News for Healthcare Professionals From ALS/MND Conference
The Allied Professionals Forum (APF) held in Philadelphia on December 1 was part of the 12th annual meeting of the International Alliance of ALS/MND Associations and the International Symposium on ALS/MND.
This education conference drew approximately 250 healthcare professionals from countries all over the world. Issues of clinical practice for people with ALS and their caregivers were discussed by allied heath professionals throughout the day-long event.
Co-sponsors of the APF were The ALS Association and the ALS Hope Foundation. Contributing support for the event was generously provided by Aventis, Novartis Pharmaceuticals, the Farber Family Foundation and DynaVox Technologies.
A summary of highlights from the presentations for healthcare professionals follows. PowerPoint presentation slides from the speakers will be available via a link from The ALS Association’s web site within the next few weeks.
“Kid’s Day:” A Psychosocial Model for ALS/MND Families
Marlene Ciechoski, M.S., R.N., USA
It is widely known that ALS is not only an issue facing patients and caregivers. It encompasses the entire family, including children. Throughout the early years of child development and into adulthood, children face many anxieties and threats to their emotional and psychological wellbeing. Adding ALS to this already complicated development process can prove to be extremely challenging. Parents tend to shield children from the reality of the disease. Healthcare professionals must further address the diverse concerns of families and begin to develop models of care around family dynamics.
In her presentation, Ciechoski described an annual “Kids Day” program provided by the ALS Hope Foundation. “Kids Days” are designed to promote family networking, discussions of shared concerns and opportunities for children and grandchildren of people with ALS to express their thoughts and feelings about the disease and the ever-changing family situations. The evaluation of this program demonstrated its value and importance for the entire family.
Supporting PALS to Regain Control Over Their Lives: Interventions and a Tool
Meraida Polak, R.N., B.S.N., USA
It is not unusual for people with ALS to feel that their lives are out of control. Anxiety and depression are common associated feelings that can lead to denial as a coping mechanism.
Polak presented a PowerPoint presentation tool designed to: 1) assist patients in identifying aspects of their lives over which they have lost control, 2) understand the advantages and disadvantages of treatment choices that patients face (PEG, NIV, hospice, etc.) and 3) distinguish between emotions over which one does not have control and actions and behaviors that can be controlled. The presentation has been used successfully with a group of people with ALS and their caregivers.
In conclusion, in order to help patients understand what they realistically retain control over, the treatment team, including family members, and the patient themselves, must first identify and reassess periodically what the capabilities of patients are.
Dementia in ALS/MND: How to Recognize It and Practical Strategies for Management
Jennifer Murphy, Ph.D., USA
Michael Strong, M.D., Canada
Dallas Forshew, R.N., B.S.N.
Investigators have demonstrated a link between ALS and a spectrum of frontotemporal lobar dementia (FTLD). The cognitive changes in ALS are more common than previously recognized and range from mild to moderate, and in some cases includes disturbances. It appears that the cognitive impairments are progressive in some people; however, clinical management strategies can be helpful and supportive for patients and caregivers.
J. Murphy
It is important to learn more about the selective frontotemporal in the brain so that we can learn how to manage it. This will also help us better understand ALS. Tools used for diagnosis include screening and diagnostic assessments. Thirty percent of families are not interested in an evaluation to diagnosis this. There is a lot of guilt involved.
M. Strong
Dementia challenges the paradigm of how many of us view ALS, adding more of a cognitive component than has been appreciated in the past. Bulbar patients seem to be at greater risk, yet there is no consensus as to the percentage of those affected by the frontotemporal degeneration.
Tau protein is being deposited in the brain in a manner similar to Alzheimer’s, but not quite the same.
D. Forshew
Cognitive impairment in ALS has been shown to impact patient decision making concerning treatments such as PEG and NIPPV.
Clinical management strategies are focused on the following cognitive problems with patients:
- Inability to focus
- Lack of insight, poor judgment
- Mood and personality changes
When there are behavioral changes, language, spatial orientation, calculations, memory, motor behavior and pain recognition may all be impaired. It is important to teach patients and families about these changes, communicate with them and help them understand and accept interventions.
Medications that some clinicians are prescribing include:
- Valium
- SSRIs (antidepressants)
Behavioral interventions have been found to work well early in the course of cognitive changes. Redirecting behavior may work as well. There are a range of strategies for families that will help support them and teach them how to make things easier and comfortable for the patient.
Clinicians are encouraged to perform simple, bedside tests to screen patients. Further, more extensive testing is necessary to diagnose cognitive impairment and to clarify the character and degree of cognitive impairment that is occurring.
Playing for Extra Time – A Case Study in Tracheostomy Ventilation in Home
Richard Sloan, M.D., UK
Tracheostomy ventilation for people with ALS/MND is used much less frequently in Great Britain compared to North America. Some reasons for this difference include issues related to funding, ethics, access to respiratory care and home support.
Dr. Sloan documented the perspectives of a patient and his family as the decisions around tracheostomy ventilation, immediate and long-term care and the challenges and hurdles that had to be overcome. With clear and well communicated aims from the patient, the benefits of tracheostomy ventilation can be a positive experience for all concerned. Sloan went on to say that patients with ALS and incipient respiratory failure should be informed about the option of ventilatory support along with the benefits and challenges associated.
The Ten Commandments for the Management of ALS were developed by Forbes H. Norris, Jr. MD formerly of the ALS and Neuromuscular Research Foundation at California Pacific Medical Center in San Francisco, Calif., USA . Sloan highlighted the importance of these precepts for healthcare providers. A link to the Ten Commandments follows: http://www.cpmc.org/services/als/about/als_ten.html
Supporting Staff – How Do We Keep Staff Healthy, When We Can’t Keep Them Wealthy and Wise
Rodney Harris, Australia
Harris noted that providing support services for people with ALS/MND is valuable and rewarding; however it can create challenges for professional and lay staff. Stressors include serving a population with rapidly changing needs, having limited resources, large workloads, grief and loss issues and trying to meet expansive expectations.
A program for staff support was developed, implemented and evaluated. It included weekly staff meetings, periodic team meetings, case presentations, reflective group supervision, up to six counseling sessions for individual staff, flexible working hours, informal social events and extra help when the workload peaked. The evaluation of the usefulness and value of this program was quite positive and benefited the individual staff and the MND organization.
Harris recommended that all organizations working with ALS/MND should develop an integrated staff support program. This should be done in conjunction and consultation with the staff. A program should include regularly scheduled team meetings and group debriefing, reflective group supervision and access to funded external counseling and support.
