Grieving loss of cognitive abilities and sense of self in patients with dementia – how effective coping strategies can influence care: a review of the literature

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<h3>Introduction</h3> As dementia progresses, patients experience memory loss and impaired cognitive functioning, threatening their autonomy and ability to be viewed as valuable members in society. However, in the early stages of disease, patients are conscience of their decline and are still able to talk about their experience of dementia, which they often describe as one resulting in a loss of control and a loss of their sense of self - bringing feelings of despair, anger, and hopelessness. In this way, patients with dementia may be grieving the loss of their identity and cognitive abilities as they progress through the disease. Many patients will adapt problem or emotion-focused strategies to cope with unpleasant emotions and to maintain some connectedness to their self. It is increasingly acknowledged that patients with dementia, especially in the early stages, are well-adept at expressing their needs and concerns. Therefore, it is important to hear from patients directly about their life with the disease so clinicians and caregivers can adapt care to the patients' understanding of reality. Up until recently, there was a paucity of research focused on the experiences of patients with dementia. Within the last decade or so, there has been a growing body of qualitative research aimed at better understanding individuals' feelings about living with dementia and how they cope. Nonetheless, there is still limited research providing guidance on how the patients' experiences and coping strategies can inform care initiatives to reduce stigma and address grief associated with dementia. To enhance and contribute to this area of research, a literature review on grief, the experience of living with dementia, and how patients cope was conducted to help develop methods to manage grief more effectively and improve the quality of life for people living with dementia <h3>Methods</h3> A literature review for peer-reviewed publications was conducted in August 2021 to better understand how patients diagnosed with dementia experience the disease and what coping strategies they used. PubMed, Google Scholar, and Harvard Library were searched with the following key words: grief, dementia, loss, experience of patients with dementia, coping strategies. Articles were screened by title and abstract and retained if they discussed any of the key words. Articles were excluded if they were caregiver focused. Reference lists of relevant articles were hand-searched for additional publications. <h3>Results</h3> Sixteen articles were identified that addressed the experience of individuals living with dementia and the coping strategies they used to reduce negative emotions associated with their diagnosis. Recurring themes of loss - including loss of memory, cognitive abilities, and sense of self as experienced by patients were discussed. Individuals wanted to feel valued and did not want to focus on their losses and becoming a burden to others. The coping strategies mentioned can be summarized into 4 categories: (1) Keep going and holding onto life as is (2) Adapt to the demands of the situation; (3) Accept the situation; (4) Avoid the situation or deny diagnosis. Included publications did not provide recommendations for how to use this information from patients to inform care practices. All qualitative interviews collected as part of this review were conducted outside of the United States. <h3>Conclusions</h3> There is still limited qualitative research on experiences and coping mechanisms of patients with dementia, especially in the United States. There are a variety of coping mechanisms employed by patients, depending on their unique context of living with dementia. It would be beneficial to identify which coping strategies are most effective for managing grief to help inform new models of care and improve quality of life. For example, this could be done by interviewing individuals with dementia while assessing the severity of negative emotions they are experiencing over illness progression. The coping mechanisms and experiences synthesized from this review can inform how patients could be approached about their care and diagnosis. Since patients want to feel purposeful and less like a burden to others, health professionals and caregivers should routinely inquire about a patient's experiences with dementia. Asking patients how they are doing with their diagnosis and affirming that their relationship with the patient is valued could be a meaningful and supportive intervention to help a person struggling with the realities of a progressive disease. This can help reduce the stigma surrounding dementia and encourage patients to speak more openly about their diagnosis. Overall, it is important to continue listening to patients about their life with dementia to gain insight on new models of care that can improve coping skills and better manage grief, thus ensuring patients are well-supported throughout dementia progression by healthcare professionals, friends, and family alike. <h3>This research was funded by</h3> Unfunded.