TITLE: AUTOETHNOGRAPHY OF AN AGING ADVOCATE, FROM THE CLASSROOM TO THE CAPITOL
AUTHOR: Connie S. Corley, MSW, MA, Ph.D.
AFFILIATIONS: Professor, Fielding Graduate University and Professor Emeritus, California State University, Los Angeles
ABSTRACT
Authoethnography of an Aging Advocate, from the Classroom to the Capitol
Exploring advocacy as a form of agency and legacy, the story of engaging in Alzheimer’s Advocacy is situated as a case study in six acts: Setting the Stage, Telling the Story, Lessons Learned and Lessons Shared, Next Steps On and Off Stage, Why Story Matters and Making an Impact. Woven through the story are examples of storytelling as a way to HAF Fun (Healing, Advocacy and Fundraising). Implications for policy, research, education and practice in the arena of dementia are discussed and advances in advocacy directed to Alzheimer’s research and practice are highlighted.
Introduction
“All of life is a stage….And one man in his time plays many parts…”
{https://www.poets.org/poetsorg/poem/you-it-act-ii-scene-vii-all-worlds-stage}
Four centuries after the passing of a writer called Shakespeare, the concept of “the ages of man” is still evident in contemporary theories of stages of development. One such stage is the psychosocial crisis “generativity vs. stagnation” encompassing a large swath of adult life (Erikson & Erikson, 1997). The resolution of this crisis, or virtue, is “care” and when called to be a social worker and psychologist at the beginning of this life stage 4 decades ago, care for older adults became my focus. Experiencing the challenges and opportunities presented in long-distance caregiving for my own parents, I found that the concept of “agency” which is one of the principles of Elder’s life course perspective (Elder, 1974) has been key in being able to reconcile my academic and professional engagement in the field of aging with the realities of limits to care options especially for elders with diminishing cognitive resources.
As I first became an advocate with the Alzheimer’s Association, I saw it as an opportunity to explore “acts” in the play of my life to date, with the goal of contributing to research, education, practice and policy in the realm of dementia. Part of generativity is leaving a legacy, and in my authoethnography of advocacy and agency, I utilize the power of storytelling by weaving in segments of testimony accepted by the United States Senate Special Committee on Aging following the hearing, “The Fight Against Alzheimer’s Disease: Are We on Track to a Treatment by 2025?” held on March 25, 2015.
Following Act 1, “Setting the Stage” where I situate dementia as the target area of my storytelling, Act 2, “Telling the Story” is a sharing of my gerontological journey from the academic world into the family caregiving and advocacy worlds. Act 3, “Lessons Learned and Lessons Shared” speaks for itself, leading to Acts 4 and 5: “Next Steps, On and Off Stage” and “Why Story Matters.” Summative Act 6, “Making an Impact” addresses the implications of storytelling for policy, research, education and practice (PREP).
Act 1: Setting the Stage
The following paragraph opened testimony that I submitted on April 1, 2015 accepted by the U.S. Senate Special Committee on Aging following its hearing the previous week, on a day that 1,000 people from all 50 United States lobbied for increased funding for Alzheimer’s Disease research and for the passage of the HOPE (Health Outcomes, Planning, and Education) Act of 2015:
“It’s an amazing time to be alive! Longevity is at its peak and for many diseases and illnesses there are treatments and, for some, even cures. But not for Alzheimer’s Disease. There is no cure, only a few drugs that slow memory loss, and no definitive way to diagnose it other than autopsy. Unlike other major causes of death, the toll that Alzheimer’s Disease takes continues to climb. Unlike other major causes of death, federal funding for research is in the millions of dollars each year rather than the billions. And unlike other major causes of death, many who have it are never told even when the diagnosis is almost certain and, saddest of all, many with Alzheimer’s Disease are not even given the simplest of evaluations by a doctor or other professionals.” (Corley, 2015)
In December, 2015 the U.S. Congress passed a spending bill with a landmark increase in funding for Alzheimer’s Disease (AD) research: $350,000 in additional funds (https://www.nia.nih.gov/research/blog/2016/01/encouraging-start-new-year). Although the HOPE Act of 2015 did not get signed into law, there was bipartisan support for the research funding appropriation. Over 5 million Americans have Alzheimer’s disease, including 11% of persons age 65 and older and 32% of those 85 and older (Alzheimer’s Association, 2015). Alzheimer’s Disease is the most common form of dementia.
Recent studies have shown that similar to a cancer diagnosis decades ago, fewer than half of persons with Alzheimer’s Disease are told about their diagnosis (Alzheimer’s Association, 2015). Given limited treatments for AD, and its progressive nature, families provide the largest amount of care, often supplemented by formal caregivers (Alzheimer’s Association, 2015). Among older adults in institutional care, some form of dementia is the primary reason elders can no longer live in their homes. Many caregivers are working, and frequently also caring for other family members.
Women comprise the vast majority of family caregivers, and also are at greater risk of developing AD compared to men (Alzheimer’s Association, 2014). These facts have been the focus of targeted advocacy efforts, eg. the My Brain™ Movement aimed to reach 1 million women to mobilize to “wipe out Alzheimer’s Disease.” http://mybrain.alz.org/about-the-movement.asp
In addition to emotional challenges that can accompany caregiving for persons with dementia, the financial costs can be staggering. Kelley, McGarry, Gorges & Skinner (2015) note:
“Health care expenditures among persons with de¬mentia were substantially larger than those for other diseases, and many of the expenses were uncovered (uninsured). This places a large financial burden on families, and these burdens are particularly pronounced among the demographic groups that are least prepared for financial risk.” (p. 729)
Over the last few decades, a growing number of formal services have become available to support older persons with health challenges and those who help them. Family caregivers can face a dizzying array of options to explore, and when caring for someone with a progressive illness such as Alzheimer’s Disease, ultimately they may find themselves in a position to have to make decisions on behalf of a cognitively impaired adult. Resources are available to help guide caregivers to find assistance for elders as well as for themselves, such as the National Family Caregiver Support Program (funded through Area Agencies on Aging). Numerous books (e.g. the classic book by Mace and Rabins, The 36 Hour Day, 2011), as well as websites (e.g. AARP: http://www.aarp.org/home-family/caregiving/), offer information and referrals. In addition to working with trained professionals such as geriatric case managers, families can find brokers who will locate settings like assisted living facilities and nursing homes: typically they are people with no professional training in gerontology/geriatrics who get a finder’s fee after someone is placed.
As noted by Robert L. Kane, noted scholar who also shares wisdom from caring for his mother, “… In the long run, we should all be advocating for a better system of care for elderly adults.” (Kane, 2011, p. 15).
Act 2: Telling the Story
“I came to study gerontology” – when a classmate in my first doctoral seminar stated this, it fascinated me. Just days after arriving to Ann Arbor in 1976 to study social work and psychology at the University of Michigan, after moving out from my childhood abode and putting aside my lifetime elementary teacher certificate during a teacher glut, it seemed like a way to broaden my interest in human development to learn about “the other end” of the lifespan.
Fortunately I had the opportunity to work with a family service agency during graduate school doing a practicum that involved helping with a support group for families of older adults. Less than a decade later, I went to my first Alzheimer’s support group led by Liza Gwyther when I was affiliated with Duke University. Fast-forwarding another few decades, I led a family caregiver training grant at California State University, Los Angeles under the National Family Caregiver Support Program. Yet in all of these experiences I didn’t give much thought to my own burgeoning experiences as a long-distance family caregiver. At the same time I spearheaded a lifelong learning program for high functioning older adults, I was also teaching gerontology courses like “Social Policy and Aging”. The idea that the systems of care described in textbooks are even more fragmented in real life than reported in print had not yet materialized in my own family.
As my father’s health declined and my mother’s memory issues mounted, my trips to St. Louis to help them and support my siblings grew from my longstanding pattern of 2-3 a year to 5… 6… then 7 times a year. Being the gerontologist in the family, I felt confident that services like hospice and case management were just the right fit for my parents’ needs. It turned out that hospice dropped the ball after my father died, and two different case managers made recommendations that alienated the family and we all scrambled to try to convince our mother to get in-home support. When that wasn’t enough, two failed efforts to situate our mother in residential care (assisted living one year, specialized dementia skilled care the next) led to more scrambling.
Support group? Yes, that’s what I have recommended to others, but how can I find one to really connect with people when they typically meet monthly and I’m out of town at least a week a month? Feeling like my knowledge about systems of care didn’t match reality, and hearing a webinar about the status of research on diagnosis and treatment of Alzheimer’s Disease by 2050, rather than feeling discouraged I needed to feel engaged, and empowered. So I signed up for the Advocacy Forum held by the Alzheimer’s Association and in March, 2015 went to Capitol Hill for the first time as an advocate. After attending the U.S. Senate Select Committee on Aging hearing noted above, I heard there was still time to submit testimony, which I did for the first time. Then in April I went with the statewide Alzheimer’s Association advocacy coalition to Sacramento.
My sense of agency grew even as my feelings of isolation and discouragement about my mother’s trajectory and care needs became more complex. I found support being among the 1,000-plus advocates in DC, and ran into fellow aging network friends from Los Angeles as we visited California legislators. Yes, advocacy was empowering for me, and for my family I could offer hope that things might be better as we face elderhood. When 2015 ended with the news that a Congressional budget was approved in Washington with a record increase in funding for Alzheimer’s Disease research (one of our “asks” in March), I worked on recruiting family members to go to the next Advocacy Forum in 2016.
Act 3: Lessons Learned and Lessons Shared
“So I have learned a lot and to quote myself at the bedside of my father (who was my mother’s primary caregiver until he died 15 months ago from a recurrence of lymphoma): ‘What I have learned in love, I will teach in life.’ Ralph Corley was a World War II Purple Heart veteran who survived the bombing of his ship in the Pacific arena at the age of 17. If he could help care for my mother 70 years later until his health left him unable to do so, then I hope that I can continue to care for others as a family member, a teacher and also do my best to care for myself. I have felt the love of the 1,000 plus this past week, and I am grateful for people like Verna Jones-Rodwell, the Chair of the 2015 Alzheimer’s Association Advocacy Forum (former Maryland state representative) who asked me, ‘What are you doing to take care of yourself?’ Now in such love, I hope to teach from my story and enhance my expertise — all of it from my heart and, so far, from a functioning mind.” (Corley, 2015)
As I write this manuscript several years after my last words to my father, I am sharing the following mantra I adopted going forward from my first time experience advocating with a group in Washington, D.C. : “Show up, listen up, stand up, follow up!”. It spurred me to go to Sacramento with the statewide Alzheimer’s Association advocacy initiative, and furthered my sense of agency in community as I re-connected there with some of the advocates who were in DC as well as with local aging network colleagues from LA. Hence, I “showed up.”
I learned that having the background information on legislation was key, which meant being focused and taking in all the briefing information then presenting confidently to legislators (which generally means their staff), all in a very condensed time frame: I had to “listen up” and then “stand up” including a lot of time standing in hallways waiting for a window of time to pitch for legislation among the throngs of other groups and individuals waiting for their causes to be heard!
While it’s easy to do everything in my mantra while with a group, coming back home and keeping the legislative advocacy in mind while caregiving and other responsibilities called me was a bit challenging. Regarding “follow up”, I was fortunate to have the opportunity to talk to my U.S. Congressional Representative Judy Chu at a function in Pasadena, asking when she was going to sign on to the HOPE for Alzheimer’s Act 2015 as she did in the past. Although she told me she already had, her name was not yet listed as a cosponsor on congress.gov. I did follow multiple times over the following week, and finally saw her name listed. That was very affirming!
In addition to learning about advocacy, I wanted to engage in fundraising by participating in a local Walk to End Alzheimer’s, yet I was also intrigued with a newer initiative called, “The Longest Day.” Held in 2015 on the first day of Summer, June 21, I was inspired to try hosting an event at a yoga studio because it was international yoga day. I dedicated a radio broadcast to the event (on KPFK-FM’s Experience Talks show I co-host and produce in Los Angeles), featuring Gary Glazner, the author of Dementia arts: Celebrating creativity in eldercare. (2015). Although my mid-day event was not well attended, I redoubled my social media and outreach efforts to be more successful when the late August, 2015 walk in Pasadena was held. In fact, I was asked to help recruit people who came to walk to sign up for TrialMatch (a clinical studies matching service that connects individuals with Alzheimer’s, caregivers, healthy volunteers and physicians with current studies under the auspices of the Alzheimer’s Association), and knowing the importance of research as an academician, the role was easy for me.
Act 4: Next Steps, On and Off Stage
I am now working on a concept called “HAF Fun” in which the power of story can be used for healing, advocacy, and fundraising while having fun – a necessary component of navigating the uncertainties of dementia caregiving while working with family members and care providers. At the Alzheimer’s Advocacy Forum in 2015, one presentation was by Stephanie Vance, the author of The influence game: 50 insiders tactics from the Washington, D.C. lobbying world that will get you to yes (2012). Serendipitously, I discovered that the last tactic is “have fun”! Getting to the goal should not feel like a chore, she notes, and indeed part of the fun in advocacy is knowing there is strength in numbers.
While I have discussed more about the A for advocacy so far, and a bit about the F for fundraising (a vast topic left for future writing!), the H for the healing element of telling my story here and sharing the stories of others is powerful. While there is a substantial body of literature published on the challenges of caregiving, I find inspiration and healing in finding the gifts. Books of note for me include Connie Goldman’s book emerging from her radio presence on aging at National Public Radio:(the hourlong program is included as a CD): The gifts of caregiving: Stories of hardship, hope, and healing (2002) and some of the works of Robert L. Kane such as The good caregiver: A one-of-a-kind compassionate resource for anyone caring for an aging loved one (2011), and (with Gaugler) Family caregiving in the new normal (2015). Kane is a prominent physician/gerontologist whose own family caregiving experiences have spurred his frank and practical advice in the former book, and a call to action in the latter.
Another healing book, written by a science writer and a physician, is The gift of caring: Saving our parents from the perils of modern healthcare (Houle and Eckstrom, 2015). This book captivates the reader with the real story of a brave and loving daughter, Marcy Cottrell Houle, who fearlessly advocates for her parents in the final years of their lives – combined with the practical advice of geriatrician, Dr. Elizabeth Eckstrom. They were guests on a radio show I co-host in Los Angeles on KPFK-FM, Experience Talks (www.experiencetalks.org), and noted in our interview that one feature of the book is soon to be accessible on their book website: an appendix of drugs which are keyed to a range of side effects. What a powerful tool for people who are on multiple medications, or even just one, if treating a symptom creates more in the process!
Networking with other storytellers including fellow author Lisa Fredman, a key figure in caregiving research (see Roth, Fredman and Hailey, 2015), and being able to “advocate for the advocates” through my radio and social media presence, are strategies that help me stay connected to my professional role as well as to validate that some of the experiences described in my testimony are not rare. Collectively, through our stories, we can make an impact on policy, education, research and practice (see more in Act 6).
Act 5: Why Story Matters
In the dementia caregiving journey, I have shared stories of care gone awry with many others who have written similar experiences. In my testimony to the U.S. Senate, I felt empowered being able to talk about several experiences, including one infuriating call to my mother’s ophthalmologist where he stated when discussing her glaucoma (she was 90 at the time), “It doesn’t matter if we treat it, she’s going to die anyway.” From my testimony, I note:
“Hanging up from this phone call made we want to hang up on being a professional in the field of aging. Not because I don’t want to continue to advocate for my mother or the many other elders undervalued in contemporary society, but because I felt like a failure and unable to do enough to help my mother, let alone my country. But the power in numbers brought me to Washington, and the power of words brings me to write this testimony. Yes, I am a professional in the field of aging and I have taught advocacy and I am not giving up. I just wish I could sleep better at night and not wake up too early most mornings, wondering if my mother will fall because she can’t see well and have to endure being cared for in a facility where typically staff are woefully undereducated. And I hope that things will be better for me someday if I too will lose my ability to remember when I went to bed or what I just ate or what medicine I need to take.” (Corley, 2015)
The increased federal research funding approved at the end of 2015, and passage of legislation in the state of California to update the 2008 physician Guidelines for Alzheimer’s Disease Management were no doubt influenced by the stories of family caregivers and even persons who have dementia. Prominent public figures like Maria Shriver (http://www.alz.org/shriverreport/index.html), and Meryl Comer (2014), who is Senior Advisor to Us Against Alzheimer’s and President of the Geoffrey Beene Foundation Alzheimer’s Initiative, have made an impact. However, there are many untold stories and with a growing number of coalitions including the aging network, providers of aging service, gerontology/geriatrics educators and researchers, there is more work to be done.
The Frameworks Institute report, Aging, agency and attribution of responsibility: Shifting public discourse about older adults addresses the central role of public narratives in the discourse on aging:
Narratives are powerful framing tools through which we organize, remember, and recall information. In keeping with the scholarly literature on narrative, FrameWorks defines a complete narrative as one that defines a problem or issue, states why this issue is a matter of concern, explains who or what causes the problem, provides a clear vision of an improved outcome, and delineates concrete actions that can be taken to remediate the problem. Importantly, “A coherent story is one in which the events are causally necessary for the occurrence of significant outcome states.”5 A central finding in this report is that a substantial amount of the information being communicated about aging and older adults in America is not organized as narrative in either media or advocacy materials. (O’Neil and Haydon, 2015, p. 5)
As this report was part of a collaborative, multi-method project sponsored by the Leaders of Aging Organizations (seven based in the United States) administered by Grantmakers in Aging, the outcomes of this project can be expected to provide substantial guidance for advocates in leveraging attention and support for increased funding for dementia research and programs, more effective policies, and a better prepared workforce.
A leading expert on storytelling in organizations, David Hutchens makes the following compelling statement about the power of stories in Circle of the 9 muses: A storytelling field guide for innovators and meaning makers:
“Storytelling is influence. And when you tell stories purposefully, you establish identity. Build culture. Speed the change process. Enrich the brand. Align people to the strategy. Attract talent. Engage the marketplace. Capture knowledge. Lead. Grow. Connect.” (Hutchens, 2015, p. xvii)
Act 6: Making an Impact
When I returned from Washington, DC from the 2015 Alzheimer’s Association Advocacy forum, just a few days later I was at a reception for Senator Bernie Sanders (Vermont) who was part of a program to encourage more active participation in political life spearheaded by author and inspirational speaker, Marianne Williamson. I approached Sen. Sanders and told him I had just been on Capitol Hill with 1,000 Alzheimer’s advocates and he responded: “Your group made an impact!” It was just what I needed to hear, and his words echo in my mind as I finish this manuscript with a final act on more ways to make an impact. Here I outline some possible avenues for PREP regarding dementia: Policy, Research, Education and Practice.
Policy
As I have learned through my advocacy and fundraising activities in 2015, there are many approaches leading to success and the work of numerous constituents is crucial. In the classic, popular guide on dementia, The 36-Hour Day (Mace and Rabins, 2011), advocacy strategies are outlined for caregivers to consider. Nancy L. Wilson from Baylor University recommends this site for caregivers on advocating through call/visits to legislators and it includes a list of advocacy organizations:
https://www.caregiver.org/advocacy-tips-family-caregivers
There is also an initiative at the Center for Elder Care and Advanced Illness at the Altarum Institute to get family caregiver issues on the party platforms in all states that generate party platforms: Caregivercorps.org
Scholars and researchers are frequently called upon to testify (e.g. Richard Hodes, M.D., Director of the National Institute of Aging provided testimony at the U.S. Senate Select Committee on Aging hearing March 23, 2015), and it would be interesting to interview experts about their experience at the U.S. and state Capitols for advising others about effective strategies resulting in “wins” such as the record increase in funding for Alzheimer’s research in FY 2016. The Frameworks Institute report already cited has valuable information on how the media and advocacy sectors portray policy issues, and this work will help inform aging leadership organizations on situating stories to engage politicians in attending to the issues that will advance policies that best serve persons with dementia and their families.
Research
In July, 2015 I attended most of the Alzheimer’s Association International Congress (AAIC) on a media pass, seeking to balance my experiences of advocacy with exposure to the scientific community of over 4,000 attendees in Washington, DC. One full day of the 4.5 day congress was devoted to clinical dimensions, and I had an interest in seeing how qualitative methods were incorporated into studies, particularly narrative. After one session that focused on families I spoke with the lead researcher asking if qualitative methods were considered, and the reply was “that sounds like a great idea! Do you have any instruments you can recommend?”
Since my days of studying multivariate analyses in graduate school I have segued into the qualitative arena more recently, and see the need for fostering research where the voices of persons with dementia and their caregivers are heard. My interest was spurred in part by then-doctoral student Sara Sanders in the 1990s whose responses to her mailed questionnaire to family caregivers had a very high response rate with many comments and stories (Sanders and Corley, 2003; Sanders, Morano and Corley, 2002).
Studies of individual narratives, combined with rigorous population based studies, is crucial to providing accurate and realistic data for advocacy and ultimately optimal care. Roth, Fredman and Hailey (2015) report that the larger public image of informal caregiving portrays it as a health hazard, while an examination of a series of studies shows otherwise.
With the increased funding for Alzheimer’s research approved by Congress and signed into law by President Obama, research opportunities will grow and along with it, ideally, a growing cadre of meticulous researchers.
Education
For decades there have been reports about the shortfall of experts to work with older adults, and here I focus on social workers in particular given that my teaching and research has largely addressed programs and policies concerning mid- to late-adulthood. Through organizations such as the Association for Gerontology Education in Social Work and various programs funded by the John A. Hartford Foundation’s Geriatric Social Work Initiative, there has been substantial improvement in the capacity for social work programs at the bachelor’s and master’s level to access curriculum materials and offer resources to faculty and students (see http://www.cswe.org/CentersInitiatives/GeroEdCenter.aspx) and support for scholarship at the doctoral level and for emerging scholars. Pre-doctoral funding through the Association for Gerontology Education in Social Work has been continuous for nearly a decade.
At the same time, student interest in gerontology in 8 universities (2 outside of the United States) was consistent with prior studies assessing student interest in working with older adults: fewer than 10% expressed this desire. Engaging students in advocacy through specialized lobbying efforts (e.g. an annual Legislative Lobbying Day in Sacramento held by California social work programs), and including older adults as well could be one avenue for exposing students to elders as well as seeing them in active, contributing roles. Including students in lifelong learning programs, as the Lifelong Learning Program at California State University, Los Angeles has done for over a decade, is another way to bring an intergenerational focus and live engagement with elders in community settings.
When I was teaching an undergraduate course on “social policy and aging” an emphasis I added at the outset was advocacy, using the excellent text, Elder advocacy: Essential knowledge and skills across settings (Huber, Nelson, Netting and Borders, 2008). It focuses on case studies and advocacy at the micro as well as macro level of practice. Many students can connect with the case examples in the book with stories in their own families and having a practical guide like Elder advocacy can enrich classes in practice as well as policy.
Practice
One of the most rewarding aspects of my career has been the opportunity to work with a number of professionals across various disciplines, and the stellar opportunities to both mentor and be mentored in gerontology and geriatrics. As my career has evolved into learning more about leveraging stories to engaging others in the process, I have followed the John A. Hartford Foundation’s Change AGEnts initiative (The John A. Hartford Foundation, 2014) which has created a new focus on transforming care through practice change. The Dementia Caregiving network (Alan B. Stevens and Nancy L. Wilson, Co-Chairs) has launched two Action Projects, one which is the creation of “community-friendly” tools and evidence-informed materials to better situate decisions of providers and family caregivers, and the other is compiling reliable and culturally sensitive tools to assist in identification and access to support services for persons in the initial stage of dementia.
Another Change AGEnt initiative is the formation of Action Communities, in which workgroups engage in communication and create projects related to specific topics. The “Stories for Change” Action Community launched in 2015 aims to offer knowledge, skills and other resources for Change AGEnts to develop and curate stories that re-frame the conversation around aging and open pathways to improving the care of older adults. Co-led by Scott Kaiser. MD from the Motion Picture and Television Fund and me, we are engaging researchers, practitioners, educators and elders in strategies to curate and disseminate stories through webinars and a virtual library.
Conclusion
In the last half-century, much has changed in the world at large and in the aging field: terms like “aging in place” have been replaced with “age-friendly places” and the word dementia is no longer preceded by “senile”. Expressions like “70 is the new 60″ abound (although birthday cards have yet to catch up!), even though a World Health Organization report states “70 is not the new 60 – but it could be” (WHO, 2015). Along with the positive psychology movement, came positive aging. There is excitement and the lure to stay in the field through engaging with the growing gerontology and geriatrics networks, and engaging with colleagues internationally as I did on a recent trip to China with a delegation of the Gerontological Society of America. Here’s an example of an upbeat vision from the World Health Organization report (part of which was presented at the 2015 Annual Scientific Meeting of the Gerontological Society of America):
…the report aims to move the debate about the most appropriate public health response to population ageing into new – and much broader – territory. The overarching message is optimistic: with the right policies and services in place, population ageing can be viewed as a rich new opportunity for both individuals and societies.” (WHO, 2015, p. 3)
Stories can offer to expand the experiences of individuals to the experiences of populations. Although I heard the expression, “if you’ve seen one person with Alzheimer’s Disease, you’ve seen one person with Alzheimer’s Disease” it is through the stories of those with such a diagnosis, and those who care for them – whether families, friends or professionals – that we learn and get inspired. As the world population of elders grows, so too will the concerns about the costs of dementia care and yet it is also an opportunity to learn about resilience, empathy and compassion, and so much more.
Through my sojourn shared here, starting with my young adulthood into being a card-carrying “senior” I find my sense of agency has expanded, and the year 2015 was a landmark for me personally as well as for the legislative actions federally and in California. This agency in advocacy has led to this storytelling, part of my legacy.
I close my case (i.e., case study as an autoethnography) with a quote by Gaugler and Kane (2015) in Family caregiving in the new normal: “In the end the personal and scholarly /academic dimensions of family caregiving are not so easily entangled.” (p. 13) INDEED!
Acknowledgements
The author wishes to thank Lisa Fredman, Alana Saltz, Lisa Gwyther, Nancy Wilson, Alana Saltz and Corley kin for guidance and support.
References
Alzheimer’s Association. (2015). 2015 Alzheimer’s disease facts and figures. Alzheimer’s &
Dementia, 11(3), 332-384.
Alzheimer’s Association. (2014). 2014 Alzheimer’s disease facts and figures, Special report on
women and Alzheimer’s Disease. Alzheimer’s & Dementia, 10(2), 53-63.
Chonody, J., & Wang, D. (2014). Predicting social work students’ interest in gerontology:
Results from an international sample. Journal of Gerontological Social Work, 57(8), 773-789.
Comer, M. (2014). Slow dancing with a stranger: Lost and found in the age of Alzheimer’s.
New York: HarperOne.
Corley, C.S. (2015) Testimony for the March 25, 2015 Senate Select Committee on Aging
Hearing, “The Fight Against Alzheimer’s Disease: Are We on Track to a Treatment by
2025?” Submitted April 1, 2015. www.conniecorleyphd.com
Elder, G. H. (1974). Children of the great depression: Social change in life experience.
Chicago: University of Chicago Press.
Erikson, E. and Erikson, J. (1997). The life cycle completed (Extended). New York: Norton.
Gaugler, J., & Kane, R. (2015). Family caregiving in the new normal. London, UK: Academic
Press.
Glazner, G. (2014). Dementia arts: Celebrating creativity in elder care. Towson, MD: Health
Professions Press.
Goldman, C. (2002). The gifts of caregiving: Stories of hardship, hope and healing. Minneapolis,
MN: Fairview Press.
Houle, M.C. & Eckstrom, E. (2015). The gift of caring: Saving our parents from the perils of
modern healthcare. Lanham, MD: Taylor Trade.
Huber, R., Nelson, H. W., Netting, E. F. & Borders, K. W. (2008). Elder advocacy: Essential
knowledge and skills across settings. Belmont, CA: Thomson.
Hutchens, D. (2015). Circle of the 9 muses: A storytelling field guide for innovator and
meaning makers. Hoboken, NJ: Wiley.
Kane, R. (2011). The good caregiver: A one-of-a-kind compassionate resource for anyone
caring for an aging loved one. New York, NY: Avery.
Kelley, A. S., McGarry, K., Gorges, R., & Skinner, J. S. (2015). The burden of health care costs
for patients with dementia in the last 5 years of life. Annals of Internal Medicine, 163(10), 729.
Mace, N.L. and Rabins, P.V. (2011). The 36-Hour Day: A family guide to caring for people who have Alzheimer Disease, related dementias, and memory loss (Fifth edition). Baltimore: Johns Hopkins University Press.
O’Neil, M. & Haydon, A. (2015). Aging, agency and attribution of responsibility: Shifting public
discourse about older adults. Washington, DC: FrameWorks Institute.
Roth, D.L., Fredman, L. & Hailey, W. E. (2015). Informal caregiving and its impact on health:
A reappraisal from population-based studies. The Gerontologist, 0(0), 1 – 11.
Sanders, S. & Corley, C. S. (2003). Are they grieving? A qualitative analysis examining grief
in caregivers of individuals with Alzheimer’s disease. Social Work in Heath Care, 37,
35-53.
Sanders, S., Morano, C., & Corley, C. S. (2002). The expressions of loss and grief among male
caregivers of individuals with Alzheimer’s disease. Journal of Gerontological Social
Work, 39, 3-18.
The John A. Hartford Foundation 2014 Annual Report (Rep.). (2014).
Retrieved http://jhartfound.org
Vance, S. (2012). The influence game: 50 insider tactics from the Washington, D.C. lobbying
world that will get you to yes. Hoboken, NJ: John Wiley and Sons.
World Health Organization. (2015). World Report and Ageing and Health (Rep.). Geneva,
Switzerland: WHO Press.