So what works well to enhance the lives of People Living With Dementia (PLWD)?
A huge state-of-the-art review for helping PLWD, and caregiving research, was published this week, a 229 page download from the National Academy of Medicine (NAM).
[That question about enhancing lives wasn’t the explicit task of this work; it was more to review the relevant research on effective care interventions with the aim to implement things that work.]
It’s a complicated formal document: “Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward.” The Chair was Eric Larson, a National Academy Member, KP dementia researcher, author and UW Clinical Professor.
The initial parts of this “white paper” describes the general needs of the several million persons living with dementia in the US, their “care partners” (which they basically define as a point person who takes on certain aspects of care) and caregivers (sometimes the same person, sometimes others, doing hands-on care).
Determining what works well (looking at interventions from exercise to music to cognitive training) turns out to be a hard question to answer. They report on a strict efficacy review of over 600 published studies, grading the studies on their strength of evidence; over 2/3 were initially considered inadequate, and others were whittled away for other reasons.
The committee “was disappointed,” [preface], since the efficacy review showed that really only two interventions had passing grades. Both are variations of support programs. One is called “collaborative care,” evidently focused more on the PLWD, and the other called “REACH II,” more focused on caregivers. The report recommends they be considered for wider implementation.
So there are still gaps in defining effective interventions on an individual level, and there are opportunities for better research to find implementations that would improve quality of life for PLWD, their families and care folk. There are discussions and recommendations for those issues.
Home caregiving, especially during the COVID-19 pandemic, has the CareGivingOldGuy (COG) focusing on the nitty gritty of daily living issues: the little positive reactions, and when things seem to work, to the little irritations, and the daily chores.
It’s interesting to glimpse at the bigger picture, and how folks are attacking the problems of caregiving for PLWD, and to glimpse at the vast chaotic problem and tangles of complexity (yes, Medicare and payers are discussed); it makes COG grateful that others are trying.
In the meantime, COG is doing “research” too, using empiric methodologies and subjective measures: what beverages seem most acceptable lately, when to rotate seating, the best ambient temperature, and what music changes seem best. Afterall, the report says that even though the music therapy studies weren’t strong, that’s not to say music doesn’t help, and the risk/reward seems reasonable!
The “care partner” concept seems particularly relevant to us, but it underscores a perspective: a person living with dementia is an individual, so that effective enhancement must be individualized. Research goals for effective outcomes can be generalized (like fewer ER visits, cited for collaborative care, or subjective measures of caregiver well-being, for REACH II programs). but it might take a very flexible intervention to be effective (if one is needed at all), or maybe it just takes a village.
from the report, fair use claimed
[Disclosure: this blogger is listed as a volunteer advisor on the report, and was given the privilege to see the draft of a few chapters, also participating in a Zoom discussion several months ago.]
