Author: LING Cheuk Chi Gigi (RN, PhD), The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong
Throwback to a few years ago, a poll in UK revealed that persons over 50 are more terrified of developing dementia or getting cancer than other chronic illnesses (“Older people are more scared of”, 2014). Meanwhile, living and dying with comorbid cancer and dementia becomes increasingly prominent with the ageing population (McWilliams et al., 2018).
Family caregivers often devote a considerable time and effort in providing physical and psychosocial care to their loved ones during the end-of-life. Providing end-of-life care for persons with either dementia or cancer is well-known to be a stressful and burdensome experience (Secinti et al., 2021). The comorbidity of cancer and dementia might further amplify the intricacies of the end-of-life caregiving experience when the person’s physical, cognitive, emotional, and behavioural aspects are affected altogether at the same time by both illnesses. Understanding the unique struggles encountered by this specific group of family caregivers is essential to provide information in the development of nursing interventions to effectively support both the persons with comorbidity and their family caregivers. Nonetheless, limited studies have acknowledged this unique family caregiving experience.
In view of this, an interpretative phenomenological analysis (IPA) was employed to examine the unique end-of-life caregiving experience among family caregivers of persons with comorbid dementia and cancer (PwDnC). Twenty-one family caregivers of deceased PwDnC with diverse backgrounds and characteristics were recruited purposefully from a palliative care unit in Hong Kong. A total of eighteen semi-structured interviews were done as some caregivers in the same family were interviewed together. The audio recordings were then transcribed and analyzed in accord with the principles of IPA. This study yielded a high volume of information. The findings shared below is only part of the data set that mainly focus on the unique internal struggles that encountered by the family caregivers of PwDnC.
A main theme of unconfirmable silent suffering is unveiled with two subthemes that capture family caregivers’ internal conflict and perception towards the pain of their loved ones: (1) uncertain silent of dementia and (2) undoubted suffering of cancer. Family caregivers in this study believed cancer was the origin of noxious and yet their loved ones could not express their cancer pain due to the unexpressive nature of dementia. These two fallacious beliefs collided when dementia met cancer and ascribed to a sense of silent suffering and worries in family caregivers of PwDnC. On one hand, family caregivers worried their loved ones were suffering silently. On the other hand, family caregivers were also suffering from their own uncontrollable worries, which resulted in their immobilization and helplessness in providing care and management symptoms.
These findings give voice to the family caregivers and acknowledge the intricacy of family caregiving in the context of comorbid cancer and dementia. From the findings, we could see that the cancer diagnosis, the grave prognosis, and the possible interactions of all the new and preexisting signs and symptoms might increase family caregivers’ sense of uncertainty and resulting in impertinent worries regarding cancer pain. Taking account of the diversity of family caregivers, careful considerations is needed to develop appropriate assessment and relevant education for this unique group of family caregivers to reduce the ambiguity and uncertainty of caregiving. Further research is suggested to better understand the impact of perceived silent suffering to enable healthcare professionals and family caregivers to provide better care and symptoms management for persons with comorbid cancer and dementia.
All in all, family caregivers suffered not because of the heavy burden of caregiving, but because they loved and cared about their loved ones.
Image: Captured through my lens: Suffered from your Pain. Chinese ink on rice paper
Inspired by the data, I created this Chinese Calligraphy during data analysis in 2020. It represents the interpretation and perception of reciprocal suffering through love and caregiving.
- Older people are more scared of dementia than cancer, poll finds. (2014, August 4). The Telegraph. https://www.telegraph.co.uk/news/health/elder/11008905/Older-people-are-more-scared-of-dementia-than-cancer-poll-finds.html
- McWilliams, L., Farrell, C., Grande, G., Keady, J., Swarbrick, C., & Yorke, J. (2018). A systematic review of the prevalence of comorbid cancer and dementia and its implications for cancer-related care. Aging & Mental Health, 22(10), 1254-1271. https://doi.org/10.1080/13607863.2017.1348476
- Secinti, E., Lewson, A. B., Wu, W., Kent, E. E., & Mosher, C. E. (2021). Health-Related Quality of Life: A comparative analysis of caregivers of people with Dementia, Cancer, COPD/Emphysema, and Diabetes and Noncaregivers, 2015–2018 BRFSS. Annals of Behavioral Medicine, 55(11), 1130-1143. https://doi.org/10.1093/abm/kaab007
This study was presented at ICCN2022 virtual conference.
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