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Tuesday, May 1

The Alzheimer’s Epidemic

Ellen Leon Carbonell, MSW, LCSW

The Alzheimer’s Epidemic: How an Exponentially-Growing Disease Will Affect Your Social Work Practice, and What You Can Do

Here are the facts:

  • There are 5.3 million people diagnosed with Alzheimer’s disease in the United States
  • One in eight older Americans has the disease
  • Alzheimer’s is the sixth leading cause of death in the United States and is the only one with no treatment, no cure, and no disease-modifying medications available
  • Half of people over the age of 85 have signs of the disease
  • Over 15 million Americans provide unpaid care for a person with Alzheimer’s or a related dementia
  • Caregivers experience high levels of depression and emotional stress, financial drain, increased need to adjust work to meet their caregiving needs, and physical health deterioration as a direct result of their caregiving

Alzheimer’s disease is growing exponentially as baby boomers are aging into the years associated with high risk for dementia. Of the six leading causes of death, the rates of the other five decreased by 3 to 29% between 2000 and 2008. During that same period, on the other hand, the rate of Alzheimer’s disease increased by 66%. Unless some treatments are developed that can moderate this rate of growth within the next five years, the impact of this disease will bankrupt the medical care system as we know it.

These are the facts. As a result of what we are up against because of this disease, the public face of Alzheimer’s disease has begun to change. Articles appear in the press far more now than even five years ago, and people are beginning to see Alzheimer’s disease as something that starts with stages in which the person with the disease can talk about what’s happening to them and inform the public. Businesses are responding by learning about the impact of caregiving on their employees and are helping to educate them in record numbers. Awareness is in motion.

But are we as social workers prepared for the impact?

There are two ways in which I believe that social workers need to make adjustments in order to keep current with the needs that are being generated by Alzheimer’s disease.

First, we need to recognize even if our work is not directly with those who are this nation’s growing number of seniors, every area of our clients’ lives may be dramatically impacted by Alzheimer’s at some point. Any person who has parents in the high risk age category may find him or herself providing hands-on care or managing care provided by others along with adjusting to the changes that the disease brings over a number of years. These family caregivers are at the age in which they may be raising children or grandchildren in their homes. The current financial climate increases the need for these caregivers to also be providing an income for their families which adds work schedules onto their list of issues to manage and juggle.

Children, grandchildren, and even great-grandchildren are also affected by the adults in their lives who struggle with the disease themselves or as caregivers.The stressed adults who are providing care may be less available to these children in many ways, and when they live together, the impact may be felt daily. Social workers in child welfare and school settings recognize the impact that this stress has on their clients. Regardless of who our clients are, we as social workers need to recognize that Alzheimer’s disease and other related dementias may be touching the lives of our clients in ways that we have not yet recognized or addressed. We need to begin asking questions about this of our clients, and to learn as much as we can about the disease, its progression, and the effects on those around them.

There are practical ways to begin to address the unmet and often unidentified needs that increasingly affect our clients. Consider doing the following:

  • Add questions about whether anyone is providing care for another adult on registration and intake forms, and begin to think of caregiving as a potential stressor on family systems.
  • Because caregivers may not identify themselves as such, ask questions about whether anyone in the family lives with a diagnosis of any disorder. Include questions about what role your client has in providing care in intake interviews.
  • Continue to explore this impact as treatment unfolds, asking about the impact of caregiving in sessions or meetings with clients and family caregivers.
  • When your clients are children, include a series of questions about who in the family needs extra care attention from the parents, and help both your clients and parents understand the impact on the entire family.
  • Assist caregivers with recognizing the need for additional help as the person’s disease progresses, and help them with locating quality resources.

The other way social workers need to adjust is to alter our thinking about our work with seniors, cognitive disorders, and end-of-life issues. Our field has made these changes in the past, as we have addressed the needs of those affected by cancer, substance abuse, HIV/AIDS, and sexual abuse. All of these issues have required that we look at ourselves and those around us with open minds, ready to learn and put our learning to use. Many times, social work has led the charge to help the public address difficult issues and think in new ways. The same is required of us now regarding the Alzheimer’s epidemic.

Working with seniors has long been seen as working primarily with issues of grief, loss, and custodial care. The end of life has been seen in this country as something to be avoided at all costs, and our medical community has been built around this premise. The hospice movement, however, has allowed us to begin looking at the end of life differently, as a time to come full circle and provide the dying with physical and emotional comfort. However, I believe that we have tended to see that process as somewhat disconnected from aging itself. Work with the aging is about loss, just as all of life touches this issue. But it is also about living life to the fullest, finding meaning and moments of joy, and helping people connect with the core of who they are. This is not just about loss; it’s about fulfillment and interconnection. It’s about facing the fact that we are all mortal, and that life is about experiences, learning, and using what we learn as we develop over time, and letting go of that which is beyond our power to understand or control.

So who better prepared than social workers to take this work head on? This is what we do, and the need for social workers to reassess work with the field of aging and take it on has never been more critical. Here are a few things to consider doing to prepare yourself as a professional whose work will be touched by the oncoming wave of aging Americans:

  • Get educated about the facts of aging, caregiving, and dementia by attending programs and conferences on these topics. Many offer CEUs, and some are available online.
  • Conduct a thorough exploration of your own feelings about aging and death and how they affect your work.
  • Push yourself to move beyond outmoded ways of viewing aging which focus exclusively on loss; actively engage in a viewpoint that incorporates seniors taking on new challenges that have the potential for emotional growth and invigoration.
  • Armed with a new understanding about how issues of aging and caregiving affect entire family systems, begin to incorporate this perspective directly into your work.
  • Consider that the field of aging is one of the few areas of our work guaranteed to grow in the next few decades.

The aging of the American population is happening now, it is exponential, and the need for social workers in the field of aging has never been greater. We need to prepare to meet this need, and we can begin now by making some simple changes to our practices. By doing so, we enrich the lives of our clients and ourselves as professionals.

The rewards of working thoughtfully and intentionally with those affected by Alzheimer’s disease are there for the taking, full of both joy and sorrow, reflecting the essence of life itself.

Ellen Leon Carbonell, MSW, LCSW, is associate director of family programs for the Alzheimer’s Association’s national office. She is responsible for developing and producing dementia-related family programs for chapter implementation nationwide, and oversees caregiver and early-stage support group programs for the association. Trained as a clinical social worker, Ellen has thirty years of experience working with individual and family programs in mental health, vocational, educational, clergy, and voluntary health care settings. She is a Licensed Clinical Social Worker in the state of Illinois and is a member of the American Society on Aging.

Posted on 05/01/12 at 09:06 AM


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