Many ways to advocate

Advocating does not have to mean getting on a soapbox. It can take the form of quiet leadership from wherever you are in your organization or community. Sometimes simply treating elders in a different way and setting an example can be a form of advocating for change. Leading by example is a good “quiet” way to begin. Looking at the formal policies of your organization and making sure they are in line with stated values can also be a start. If they are misaligned, pointing that out and suggesting new policies may move things in the right direction.

There are also ways to advocate outside your organization that can lead to helpful interventions or support for residents and, therefore, your efforts at care as well. In his essay “Learning to be a Caregiver, Trying to be a Brother,”

1 Timothy Sweeney recounts his journey through the many roles he had to play while caring for his brother as he was dying. One of them was as insurance and program advocate. He guided his brother through the process of becoming eligible for Medicaid and a number of other support programs. For just about every resident in a community, there will be a family caregiver struggling with insurance and financial issues on behalf of the resident. You might find that these caregivers have frustrations similar to yours about the impact of policy on your partnership in caring for the person. Advocating for policies both inside and out of your organization can lead to stronger care partnerships and better support for the resident and family members.

For example, does organizational policy encourage helping family caregivers understand payment and insurance issues that may arise if the resident is receiving services such as physical or occupational therapy? Might a social worker or other professional be placed in this role? When we review policy we often find areas where we can make a change to improve care or form a partnership that will help to do so.

Sometimes, advocating can be as easy as joining a group already organized to work toward change that makes good sense for both optimizing care outcomes and business development goals in long-term care (LTC). Cass Naugle, executive director of the Greater Maryland Chapter of the Alzheimer’s Association, suggests that simply by going to the national Web site, www.alz.org, anybody can get information on joining the efforts in each state to change regulations about Alzheimer’s care.

Naugle points out that Alzheimer’s is a growing concern. This year, the first of the 80 million baby boomers turned 65, which Naugle identifies as the “official age of risk” for Alzheimer’s disease. We can expect, she states, about one in eight of these boomers to develop dementia. These numbers mean that understanding and preparing for greater expertise in caring for those with dementia will be essential for LTC providers. Working with partners in advocacy and education associations can be critical to keeping abreast of issues that affect service in our communities.

For example, Naugle describes a partnership in Maryland in which the Alzheimer’s Association collaborated with researchers at Johns Hopkins University to look at the prevalence of dementia in assisted living communities. At the time it had not been measured and guesstimates were that 20% to 40% of residents had dementia. The study found that in 2004 “two-thirds of assisted living residents in central Maryland were diagnosed with dementia, and more than one-quarter of residents had other psychiatric ailments, such as depression, anxiety disorder, or psychosis.”2 The Alzheimer’s Association provided experts for an advisory group to this ongoing study, and when the results came in, it partnered with the Mid-Atlantic Non-Profit Health & Housing Association (MANPHA, now part of Mid-Atlantic LifeSpan Network) to get a regulation change that requires all new workers in assisted living to receive dementia training. The Alzheimer’s Association has subsequently trained thousands of new assisted living employees throughout the state.

Working with partners in advocacy and education associations can be critical to keeping abreast of issues that affect service in our communities.

This is an example of an advocacy effort where, through working with partners, care can be enhanced. Elders who have “aged in place” in a community and developed dementia over time might not be receiving the support they need. With these types of partnerships in place, developments in the field can inform the changing landscape of care we will all need to keep in mind as the LTC business matures, and crucial decisions about our work will be made with us at the table. LTL

Judah L. Ronch, PhD, is the Dean of and professor at the Erickson School, University of Maryland Baltimore County, which offers undergraduate and Master’s degrees in Management of Aging Services as well as online and live Executive Education programs and customized industry training. He can be reached at

JudahRonch@UMBC.edu.

References

1. Sweeney TJ.“ Learning to be a Caregiver, Trying to be a Brother.” In: Levine, Carol. Always on Call: When Illness Turns Families into Caregivers. Nashville:Vanderbilt University Press, 2004.
2. Stockton T. Elderly in Assisted Living Facilities Have High Rates of Dementia. The JHU Gazette: The newspaper of the Johns Hopkins University. October 25, 2004.Available at: www.jhu.edu/~gazette/2004/25oct04/25elder.html

Long-Term Living 2011 April;60(4):14-15