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Introduction
Social work advocacy aims to influence policies, practices and laws that affect all people in a specific class or group (Dalrymple & Boylan, 2013). This is a comprehensive analysis paper for creating a proposal for a social advocacy action plan to authorize grants for training and support services for families and caregivers of people with Alzheimers disease or a related dementia. Discussed will be the needs and concerns of Alzheimer’s caregivers and the policies affecting them. Also discussed will be related supportive and opposing factors and effective strategies to address these concerns based on theoretical and empirical evidence.
Community Needs and Gaps in Services
Alzheimers disease is a form of dementia that weakens the cognitive and physical abilities of a person. There are more than 5.8 million Americans with Alzheimer’s dementia and the numbers are steadily rising. Throughout the progression of the disease, Alzheimers caregivers play a crucial role in the lives of those with Alzheimers dementia. There are over 16 million unpaid caregivers in the US. One third of these caregivers are 65 years or older and two thirds are women. One fourth of these caregivers have a double duty to also care for their children under the age of 18. The unpaid care of 18.4 billion hours adds up to an economic value of over $232 billion (CDC, 2019). Informal caregiving is defined as unpaid care provided by family or friends to people with a chronic illness or disability (Scott, 2010).
Caregiving is a serious public health issue. Caregivers attend to the social, emotional and health needs of a person. Caregiving may include assistance with daily living tasks such as bathing and dressing, paying bills, shopping etc. It may also include helping with the coordination of medical care (Gaugler, James, Johnson, Marin, & Weuve, 2019). Caregivers feel emotional stress, guilt and depression, they often ignore their own health and suffer in the long run (ASC, 2014). Physicians and other healthcare professionals are often focused on the patient and fail to understand the needs of caregivers posing an imminent threat of a new public health crisis (Health Gap, 2019). Caregivers need support and downtime so they can recover from the stress of caregiving and look after their own health too. To be able to provide the best care, caregivers need respite and support in the form of educational and respite care programs, support groups, counseling and trainings. Evidence shows that caregivers who receive such additional support, report lower stress and better health. They report to feel better equipped for navigating through challenging behaviors of the person they care for and keep them safe at home longer (Reed, 2012). My experience of working with the elderly and a recent Alzheimers diagnosis in the family, prompted me to research about this issue. I have seen my clients and my own family members suffer from the heavy demands of caregiving which piqued my interest in learning more about the difficulties of Alzheimers caregivers.
Formal and Informal Policies that Influence the Issues
Call for action and advocacy in support of Alzheimers caregivers has just started to receive attention. The concerns of caregivers in the US have long been ignored by policy makers and healthcare entities. Public policies by the federal and state governments help improve dementia care and support by promoting various standards and effective practices for providing high quality care. After relentless advocacy by the Alzheimers Association, the Congress passed the National Alzheimers Project Act in 2010, which became a law in 2011 for the creation of a strategic plan to improve care, support, and treatment for Alzheimer’s. Just as funds are allocated to medical research for Alzheimer’s, policymakers must seek funding in support of their caregivers too (Thornhill & Conant, 2018). The Alzheimer’s Impact Movement (AIM) in partnership with the Alzheimer’s Association has been instrumental in influencing the Congress for better policies to educate and raise awareness in medical providers and patients about the available care planning services from Medicare (AMI, n.d.).
Societal pressures and gender norms create greater restrictions on female caregivers who report higher levels of burden and depression compared to male caregivers (Alzheimer’s Disease International, 2019). The lesbian, gay, bisexual, and transgender (LGBT) caregivers face unique challenges such as being denied rights as health care proxies, right to make care decisions, scheduling time off with employers to care for an aging loved one. Additionally, many of them have no job protection or domestic-partner benefits (Osage, 2015). A research based on the review of multiple published studies found that racial and ethnic minority groups may not have more available support than Whites (Janevic & Connell, 2001). The National Association of Social Workers (NASW) has historically supported Alzheimer’s related legislations as they align with social work values and ethics of social justice, the dignity and worth of a person etc. Social workers treat people with respect by promoting self-determination and empower clients. NASW has worked diligently to get failed bills passed and support patients and families of Alzheimer’s at micro and macro levels (Hochreiter, Lesher, Rabatin & Reeves, 2015).
Theoretical Perspectives to Understand the Issues and Strategies of Change
Caregiver burden is defined as the strain and pressure experienced by a person who cares for their sick, disabled or elderly family member. There are many theories that explain caregiver burden. According to the social exchange theorists, informal caregiver burden is minimized when there is an equitable exchange. When recipients of care respond with gratitude for the care they receive, it creates a balance as the caregivers experience more satisfaction and less burden from caregiving. The Attachment Theory of caregiver burden says that caregivers feel less burden when providing care to people with whom they have a strong and secured emotional relationship (Scott, 2010). The Stress Process Model (SPM) is extensively used in research to understand stress and coping for family caregivers of people with Alzheimer’s Dementia. According to the SPM, the primary stressors- which are the impairment and symptoms of dementia, have an impact on the secondary strains, which again can have a direct or indirect impact on the outcomes of wellbeing of the caregiver (Judge, Menne & Whitlatch, 2009).
Research and Empirical Evidence
Caregivers of Alzheimer’s experience distress. A study involving a sample of 86 caregivers of patients with Alzheimer’s was conducted to evaluate the relationship between caregiver burden and coping strategies. The results revealed that caregiving burden is strongly correlated to dementia severity and is higher in women and elderly caregivers. The findings of the study also revealed that caregivers found coping strategies helpful in adapting better coping techniques (Iavarone, Ziello, Pastore, Fasanaro & Poderico, 2014). Another research at Mount Sinai Hospital in New York involving 555 men and women found that the medical care for Alzheimers in the last five years of a patient’s life costs far more than care for cancer and heart disease putting those households at a higher financial risk (Netzer, 2015). Another study in the state of Kentucky with 33 Alzheimer’s caregivers also found that caregivers with stronger attachments to their parents with Alzheimer’s had a positive perspective about caregiving. The findings of the study help therapists understand the importance of strong attachments on caregiving burden (Cornu, 2019).
Barriers and Facilitating Factors
Lack of care for caregivers continues to be a serious cause of concern. Very few interventions exist for routine clinical care for most family caregivers. To address this concern, an evidence-based program ‘the Caring for the Caregiver program’ was developed at UT Health San Antonio for better caregiver support. Evidence from several studies show that engaging stakeholders in planning and decision-making contributes to more relevant programs and improves health care quality and outcomes. The process of collaborating with community stakeholders such as family caregivers, people from community agencies and organizations like the Alzheimers Association, National Alliance for Caregiving, AARP, Family Caregiver Alliance, healthcare professionals, and researchers has proved to be a fruitful approach for developing supportive interventions for caregivers (White et.al., 2018). Organizations like the AARP, AA, National Alliance for Caregiving collaborate to invest funds towards disease cure and caregiver concerns.
At present, there have not been any publicly reported endorsements of or opposition to this bill. However, a previous iteration of the bill, S 3113 (114th Congress), received letters of endorsement from both the Alzheimers Association and the LEAD (Leaders Engaged on Alzheimers Disease) Coalition.
Proposed Social Action Plan
The social action plan aims to support the Alzheimers Caregiver Support Act which was first introduced in 2016 as S 3113 in the 114th Congress by Senator Amy Klobuchar, reintroduced in 2017 in a previous session of Congress, but not enacted and currently introduced as S.740 in the 116th Congress in March 2019, read twice and referred to the committee. This social action plan would be a community-based advocacy with the recommended steps (i) defining the community (ii) developing goals of the organizing (iii) identifying a governance structure (iv) developing a strategy (v) planning and implementing strategy and (vi) evaluating outcomes and implementation. The initial step to this action plan would be to partner up with all concerned stakeholders, establish community needs, develop long term goals and impacts. Next, hold community meetings, assess needs and conduct surveys, perform comparison analysis to learn from other communities response to the caregivers issues. With the help of general and targeted campaigns educate public to raise awareness (Simmons Asynchronous Coursework). The success or failure of any public initiatives for changing rules and public policy issues is determined by working effectively with the policymakers and elected public officials like senators, representatives, mayors, city-county councilors, etc. Meeting local legislators, writing them letters, appealing them to vote for passing the bill would be essential to social action plan (GCPD, n.d.).
Conclusion
Institutional caregiving for Alzheimers is expensive. Caregivers who provide comfort and care to their loved ones at home play an important role in keeping costs low. However, these caregivers experience many challenges that impact their wellbeing in many ways. They often neglect their own health and experience increased physical, psychological and financial problems. Policy makers and practitioners are finding ways to better support Alzheimer’s dementia caregivers. Despite such attempts for additional support through different social programs, many caregivers continue to experience negative outcomes from the caregiving burden. There is a need for active social advocacy to raise awareness of caregiver problems by collaborating with all stakeholders, namely, social work professionals, researchers, elected officials etc. in order to support relevant bills and programs for caregivers.
References
- Alzheimer’s Association, (2019). LGBT Caregiver Concerns. Important Considerations for LGBT Caregivers. Available Online at https://www.alz.org/national/documents/brochure_lgbt_caregiver.pdf
- Alzheimer’s Disease International. (2019). World Alzheimer Report 2019: Attitudes to dementia. Alzheimers Disease International. London.
- AMI. (n.d.). The Improving HOPE for Alzheimer’s Act. Alzheimer’s Impact Movement. Available online at https://alzimpact.org/priorities/improving_hope_for_alzheimers_act
- CDC. (2019). Supporting Caregivers to Make Alzheimers Our Next Public Health Success Story. Alzheimer’s Disease and Healthy Aging. Available online at https://www.cdc.gov/aging/healthybrain/issue-maps/supporting-caregivers.html
- Cornu, M. (2019). Caregivers of Parents with Alzheimer’s Disease: Quality of Life for Caregivers: Perspectives & Family Dynamics. Theses and Dissertations-Family Sciences. https://uknowledge.uky.edu/hes_etds/75
- Dalrymple, J. and Boylan, J. (2016). Effective Advocacy in Social Work. Sage Publications Ltd. Los Angeles
- Gaugler, J., James, B., Johnson, T., Marin, A., & Weuve, J. (2019). 2019 Alzheimer’s Disease Facts and Figures. Alzheimer’ Association. Available online at https://www.alz.org/media/Documents/alzheimers-facts-and-figures-2019-r.pdf
- GCPD. (n.d.). The Indiana Governor’s Planning Council. Forming a Community-based Advocacy Group. Available online at https://www.in.gov/gpcpd/2356.htm
- Health Gap. (2019). When Caregivers Need Care. Available online at https://closingthehealthgap.org/when-caregivers-need-care/
- Hochreiter, K. M., Lesher, D., Rabatin, E. R., & Reeves, S. M. (2015). The Silent Struggle of Alzheimer’s. Available online at https://www.socialworker.com/feature-articles/practice/the-silent-struggle-of-alzheimers/
- Iavarone, A., Ziello, A. R., Pastore, F., Fasanaro, A. M., & Poderico, C. (2014). Caregiver burden and coping strategies in caregivers of patients with Alzheimers disease. Neuropsychiatric disease and treatment. https://doi.org/10.2147/NDT.S58063
- Janevic, M. R., & Connell, C. M. (2001). Racial, Ethnic, and Cultural Differences in the Dementia Caregiving Experience: Recent Findings. The Gerontologist. https://doi.org/10.1093/geront/41.3.334
- Judge, K. S., Menne, H. L., & Whitlatch, C. (2009). Stress Process Model for Individuals with Dementia. The Gerontologist. 50. 294-302. doi:10.1093/geront/gnp162
- Netzer, W. J. (2015). Alzheimer’s Care Costs Far More Than Heart Disease or Cancer Care. Fisher Center for Alzheimers Research Foundation at The Rockefeller University. Available online at https://www.alzinfo.org/articles/caregiving/alzheimers-care-costs-far-more-than-heart-disease-or-cancer-care/
- Osage, P. (2015). Special Concerns of LGBT Caregivers. Family Caregiver Alliance. Available Online at https://www.caregiver.org/special-concerns-lgbt-caregivers
- Reed, B. R., (2012). Alzheimers Disease and Caregiving. Family Caregiver Alliance. Available online at https://www.caregiver.org/alzheimers-disease-caregiving
- Scott, C. B. (2010). Alzheimer ‘s Disease Caregiver Burden: Does Resilience Matter? PhD diss., University of Tennessee. https://trace.tennessee.edu/utk_graddiss/912
- Simmons Asynchronous Coursework. Principles of Community-Based Advocacy and Change. Retrieved from https://2sw.socialwork.simmons.edu/ap/courses/828/sections/2c07c207-9b07-43dc-82b2-656c03768134/coursework/module/952fa50f-1256-4d30-82c9-6ddd1293c372/segment/5ba49052-f061-446b-b40a-5cf99798c45d
- Thornhill, L., Conant, R. (2018). Improving Care Through Public Policy. The Gerontologist. https://doi.org/10.1093/geront/gnx181
- White, C. L., Overbaugh, K. J., Pickering, C., Piernik-Yoder, B., James, D., Patel, D. I., Puga, F., Ford, L., & Cleveland, J. (2018). Advancing Care for Family Caregivers of persons with dementia through caregiver and community partnerships. Research involvement and engagement, 4, 1. https://doi.org/10.1186/s40900-018-0084-4
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