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Posted: June 16, 2004

Professional Caregiving

A Professional Caregiver?s Agenda

Why a column?

From my perspective of nearly 25 years in the field of aging and management, I believe my insight into the field will help family caregivers who are struggling with their eldercare challenge as well as provide a shot in the arm to my professional caregiving colleagues. Help is needed on both of these fronts.

To make this column a success, it will have to be an exchange of views and experiences ? a forum, in a sense. I will want you to share your views on what works in our business, what needs transformation, what trends we see are down the pike and what to do about it.

I have experience in non-profit service delivery and direct caregiver contact. I have been involved with state association management and numerous boards. Understanding the needs/wants/demands and desires of our market can only happen through discourse. So, this column is designed to be interactive -- addressing questions, comments and ideas you bring to my attention.

I will write from my corner of the world, but have no claims to having THE answers. Are there THE answers? Probably not, which is why pooling our best efforts in solving our industry?s issues, enhancing the lives of the families we serve and thus enhancing ourselves and our businesses is what I hope comes out of this. Other than my professional work, I also have had a number of family caregiving experiences.

My father?s heart disease and leukemia struck him in his late 40?s. This gave me, a college student, hands-on family caregiving experience with the care of a sick and ultimately dying parent. My mother and our in-home worker did all of the day to day caregiving, but on my visits home for the summer, until his death at age 53, I spent hours in the hospital, in his bedroom with him as he fought the angina and lethargy his illnesses produced.

I have also been in the role of parent of a child with undiagnosed developmental problems, which from age 6 months on appeared enormous: Could he hear? Will he talk? Will he walk? Therapies, special speech and language programs, special educational systems, IEP?s, and all the parent advocacy that goes into ensuring that his abilities be recognized, his interests be challenged, and his need for modifications be done in such a way as to promote the greatest success and independence. (He is graduating high school this month! We are so proud of him!)

My grandfather, I surmise now, had dementia in the last year I saw him after his move to Israel in his 70?s. When visiting him there in my 20?s, he didn?t recognize me or know who my mother was when I tried to explain who I was. I was stunned never having come face to face with dementia, nor having a name for it!

Times change. Each of these experiences have left an indelible mark on me, and I always try to remember how I felt as a family member when talking with the professionals -- the doctors, social workers and therapists -- in each of these circumstances. It has been helpful along the way to try to keep good experiences as a part of my work and to be aware of those things I swore I never would do that, in fact, were done in my family?s experience with illness and disability.

I hope this column becomes a place for:

Transformation. Didn?t someone once say, ?If it doesn?t change, it?s not alive,? and thus our work, our goals, our market and our success will evolve over time as conditions change. Over the course of my 23 years in the aging industry, I have seen, participated in and even developed new models of care that brought a greater impact through better care. Caregivers, whether family or professional, find themselves evolving as conditions change and we will be talking about those areas that have seen change, or those needing us to be the change agents. Together we can transform the way care is delivered in the future, drawing in larger pools of prospective caregivers to support the geometrically expanding numbers of prospective care receivers.

Transformation has been a central motivator in my work. In 1988, I co-authored and published a book, ?The Positive Interactions Program,? which is a model for successful engagement for professionals and family caregivers of those with dementia. This led to training and consulting alongside my adult day care work. Most recently, in addition to managing four adult day centers for the American Red Cross in St. Louis, I am trained in life and business coaching, and have started a coaching practice, LifeWork Transitions (check out, in which I work with successful folks wanting to achieve caregiving, relationship or career goals.

Looking at what works and sharing it. This column can trigger the sharing of new ideas, new practices and creative solutions to some very ?stuck? situations. For example: staffing incentives for quality care and increased retention, design of care settings that promote self-esteem, new models, such as Person Centered Care, or the household design of many assisted living settings.

Also, what is working in the home? New equipment for safer bath and shower care, organization techniques to promote independence for the single person in the early stage of Alzheimer?s disease, new models of home care delivery? Responding to questions, comments and ideas will be integral to this column. We need to be ?talking? to one another.

Looking at what?s broken and inventing solutions for their repair. This column will address the parts of our care delivery system that, simply said, don?t work, don?t respond to our needs, don?t speak our language, are not easily accessed or understood. I know for example, in my many years of working in adult day care, the public just does not seem to understand the amazing impact day services can have on adults who attend, and no less, their caregivers.

Despite its being around for over 30 years throughout the country, every week I hear about folks who ?finally? call us and realize after the first week that they could have used us years earlier, but thought they were not ?ready.? Yes, denial may be a big part of it, but also, the image many have of day services is that of a nursing home day room. If people could only hear what our caregivers say to us about the enormously positive impact day care has had on them, some professionals and family caregivers would seek it out sooner. We need to figure out how to crack that nut.

Sometimes the obvious is not so obvious and my hope is that our readers will bring to our attention areas that could use creative solutions.

Discourse about what clients, patients, and customers are asking for, dreaming about and demanding ? and how to satisfy them. We, the professionals, often think we know what the clients really want, but surveys, interviews, and the like can shed a critical light as we design our care delivery system. Family caregivers are invited to speak up and tell us, the professional caregivers, what would make their lives easier, have greater quality, and satisfy them so as to enable them to carry on the task of caregiving for as long as possible, without risking their own health in the process. We need to hear from you!

Discourse on how we keep our businesses, and our life work, relevant to the community of families we serve. This is an important area for the professional caregivers, because if we know the statistics, our industry of caregivers is going to have to double within the next decade. Relevance to our clients, financial viability and the evolution from ?jobs? to ?careers? at ALL levels of care is critical in maintaining and growing our industry of workers. Redefining roles, reexamining workable staffing ratios, reviewing salary implications and other issues are central to why our industry is not growing as quickly as the need. Discussion is the best way to get clearer on the issues that we need to bring back to our professional associations and organizations.

A number of years ago, I published an article in Contemporary Long Term Care Magazine in which I made a case for re-looking at how hierarchical our organizational charts were. The folks who provided the most important work, the direct care, are still at the bottom of the pay structure. These are the folks who make a facility what it is, and quality caregiving is what our customers are demanding. How can we offer it if we ourselves don?t value the power and skill of the direct care worker, in influencing the care delivered, to say nothing of the bottom line? This is a highly charged problem that is very complicated because it will require a rethinking of how we do business. Still, I know there are skilled workers who may have the best input on the way to improve our care, improve their job satisfaction, and increase retention rates which are disastrous in some of our industries.

I look forward to connecting with you, and through this discourse I hope we engage our minds and hearts in continually stretching to provide the best of what we do for our present and potential customers, clients and families.

I look forward to hearing from you. Contact me at or


Sylvia Nissenboim is a licensed clinical social worker and who has been working in the field of adult day services in the St. Louis area. She is the director of four adult care and enrichment centers for the American Red Cross and also operates a personal and professional coaching firm, LifeWork Transitions, specializing in caregiving concerns, adult day care management and other aging services, such as virtual coaching and family care giving support groups. She co-authored The Positive Interactions Program, is a national speaker, and has served as president of the Missouri Adult Day Care Association and as a member of the Missouri Governor's Advisory Council on Aging..

© 2004 Pederson Publishing, Inc. All Rights Reserved.
Commercial use, redistribution or other forms of reuse of this information is strictly prohibited without the prior written permission of Pederson Publishing.

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