The Silent Struggle of Alzheimer's

by Kristen M. Hochreiter, Darren Lesher, Emily R. Rabatin, & Sheila M. Reeves

Editor’s Note: The HOPE for Alzheimer’s Act was reintroduced in the 114th Congress in March 2015 by Senators Debbie Stabenow (D-MI), Susan Collins (R-ME), Shelley Moore Capito (R-WV), Edward Markey (D-MA), and Representatives Chris Smith (R-NJ-4), Paul Tonko (D-NY-20), Peter Roskam (R-IL-6),  and Earl Blumenauer (D-OR-3).

     Aging is an unavoidable part of life. Yet, those who age within the United States healthcare system and their loved-ones may often be left feeling as though society lacks concern for their well-being. For those experiencing a life disrupted by Alzheimer’s disease (or Alzheimer’s), this feeling may be even stronger. The misconceptions and stigma surrounding Alzheimer’s have plagued caregiving options and resulted in inadequate diagnosis and care options for patients (Lunde, 2012).

    Dr. Alois Alzheimer first described the condition in 1906, and it was named in 1910. However, it was not until 1980 that the Alzheimer’s Association was founded (Alzheimer’s Association, 2014). Indeed, recognition and research into the disease does not reflect the more than 100-year history of people living with Alzheimer’s. In part, recognition is limited because a confirming diagnosis can only be made via a post-mortem brain autopsy (Alzheimer’s Association, 2014).

    Alzheimer’s is the most common form of dementia, one that causes cognitive, behavioral, recognition, and recollection difficulties for the patient, as well as a great struggle for his or her loved ones (Alzheimer’s Association, 2014). Alzheimer’s is not a typical stage of aging, but rather a disease that robs individuals of their independence (Markey, 2011). Statutory acknowledgment of Alzheimer’s would provide for early diagnostic options and discussions between caregivers and physicians to afford patients a better quality of life (Lunde, 2012).

Statement of the Problem

    The severity of Alzheimer’s portends tremendous care needs. However, a review of existing Alzheimer’s research suggests care for patients with the disease is lacking. Knowledge in the medical community is vital to our understanding of how the disease evolves; greater understanding of Alzheimer’s is especially important considering less than half of all people who currently experience Alzheimer’s symptoms recognize them as such (Bäckman, Jones, Berger, Laukka, & Small, 2005).

    Bäckman et al. (2005) recognized that the multiple cognitive domains of memory are most appropriately addressed using a variety of measurement strategies, such as observations of word recall and face recognition. In this study, the authors used a meta-analysis to identify systematic differences in cognitive functioning among a sample of patients with preclinical impairment. Results suggested that memory-relevant regions in the medial-temporal lobe are indeed affected prior to the time at which dementia can be clinically diagnosed by today’s standards (Bäckman et al., 2005). This review suggests the critical importance of early identification of symptoms. Early identification would further allow patients time to get their affairs in order. The aforementioned literature suggests changes are needed in our commitment to Alzheimer’s research and treatment. The “HOPE for Alzheimer’s Act” offered such an option.

Potential Legislation

    The “Health Outcomes, Planning, and Education (HOPE) for Alzheimer’s Act” (S.709/H.R. 1507) was one of the Alzheimer’s Association’s top federal priorities for the 113th Congress (2013). The purpose of this bill was to amend Title XVIII of the Social Security Act. Specifically, this bill sought to better care for Americans living with Alzheimer’s disease and other dementias by increasing awareness and diagnosis (The HOPE for Alzheimer’s Act, 2014). The use of the acronym “HOPE” provides those affected by Alzheimer’s with just that—hope. The “HOPE for Alzheimer’s Act” proposed improving early detection and diagnosis of Alzheimer’s disease and increasing access to information on care and support for newly diagnosed patients and their families. It also would have ensured that an Alzheimer’s (or other dementia diagnosis) would have been documented in the individual’s medical record. However, the bill died in the 113th Congress. It needs to be reintroduced in the 114th Congress.

    Through proposed Medicare expansion, the HOPE for Alzheimer’s Act adds the phrase “comprehensive Alzheimer’s disease diagnosis and services” to the list of services and supplies provided by physicians (The HOPE for Alzheimer’s Act, 2014). If diagnostic evaluation reveals a patient likely has Alzheimer’s disease, she or he would be provided care planning services (for him or herself and his or her family), as well as medical record documentation of the evaluation, diagnosis, and services.

Proponents and Opponents of the HOPE for Alzheimer's Act

    Alzheimer’s advocacy agencies, the National Association of Social Workers (NASW), Republican and Democratic leaders in Congress, and recommendations from the U.S. Department of Health and Human Services all supported the HOPE for Alzheimer’s Act. The Hope for Alzheimer’s Act had bipartisan support and would have built upon the legacy of the National Alzheimer’s Project Act (Public Law 111-375). This law (signed into law by President Barack Obama in January 2011) required the creation of a national strategic plan to address the rapidly escalating Alzheimer’s disease crisis and the coordination of Alzheimer’s disease efforts across the federal government. In May 2012, the resulting plan was released, establishing five goals to both prevent future cases of Alzheimer’s disease and to better meet the needs of the millions of American families currently facing this disease. These goals included:

• Prevent and effectively treat Alzheimer’s disease by 2025.
• Optimize care quality and efficiency.
• Expand supports for people with Alzheimer’s disease and their families.
• Enhance public awareness and engagement.
• Track progress and drive improvement (Alzheimer’s Impact Movement, 2014).

    The Hope for Alzheimer’s Act would have extended the recommendations above, which were released by the Department of Health and Human Services in 2012. HOPE would have increased access to information on care and support for newly diagnosed individuals and their families—providing essential support for those facing an Alzheimer’s or dementia diagnosis, with a continuum of care insured by Hope also requiring documentation of the diagnosis in the individual’s medical record.

    Arguments against the HOPE for Alzheimer’s Act dealt primarily with funding for Alzheimer’s policy initiatives. As Congress has continued to decrease funding to most public welfare projects, the HOPE for Alzheimer’s Act became a casuality in this process (Miller, 2013). Although Alzheimer’s disease affects five times as many people in the United States as AIDS, AIDS research receives $3 billion a year, while Alzheimer’s research receives only $500 million a year (Markey, 2011). The resistance to fund an Alzheimer’s initiative may result from the way in which Alzheimer’s disease is viewed by the public and the stigma surrounding this condition. Cancer and AIDS affect younger people. Alzheimer’s disease is generally perceived as being a “natural part” of the aging process (Markey, 2011). Younger lives tend to be seen as a more valuable public commodity than are those of older adults.

NASW and Alzheimer’s

    The National Association of Social Workers (NASW) supported the HOPE for Alzheimer’s Act (“Health Outcomes, Planning,” 2013). Every aspect of the bill aligned with social work values and ethics, one being the dignity and worth of a person. As social workers, it is important we treat individuals with respect. One way to do so is by promoting self-determination; social workers should strive to increase their clients’ opportunity to live independently. Ultimately, social workers should be able to help clients help themselves. By pushing for early diagnosis, the HOPE for Alzheimer’s Act promotes self-determination. With early diagnosis, clients are able to control their lives and make decisions concerning their current and future care. Social workers are able to help those in immediate need. The HOPE for Alzheimer’s Act addresses this social work value by including immediate care for clients with Alzheimer’s disease and their families through support of public education and awareness.

Implications of the Bill for Social Work Practice

    Increased early intervention and diagnosis of Alzheimer’s would allow for micro level social workers to intervene in the lives of Alzheimer’s patients at an earlier stage (Alzheimer’s Association, 2014). Current research suggests that individual psychotherapy for both individuals with Alzheimer’s and for their family members are extremely beneficial in creating better long-term outcomes (Hirst, 2009). Psychotherapy helps people with Alzheimer’s formulate social and coping skills and has been shown to help decrease the negative effects of the disease over longer periods of time (Werheid et al, 2009). Because psychological effects and depression often occur in Alzheimer’s patients before demonstrated neurological changes occur, early intervention and treatment increases the usefulness of psychotherapy as a long-term tool (Bauer, 1997).

    Early identification of Alzheimer’s allows social workers to establish personal relationships with clients at an earlier stage in the process of the disease. By identifying people with Alzheimer’s earlier, social workers have the ability to intervene and provide a caring relationship, which many people now lack (Manthorpe, 2001).  

    On a macro level, the HOPE for Alzheimer’s Act draws attention to this pressing issue. One of the most important parts of advocating for Alzheimer’s disease research and treatment is to begin by educating the public on the seriousness of the issue (Comer, 2007). The HOPE for Alzheimer’s Act would have promoted health and longevity for older adults by affirming their needs (Markey, 2011). By dispelling stigma, research can move forward with dignity restored to this particular population-at-risk.

Where Do We Go From Here?

    The HOPE for Alzheimer’s Act failed in both the House and the Senate during the 113th session. In the Senate, the bill was read and referred to the Finance Committee, where it died. In the House, the bill was referred to the Ways and Means Committee, then to the Subcommittee on Health, where it also died. In the meantime, physicians with specialized training diagnose Alzheimer’s disease correctly up to 90 percent of the time. Yet, more than half of patients meeting these diagnostic criteria for dementia do not receive a documented diagnosis. The absence of a formal diagnosis of Alzheimer’s deprives patients of the appropriate treatment and services that could help them and their families face this disease. The HOPE for Alzheimer’s Act would have improved diagnosis and documentation of Alzheimer’s disease and increased access to information, care, and support for newly diagnosed individuals and their families.

    We hope you will use the information in this article to advocate for reintroduction of the HOPE for Alzheimer’s Act in the 114th Congress. Again, with bi-partisan support, we hope you will contact your members of Congress in support of reintroducing this bill (see: http://act.alz.org/site/PageNavigator/Advocacy_PublicPolicy/HOPEforAlzheimersAct.html), as well as become involved in grassroots efforts through groups such as US Against Alzheimer’s (http://www.usagainstalzheimers.org/crisis).

References

Alzheimer’s Association. (2014). Retrieved from http://www.alz.org/

Alzheimer's Impact Movement. (2014). National Alzheimer’s project act. Retrieved from http://alzimpact.org/Legislative-Action-Center

Bäckman, L., Jones, S., Berger, A., Laukka, E. J., & Small, B. J. (2005). Cognitive impairment in preclinical Alzheimer’s disease: A meta-analysis. Neuropsychology, 19 (4), 520-531. doi: 10.1037/0894-4105.19.4.520

Bauer, J. (1997). Möglichkeiten einer psychotherapeutischen Behandlung bei Alzheimer-Patienten im Frühstadium der Erkrankung. Der Nervenarzt, 68 (5), 421-424.

Comer, M. (2007). Be heard here first: A strategic voice for Alzheimer’s advocacy. Alzheimer's & Dementia, 3 (1), 58-61.

Health outcomes, planning, and education for Alzheimer’s act. (2013). Retrieved from http://cqrcengage.com/socialworkers/app/bill/329122

Hirst, S. P. (2009). Clinical Alzheimer Rehabilitation (review). Canadian Journal on Aging/La Revue canadienne du vieillissement, 28 (2), 206-208.

Lunde, A. (2012). Myths, misconceptions interfere with Alzheimer’s diagnosis, care. Mayo Clinic. (2015). Alzheimer’s disease. Retrieved from http://www.mayoclinic.org/diseases-conditions/alzheimers-disease/expert-blog/alzheimers-stigma/bgp-20055844

Manthorpe, J. (2001). Social work and dementia: Good practice and care management. Ageing and Society, 21, 523-524. Retrieved from http://search.proquest.com/docview/195633715?accountid=14709

Markey, E. (2011, October 20). [Web Based Recording]. Alzheimer’s funding lags behind other diseases. Retrieved from http://www.wbur.org/2011/10/20/alzheimers-funding

Miller, H. (2013, December 18). To address the dementia epidemic, we need smarter research funding. Retrieved from http://www.forbes.com/sites/henrymiller/2013/12/18/to-address-the-dementia-epidemic-we-need-smarter-research-funding/

The HOPE for Alzheimer’s Act. (2014). Retrieved from http://act.alz.org/site/PageNavigator/Advocacy_PublicPolicy/HOPEforAlzheimersAct.html

U.S. Against Alzheimer’s. (2014). The crisis. Retrieved from http://www.usagainstalzheimers.org/crisis

Werheid, K., Thoene-Otto, A., Cramer, B., Frölich, L., Gertz, H. J., Knorr, C., & Kurz, A.     (2009). Cognitive-behavioral psychotherapy for early Alzheimer’s disease. Alzheimer’s &    Dementia, 5 (4), 406-407.

Kristen Hochreiter received her BASW from the University of Pittsburgh in 2015 and is serving as a Pittsburgh Urban Leadership Service Experience Fellow. Darren Lesher is pursuing a bachelor’s degree in social work at the University of Pittsburgh and anticipates graduating in 2016. Emily Rabatin received her BASW degree from the University of Pittsburgh in 2015 and is now an administrative assistant at Light of Life Rescue Mission. Sheila Reeves received her BASW from the University of Pittsburgh in 2015 and is employed as an acute care social worker at Vincentian Nursing Home.