Caregiving

Improve Dementia Patients and Their Caregivers with Mindfulness

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Mindfulness dementia2 Paler

By John M. de Castro, Ph.D.

 

“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. 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.” – Sandra Weintraub

 

Dementia is a progressive loss of mental function produced by degenerative diseases of the brain. Dementia patients require caregiving particularly in the later stages of the disease. Alzheimer’s disease is the most common type of dementia and accounts for 50 to 70 percent of dementia cases. Other types of dementia include vascular dementia, mixed dementia, dementia with Lewy bodies and frontotemporal dementia. For Alzheimer’s disease alone, there are an estimated 10 million caregivers providing 9 billion hours of care at a value of over $100 Billion dollars.

 

Caregiving for dementia patients is a daunting and all too frequent task. It is an intense experience that can go on for four to eight years with increasing responsibilities as the loved one deteriorates. In the last year, 59% of the caregivers report that they are effectively on duty 24/7. Over time dementia will lead to loss of memory, loss of reasoning and judgment, personality and behavioral changes, physical decline, and death. The memory and personality changes in the patient may take away all those characteristics that make the loved one identifiable, unique, and endearing, producing psychological stress in the caregiver. The feelings of hopelessness can be overwhelming regarding the future of a patient with an irreversible terminal degenerative illness. In addition, caregivers often experience an anticipatory grief associated with a feeling of impending loss of their loved one. If this isn’t bad enough, a little appreciated consequence is that few insurance programs cover dementia care outside of the hospital. So, medical expenses can produce extra financial strain on top of the loss of income for the caregiver. It is sad that 72% of caregivers report relief when their loved one passes away.

 

Obviously, there is a need to both care for the dementia patients and also for the caregivers, for all types of caregiving but particularly for dementia. They play an essential and often irreplaceable role. So, finding ways to ease the burden is extremely important. Mindfulness practice for caregivers has been shown to help them cope with the physical and psychological demands of caregiving. In addition, mindfulness training has been found to help protect aging individuals from physical and cognitive declines. So, it would make sense to combine mindfulness training of the patients and caregivers as a pair.

 

In today’s Research News article “Benefits of Mindfulness Training for Patients with Progressive Cognitive Decline and their Caregivers.” See:

https://www.facebook.com/ContemplativeStudiesCenter/photos/a.628903887133541.1073741828.627681673922429/1247548971935693/?type=3&theater

or below or view the full text of the study at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4363074/

Paler and colleagues provided an 8-week mindfulness training program for Alzheimer’s Disease patients and their caregivers. They were also given homework exercises on CDs to be practiced for 30-60 minutes daily. They found that the training produced an increase in quality of life, improvement in cognitive executive function, and a decrease in depression and sleep problems for both the patients and caregivers. The vast majority of the participants were pleased with the program and felt that they were less stressed and better able to cope with stressful circumstances and their relationships had improved.

 

These results are outstanding and suggest that combined mindfulness training for both patients and caregivers is a safe and effective method to improve the emotional state, cognitive ability, quality of life, sleep, and stress management for both. The efficiency of training both at the same time is important as the feasibility of implementing the program increases as the demands on time decrease. Mindfulness training is known to improve emotion regulation and depression, cognitive processes, improve sleep, decrease the psychological and physical responses to stress, and improve relationships in normal people. It is important that this study established that this is also true for dementia patients and their caregivers.

 

It should be noted that there was no control or comparison condition. So, it is impossible to make a strong conclusion that the mindfulness program itself produced the improvements. A randomized Controlled Trial (RCT) is needed to confirm these results. Nevertheless, the results are exceptionally promising and provide the rationale to implement an RCT. The authors do note, however, that recruitment of patients and caregivers for a control group would likely be extremely difficult.

 

So, improve dementia patients and their caregivers with mindfulness.

 

“Mindfulness involves attentive awareness with acceptance for events in the present moment. 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.” – Ken Paler

 

CMCS – Center for Mindfulness and Contemplative Studies

 

This and other Contemplative Studies posts are available  on Google+ https://plus.google.com/106784388191201299496/posts

 

Study Summary

Paller, K. A., Creery, J. D., Florczak, S. M., Weintraub, S., Mesulam, M.-M., Reber, P. J., … Maslar, M. (2015). Benefits of Mindfulness Training for Patients with Progressive Cognitive Decline and their Caregivers. American Journal of Alzheimer’s Disease and Other Dementias, 30(3), 257–267. http://doi.org/10.1177/1533317514545377

 

Abstract

New strategies are needed to help people cope with the repercussions of neurodegenerative disorders such as Alzheimer’s disease. Patients and caregivers face different challenges, but here we investigated an intervention tailored for this combined population. The program focused on training skills such as attending to the present moment nonjudgmentally, which may help reduce maladaptive emotional responses. Patients participated together with caregivers in weekly group sessions over 8 weeks. An assessment battery was individually administered before and after the program. Pre-post analyses revealed several benefits, including increased quality-of-life ratings, fewer depressive symptoms, and better subjective sleep quality. In addition, participants indicated that they were grateful for the opportunity to learn to apply mindfulness skills and that they would recommend the program to others. In conclusion, mindfulness training can be beneficial for patients and their caregivers, it can be delivered at low-cost to combined groups, and it is worthy of further investigation.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4363074/

Biomarkers Predict Mindfulness’ Effectiveness for Caregivers

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By John M. de Castro, Ph.D.

 

“mindfulness isn’t just a technique to cope with the stress; it’s a way to fully embrace one’s role as a caretaker, living in the present moment with joy and appreciation, no matter what that moment may bring.” – Elisabeth Dykens

 

There are many characteristics that all human being have in common, but there are also huge individual differences. Virtually everything about us is to some extent unique, including experiences, and physical and psychological characteristics. There is no other face exactly like ours. There is no other brain exactly like ours. There is no other mind exactly like ours. There is no other mind exactly like ours. There is no other personality exactly like ours. These differences are wonderful and define our individuality and uniqueness. There has never been nor will there ever be anyone exactly like you.

 

This uniqueness extends to our reactions to environmental and physical events and even extends to our responses to treatments. One of the most exciting trends in modern medicine is individualized medicine. It has been realized that people respond differently to treatments. The same drug, procedure, or therapy that cures one person will have negligible effects on another, and may harm yet another. So, tailoring the treatment to the individual can maximize effectiveness. In order to do this predictors, biomarkers, are needed. These are measurable characteristic that predict that a certain treatment will be effective for that person. So cancer treatment now includes genetic analysis looking for particular genes that predict that an individual will respond to one treatment rather than another.

 

Mindfulness training has been shown to be an effective treatment for a myriad of psychological and physical conditions, including the psychological and physical problems that develop while providing care for an Alzheimer’s patient. But, this effectiveness is “on average.” While many people are helped, some are not, and some even get worse. In order to improve the effectiveness of mindfulness training it would be helpful to identify who is likely to respond positively and who is not. To do this, predictors, markers, of responsiveness are needed. To date, there have been few studies that attempt to identify predictors, markers, of responsivity to mindfulness training.

 

In today’s Research News article “Biomarkers of Resilience in Stress Reduction for Caregivers of Alzheimer’s Patients.” See:

https://www.facebook.com/ContemplativeStudiesCenter/photos/a.628903887133541.1073741828.627681673922429/1228448170512440/?type=3&theater

or below

Ho and colleagues took blood samples from non-professional adult caregivers for Alzheimer’s patients prior to and after an 8-week Mindfulness Based Stress Reduction (MBSR) training. They found, confirming the majority of findings in the research literature, that the MBSR course produce significant increases in the mindfulness and the psychological health of the caregivers. In addition, they found that the greater then increase in mindfulness, the greater the improvements in psychological health.

 

Ho and colleagues also found considerable individual differences in the degree of improvement. They then separated the caregivers in three groups based upon the amount of benefit in psychological health obtained from the MBSR training; poor, moderate, and good responders. They used measures of gene expressions in these three groups to investigate potential predictors of responsiveness to MBSR training. They found that genes associated with the modulation of the inflammatory response, stress responses, and depression were highly expresses in caregivers who responded to MBSR training.

 

These results are not surprising as mindfulness training has been previously shown to improve the inflammatory response, stress responses, and depression. Unfortunately, these results do not demonstrate cause and effect. It is equally likely that the improved psychological health produced the changes in gene expression as it is that the changes in gene expression produced the improvements in psychological health, or that some third factor might be responsible for both.

 

To look for possible causal factors, they then looked at gene expressions present before the MBSR training in the various groups. They found that expressions of genes prior to treatment that modulate the immune system and the insulin system were predictive of positive responses to treatment. It has previously been shown that mindfulness training produces improvements in the immune system. But, it has not been previously demonstrated that the state of the immune system prior to mindfulness training would be associated with positive outcomes.

 

These are fascinating results and again demonstrate the effectiveness of Mindfulness Based Stress Reduction (MBSR) training for caregivers. But, importantly, the study identifies biomarkers, gene expressions, that predict the individual’s likelihood of having positive improvements in psychological health produced by MBSR training. Caregivers who showed heightened expressions in genes that improve the immune system were those that obtained the greatest benefit. It will require future research to identify how heightened immune system activity might be responsible for MBSR effectiveness.

 

Regardless, the study demonstrates that biomarkers predict mindfulness’ effectiveness for caregivers. This suggests that it may be possible in the future to tailor mindfulness training based upon individual differences in gene expression, maximizing the effectiveness of the therapy.

 

So,

 

“I have discovered that it isn’t so much about what I did or did not say or do that was key to pass on to professionals and family members — it was more about the way in which I was being with the persons who have dementia that seemed important to communicate. […] Each person with dementia has taught me the importance of relaxing into being in the present moment. That moment may be perceived by her to be in a different place or time, but it is her very real and present moment.” –  Nancy Pearce

 

CMCS – Center for Mindfulness and Contemplative Studies

 

Study Summary

 

Ho L, Bloom PA, Vega JG, Yemul S, Zhao W, Ward L, Savage E, Rooney R, Patel DH, Pasinetti GM. Biomarkers of Resilience in Stress Reduction for Caregivers of Alzheimer’s Patients. Neuromolecular Med. 2016 Mar 17. [Epub ahead of print] PMID: 26984114

 

Abstract

Caregiving for a dementia patient is associated with increased risk of psychological and physical health problems. We investigated whether a mindfulness-based stress reduction (MBSR) training course for caregivers that closely models the MBSR curriculum originally established by the Center of Mindfulness at the University of Massachusetts may improve the psychological resilience of non-professional caregivers of Alzheimer’s disease patients. Twenty adult non-professional caregivers of dementia patients participated in an 8-week MBSR training course. Caregiver stress, depression, burden, grief, and gene expression profiles of blood mononuclear cells were assessed at baseline and following MBSR. MBSR training significantly improved the psychological resilience of some of the caregivers. We identified predictive biomarkers whose expression is associated with the likelihood of caregivers to benefit from MBSR, and biomarkers whose expression is associated with MBSR psychological benefits. Our biomarker studies provide insight into the mechanisms of health benefits of MBSR and a basis for developing a personalized medicine approach for applying MBSR for promoting psychological and cognitive resilience in caregivers of dementia patients.

 

Mindful Motherhood

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Mindful Motherhood

 

By John M. de Castro, Ph.D.

 

“There could not be a better time to learn mindfulness than during pregnancy and early motherhood. For one thing, this is a time when most people have a strong motivation to become the best person they can be in a relatively short period of time. When you realize the full enormity of the responsibility you have taken on by becoming a mom, the primary source of care for another whole human being, not to mention one that you love more than you thought you could ever love, there is a really high level of motivation to try your best to get yourself into the best mental and emotional shape possible.” – Cassandra Vieten

 

Mothers’ Day was basically invented and promoted by the greeting card and florist industries. But, even though its origins were crass, the idea took off, because it hit upon a truth; that we all love our mothers. As a result, Mothers’ Day has become a culturally accepted and encouraged time for the celebration of motherhood and all that it means. The deep bonds and love that virtually everyone feels for their mothers and their mothers for them fuels the celebration of the holiday.

 

Motherhood is ubiquitous. Everyone has a mother, who in turn, has had a mother, who has had a mother, etc. Many are, or want to be mothers. It plays an immensely important role in our individual and societal existence. The bond that develops between mother and child is a beautiful, virtually unbreakable, thing, perhaps the strongest bond between individuals that exists. It is essential for ensuring the nurturance that is mandatory for the life of the virtually helpless infant and the development of the child. The effectiveness, or lack thereof, of mothering has a major impact on the offspring that continue throughout their lives. It is such an important role that it seems reasonable to explore what goes into successful mothering and child rearing and what might be of assistance in improving mothering. There has accumulated a tremendous amount of scientific evidence that mindfulness, (“awareness that arises through paying attention, on purpose, in the present moment, non-judgementally”) can be an important asset for mothers, from conception, to pregnancy, birth, nurturing the infant, and childrearing and the mindfulness of the child can be an important asset for its development. So, on this day celebrating motherhood, we’ll explore the role of mindfulness.

 

Mothering does not occur in a vacuum. It’s been said that “It takes a village” to rear a child. Indeed, motherhood is embedded in a community. There are many people who are either directly or indirectly involved, from the father, to the extended family, the community, the medical profession, teachers, clergy, social workers, childcare workers, and even the government. So relationships become an essential part of mothering from conception, to birth, and family and social life. Mindfulness has been found to be important to becoming a mother in the first place. Mindfulness makes the individual more attractive to the opposite sex, it improves sexual relationships, it helps to relieve infertility, and it improves relationships in general. All of which underscores the importance of mindfulness in improving the likelihood that conception will occur and that childbirth will be born into a supportive social context.

 

Mindfulness continues to be helpful during pregnancy. It can help to relieve the anxiety and depression that commonly accompany pregnancy and even appears to benefit the neurocognitive development of the infant. After birth mindfulness continues to be of assistance as it improves caregiving and parenting, even in the case where the child has developmental disabilities. Mindfulness not only helps the parents deal with the stresses of childrearing, but developing mindfulness in the child can be of great assistance to helping the kids develop emotionally and cognitively, develop high level thinking, develop healthy self-concepts, develop socially, deal with stress, and cope with trauma and childhood depression. It even improves the child’s psychosocial development and academic performance and grades in school. In addition, it seems to be able to assist children through the troubled times of adolescence.

 

It should be clear that mindfulness is an important component of motherhood. Why would this be so? There are a number of reasons that mindfulness helps. It reduces the psychological and physical effects of stress on the mother and let’s face it, pregnancy, birth, caring for infants and raising children can be quite stressful. Mindfulness also improves emotion regulation making the mother better able to be in touch with her emotions yet react to them adaptively and effectively. Mindfulness helps the mother maintain her health and well-being, and to recover quicker should she become ill. After all, mothers can’t take sick leave or take vacations.

 

The essential capacity developed in mindfulness training is paying much greater attention to what’s occurring in the present moment. This can be of immense help to the mother. It makes her better attuned to her child’s and to her own needs. It reduces rumination and recriminations about past mistakes. It tends to diminish the worry and anxiety about the future. It helps her to focus on what needs to be done now, making her much more effective. And it helps her to experience the joys of motherhood to their fullest. In general, by focusing on now, she is tuned into the only time that matters for herself or her child, improving her relationship with reality, dealing with its problems and relishing its wonders.

 

Hence, mindfulness can make mothering better, both for the mother, and the child. So, on this important day of celebration of mothers, let’s adopt mindfulness and make it a part of our relationship with our mothers and our children. We may all love our mothers but we love mindful mothers even more especially when we ourselves are mindful.

 

“For me, the program gave me the freedom to be the kind of mom I wanted to be, instead of just reacting automatically. I still have difficult moments, and can get stressed out, but the mindfulness helps me stay centered and stay connected to myself and my baby.” – Cassandra Vieten

 

 

CMCS – Center for Mindfulness and Contemplative Studies

 

Improve Caregiving for Developmental Disabilities with Mindfulness

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By John M. de Castro, Ph.D.

 

“mindfulness practices could be helpful for . . . caregivers because they encourage a nonjudgmental interpretation of their child’s situation, and increased acceptance of their reality. Mindfulness practices also help people observe their thoughts and behaviors with less reactivity and judgment, which could enable caregivers to better respond to the emotional and physical difficulties they encounter.” –  Emily Nauman

 

Four in ten adults in the U.S. are caring for an adult or child with significant health issues, up from 30% in 2010. Caring for a loved one is an activity that cuts across most demographic groups, but is especially prevalent among adults ages 30 to 64, a group traditionally still in the workforce. Caring for children and adults with intellectual and developmental disabilities can be particularly difficult. Developmental disabilities are a group of conditions due to an impairment in physical, learning, language, or behavior areas. These conditions begin during the developmental period, may impact day-to-day functioning, and usually last throughout a person’s lifetime. Recent estimates in the United States show that about one in six, or about 15%, of children aged 3 through 17 years have a one or more developmental disabilities.

 

Today, most people with intellectual and developmental disabilities live with their families. This places many stresses on the caregivers and their families and stretches their financial resources. Due to these issues, people with severe cases of intellectual and developmental disabilities are often cared for in community and group homes. The staff of these homes, like family caregivers are under high levels of stress for many reasons including that many individuals with intellectual and developmental disabilities are highly aggressive and at time combative.  They sometimes require physical restraint and can cause injuries to the caregiver and to other patients. In addition, the high levels of stress and injury results in many staff leaving. It should be clear that there is a need for methods to reduce the stress, and burnout of caregivers in community and group homes. Mindfulness training has been found to be helpful for caregivers in the home setting. So it would be reasonable to expect that mindfulness training may also be helpful for caregivers in community and group homes.

 

In today’s Research News article “Caregiver Training in Mindfulness-Based Positive Behavior Supports (MBPBS): Effects on Caregivers and Adults with Intellectual and Developmental Disabilities”

https://www.facebook.com/ContemplativeStudiesCenter/photos/a.628903887133541.1073741828.627681673922429/1202660149757909/?type=3&theater

or see below, or for a full text see:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4746712/

Singh and colleagues implemented a 10-week Mindfulness-Based Positive Behavior Support (MBPBS) training for caregivers of individuals with intellectual and developmental disabilities in community and group homes. The training added practice with meditation to a standard Positive Behavior Support (PBS) program. The PBS program “is designed to decrease an individual’s problem behaviors by teaching new skills, modifying the environment where the problem behaviors occur, and enhancing quality of life.” It was hypothesized that the addition of mindfulness training would magnify and supplement the effectiveness of the PBS program.

 

Singh and colleagues found that the MBPBS training resulted in a significant decrease in the use of physical restraint and significant decreases in injuries to staff and other patients. There were also significant reductions in the staff’s perceived stress levels and turnover rate. The reduced stress and injuries resulted in a highly significant reduction in institutional costs. These results clearly demonstrate that the MBPBS training is effective for caregivers. It is not clear, however, whether the meditation training was responsible, the Positive Behavior Support training or both. It remains for future research to identify which components are necessary and sufficient for improvement of caregivers well-being.

 

Regardless, it is clear that the combination of meditation to Positive Behavior Support (PBS) training produces important improvements for the staff, patients, and institution in caregiving for individuals with intellectual and developmental disabilities in community and group homes.

 

“caregivers and patients found that the mindfulness training actually helped improve their relationships with each other. Mindfulness places both people in the present and in positive emotion; the two sides share this experience with a bit of freedom from the baggage of their history. . . . such gentle, positive interaction helped defuse the ongoing stress of a caregiver dynamic, and it helped build a stronger relationship in the present.” – Adam Perlman

 

CMCS – Center for Mindfulness and Contemplative Studies

 

 

Study Summary

Singh, N. N., Lancioni, G. E., Karazsia, B. T., & Myers, R. E. (2016). Caregiver Training in Mindfulness-Based Positive Behavior Supports (MBPBS): Effects on Caregivers and Adults with Intellectual and Developmental Disabilities. Frontiers in Psychology, 7, 98. http://doi.org/10.3389/fpsyg.2016.00098

 

Abstract

Caregivers often manage the aggressive behavior of individuals with intellectual and developmental disabilities that reside in community group homes. Sometimes this results in adverse outcomes for both the caregivers and the care recipients. We provided a 7-day intensive Mindfulness-Based Positive Behavior Support (MBPBS) training to caregivers from community group homes and assessed the outcomes in terms of caregiver variables, individuals’ behaviors, and an administrative outcome. When compared to pre-MBPBS training, the MBPBS training resulted in the caregivers using significantly less physical restraints, and staff stress and staff turnover were considerably reduced. The frequency of injury to caregivers and peers caused by the individuals was significantly reduced. A benefit-cost analysis showed substantial financial savings due to staff participation in the MBPBS program. This study provides further proof-of-concept for the effectiveness of MBPBS training for caregivers, and strengthens the call for training staff in mindfulness meditation.

 

Improve Caregiver Quality of Life with Yoga

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“Caring for someone with dementia is made up of an infinite number of small moments where we can go either way, adding more stress or bringing more ease. The problem when we are not mindful is our words come out and our actions unfold too quickly for us to have a chance to choose the wisest, most beneficial route. Mindfulness practice slows us down and takes some of the edge off our reactive tendencies.” – Marguerite Manteau-Rao

 

Caregiving for dementia patients is a daunting and all too frequent task. It is estimated that over 15 million Americans are dementia caregivers. It is an intense experience that can go on for four to eight years with increasing responsibilities as the loved one deteriorates. In the last year, 59% of the caregivers report that they are effectively on duty 24/7. It is sad that 72% report relief when their loved one passes away.

 

This long and difficult process can take a major toll on the caregiver. On a practical level they frequently experience financial problems from lost income and have their careers interrupted. But, the greatest problems occur due to the intense levels of stress experienced by the caregivers. Around 2/3rd of caregivers report high emotional stress and over 1/3rd report high physical stress. This stress, in turn can have emotional consequences with over 1/3rd of caregivers reporting depression and many report family problems. In addition, dementia caregivers are more likely to have physical issues such as high levels of stress hormones, reduced immune function, increased hypertension, and coronary heart disease. Needless to say caregivers need care for themselves.

 

Reducing stress is very important for dementia caregivers. Stress not only jeopardizes their own health but also the quality of care they provide for their loved ones. Since mindfulness training has been shown to be effective in reducing both the psychological and physical responses to stress (see http://contemplative-studies.org/wp/index.php/category/research-news/stress/), it would seem be potentially useful for the relief of caregiver stress. Indeed, mindfulness training has been shown to reduce stress and depression, improve the quality of caregiving, and improve the quality of life for the caregiver (see http://contemplative-studies.org/wp/index.php/category/research-news/caregiving/). Hence, it would seem reasonable to further explore mindfulness practices to care for the caregiver.

 

In today’s Research News article “Yoga and compassion meditation program improve quality of life and self-compassion in family caregivers of Alzheimer’s disease patients: A randomized controlled trial”

https://www.facebook.com/ContemplativeStudiesCenter/photos/a.628903887133541.1073741828.627681673922429/1170247206332537/?type=3&theater

Danucalov and colleagues applied an 8-week program of yoga and compassion meditation to a group of female Alzheimer’s caregivers and compared their response to those of a wait-list control group. At the end of yoga and compassion meditation training in comparison to before training and to the control group, the yoga group reported significant improvements in their quality of life including physical, psychological, environmental, and social domains. They showed increased mindfulness, improved vitality both immediately and in general, and increased self-compassion and self-kindness.

 

These findings are remarkable and potentially important. Yoga and compassion meditation training markedly improved the psychological and physical conditions for the caregivers producing a major improvement in quality of life. Training also increased their vitality which is critical given the intense fatigue that the caregiving can produce. How this practice might produce these benefits was not explored. But, the documented ability of yoga practice in reducing stress responses would seem a likely explanation. In addition, the compassion meditation may be a useful component as Loving Kindness Meditation has been shown to improve self-compassion and kindness toward others (see http://contemplative-studies.org/wp/index.php/category/contemplative-practice/loving-kindness/).

 

Regardless of the explanation, it appears clear that mindfulness training is effective in improving the physical and psychological problems experienced by dementia caregivers.

 

So, improve caregiver quality of life with yoga.

 

“Many of us follow the commandment ‘Love One Another.’ When it relates to caregiving, we must love one another with boundaries. We must acknowledge that we are included in the ‘Love One Another.” ― Peggi Speers

 

CMCS – Center for Mindfulness and Contemplative Studies

 

Ease Caregiver Problems with Mindfulness

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“Many of us follow the commandment ‘Love One Another.’ When it relates to caregiving, we must love one another with boundaries. We must acknowledge that we are included in the ‘Love One Another.” ― Peggi Speers

 

Providing needed care for others, particularly loved ones can be very satisfying and rewarding. It may be an opportunity to provide care for someone who provided care for you. It may be an opportunity to express your love for another in a tangible way. It can be a joyful experience. But, particularly over time, caregiving can wear the caregiver out and the stress and sacrifices required begin to take their toll. As a result caregivers experience high levels of anxiety and depression, sleeplessness, physical exhaustion, weakening of the immune system can occur, opening the caregiver up to diseases, burnout, and feelings of hopelessness. All of which leads to an increase in the mortality rate of caregivers.

 

Dementia is a progressive loss of mental function produced by degenerative diseases of the brain. Dementia patients require caregiving particularly in the later stages of the disease. Alzheimer’s disease is the most common type of dementia and accounts for 50 to 70 percent of dementia cases. Other types of dementia include vascular dementia, mixed dementia, dementia with Lewy bodies and frontotemporal dementia. For Alzheimer’s disease alone, in 2008 there were an estimated 9.9 million caregivers providing 8.5 billion hours of care at a value of $94 Billion dollars.

 

Caring for an individual with dementia can be particularly challenging. Over time dementia will lead to loss of memory, loss of reasoning and judgment, personality and behavioral changes, physical decline, and death.  If this isn’t bad enough, a little appreciated consequence is that few insurance programs cover dementia care outside of the hospital. So, medical expenses can produce extra financial strain on top of the loss of income for the caregiver.

 

Dementia is particularly difficult for caregivers and can produce higher levels of stress than other forms of caregiving. The memory and personality changes in the patient may take away all those characteristics that make the loved one identifiable, unique, and endearing, producing psychological stress in the caregiver. The feelings of hopelessness can be overwhelming regarding the future of a patient with an irreversible terminal degenerative illness. In addition, caregivers often experience an anticipatory grief associated with a feeling of impending loss of their loved one.

 

Obviously, there is a need to care for caregivers, for all types of caregiving but particularly for dementia caregivers. They play an essential and often irreplaceable role. So, finding ways to ease the burden is extremely important. Mindfulness practice for caregivers has been shown to help them cope with the physical and psychological demands of caregiving (see http://contemplative-studies.org/wp/index.php/category/research-news/caregiving/). In today’s Research News article “Feasibility of Central Meditation and Imagery Therapy for Dementia Caregivers”

https://www.facebook.com/ContemplativeStudiesCenter/photos/a.628903887133541.1073741828.627681673922429/1139767462713845/?type=3&theater

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4106977/

Jain and colleagues provided an 8-week meditation and guided imagery mindfulness program to caregivers for family members with dementia. The practice resulted in significant reductions in the caregiver’s levels of anxiety and depression. It reduced levels of insomnia and increased mindfulness. These improvements were still evident three months later. On a more subtle level the caregivers reported qualitative shifts in their relationships with the dementia patients, including greater understanding and compassion, improved ability to manage their day-to-day caregiving, and reduced arguing.

 

Mindfulness practice focuses the individual on the present moment. This reduces worries about the future and ruminations about problems in the past. This is very helpful for dementia caregivers making them better able to attend to what is needed now and to spend less time catastrophizing, feeling remorse, or experiencing anticipatory grief. Mindfulness practice is also known to reduce the psychological and physical responses to stress. This would obviously be helpful for the caregiver. Finally, mindfulness practice is known to improve emotion regulation so that the caregiver can allow themselves to feel and experience their emotions but at the same time respond to them in a constructive and productive way. This has to be very helpful in dealing with the sometimes overwhelming emotions consequent upon dementia caregiving.

 

The Jain and colleagues study was a pilot program and as such had only a small group of participants and no control group. The results are exciting enough that it is certainly justified to launch a major randomized controlled trial of the effectiveness of mindfulness training to ameliorate the negative consequences of dementia caregiving.

 

So, ease caregiver problems with mindfulness.

 

“Many caregivers share that they often feel alone, isolated, and unappreciated. Mindfulness can offer renewed hope for finding support and value for your role as a caregiver…It is an approach that everyone can use. It can help slow you down some so you can make the best possible decisions for your care recipient. It also helps bring more balance and ease while navigating the caregiving journey.”  ― Nancy L. Kriseman

 

CMCS – Center for Mindfulness and Contemplative Studies

 

Caring for Caregivers

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12002302_1087914934565765_1103847075675365960_n.jpg

“If you want others to be happy, practice compassion. If you want to be happy, practice compassion.” – Dalai Lama

 

There is a tremendous demand for caregiving in the US. It is estimated that over 65 million (29% of the adult population) provides care to someone who is ill, disabled or aged, averaging 20 hours per week spent caring for their loved ones. In addition, caregiver demand is increasing due to the increase in our older adult population. But, this caregiving comes at a cost to the caregiver. It exacts an economic toll in lost work hours, income, and even the opportunity to take a promotion or relocate for a better position. But, more significantly, it exacts a tremendous toll on caregivers’ health and well-being. Caregiving has been associated with increased levels of depression and anxiety as well as higher use of psychoactive medications, poorer self-reported physical health, compromised immune function, and increased mortality.

 

Palliative care of a dying loved one is particularly difficult as the emotional toll supplements the time and energy demands of the caregiving. The adverse effects of providing the care increase over the course of the disease, particularly as death approaches and tend to continue with bereavement. Hence there is a need to care for the caregivers. They are providing much needed care and support for the terminally ill family member, but need care and support themselves. This care for the caregiver is often totally lacking.

 

Mindfulness practice has been shown promise in improving the health and well-being of caregivers (see links at the bottom). Is it also effective for individuals providing end-of-life care? In today’s Research News article “Evaluating the effects of mindfulness-based interventions for informal palliative caregivers: A systematic literature review”

https://www.facebook.com/ContemplativeStudiesCenter/photos/a.628903887133541.1073741828.627681673922429/1087911851232740/?type=1&theater

Jaffray and colleagues review the literature exploring this question. They report that the published literature shows that mindfulness practice reduces depression and caregiver burden and increases quality of life in informal caregivers of palliative care.

 

The effect sizes for the reported improvements were moderate. This suggests that mindfulness practice is helpful but is not a miracle treatment for this difficult situation. This indicates that there is need for further study to try to identify what sorts of practices are most effective to improve the effectiveness of mindfulness techniques.

 

Some studies obtained interviews with the caregivers who reported that the practice increased acceptance of the care recipient’s illness, as well as of the self and family, increased a sense of presence, increased the sense of peace and reduced stress, and decreased the reactivity response to difficult care recipient behavior. These reports are interesting and suggest that the mindfulness practice may be having its effects by improving non-judgmental awareness of the present moment. This is exactly what mindfulness practices are aimed at developing. These reports also suggest that improved emotion regulation may also be responsible for the improvements, allowing the caregiver to be more in touch with their emotions and improving their ability to respond appropriately to the emotions.

 

So, caregivers should practice mindfulness to care for themselves.

 

CMCS – Center for Mindfulness and Contemplative Studies

 

 

LINKS

Mindfulness practice improves the stress levels experienced by caregiver for autistic children (see http://contemplative-studies.org/wp/index.php/2015/07/17/mindfulness-and-caregiving/) and in caregiving for spouses with chronic pain (see http://contemplative-studies.org/wp/index.php/2015/08/18/have-a-healthy-relationship-with-mindfulness/).

Have a Healthy Relationship with Mindfulness

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Relationships can be challenging especially when one partner has medical needs that need to be provided by the spouse. This puts great strain on a relationship and engenders a wide range of emotional responses from compassion, to guilt, to anger, to depression.

In a previous post we discussed how mindfulness training can be employed to help relieve pain http://contemplative-studies.org/wp/index.php/2015/07/17/mindfulness-the-pain-killer/. But, how does mindfulness affect pain in a social environment? In particular, can mindfulness in a caregiver make it easier to assist a chronic pain patient? In today’s Research News article “Spousal Mindfulness and Social Support in Couples with Chronic Pain”

https://www.facebook.com/ContemplativeStudiesCenter/photos/a.628903887133541.1073741828.627681673922429/1070466376310621/?type=1&theater

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4013202/

Williams and colleagues explore this very question and find that spouses with high mindfulness were better caregivers.

When a spouse was high in mindful non-judging and non-reacting they were much less likely to meet a spouses behavior with negative responses. Spouses who mindfully act with awareness are perceived by the pain patient as more responsive, providing more support, and less negative. These characteristics are very important for maintaining a positive and supportive environment. Hence, the spouse’s mindfulness has a big impact on their ability to maintain an atmosphere conducive to effective assistance with chronic pain. It is always good to have empirical evidence, but the results here are not surprising. They fit with how mindful people act in general. They are more positive, empathetic, less critical and handle stress better.

Mindfulness has been shown to increase emotion regulation, the ability to feel emotions fully and to effectively respond to them. A spousal relationship, especially when taxed by one partner having a medical condition, can be full of emotion. For a healthy relationship these emotions must not be denied or suppressed but fully felt yet without allowing them to produce behaviors that would make things worse. This emotion regulation characteristic of mindful individuals may underlie why they can be effective caregivers.

Another stress of caring for a chronically ill person is that the caregiver can perceive the future negatively. It would be easy to catastrophize, by seeing things to be bad and getting worse leading to an intolerable situation. This could lead to a feeling of hopelessness. In addition, the interactions with the ill spouse can then be colored by the vision of a terrible future. Mindfulness, by focusing the caregiving spouse on the present moment and appreciating what is right in front of him/her can mitigate catastrophizing. This has been well documented in the research literature. This obviously would lead to better interactions and more effective caregiving.

Finally, caregiving can be very stressful. This can lead to negative emotions and can be detrimental to the caregiving spouse’s health. Since mindfulness training has been well documented to reduce responses to stress, both emotional and physical, the impact of the stress on the mindful spouse would be mitigated.

So, be mindful and have a better relationship even when your spouse is ill.

CMCS

 

Burnout Burnout with Mindfulness

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Stress is epidemic in the western workplace with almost two thirds of workers reporting high levels of stress at work. In high stress occupations burnout is all too prevalent. This is the fatigue, cynicism, and professional inefficacy that comes with work-related stress.

Healthcare is a high stress occupation. It is estimated that over 45% of healthcare workers experience burnout with emergency medicine at the top of the list, over half experiencing burnout. With there being a shortage of doctors and nurses preventing existing healthcare workers from burning out is a priority.

How can burnout be prevented or mitigated? One potential treatment is mindfulness training. A study investigating mindfulness’ association with burnout in emergency room nurses is reported in today’s Research News article “Protective benefits of mindfulness in emergency room personnel. Journal of affective disorders”

https://www.facebook.com/ContemplativeStudiesCenter/photos/a.628903887133541.1073741828.627681673922429/1066150153408910/?type=1&theater

Westphal and colleagues report that indeed stress is prevalent in the ER. It is most frequently associated with interpersonal conflicts and large numbers of consecutive days working. But mindfulness appeared to help as high mindfulness was associated with lower levels of anxiety, depression, and burnout in the ER nurses.

Mindfulness may help in this high stress context by helping with the interpersonal conflicts that are reported to be at the root of their stress and burnout. Mindfulness has been shown to improve interpersonal relationships and social connectedness. This may be very helpful in dealing effectively with co-workers and thereby reducing stress and improving social resources for dealing with the stress.

Mindfulness has also been shown to reduce distress contagion. This occurs when one person observes another suffering a disease or injury and experiences in one’s physical body a similar or related distress. This is common in nurse–patient relationship particularly with empathetic nurses. In fact, this distress contagion is the physical equivalent to empathy. By reducing this distress contagion mindfulness may be reducing stress and burnout.

Mindfulness has also been shown to improve emotion regulation. Mindful people are better at recognizing their emotions and responding to them effectively. Mindful people experience emotions fully, but recognize them and don’t let them dictate what they do. This allows them to work effectively in an emotionally charged environment like the ER.

Finally, mindfulness is known to reduce the psychological and physical responses to stress. Being mindful doesn’t inoculate the individual from stress. Rather it blunts stress’ effects on them. This occurs on a physical level with lower stress hormone responses and lower sympathetic activation in response to stress. It also occurs on the psychological level with less anxiety and depression produced by the stress.

So, burnout burnout with mindfulness!

CMCS

Mindfulness and Caregiving

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People often choose or are thrust into the role of caregiver.  They are often the primary provider of services for healthy, seriously ill, or special needs children. They may care for elderly, often parents, but possibly for siblings, or other relations. They care for the sick from chronically seriously ill, to hospice care, to temporarily incapacitated. There are a wide variety of situations and contexts. But, in common to all is great stress and hardship on the caregiver.

Caregivers face many challenges that can take a toll on them. Burnout is common. Their own health is often compromised as the stress takes its toll. The modern emphasis on in-home care has increased the magnitude of the problem. It is important to find ways to assist caregivers so that they can continue to provide the needed care without serious compromise to their own health or well-being.

Mindfulness is not a solution, but it can help. This is exemplified in today’s Research News article, “Mindfulness-Based Positive Behavior Support (MBPBS) for Mothers of Adolescents with Autism Spectrum Disorder: Effects on Adolescents’ Behavior and Parental Stress.”

Mindfulness training for the caregiver with an autistic child is shown to not only reduce caregiver stress, but improve the behavior of the child, reducing the onerousness of the task.

How does mindfulness help caregivers?

Mindfulness training has been repeatedly demonstrated to improve attention.  By being more attentive and screening out irrelevant stimuli the individual becomes more focused on the other person. Being attuned to another makes the caregivers responses better aligned with what the other needs making caregiving more efficient and effective.

Another way that mindfulness training can be of help is through improved emotion regulation. Mindfulness is associated with a heightened ability to recognize and manage one’s own emotions. In caregiving it is easy to react to your own emotions and as a result respond inappropriately or ignore the actual needs of the other person. So, the caregiver can be much more effective by being able to better regulate their own emotions.

Mindfulness training has also been shown to reduce stress and responses to stress. This can be of direct benefit to the caregiver in dealing with the stress of caregiving. This can in turn improve both the caregiving and also the health and well-being of the caregiver.

It should be emphasized that caregiving is complex and very demanding. Mindfulness training is not a magical solution to the issues confronted by the caregiver. It does, however, appear to help, making both the caregiving and the caregiver better.

So, be mindful and be better equipped to provide care to others when needed.

CMCS