I recently attended a clinical geriatric symposium at UCSD, so this month I wanted to write about some of the things that were discussed there on dementia. I would also like to share about an article in this month’s Atlantic about a long term care community in the Netherlands where residents with dementia are experiencing something unusual. The experience also happens to be quite compelling to many memory care specialists from around the world who visit their community regularly.
Everyone is looking for answers to handling this incurable disease.
First, here are the facts and figures:
The Director of Research for Senior Behavioral Health at the Stein Institute for Research on Aging, Dr. Ipsit Vahia M.D., told us that there are currently some 30 million people with dementia. He said that number would reach over 80 million by 2040. To say this is overwhelming is an understatement.
Currently public health costs for dementia patients are estimated at 90 billion annually, both direct medical costs and indirect costs in lost productivity. Dementia is the third most costly disease after heart disease and cancer.
Prevalence of the disease is 1% at age 60 and the rate doubles every five years. By age 85 over 30% have the disease.
There are five main categories of dementia: Alzheimers 50-60%; Vascular dementia 15-20% ; Diffuse Lewy Body disease 15-20% ; Parkinson’s dementia 1-3% ; Frontotemporal dementia (Pick’s Disease).
There is currently no cure for dementia. The status of research is that trials using anti-amyloid agents to reverse amyloidopathy have proven unsuccessful. Vaccines are in development and “anti-tau” agents are the next targets for intervention.
The medications used with dementia are: Donepezil, Rivastigmine, Galantamine, SSRI’s, Gabapentin, Trazodone, mood stabilizers and rarely benzodiazepines.
None of this clinical information helps much when you’ve got a loved one with the disease. If you have the disease the one thing you most desperately need is something you cannot buy. It is not a medication. What is most needed is to feel accepted and loved and to have a sense of belonging.
This brings me to the second part of this feature; I want to call your attention to an article in the Atlantic this month about a nursing home in a small village outside of Amsterdam called “Hogewey.” Here, over 150 residents with dementia are experiencing something unusual: an environment that de-emphasizes illness and emphasizes an experience of community and belonging. CNN labels Hogewey a “dementia village” in an interview. Here, those diagnosed with dementia come and live together in a community where caregivers are dressed as normal people and 24-hour surveillance cameras monitor residents. There is only one door leading in and out of the town, which safely allows residents to feel and act like they are still functioning members of a society, rather than being trapped in a care ward.
This “village” seems to be doing a great job at producing results that clinical interventions have yet to duplicate.
Dr. Paul Newhouse, Director of Vanderbuilt University’s Center for Cognitive Medicine, agrees saying “the environmental approaches to reducing both cognitive and behavioral problems associated with dementia are really the key to improving quality of life for these patients without excess medication.” Clearly, the power of connection and relationship in community cannot be overemphasized.
Another well-known study with 678 Catholic nuns written about widely cites the fact that the nun’s brains studied after their deaths found that in those who were identified to have dementia, the expression of the disease had been blunted. Among other preventive factors identified in in the study, what was in common with Hogewey were groups of people living in supportive communities emphasizing positives instead of negatives; what remains instead of what is lost; joy and love instead of fear and isolation.
Until we have hope for treatment, a cure for this terrible disease, and communities (and funding) that can support more humane care structures and programs, may all of us care managers, those who work with dementia patients or have family members with the disease, recommit ourselves to loving and caring for them.
May we find every opportunity to reinforce their sense of joy, dignity, connection and self-worth.