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      No Relief From Pre-Loss Grief: Maintaining Mental Health for Caretakers

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      Suppose you have a close relative – perhaps a grandparent – who is terminally ill with dementia or cancer. They’re still alive but you’re already grieving life without them. You might expect your grief to ease over time, but, depending on circumstances, your grief might get worse.

      Some Unable to Escape Grip of Pre-Loss Grief

      A study by researchers at Texas Tech acknowledges that it's possible for people facing the loss of a loved one to adjust to their emotional pain but that certain factors can instead exacerbate the severity of pre-loss grief. Primary among those factors is the role of family caregivers and the burdens they endure.

      ehr emr selection guide by insync healthcare solutionsIn fact, although the study's initial assessment indicated most of the participants were experiencing symptoms of substantial pre-loss grief, one month later those symptoms had decreased for 69% of the study’s participants. The opposite, however, held true for women and participants with a high caregiver burden. Their symptoms intensified over that same one-month span.

      These findings were based on data from family members of 100 advanced cancer patients and 38 dementia patients who participated in the study.

      Was there a difference between family members with dementia and those with cancer? According to the study, yes. Researchers found that family members of patients with dementia – for whom there is no treatment, hope, or cure – were significantly more likely to experience severe pre-loss grief than the family members of cancer patients – for whom there is often some hope for treatment or cure, at least in the initial stages.

      Did it matter how long a patient had endured their life-limiting illness? According to the study, no. Participants reported similar symptoms regardless of whether their family member lived a longer or shorter time after diagnosis. These findings came as a surprise to Jonathan Singer, lead author of the OSU study.

      "People in this study had pre-loss grief at a very high rate after many years. That was shocking because one might think over time there would be some acceptance and it would get easier. But with Alzheimer's disease, it can get harder, and with cancer there could be a similar trajectory, starting with hope at the beginning but feeling worse over time.”
      Jonathan Singer


      "What's happening with these family members still struggling?" he asks. "Is it the caregiver burden? Is it that they've lost their identity? Is it that they're not engaging in pleasurable activities anymore? That's what we want to hit on next."

      Grief Expressed in Worries about Present and Future

      Singer, who is currently involved in a study of the longer-term trajectory and biological effects of pre-loss grief, told InSync Healthcare Solutions his interest in working with older adults began as a boy while spending time with some of the older folks in his neighborhood. They often had stories to share, he remembers, and there were often lessons to be learned from those stories. 

      One of the older adults in his life, of course, was his grandmother, who years ago was diagnosed with Alzheimer's. As her condition regressed, he observed his mother and aunt experiencing what he today would recognize as symptoms of pre-loss grief, though their symptoms weren't all the same. 

      "Both of them had some symptoms. Most people experience a few symptoms," he says. "But they both grieved in different ways. Everyone handles it differently. This was where my passion for working with and studying caregivers of individuals with life-limiting illness started."

      Symptoms of pre-loss grief for caregivers since learning of patient's illness can include any combination of the following:

      • Longing for the patient to return to health
      • Trouble accepting patient's illness
      • Intense feelings of emotional pain, sorrow, or grief
      • Stunned, shocked, dazed, or emotionally numb from patient's illness
      • Confusion about your role in life
      • A diminished sense of self, including a feeling that part of you has died
      • Difficulty trusting others
      • Bitter about patient's illness
      • Difficulty moving on (making new friends, pursuing new interests, for example)
      • Life feels unfulfilling, empty, or meaningless

      Singer divides pre-loss grief into two categories:

      • Anticipatory grief (AG), which is future-oriented and focuses on the fear or anticipation of losses that will occur after their family member's death (loss of loved one, financial fears, shattered dreams, etc.).
      • Illness-related grief (IRG), which is present-oriented and focuses on a longing for the family member to return to the way they were before their illness. 

      These definitions notwithstanding, it's worth noting the difficulty in distinguishing whether a person has AG, IRG, or both. Although AG and IRG fall into the present- and future-facing categories of grief, respectively, it's possible for family members to experience both at the same time.

      Grieving Process Can Extend Long After Death

      Technically, pre-loss grief is not a clinical diagnosis. However, its post-death counterpart –prolonged grief disorder in people mourning the death of a loved one – was added to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5-TR) released this year. Clinical criteria for a diagnosis include preoccupation with thoughts or memories of the lost family member combined with a number of symptoms, including:

      • Yearning and longing for the loved one
      • Intense emotional pain
      • Sense of disbelief
      • Difficulty moving on with life

      The study, which was published in the Journal of Health Psychology, found no differences in pre-loss grief at baseline or one month later based on the nature of the life-limiting illness. In a secondary analysis of the severity of reported symptoms, however, the researchers found that 10.5% of family members of dementia patients and 2% of family members of cancer patients met the criteria for a diagnosis of prolonged grief disorder.

      "We expected to see this severity in family members of patients with dementia," says Singer. "But there is a lot of hope in the cancer community, so it was a big surprise to see so much pre-loss grief in family members of cancer patients."

      Adding prolonged grief disorder to the DSM-5-TR represents progress, he adds, but the relatively new area of research on pre-loss grief demonstrates a need to consider therapies that can ease symptoms of people who are grieving for an ill loved one who is still alive.

      "There's a lot of research on anticipatory grief, which involves worry about the future. But pre-loss grief in that moment is pretty ignored," says Singer, who treated patients at the Ohio State Wexner Medical Center and is currently an assistant professor at Texas Tech University in the Psychological Sciences Department.

      "With medical advances, people are going to be living longer with life-limiting illnesses, so there will be a bigger and bigger issue with grief before the person passes away. Symptoms of pre-loss grief can predict long-term negative outcomes after a loved one's death, so this is a good intervention target that we should figure out now."."

      Jonathan Singer

      Though it's too soon to tell what types of therapies might work best, Singer notes two approaches that hold promise:

      • Behavioral activation that encourages people to engage in pleasurable activities
      • Meaning-centered psychotherapy is designed to enhance spiritual well-being and quality of life

      InSync's Approach: Specialized EHR is Best

      As an industry leader in mental health EHR software, InSync Health Solutions has its own two approaches:

      1. Different specialty practices (for example, mental health, pediatrics, physical therapy) require EHR systems specific to their needs
      2. Even within the mental health community, different practices require EHR systems tailored to the specific needs of each practice

      schedule a demo with insync healthcare solutionsToward that end, InSync offers configurable EHR software that includes everything from group scheduling and group notes to telehealth, e-Prescribing, eMAR, and custom forms.

      For a closer look at how our interoperable, mobile-friendly, and configurable software can increase efficiencies and streamline workflows in your mental health practice, schedule a demo now with one of our experts. We're happy to answer questions and explain how we can customize our system to meet your particular needs while saving you time and money. 



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