Course:SOWK551/2021/Literature Review: Challenges Faced by Informal Caregivers of Dementia Clients
Short Summary
Literature review on the psychological and social challenges faced by informal caregivers providing care to loved ones with dementia in Canada, analyzing how social workers can offer therapeutic alliances with the goal of supporting the mental health of informal caregivers
Author:
Date: December 11, 2022
Introduction
As the Canadian population ages, many individuals diagnosed with dementia require caregiving in various capacities(O’Neil et al., 2021). With the goal of supporting loved ones within the comfort of their home, many individuals with dementia are supported by informal caregivers. Intimate partners, family members, and friends who support individuals living with physical and cognitive needs are referred to as informal caregivers, as they are caregivers who are not paid while providing care(Alzheimer Society of Canada, 2022). In 2018, it was reported that one in four Canadians aged 15 years and older were providing support in the role of informal caregivers(Statistics Canada, 2022). Informal caregivers often forgo their personal health for the health of their loved one. As the progression of dementia can be lengthy, the psychological and social strain on informal caregivers can be severely threatened(Sanders et al., 2007). Medical treatment is dedicated to the individual receiving care and physiological health of informal caregivers is often forgotten within the Canadian health care system. Social workers have the unique opportunity to support informal caregivers and their loved ones in the progression of diagnosis of dementia, guiding them through anticipatory grief and post-death grief(Sanders et al., 2007). The scope of this literature review will focus on the psychological and social challenges faced by informal caregivers providing care to loved ones with dementia in Canada, analyzing how social workers can offer therapeutic alliances with the goal of supporting the mental health of informal caregivers. This literature review argues that informal caregivers experience exuberant psychological and social challenges when caring for loved ones with a dementia diagnosis and proper support is not yet established to ease the tension of caregiving within the home.
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Psychological Challenges
Informal caregiving differs from formal caregiving as there is a level of intimacy, familiarity and comfort between the caregiver and the individual receiving care. In comparison to formal caregiving which is provided by trained health care professionals, family members and friends caring for someone with dementia balance their personal life with the emotions of their loved one living with dementia(Herron et al., 2019). There are reports that the lack of formal care training adds additional stress for informal caregivers. For example, Nathan Stall argues that although informal caregivers are often not offered formal training, they are still expected to provide medical and nursing care within the home, navigating complex health-care systems with limited support(2019). With this pressure to provide appropriate care, informal caregivers experience internalized pressure and anxiety. O’Neil and Fletcher(2021) and Gaudet et al.(2022) explain that informal caregivers sense they have to take on the full responsibility of caring for their loved ones, which can lead to psychological stress perpetuating feelings of grief, sorrow, fear, guilt and anxiety(Gaudet et al., 2022). To buffer the psychological pressure to provide adequate care, health care mentalities must adopt a biopsychosocial model to support family units. Social sciences support the concept that illness affects entire family cohorts, not just the individual facing a diagnosis(McGovern, 2015). From a social work practice perspective, there is an argument that social workers must adopt a strength based approach for supporting informal caregivers to ensure treatment goes beyond management of the illness(McGovern, 2015). If informal caregivers are not provided emotional backing, there can be significant risks to one’s mental health.
With specific attention drawn to spousal caregiving, research within Canada suggests a unique complexity that spouses face when caring for their partner with dementia. Gibson et al. explain various challenges of spousal caregiving while experiencing the deep sorrow of slowly losing your partner(2019). Dementia, a progressive disease, proves to have intricate complexities surrounding grief for spousal caregivers. Spouses caring for their partners in Canada report that pre-death grief is extremely disheartening with dementia as partners witness a decline in physical abilities while observing significant changes in their significant other’s behavior and personality(Gibson et al., 2019). The deep grief faced by partners caring for their loved one with dementia is challenged further with the reality of the irreversibility of the illness. Social workers report that caregivers of dementia clients experience intense grief as they reflect on their years of life with their loved one and time spent caregiving while preparing for death(Sanders et al., 2007). Sanders et al., further discuss the prevalence of ambiguous loss as dementia progresses, recognizing that though a loved one may be physically present, they are psychologically absent which causes further risk of depressive symptoms for carers(Sanders et al., 2007). Informal caregivers are forced to learn how to cope with deep grief as the disease progresses, while creating a plan for future care needs(Ducharme et al., 2011). To combat risk of depressive symptoms related to longitudinal grief processes, McGovern suggests social workers adopt a strict strength perspective when working with informal caregivers to emphasize emotional growth and a sense of purpose(2015). Though often extremely beneficial in encouraging client self-esteem and emotional regularity, McGovern does not address the reality that a strength-based approach can disregard the intricate grief one is feeling and subtly come across as pathologizing. The grief being analyzed is grief that affects all areas of one’s life. To further complicate the challenge associated to informal caregiver grief and cognitive well-being is the conversation surrounding social isolation when caring for a loved one with dementia.
Social Challenges
When caring for loved ones with dementia, literature acknowledges that caregiving challenges expand further to affect one’s social well-being(Ducharme et al., 2016). O’Neil and Fletcher outline the challenges associated with socialization with a diagnosis of dementia explaining caregivers often feel they are not invited to gatherings as peers assume they will not want to leave their loved one to socialize(2021). Similarly, Gibson et al. explain that as dementia progresses, increased care required later in the disease means that caregivers withdraw from social communities to ensure their loved one is cared for appropriately and safely(2019). Social isolation is perpetuated when the caregiving role ends as caregivers find integration back into their social circles challenging due to time spent apart(Gibson et al., 2019). When socialization does occur for caregivers of loved ones with dementia, there can be a challenge of relatability among social circles, leading to further discouragement faced by caregivers.
In interviews conducted with caregivers being assessed on their wellbeing while caring for loved ones with a diagnosis of dementia, Guberman et al. discovered that many caregivers feel as though they cannot disclose their situations with others, feeling that friends and some family members do not understand what they are experiencing(2019). However, when relationships are not maintained, negative consequences can ensue. Without supportive socialization, those caring for loved ones with dementia are vulnerable to social isolation(Lilly et al., 2012). When socialization outside of the caring relationship is limited, mental health can suffer. When there is isolation and neglect not only from once close friendships but also neglect from health care providers, informal caregiver’s experiences of grief are compounded with stress, depression and burdens(Sanders et al., 2007). In interviewing spousal caregivers, O’Neil and Fletcher uncovered when socialization and support in various areas declines, feelings of depression can be faced by caregivers when comparing their lives to their non-caregiving peers(2021). Scholarly works reviewed throughout this literature review confirms more must be done within health care to support informal caregivers providing care to those with a diagnosis of dementia. Social workers have a responsibility to come alongside families in what might be their darkest moments. To support both the individual facing a diagnosis and their loved ones providing care, ensuring they are heard and respected while experiencing the immense and complicated process of grief that is aligned with a dementia diagnosis.
Conclusion: Application to Social Work Practice
This literature review analyzes the reality that impacts of a dementia diagnosis are not confined to the individual facing a diagnosis. There is a recognition that there must be a shift in the structure of dementia care. With a focus on family systems theory, Canadian health care services must recognize the importance of providing a wraparound approach to dementia care. Services must shift to provide care not only for clients with a diagnosis of dementia but also to the informal caregivers that provide exemplary care in the midst of prolonged grief(McGovern, 2015). With the social work values and ethics of respecting the intrinsic worth of persons served and advocating for the best interest of clients and society, social workers have a responsibility to care and advocate for not only clients facing health care diagnosis but their supportive units(BCCSW, 2009). Social workers working with clients with dementia and their caregivers must acknowledge the intricacies of informal caregiving. Balancing the mental disposition of caring for someone you love while providing physical and cognitive tasks associated to providing care are interlocking components to informal caregiving that can affect one’s emotional stability(Fine, 2021). Social workers must recognize the support that must be offered to uphold family members and friends providing care that is deeply valued and respected. When social workers support not only clients facing significant diagnosis but also their support systems, they are ensuring that continuity of care is upheld while guiding and supporting individuals and families on their personalized road to comfort and stability.
References
Code of Ethics and Standards of Practice. British Columbia College of Social Workers. (2009, November). Retrieved December 1, 2022, from https://bccsw.ca/registrants/code-of-ethics-and-standards-of-practice/
Ducharme, F. C., Lévesque, L. L., Lachance, L. M., Kergoat, M. J., Legault, A. J., Beaudet, L. M., & Zarit, S. H. (2011). “Learning to become a family caregiver” efficacy of an intervention program for caregivers following diagnosis of dementia in a relative. The Gerontologist, 51(4), 484-494.
Ducharme, F., Lachance, L., Kergoat, M. J., Coulombe, R., Antoine, P., & Pasquier, F. (2016). A comparative descriptive study of characteristics of early-and late-onset dementia family caregivers. American Journal of Alzheimer's Disease & Other Dementias®, 31(1), 48-56.
Gaudet, K., Couture, M., Ducharme, F., & Saïas, T. (2022). Caregiver Emotions When Choosing A Living Environment for A Person with Dementia: A Qualitative Study on Social Workers’ Perspectives. Journal of Gerontological Social Work, 65(1), 78-96.
Gibson, K., Peacock, S., & Bayly, M. (2019). Qualitative exploration of emotional and social changes from diagnosis to bereavement for spousal caregivers of persons with dementia. BMJ open, 9(9), e031423.
Government of Canada, S. C. (2022, January 14). Differences in the characteristics of caregivers and caregiving arrangements of Canadians, 2018. Statistics Canada. Retrieved November 20, 2022, from https://www150.statcan.gc.ca/n1/daily-quotidien/220114/dq220114c-eng.htm
Guberman, N., Keefe, J., & Fancey, P. (2019). The assessment experience of spousal dementia care-givers:‘It's made me realise that I am a person also’. Ageing & Society, 39(11), 2443-2464.
Herron, R. V., Funk, L. M., & Spencer, D. (2019). Responding the “wrong way”: The emotion work of caring for a family member with dementia. The Gerontologist, 59(5), e470-e478.
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Lilly, M. B., Robinson, C. A., Holtzman, S., & Bottorff, J. L. (2012). Can we move beyond burden and burnout to support the health and wellness of family caregivers to persons with dementia? Evidence from British Columbia, Canada. Health & social care in the community, 20(1), 103-112.
McGovern, J. (2015). Living better with dementia: Strengths-based social work practice and dementia care. Social Work in Health Care, 54(5), 408-421.
Navigating the path forward for dementia in Canada: The Landmark Study Report #1.Alzheimer Society of Canada. (2022, September 6). Retrieved November 20, 2022, from https://alzheimer.ca/en/research/reports-dementia/landmark-study-report-1-path-forward
O'Neil, H. A., & Fletcher, P. C. (2021). “Sometimes Life Throws You a Curve Ball”: The Lived Experiences of an Individual With Early-Onset Alzheimer's Disease and His Family. Clinical Nurse Specialist, 35(6), 318-326.
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Stall, N. (2019). We should care more about caregivers. CMAJ, 191(9), E245-E246.
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