the start, this book is worthy of the rich praise it has received. The inner jacket liner contains three pages crammed with accolades from what could be easily construed as the Who’s Who of leading contemporary spiritual leaders and health professionals. The book is a moving and loving story of this extraordinary couple’s experience.

It is a love story. It is a love story written from the deeply touching and personal perspective of a remarkable woman living through her equally remarkable husband’s dementia and death. The book covers the six years from his first symptoms to his death as she emotionally lived the various pieces of their life together as it changed profoundly. The book is drawn from her journals, giving the reader the direct expression of her emotions as they went through her.

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The theme and tone of the book are both poignantly captured in a phrase that is the Postlude to the narrative, “Dance me to the End of Love,” a line drawn from a Leonard Cohen poem. The book is a dance in its delicate movement, its cadence and its intimate flowing emotion. The reader is watching lovers dance, from inside one of the dancers. It is sweeping love story between two extraordinary people who, as we learn from the book, and feel from its author, have each lived extraordinary lives.

Title: Ten Thousand Joys and Ten Thousand Sorrows: A Couple’s Journey Through Alzheimer’s
Author: Olivia Ames Hoblitzelle
Publisher: Tartcher/Penguin
ISBN: 978-1-58542-827-4
Available from: Amazon.co.uk or Amazon.co.uk Kindle Store, and Amazon.com or Amazon.com Kindle Store.

The extraordinary qualities of the writer, of her husband and of their lives together are stamped throughout the book, from the jacket liner to the back cover. This entices the reader; gives a sense of wonder and awe to the experience of the close connection with their lives, their struggles and their needs, each of them, to come to so ordinary a thing as death. It is a strength of the book; two sparkling, talented people who lives have soared above us in a glorious flight of remarkable accomplishments, experiences, encounters, facing together an ignoble debilitating illness and the commonness of death. This also is a puzzle for the reader.

What is so very extraordinary about the lives of the writer and her husband removes them from what is all too ordinary, the plight of most people and families who face the same challenge. When we bring to mind the estimated 5.4 million Americans who suffer from Alzheimer’s Disorder, and their 14.9 million unpaid caretakers we are carried to a different and less exalted reaction than the one we are left with at the end of this beautiful and extraordinary experience. Every family’s story, of course, is different and singular.

What is incongruent is that we cannot conceive of most of these millions (millions that will swell in a few decades to tens of millions in what has been described as an epidemic) as extraordinary. We cannot conceive of these millions having the resources financially for the care that is described in “Ten Thousand Joys and Ten Thousand Sorrows”. We cannot imagine millions having the homes in Vermont and in Cambridge, Massachusetts. We cannot imagine millions with the support of a large network of loving and distinguished friends, and of renowned spiritual leaders. We cannot imagine millions dying peacefully in their homes surrounded by loving caregivers.

In this way the ordinary and the extraordinary are juxtaposed too nearly. We suspect the wreckage of dementia on the many millions and their families is something quite different than what this book has told of. We suspect that so many die alone. We suspect that so many are broken by the financial impossibilities of good care. We suspect the isolation and loneliness of those families who cannot afford care, who chose to leave their jobs to care for their stricken relatives, whose world then becomes a small one of long and weary days and sleepless nights. We know of the number caretakers who die early, earlier than their loved one with Alzheimer’s. We know of those who live with Alzheimer’s much longer than the six years described so movingly by Olivia Hoblitzelle, many of whom, unlike her husband, dwell in silence or are unable for years to remember who is in the room with them or what they did or said two minutes ago.

So we remind ourselves that “Ten Thousand Joys and Ten Thousand Sorrows” is a particular story about particular people. It is a tender and touching love story that can give us comfort and inspiration. It is not about us. But may still be a help to us. The “Suggestions” at each Chapter’s end may be practical reminders for some of us. The “Seed Thoughts” also at the conclusion of each Chapter will be consistently useful to us (“May I cultivate compassion toward myself and others”, May I find new ways of handling my negative emotions.” “May I accept the challenge of this situation”, “Let me be calm”).

“Ten Thousand Joys and Ten Thousand Sorrows” is uplifting for us in the way that all stories of courageous struggle are. And it brings that us that sweet and painful poignancy of all powerful love stories.

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