This week's blog is about presentations in the Patient and Care Partner Track of the 2019 International LBD Conference that we attended recently in Las Vegas.
Several people living with early stage Lewy talked about their experiences, with an emphasis on the fact that although they have the disease, they are still the same person, albeit with more limited abilities. This loss of abilities has led to their need to find other ways to feel usefull. Family members, including Robin William's wife and Ted Turner's daughter, talked about their experiences and their loved one's journeys. In future blogs, Rosemary Dawson will be telling about these interesting speakers. Today's blog is a summary of some of the other presentations. I will cover several of the topics much more thoroughly in future blogs.
Partnering with your Medical Team. Dr. Melissa Armstrong, Florida, presented methods for partnering with your medical team. Her main points: a) know yourself and your loved one, b) help your team get to know you, c) identify your team, d) partner with them, and e) continually reassess.
Dealing with Fluctuations an Hallucinations by Tanis Ferman, a pioneer in LBD-related behavior management. Highlights were a discussion of what fluctuations and hallucinations are and aren't, why hallucinations occur, their connection to emotions, and some management suggestions. Along these same lines, Dr. Boeve, another LBD pioneer, talked about Coping with RBD but didn't provide any literature.
Evidence based Strategies for Supporting Care at Home by Laura Gitlin, Dean of College of Nursing and Health Professions, Drexel University. Laura advocated changing the cycle of care from an unhelpful one with little care or patient/caregiver input to a more hopeful one, with patient and care partner participation.
Four Pillars of LBD Care and Empowerment, by our own LBDA staff member, Angela Taylor. The pillars are 1. Advance preparation, 2. Use outside resources, 3. Care for yourself, and 4. Leverage your experience.
Non‐drug Approaches for Care Partners to Use When a Loved One Living with LBD has Behavioral Symptoms by Rosemary Dawson and the Whitworths (yes, us!). Although Dr. Ferman talked about hallucinations and Dr. Boeve talked about RBD, our poster was the only other presentation specifically about dealing with behavioral symptoms. We identified dementia-related behaviors and listed a variety of non-drug therapies. It is quite thorough and can be accessed via our website and used by group facilitators or others who want to spread the word about dealing with these bothersome symptoms with fewer drugs.
End of Life and Use of Hospice Care in Patients with Dementia with Lewy Bodies. Briana Arman, Cleveland U.. Briana's poser showed that while hospice was often utilized, it was seldom for more than a few days or weeks. While new regulations have made it difficult for someone with only dementia to go on hospice, people living with LBD usually have other physical conditions that would help them qualify. However too many people still believe that hospice is only for the final days.
Staying Connected and Living Well with LBD, by Allison Killen. The founder of the Lewy Body Society in the UK presented this as being informed, focuses on the positive and involved and discussed various aspects of this.
Thriving Through Singing, by Mary Lenard. The co-founder of Giving Voice talked about how singing, especially in groups, fosters well being, purpose, community and understanding. Her group inspires and equips organizations to bring together people living with dementia and their care partners to sing.
Finally, a few other bits of information we picked up:
A Canadian poster pointed out the importance of social media for support for those in rural areas, and especially for those dealing with early onset dementia. (Or I'd suspect, any kind of rare diseases where even in an urban setting, specific support groups would be limited.)
We found it interesting that researchers discovered no significant evidence of age-related decline in adults over 60 without LBD. For researchers, this is of concern due to possible over-correction for "age." For the rest of us, it means that we can't claim "senior moments" as easily...and that they are more likely evidence of early MCI! (But also, let me remind you, of stress.)
Microbleeds (small chronic brain hemorrhages) in patients with DLB were related to high blood pressure but not DLB or AD. (We wondered if they were related to vascular dementia?) They were associated with less severe attention, visuospatial dysfunction and less parkinsonism.
The next blog: More conference information.
For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.
No comments:
Post a Comment