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Cultivating Strength and Compassion as Caregivers of Dementia Patients

Dr. Linda Miles

According to current statistics from the University of Michigan, approximately one in seven Americans has some form of dementia.

Compassion challenges our assumptions, our sense of self-limitation, worthlessness, of not having a place in the world. As we develop compassion, our hearts open”

— Sharon Salzberg

UNITED STATES, June 24, 2022 / — Dr. Linda Miles, an experienced psychotherapist and author, knows firsthand how heartwarming and heartbreaking it can be to care for a cherished family member who suffers from a chronic condition. Robert, her husband of 33 years, has advanced dementia. Due to this disease, he often doesn’t recognize his beloved wife. Recently, Robert and Linda renewed their vows—a reminder and promise of togetherness till the end. It’s also an embodiment of Dr. Miles’ own advice to all other caretakers: find strength by seeking and creating moments of joy amidst the suffering.
It was Robert’s idea, and Linda seized the moment. One night when she walked into the bedroom, Robert looked up and told her he had seen her at work many times. He found her smart and attractive, and he wanted to marry her. His memory, in part, was true; they had worked together as colleagues in a mental health center decades ago. He just didn’t remember that they were already married. Linda joyfully said yes to this second marriage proposal; they renewed their vows in the company of their family, with their pastor son’s blessing. 

According to current statistics from the University of Michigan, approximately one in seven Americans has some form of dementia. As the baby boomers in the United States become senior citizens, the number of people with dementia is expected to dramatically increase. The caretakers of those who have dementia or Alzheimer’s, are often referred to as the “second patient” because of the intense physical and emotional demands of this type of caretaking.

Research from the National Institute of Health (NIH) shows that when caregivers are motivated by guilt, a sense of duty, social pressure, or greed, they are more likely to feel resentful toward the person they’re helping, and experience psychological distress. On the other hand, caregivers who combine duty with the desire to show loving kindness and genuinely protect the person they care for, experience less psychological distress. Such caring is associated with positive feelings, positive brain chemicals including oxytocin and dopamine, and the increased likelihood of reaching out to others for help and support. The NIH also cites that 55-90% of caregivers enjoy the positive experiences that foster togetherness with their loved ones: shared activities, bonding, spiritual and personal growth, increased faith, and feelings of accomplishment and mastery.

Lisa Jane Miller, a researcher at Columbia University, has investigated the relationship between spirituality and mental health, and found that spirituality also protects against depression. Those who have regular spiritual practices and strong beliefs are significantly less likely to become depressed. Although the role of a caregiver can be extremely demanding around the clock, those who are most resilient have faith in a purpose greater than themselves. When duty and desire are aligned, there is increased fulfillment and reduced psychological distress.

As humans, caregivers will still experience moments of negativity and pessimism despite their best intentions and practices. When caretakers feel worn down or burned out by the role of Second Patient, they can access a wealth of resources and practices to help them regain their positivity and purpose. Dr. Miles suggests the following:

1. Be open to loving kindness in unexpected places. Dr. Miles has been touched by observing the kindness of strangers who go out of their way to help her and her husband. While struggling to get off an airplane to visit family, the pilot noticed Robert’s struggle from his cockpit and came back and helped Linda’s husband off the plane. Once, when she ran an errand, her husband fell on the driveway. A kind stranger—a restaurant delivery person—was helping him back onto his feet when she arrived. Her neighbors, upon discovering Robert’s condition after seeing an ambulance at their house, volunteered their time and help if she needed them. A handyman who came by—who had once been a caretaker for a family member with dementia—offered to be on call as needed.

2. Take care of personal health. Since caretakers are more at risk for health problems, including lower immunity and a higher risk for chronic conditions, it’s important to practice healthy diet, sleeping, exercise, and stress-mitigating lifestyle habits. Regular medical check-ups are also important.

3. Practice mindfulness and/or prayer; experts have shown that such practices are very beneficial in preventing or mitigating depression.

4. Consider hospice. Although many people think of hospice as an end-of-life service, it is available for families who are taking care of someone in the late stage of dementia. They provide hospital beds, regular medical care, certified nursing assistants, music therapy, veterans support services, and respite care if needed.

5. Reach out to a support network of family and friends. Having a trusted family member or friend to be able to share deep feelings, fears, and frustrations with is essential. Since those with dementia may not recognize their caretaker and may become hostile and aggressive toward them, it is important that the caretaker doesn’t hold in these emotions and instead is free to share their feelings in an honest and open way.

6. Seek a local or national community that provides support for caretakers and offers knowledge about the disease. Social caregivers tend to be socially isolated, so fostering connections is extremely important to their own wellbeing.

a. The Alzheimer’s Association can be accessed online; they provide 24/7 help, with professionals on call to provide resources, information, and guidance.

b. REACH (Resources for Enhancing Alzheimer’s Caregiver Health) provides online instruction, problem-solving skills training, stress management techniques, and telephone support.

Caretakers of those with dementia can individually become better or bitter based on their capacity for loving kindness toward themselves and others. To overcome challenges and find purpose in life, it is important to find the pockets of light in the darkness. It’s also essential to remember that, as in an emergency on an airplane, it’s important to first secure one’s own oxygen mask before effectively helping others do the same.

Dr. Linda Miles
Miles and Associates
+1 850-321-6612
email us here
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