Palliative Care instead of “pseudomedicine” for dementia?

[public domain image / Pixabay.com]

A few  months ago, doctors from the Memory and Aging Center in San Francisco wrote a Viewpoint that criticizes the rise of  unproven remedies for dementia, including Alzheimer’s, saying that there is a “troubling increase in ‘pseudomedicine.’ Pseudomedicine refers to supplements and medical interventions that…”lack credible efficacy data. Practitioners of pseudomedicine often appeal to health concerns, promote individual testimony as established fact…and achieve financial gains.”

I submitted a Letter to the Editor of that journal, to mention at least one study with efficacy data for a supplement (from that same journal!), the difficulties in doing that kind of research, as described by experts, and to state that introducing a “palliative care concept” at diagnosis might help families who are desperate for solutions.  The letter was declined for going beyond the scope of the original article.

So what is Palliative Care?  In pediatric oncology, we used to think of it as a prelude to end-of-life hospice care, but it has expanded to be a supportive care umbrella.  Some teams introduce the idea of palliative care right at the time of diagnosis, even when the expectation is cure, just because the care needs are so challenging. It may be called something else, but it’s a way to provide complex support.

One definition:  “Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people living with a serious illness. This type of care is focused on relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.”

So here’s my Letter, submitted 19 Feb 2019, declined 15 Mar 2019:

Palliative care instead of pseudomedicine for dementia?

To the Editors:

Hellmuth, Rabinovici, and Miller shared their Viewpoint that many remedies are marketed to dementia patients and families without scientific evidence of efficacy; the FDA Commissioner recently voiced similar concerns (1, 2).  However, I think the Viewpoint lacks three important considerations: 1) not mentioning any published work on OTC preparations, 2) not mentioning the daunting tasks of doing academic research in this arena, and 3) not more fully addressing the needs of these patients, driven to those remedies given the current lack of disease-modifying agents, and numerous reports of failed trials.

It is curious that the authors cite papers highlighting the problems of vitamin E, widely available OTC.  Why did they not cite positive research on vitamin E and dementia, some of which has been published in the JAMA Network?

Dysken et al, in this Journal, published a study of over 600 patients that showed a positive effect of high dose vitamin E. (3) Evans and co-authors in the accompanying editorial (4) point out some issues in this double-blind placebo-controlled randomized controlled trial, but also praised the general trial design and execution. They also point out that in this study, FDA-approved memantine seemed to lack efficacy.  Of course, other studies do show different results, which can be expected in honest science.

Investigators have tried to ask questions about whether some OTC agents might be useful in preventing cognitive decline. DeKosky and Schnieder (5) discuss the daunting task of analyzing prevention data, including clever “piggyback” studies of large cohorts, in their editorial about one such publication (6).  A reader would conclude that it may be unrealistic to expect any breakthroughs soon.

So, despite the enormous efforts of clever and brilliant investigators, and the formidable tasks in doing the research (including overcoming the discouraging history of failure), where does that leave a patient or family? 

The Viewpoint suggests that patients and families need a better understanding of what doesn’t work.  In cancer care, some advocate a “palliative care” approach right from the time of diagnosis, perhaps refining a focus on quality of life, expectations, and symptom management. (7) While there are cognitive therapies and other non-drug options for dementia patients, with varying levels of evidence and efficacy, should all patients with cognitive decline be offered palliative care at diagnosis, given the harsh reality that nothing really works to “cure” or modify these diseases (8)?

R.L.

References:

1. Hellmuth J, Rabinovici GD, Miller BL. The Rise of Pseudomedicine for Dementia and Brain Health. JAMA. 2019;321(6):543–544. doi:10.1001/jama.2018.21560
2. Gottlieb, S. Statement from FDA Commissioner Scott Gottlieb, M.D., on the agency’s new efforts to strengthen regulation of dietary supplements by modernizing and reforming FDA’s oversight. Feb 11, 2019. https://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm631065.htm. Accessed Feb 18, 2019.
3. Dysken  MW, Sano  M, Asthana  S,  et al.  Effect of vitamin E and memantine on functional decline in Alzheimer disease: the TEAM-AD VA Cooperative randomized trial.  JAMA. 2014;311(1):33–44. doi:10.1001/jama.2013.282834
4. Evans DA, Morris MC, Rajan KB. Vitamin E, Memantine, and Alzheimer Disease. JAMA. 2014;311(1):29–30. doi:10.1001/jama.2013.282835
5. DeKosky ST, Schneider LS. Preventing Dementia: Many Issues and Not Enough Time. JAMA Neurol. 2017;74(5):508–510. doi:10.1001/jamaneurol.2017.0045
6. Kryscio RJ, Abner EL, Caban-Holt A, et al. Association of Antioxidant Supplement Use and Dementia in the Prevention of Alzheimer’s Disease by Vitamin E and Selenium Trial (PREADViSE). JAMA Neurol. 2017;74(5):567–573. doi:10.1001/jamaneurol.2016.5778
7. Epstein AS, Morrison RS. Palliative oncology: identity, progress, and the path ahead. Ann Oncol. 2012;23 Suppl 3(Suppl 3):43-8.
8. Livingston, et al. “Dementia Prevention, Intervention, and Care.” The Lancet, vol. 390, no. 10113, 2017, pp. 2673–2734.